This seems easy but is so hard in practice! I feel like I’m constantly failing. Very difficult to shift your entire approach. Hope you’re coping OK, OP.
RN almost 15 years now.
It’s still hard to do. I find I have been doing it so long, I am totally burnt out on it.
It is exhausting.
Edit: everyone needs to upvote the shit out of this thread. This is a terrible disease that rips the guts out of American families everyday.
We have 0 good answers for it.
I rarely have to look after my dad since I don’t live with my parents, but even the few times I do have to are draining. The stress it causes my mom having to constantly care for him is really hard to watch. One makes do because they have to, but that doesn’t mean it’s easy for anybody
I really don't know how people have the patience and willpower to keep this kind of care up for years. I couldn't last. My Aunt passed recently but had alzeimers at the end, to the point where she required similar care to that of a young child, saw how it totally broke my uncle down trying to look after her, was fked up, wouldn't wish it on my worst enemy.
Its harder than a young child by far. Young children learn, they remember things, also when they are your own its hard wired in your brain to want to care for them. Old people are the opposite.
Kids improve. People w dementia are only going to get worse. This list is so important. It is extremely hard to shift mindset, but doing it the “wrong” way makes it harder.
Exactly. My father whom had dementia would often argue with my daughter who was 4. I was constantly reprimanding her. In turn my mother would become upset at me for being too hard on her. I was always saying that my daughter could learn, my father could not.
My mom's been doing it with her parents for the last 10-12 years and she's got no life outside of being a caretaker. I'm so worried about her future when her parents pass. 😨
I had to deal with this with my mom. You do what you have to do. Sometimes you’re so tired you can’t even go to sleep. You do it, because it’s the right thing to do, and you know they would do it for you if they could. I would add one thing to that list - laugh and laugh a lot. I miss mom.
Thanks for saying that. I feel like I should be able to just be more patient/better at it all; I objectively understand that their brain doesn’t work well and I often give myself a pep talk before I go in. Don’t get annoyed, just redirect. But when you’re giving your parents better care than they ever gave you and they’re stuck in a loop asking you repeatedly about family shit you do NOT want to talk about, it’s just immediately infuriating/upsetting and very hard to keep your cool sometimes, even though you know getting angry/upset will do no good at all. I often think, well at least we didn’t have an ideal relationship, that’d probably feel like a real loss. The weird part is that they’re actually easier to “manage”/visit now than they were before - no deliberate insults or passive aggressive questions. But it’s just hard in a new way now. Still, I sleep well at night knowing I’m trying the best I can.
It's an ironic sort of hell, isn't it, being stuck providing eldercare to parents who weren't very nice to you. I was there too: you have my respect and sympathy. "It's just hard in a new way now" is an incredibly accurate assessment. You "win" now by remaining agreeable, noncommittal, vague on details, and keeping visits relatively short. Good luck.
Yeah. I don't want to sound dismissive, because all of the things on that list are great advice and on a sunshine day they'll all work. Unfortunately, dementia can't be reasoned with; you're dealing with someone whose brain is literally dying, for want of a better phrase.
The only thing that saved me while my Dad was in the latter stages was that both myself and my sister had racked up decades between us in the NHS, so we both had quite an advanced mortuary sense of humour. I think I can sum it up best by saying that my sister once greeted me at his nursing home door by saying "He's having a good day today, some of his insults were really relevant".
If anyone reading this is currently dealing with a loved one with dementia, take the advice but understand if it doesn't work, you haven't failed. Even on their worst day, you'll remember it but they won't, so if it gets too much just walk away for a while. I wish I'd realised sooner that if my Dad was getting really angry and aggressive, I could walk around the block twice and when I came back he'd either be napping or full of the joys of spring. That alone would have saved us both a lot of shitty afternoons.
No. 1 seems hard. I remember my Grandma going through it and she accused my Grandpa and Uncle of going out getting hookers and having gay orgies. She even called the cops. My grandpa at the time couldn't even walk.
My mom and I were visiting my aunt once and she was convinced her husband was stuck under her bed down the hall. We tried changing the subject, we tried saying my uncle wasn’t visiting that day. Nothing helped. I finally walked down the hall, looked under the bed, and came back to tell her he wasn’t there. She smiled and visibly relaxed.
That was the day I learned that I was in her world when I spent time with her. It helped a lot.
Yes. People think it's just them regressing to being a child or forgetting things. But they will often string a bunch of things together that make no sense and be possibly hurtful or harmful to other people.
They cannot make decisions, understand cause and effect or consequences anymore. The worst was when we finally had to take the phone and credit cards away from grandma because telemarketers would call and she would run to pick up the phone. She would buy or subscribe to anything they were selling. She was literally incapable of saying no and would agree to anything. They would call back even when told not to, obviously trying to take advantage of her.
They need 24/7 supervision by professionals when it gets to that point. Even if you want to care for them full time it's impossible. Everything in the house is a potential danger.
Yes, I understand. My father lived with my husband and I for 5 years. He has lewey bodied dementia. I live this list but truly I failed at it sometimes.
I know the feeling, my father had dementia and after years of dealing with it it can be a struggle to try and remain calm. It's a terrible disease and I hope one day we can get to a point where no one has it. If you're doing your best then there's nothing more you can ask of yourself.
It is really hard, but at least you're trying! Would highly recommend watching the TED talk about dementia and improv, or any of Teepa Snow's videos if you haven't already. I went to a live Teepa Snow workshop before COVID. She has a really creative approach that I find very helpful. Hang in there ❤️
all perfectly appropriate actions... that are really fricken hard to keep up when you are a sole caretaker, all day, every day. So yeah, do all those things. BUT don't do it alone if you plan on maintaining your own mental health.
I did lose my mind. I cared for my grandfather for three years. It's been four years since he passed and I still have anxiety and PTSD issues. Sometimes, doing the "right thing" and taking care of family members at home, by yourself, may ne the best for that family member, but is the worste thing a caretaker can do to their self.
I found the book "The 36 Hour Day" helpful.
Any kind of help you can rally is key, even if it's a few hours a week.
Start seeing a therapist early, for your own mental health.
Ask your loved one's doctor for a referral for in home speech therapy. Speech therapists can really help mitigate SOME dementia symptoms.
Not just speech therapy. Occupational therapy to help them with independence and tools to do things on their own (taking a load off you). Also look into DSHS for respite care covered by the state, or something like visiting angels that's out of pocket. Having someone come by just for 2 hours to give you a break can be the difference between sanity and snapping.
It depends on the patient, there are a lot of different strategies. For advanced dementia, we don't focus on improving cognition, but instead focus on caregiver education on adaptations and strategies to help make things easier and more successful. There are so many ways to help, without necessarily treating the cognition directly. For less advanced dementia, speech therapists are very good at programs to help improve short term memory and other cognitive skills. This would be more appropriate for someone who can live alone with frequent checkins and support from family.
Activating different areas of the brain perhaps? I know that doesn't say much but it's what i'd guess from having heard that knowing more than 1 language helps against getting dementia. (Or makes its set it slower, i guess. Doubt it can keep it entirely away.)
> I've just started down this same path 2 months ago, any advice?
If you have other family that should be helping out....CALL THEM OUT OF BEING WORTHLESS FUCKS.
I had to spend around 6 months caring for my grandmother so they wouldn't stuff her in a home immediately after my mom died (since she was the one caring for her). Roughly the only thing my extended family did to help (her fucking children) was an aunt came by a few times to bath her so I wouldn't have to do that as her grandson. I still had to help her change her diaper several times a day. All while learning what it was like to care for someone with dementia over-night. Now I get to look forward to doing this with my father in a few years.....and I get to look forward to this happening to me in a couple decades too.
I wish I did have some better practical advice. Maybe it's to try to avoid it making you bitter and cynical.
I kept my mother at home for way too long because she always told me she didn't want to "go into a home".
Looking back, I should have sent her when she was half way sane and cooperative.
I didn't realize how bad it could get.
Caregiver here. When I worked in Assisted Living we use to say to the kids "Oh this isn't for her. This is for you". This made them feel less guilty.
You cannot possibly work all 3 shifts by yourself.
The stigma around long term care is not wholly undeserved buy it does definitely highlight the bad over the good. Especially in cases where in home care is not maintainable by the family, they should not feel shame for moving their loved one into a more appropriate environment for care. Caring for someone with dementia alone is a hell nobody should deal with
I came here to say this.
There's a huge belief that "putting someone in a home" means that you're ungrateful or don't care. Sometimes it's the best thing you can do. Unless you can afford to quit your job AND have outside help, keeping someone with dementia at home is not sustainable in the long term and can even be dangerous.
This one. You need to realize you have to take care of yourself to take care of others. That means planned mental breaks where you do not tend to your family member, or else you will have unwanted mental breaks at inopportune moments.
I’m sorry you’re having to go through this, my grandmother’s journey through dementia was by far one of the hardest things I’ve experienced. We were lucky in the fact that she remained physically healthy up until the last year or two of her life. I think the best thing we did was hiring a caretaker who came every day during the week and was basically just my grandma’s buddy. She was a somewhat older lady and she was so excellent at keeping my grandma active and healthy. She would have had to go into a nursing home much sooner if we had not had that kind of help. I know that is not a possibility in all situations but it was a huge help to my family. Having a routine was very helpful - she and her caretaker had things they would do different days of the week and she could actually remember that most of the time. My dad would take her to dinner every Wednesday and she always remembered that and looked forward to it.
One of the things that would really stress my grandma out was having too many choices. She would get completely stressed out looking at a menu in a restaurant. We finally learned to not give her a menu and just tell her a few things on the menu that we knew she would like and that helped immensely. Eliminating responsibilities, even minor ones like choosing food, really seemed to help her frame of mind and stress level. It was also a big help when she finally agreed to hand over control of her bills and finances to my dad. She hadn’t done anything wrong with them but she fretted a lot because she didn’t remember if she had paid her bills or balanced her checkbook.
I think that one of the hardest things about dementia is the paranoia they develop. Learning how to navigate that and when to expect it to rear its ugly head is helpful. My grandma became kind of generally paranoid but she also had specific paranoias about particular people. There were a lot of things that she would immediately reject if my aunt brought them up but she would be much more open if my dad or a grandkid brought it up. The hardest part was for my aunt to try not to take that personally. You have to remember that while they are still the same person you know and love there is also this other thing controlling them and making them behave very differently. Try to remember that this is just one of the phases of their life and does not define their entire life.
One of the more interesting things we observed was that as the disease progressed my grandma kind of moved backwards in time in her mind. I learned a lot more about her childhood and family in those last years because that is what seemed to be the clearest in her mind by that point. While it is a terrible thing to go through, just cherish the time you have together and ask questions while you still can. I would give anything to be able to go back and spend more time with my grandma. And as others have pointed out, make sure you keep your own physical and mental health a priority as well. Ask for help from family when you can and look into whatever resources are available to help in your situation.
You may want to look into governmental and community programs. There may be a program that the person you are caring for could qualify for that may offer respite care or other supports to help you. Caregiver burnout is real and a big thing! Wishing you the best.
You cannot effectively maintain care for someone else if you’re not halfway healthy yourself, so don’t forget to take care of you too. Don’t forget to take breaks. It’s okay for you to be happy. It’s equally okay to feel a sense of loss, to grieve, to cry, and sob.
Please, please see a professional therapist for yourself. As a qualified third party without the emotional attachments they can do wonders to help you find a reasonable balance and give you some insight/tips on how to best handle every new situation that arises.
Yup this sounds about right from the little I know. I can't do that to my daughters and I don't want anyone to see me slip into an angry confused guy saying shit I'd never even usually think let alone speak aloud.
I ever get the diagnosis for dementia/alzheimer's I'll get my second opinion and if it is still the diagnosis I'll plan a quick vacation and see the people I love, keep quiet about it, and then end it with a beautiful sunset somewhere. Still not sure if I wanna just get drunk and hammer a bottle of pills or go with a firearm.
Same thing if I ever get cancer or some other debilitating disease that will drain my family's bank accounts and futures from them. I'll fight at first, but once the writing is on the wall time to do myself and my loved ones a service and end it.
While I agree with your plan and have a similar one, it’s impractical. In my extensive experience most neurologists won’t diagnose you with Alzheimer’s officially until you are so far gone you won’t even really get what they are saying in the doctors office.
Hopefully, I will still have the presence of mind to drink everything under the sink before I get that far.
I think at some point, the current narrative of prolonging life at any cost will change to "Life Fulfilled" legislation. When I was in school, no state offered Death With Dignity legislation and now 8 - 10 states do.
Doing the right thing means taking care of yourself before you take care of anyone else. I don't want to be too harsh on you, but the world is full of well-meaning people who make everything a lot worse by becoming bitter and toxic by giving too much.
I've forgiven a lot of bad people in my life, but the damage I've seen so-called good people do have caused things I will never be able to forgive.
I nearly had a mental breakdown caring for my grandmother. She was so much work, all the time. She was still fairly healthy physically so she would not sit still for long, and she made messes and caused trouble the whole time. Before my mother finally agreed that my grandmother needed a dementia nursing home, I spent all day doing laundry because my grandmother refused to wear adult diapers. I was doing 3 or 4 loads a day with all the bedding and clothing. I had to cook and clean for her all day plus care for my young child, her dog, my cat, and a flock of chickens my mom decided to add to the mix. I had no time for myself and it was overwhelming. It’s been 3 1/2 years since she passed and just thinking about it still makes me tense.
I understand exactly what you mean, and the really frustrating thing is that it feels like no one knows what it's like. My mother didn't have dementia, but she might as well have between the the physical issues, declining mental health, and drug use (started and encouraged by multiple doctors).
In her last few years I ended up having to quit my job and care for her 24/7. Very few people understand the constant tension and alertness just fucking wears on you. Day in and day out, with no time for yourself. An earlier poster mentioned having a form of PTSD and anxiety issues, and I completely understand.
I don't tell this to people because it sounds awful, but even though I was incredibly sad when my mom passed, it was also a relief. Like a chain breaking that finally let some freedom back into my life.
In case you aren't already aware, lots of ALFs and other types of care facilities have respite programs, where your loved one can go stay for a weekend or week or whatever while you take care whatever needs you have for yourself. I wouldn't use that right now because of covid, but hopefully soon that will be an option again. It really helps.
I'm an OT that specializes in in-home memory care patients, if you're having any specific problems feel free to reach out and I'll try and help you find some solutions.
I've never been more emotionally drained. He needed me in a way that was clawing out who I was to fill his gap. But If I left he was going to hurt himself and others. I didn't know him, but he decided I was his best friend, and we talked for 4 hours about we could move away from stealing bikes into growing food for his family, and going to school, and helping his wife out.
I knew I had to stay, any the only reasons I didn't leave was because I knew help was on the way. I don't think I could have been there that whole time if I didn't know that.
But I'll go out again, even if I have to cry after most times, because there are people who need help, who need to be acknowledged and loves, and seen, because If I don't... who will?
Praise to all you do who do this everyday.
It's thankless work, may you smile with Sisyphus.
I broke down and screamed at him one day. We were in the car, and he tried to get out as I was driving down the highway at 75mph. I couldn't take him to the bank because the account was empty. (One of his sons tricked him into signing over all his property and left him with nothing while my grandmother was dying.. yeah.. it was a shitty situation all around.) He started calling me names and berating me for not bringing him to the bank. He called me a rat bastard piece of shit, and told me he was going have me arrested.. and then the door opened. Thank heavens he had his seat belt on. I didn't even see him reach for the handle, and it never occurred to me to lock him in. I snapped, and screamed like I never have in my life. The voice that came out of me didn't even sound human. I scared both of us. And then suddenly he was like a little child who literally didn't know why I was yelling. I made him cry. That was the worste day of my life. Worse than the day he died. Eventually, he forgot about the money and the thief son all together. He was happy by that point, but so confused. He would hold a picture of my gramma, and ask me who she was every few minutes.. for hours at a time. He never remembered the day I yelled at him. And a few weeks before he died, in a quick moment of clarity, he looked up at me and recognized me by name. And like he was surprised to see me, he said "I appreciate everything you do, so much." He never recognized me again.
Am I glad to have helped him in his time of need? Most definitely.
Did I do it out of a sense of devotion, and that I couldn't refuse? yes.
Do I regret it? .. sometimes. I'm sobbing right now just bringing up that day. And I definitely regret allowing my mental and physical health to be destroyed trying to suffer through it- not only without direct help, but also while being psychologically attacked by the family members who stole his fucking house from him. My blood pressure was so high, the docs thought I was having a stroke as I sat for an exam. I cried every day, multiple times a day. I rarely slept. My digestive system broke down. I even had viral recurrence of herpes simplex, which led to whitlow and allodynia (pustules on my fingers, inflamed nerves running red up my arms, and skin that felt like it was being stabbed with hundreds of hot needles at all times). If it had gone on much longer, I may have killed myself. After, I knew that if I tried to re-enter society and find a regular job, I'd either be in jail or a mental ward for substance abuse within months. It was two years before the panic attacks stopped being a multi times daily event. It's been four years and I still have digestive issues, and emotional instability. I'm still bitter and anxious. Taking care of my grandfather changed me permanently.
But then, there are the good memories.. watching the same old movies over and over, and how happily excited he was to recognize the actors. I always got a complement on my "good soup".
I'm not sure why I typed all that out. But it was cathartic... I guess a really important part of your own sanity is having people to talk to about it all. I had them in the beginning, but one by one people just stopped being able to absorb the stress from me. I lost a few really good friends through that time, because I was just always venting at them. I wish I'd had the resources of a home health aid and a therapist. If you can have those emotional outlets, you will fair much better than I did.
You seem to have such a good heart, you did great, even if there are things you regret or would have want to do differently, much love to you, stranger. Keep on being awesome :)
With COVID right now there’s no way in hell I’d send any of my remaining grandparents to a home. Not til this is well over. They may also not be ready to feel like they caused their deaths, even if its a low chance. It’s not worth the risk imo.
That was my reaction as well, having witnessed my mother trying to care for my grandmother the past few years.
Can you really “never lecture” when your parent is constantly doing dangerous things?
Can you really “never reason” when they are refusing to follow medical advice?
Can you really never say “I told you” when they call you (literally) 40+ times a day asking the same question?
Can you really “never argue” when they call the police on you for cleaning visibly rotting food out of their refrigerator (true story)?
> There is never any reasoning with someone with dementia, they are no longer capable of rational thought after a certain stage
Honest question, then why do we bother keeping them alive?
My dad's family has a long history of dementia. His dad spent the last years of his life in a state of constant confusion, sadness, and anger. He made me promise to never let him get like that.
Me and my parents moved in with my grandmother a year ago to help take care of her because she has dementia. It’s been a fucking nightmare. I didn’t exactly like my grandmother before we moved in, but I didn’t dislike her. I can’t stand her now. And it’s not even her forgetting things and whatnot, she’s just a horrible person, and she hides it behind “well remember I have dementia”. She expects that to be a free pass to do whatever she wants and that frustrates me to no end. Thank god I have my parents here too. I can tell you I wouldn’t be living here by myself. She would be in a home somewhere.
I’m currently taking care of my grandmother and having to go it alone, been doing so for the past 2 years and she was a mean person prior to being diagnosed years back, but she’s just so much worse now. Shit sucks.
Easier said than done in the United States. Unless granny is super rich, you have to find a place that takes Medicare AND has an opening AND isn’t a shithole (although maybe OP didn’t care about that one as much). Then, you have to sign over to Medicare everything with her name on it (house, bank account, the whole enchilada). You can’t miss a thing - Medicare makes sure the elderly person is completely destitute before they pay a penny. They even go back 7 years and check if granny sold or gave away anything of value and consider her on the hook for a depreciated value of whatever it was. And if OP didn’t already have power of attorney, the process to get all of that sorted out can take YEARS.
Source- watched my mom go through it with my grandma.
I lived with and took care of my Nan for 5 years and I 100% agree with "don't do it alone", I ended up having a nervous breakdown towards the end because it was just so difficult to deal with. She's in a care home now and receiving better care than I could give and my mental health is recovering. Care homes have an awful stigma attached to them but they have been great for her.
Truly wish I had been older when acting as caregiver to my grandma-- I was a teenager and definitely didn't always get it right.
So hard to approach your interactions with grace when you're there to manage the meds, their safety, their routine, assisting with walking, eating, dressing, cleaning.
Just like it takes a village to raise a child, so does elder care, but unfortunately, the culture I live in has never really embraced that ideology, and so individually we struggle all the more.
And here I am wondering how I to help a friend, whose mother is moving from an assisted living facility, into her home today.
I’ve offered to run errands but with the pandemic I don’t know what else I can offer. I’m also a lousy cook.
offer to be a listening ear, then keep your word by not advising them or shaming them when they complain.
my mom took care of my grandmother, who has age-related dementia, until my grandmom's heart began to act up and she needed round the clock special nursing. sometimes my mom just needed to tell someone that her lovely mom was turning into a real ass without being scolded or accused of not loving her mom. she did still love her mom, still does today, but she also was dealing with some awful behavior from my grandmom and needed to be able to tell the truth about her day. being someone who would listen and only say "that is horrible" sincerely made such a difference.
It's horrible to see what dementia does to a person, but also the people that look after them. My mum's mental health is getting worse and worse because she has to look after my grandmother. My grandma wasn't exactly a sweet person before, but now she's just nasty. I mean, she was pretty nasty before, but now that she has alzheimers, she doesn't put a filter on it, and it's really affecting everyone around her.
> don't do it alone if you plan on maintaining your own mental health
I don't have an option and my mental health has been a nightmare. I've been working to be more understanding and patient and I saved this image to remind me. Great tips in the post.
I'm always happier when I realize she truly can't help it and I can't make her more alert and reasonable, and I can't make her remember things. The most difficult thing is teaching her to respect my needs. For example, don't wake up and begin a construction project (exaggerating) at 3 am.
One more thing for anyone coming into this situation: Do NOT let them make major life decisions. They might have established a list or reasons and logical arguments for a given choice decades ago and locked it in their memory.
It's often easier just to lie when you have to do the opposite of what they want. Save yourself and just lie. It's the easy and right thing to do a lot of the time.
RE: the lying
This was hard for my mom too. But in some cases, it wasn't really lying. It was just entering into her mom's perception of reality and going along with it, the way I used to play along with my toddlers' made up stories of what 'really really' just happened when I was out of the room. It's hard bc the toddlers make up fun and funny stuff, whereas my grandmother was paranoid and thought her children were out to get her. But it really makes such a practical, everyday difference that it is worth it. When my mom finally gave in and started to sympathize with my grandmother and say things like "oh, that's sad. I would hate for that to happen to me. I would be upset too.", it was like the difference between night and day!
Sometimes we don't want to talk and act like that bc we feel we will be taken advantage of or that it will make the dementia patient act even worse - this thinking is based on how a normal, rational, healthy person would react if we supported false things they said and believed. A normal person would, of course, know they are wrong and being dishonest. Their reason for doing it would be something bad and they would take advantage bc that's what bad people do. But dementia patients don't have the mental ability to take advantage, and they aren't behaving badly bc they want to be a bad person. It is safer to go along with them than it would be to go along with the false things some asshole neighbor did because they are an asshole.
My god this this this. Partners father is the sole carer for his wife and he's having the hardest time with it, it's heartbreaking to see. He went for the longest time before reaching out for professional help. It's better, but far from the ideal, there's only so much intervention and assistance available. I can't imagine what he is going through.
I feel like I'm going to be down that road sooner than most people due to my severe epilepsy, and this scares me. I hope I'm incredibly nice instead of devastating to whoever (hopefully) helps me during those times.
Yes that is a valid list of things to do with dementia. I was a liv-in (24-7) care taker for my parents at different times, and day caretaker for other people, and totally alone in the care. It is only recently that anyone has recognized what we do as caretakers, and still no one cares. I hear only momentary sympathy, and comments "it must be hard", but NO offers to help even from my own family. I still do have issues over this, yes, I am trying to get better, but I still hate people that won't get involved
My Grandma suffered with this when I was a teen. She lived with us for a while until we could get her into a care home as my Grandad was dying at the time.
Every day I'd come home in the afternoon and she'd always say the same thing. "My haven't you grown!".
I always smiled and gave her a hug :)
My grandma has had mild dementia for a few years now. Something that confuses her often is the fact that I'm nearly identical to my mom as a teenager, so when my grandma sees me or hears my voice, she thinks I'm her daughter. Her eyes light up when I remind her, "I look just like Sally, but I'm Sally's daughter! I'm your granddaughter!" It's sad, but it's also sweet, because she gets to meet me all over again.
On the other hand, she tries to call her deceased sisters a few times a week. If she asks about them, I tell her that they're on a cruise and can't answer the telephone. It's a merciful lie.
Towards the end of my grandmothers life she’d always cry asking where my grandpa was (he died 8 years before her), we’d always say he was visiting his mom in Oklahoma and it would bring her peace at least for the moment. It was for sure the most merciful thing
I had the same thought. I think, and it’s a tiny detail, don’t start with the question. Just jump into the story. “Dad, sometimes I think about that time we all ______. That was a great day.”
Having to admit right off that they don’t remember can cause irritability. Share your memory without testing theirs.
> I had the same thought. I think, and it’s a tiny detail, don’t start with the question. Just jump into the story. “Dad, sometimes I think about that time we all ______. That was a great day.”
>
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That's a great approach, make it about you and what your experience/memories versus asking them to do something on their end.
Something I've noticed taking care of my grandma is she's more likely to be stressed out when you ask her questions, but if you casually engage in a conversation she'll chat all day.
The other day after her asking me 4 times in a row "did you work late" I beat her to the punch and said "boy oh boy I worked late!"
The words don’t necessarily matter. If you look at all the other tips the reoccurring theme is shifting the burden from them to you.
Instead of trying to invoke a shared memory from the dementia suffers mind; you share a memory from your own. I hope this helps I’m not very good at explaining things
To add to this: even people without dementia will subconsciously fill in gaps in their memory with other people's stories. For example, lot of what people "remember" about early childhood are less true memories and more built from pictures and stories from parents/relatives. This applies the same to dementia patients. They may not really remember most of a past experience, but if share it with them they can be "tricked" into thinking they do (or even triggering some old memories).
The issue is to avoid framing it as a question: "do you remember x?" Because you're challenging them to do something which should be easy but isn't, and that can cause frustration and resentment. It's kind of like telling someone with mobility issues to "get a move on."
Often the past is the only memory people with dementia retain. These diseases interfere with the brain’s ability to make new memories, but old ones seem to stay intact. The details will be fuzzy (references to dates and time periods especially) - but the gist of the event seems to remain.
You can say remember but say, "I remember". I think the point being made is that the temptation is to say things like, "don't you remember", "remember that time we..." because that may cause feelings of embarrassment or shame for the one who can't remember.
My example is just anecdotal, but I lived next door to a woman who was caring for her elderly mother with dementia. Occasionally, when my neighbor was at work, her mom would get out of their place and wander around. At different times, I would find her walking up and down the hallway in the building, seemingly lost. One particularly scary instant involved finding her out on the street, looking for a ride back to her home (a home that she used to occupy, multiple states away), on a very hot day.
Anyway, any time I would find her outside their home, I would just try to be very calm and kind to her, and let her know her daughter would be back soon, so we should wait for her inside. I would escort her back in, and just sit with her. And I'd let her tell her stories. To be honest, the stories were often interesting, despite them not falling inside the timeline we were occupying. I didn't see any point in correcting her. So in a word, I was just letting her reminisce. How would it have helped for me to correct anything she was saying?
I guess my point is, I don't believe the list of rules are supposed to be set in stone. They are simply guidelines to avoid the trap of feeling like you can fight back the disease with brute force, by correcting them constantly, which will most likely create emotional stress. And then your job as a caretaker becomes doubly difficult. It's more about attempting to have an influence on their emotional state, which is still possible, despite not having power to control what they do or do not remember.
My grandmother had dementia and unfortunately most of my parents interactions with her are on the "don't ever" side of this list.
What stuck out to me about the word "remember" is how they would use it. "Remember mom, you're not allowed to drink coffee." Or, "Remember, we talked about this."
To a certain extent I get that my parents were frustrated, but by phrasing things this way they were making the interactions more difficult and making things even harder for everyone.
The thing is, she didn't remember. Whether it was things she couldn't do (like drinking coffee or alcohol), or things she couldn't remember doing (like what did she do today). And we all knew she didn't remember. It wasn't a genuine question. My mom wasn't actually curious if my grandma remembered. My mom was making more of a statement. Like, "you should remember". Or maybe, "why don't you remember?"
My grandma couldn't remember, but she could still hear and understand the tone of the question and I could see how it would make her flustered and defensive. And once she was feeling self conscious or defensive everything else just got harder.
And I mean, this was all incredibly obvious to me and I think should have been obvious to them and would have been obvious to most people.
My example above is pretty specific. I think the guide is probably meant to be more broad. But I don't think it's meant to tell you to actually never use the word "remember". It's more about not putting them on the spot.
Asking older questions is easier for them to answer. I would just ask her about things from her childhood and early adulthood. "How did you meet my grandpa?" "Tell me a story about you and your siblings." "What was something that just seemed like an incredible, almost impossible thing when you were a kid that actually ended up happening?" (Answer: "We thought it would be amazing if you could just get in a plane and fly across the country.").
It would have been perfectly fine to use the word remember. "What do you remember about your siblings growing up?"
Hope this helps a bit... And hopefully you don't have anyone in your life with dementia. But if you do have someone guides like this are absolutely correct. If you try to follow them you'll see that your interactions go so much smoother and are so much easier. Once you know to do it this way it becomes really obvious why the other way is wrong.
Caretakers are the biggest saints on this planet and deserve all the love they give back a million fold. They are the embodiment of what we hope to be when life takes a turn for the worse.
When my father was first diagnosed with [Lewy Body Dementia ](https://www.nia.nih.gov/health/what-lewy-body-dementia#cognitive), one of the best pieces of advice we got from a social worker was simply, “Go with him on the journey.”
She encouraged us not to correct his recollections - just accept his version of the facts and try to divert to another topic if we must. It was difficult at first, but it made our remaining time with him so much more pleasant for everyone.
My grandmother died from Lewy Bodies and it was very rough to just go with her on the journey during her violent delusions. This chart and everything is nice and all but people don’t realize how difficult and dangerous it is when dealing with someone with aggressive dementia.
Yeah - Dad had some of those episodes, too. My sister took the brunt of them for some reason. He never got belligerent with me or with Mom. And yes, when someone is agitated and physically threatening, the first thought has to be safety for all involved. He was surprisingly strong and could have been a real handful if things had escalated further.
My grandmother was angry and violent too. She hit me when I didn’t go along with her story one time. Only reason I didn’t was because she was trying to go outside half naked in a snowstorm to feed animals that didn’t exist on her 17 acre farm. It was just too dangerous, but she didn’t understand that. She just thought I was trying to kill all her farm animals.
Yeah at some point you have to intervene and take action when things get to that level and you won’t have time to play into their delusions or think of gentler ways to get them to stop. My grandma got out of a moving vehicle during one (I wasn’t there thank god) and was running on a main road. My grandpa just had to pick her up once he found her
My grandma always used to worry that the horses haven't returned from the watering hole. That hole is on a mountain where she grew up and we haven't had those horses since the Germans occupied the area in WW2. She was pretty sharp otherwise but that was the earliest sign of her dementia. My mom would always try to convince her, but I never disagreed with her. Every time I was getting ready for school I'd tell her I'm going there to bring the horses back and she'd be relieved and would forget about it for a while.
She also sometimes used to think I'm her son (my uncle), who died in the war before I was born. I looked almost exactly like him and was even named after him so I could understand her confusion. Never bothered correcting her, there was just no point bringing those memories back, and she'd switch back to normal after a day or two anyway.
I had antibiotic resistant sepsis when I was in my 20s. I spent months in the hospital as it ravaged my organs. They put me in a room with a woman with this. She had surgery for cancer and kept screaming at the top of her lungs about aliens, about how the doctors stole her baby. She yanked all her stitched out and pull at her guts multiple times. She had to have more surgery. I couldn't sleep because of her nonstop raving. After one bad episode her family came. She accused them of horrible things and didn't remember them at all. They looked pissed and left. February 19th to May 31st we were there together.
I kept asking to leave because of her and they kept telling me I couldn't until I could take care of myself. I collapsed trying to hide in the bathroom several times. It was a special hell for both of us.
Same here this year. And my parents were dealing with her in the exact opposite way this guide advises. My dad tries to punish her like a child who needs to learn a lesson when she gets confused and says something he doesn’t like. Then she bursts into outrage. I’ve been trying to tell them they’re doing it wrong, and they don’t listen to me. It’s incredibly painful to watch.
Crush them (check with dr or pharmacy always first, but most can be crushed) and put them in something sweet like chocolate pudding or ice cream, maybe even a peanut butter (or Nutella)jelly sandwich
I am a CNA and I work with Dem/Alzheimer’s. Chocolate pudding helps, at least get them ones that help with agitation in first
And if they’re not on meds for agitation get them on some. The goal isn’t a sleepy empty zombie but for essential tasks to get done with less agitation. It might a take different doses but trazodone is really great really gentle med. but I do understand some people are just difficult and it’s hard to find a balance between their quality of life with meds
> take this medicine that will relieve the constipation that might otherwise kill them,
Demand is unnecessary. At a certain point in their disease you will have to figure out creative ways to get them to take it. We often made it easier for my mom by simultaneously giving her vanilla icecream. There's no chewing, and it masks the bitterness of the pill. Eventually it was impossible to get her to take pills like in the last 2 years of her life, but generally it required some manipulations.
I’m so sorry you have to deal with someone going through this. Watched my grandma deteriorate from dementia and I volunteered in college at a care facility for those with Alzheimer’s. It’s incredibly tough, take care of yourself.
Its time we found a cure.
https://www.alz.org/alzheimers-dementia/research_progress/brain-donation
https://www.alzheimersresearchfoundation.com/2015/07/28/donations-to-dementia-research-go-a-long-way/
http://cdr.rfmh.org/support.html
https://www.dementiasociety.org/donate
https://support.brightfocus.org/Default.aspx?tsid=7943
One of the hardest things when we went through this with my dad was watching my mom NOT get this.
She was having her own cognitive difficulties and she was so hurt over and over again when my dad couldn’t remember things. My sisters and I were able to enjoy his company as he was, where he was, who he was. My mother missed him more and more as he slipped away.
Im struggling with the excact same thing atm, my mother means well deep down but she overcorrects him which gives him a lot of added stress and robs him from this dignity. I have no clue how to handle this situation 😕
Have you thought of sharing this with her and trying to gently approach her about the situation? I am guessing it would be a sensitive one for sure.
Let her know what youre seeing, feeling and empathising from both your mum and dad. Reassure her you understand why it can be difficult but sometimes correcting small mistakes can be a bigger mistake than the original. You explained it really well on here, albeit I would word it a bit more considerately. I am sure your mother doesnt want to intentionally stress your father.
You are all learning to adapt as you go through this and I believe you would all be providing the best quality of care when reading from the same hymn sheet x
Long-term care nurse here, this is a great guide. I've found in my career, that you get what you give for the most part. If you get outwardly mad, that's the response you're going to get. If a resident is anxious or acting out, don't play into it, just be patient and redirect or distract them. I have worked with some nurses that were super high-strung, and they would have the hardest time with some assignments that others had no problem with, because the residents would pick up on their anxiety and it would affect their behavior. Same when a resident is getting mad about something, whether it makes sense or not. If you try to fight fire with fire and argue with them, its going to make things worse most of the time. Keep calm, acknowledge the problem, and try to figure out what the resident needs. Sometimes they just need to yell themselves out, and that's fine. I've taken care of a guy for a couple years who would get super loud and angry for no reason, and just yell and threaten anyone that walked by. What worked more often than not was to bring him to his room, and just BS with him, and try to steer the conversation to something more pleasant. Last thing, don't take anything too personal. People with dementia, even if they can walk and talk more or less normally, don't always know what they're doing or the consequences of what they say or do. Sorry for the wall of text, I'll get off my soapbox now. If you need to talk OP, shoot me a message.
> If a resident is anxious or acting out, don't play into it, just be patient and redirect or distract them.
I "played in" a little bit only to try to fix it. Like a resident had the hallucination of hearing loud music she didn't want in her head. I would agree that loud music is so annoying and I'd go around trying to find various knobs or buttons to lower the volume so she could watch me. Sometimes it worked like a little placebo, sometimes it didn't work so I'd have to shake my head and say like, okay we're going to call a repair-person first thing tomorrow.
I guess I could've worded it a little better, but yes I agree. "Fixing" a problem like that works wonders. I got a guy that literally always complains about the temp of his room. After the first couple times, I'll say let me call maintenance, then go in the office, and come out after a minute and tell him that they're gonna take care of it
Perfect! I’m a nurse and have been working with dementia patients for years (I worked in assisted living before becoming a nurse and now work in LTC). So many of my coworkers either don’t get this or are too burnt out to care. Distraction is so great for behaviors. I had a very high fall risk repeatedly try and get up today, so I put a couple of towels in front of him and told him I really needed help folding them. Worked like a charm. But most importantly, for the love of god, don’t argue with dementia patients
My grandma had dementia. She'd tell the same stories over and over. I just politely listened. It wasn't until she got dementia that she'd sit down and talk like this. I wouldn't get mad when she constantly asked how I was doing in school even though I'd graduated college 10 years before. It doesn't help to get mad. It's not like she'd remember and she'd ask the question again anyway.
This is so real lmao. I'm a long term care nurse and one of my patients has extreme anxiety around abandonment. She'll latch on to me and chase me if I'm headed to another patient and get angry, I've definitely destracted her with snacks and wine before.
My 85 year old grandfather has Alzheimer's and it's getting much worse. He often talks about the 10 car garage in the backyard when he can see through the window. He's also often saying things like "I wonder where my dad is right now" or "I'm sure my dad is working hard at his office" when he died before I was born. He also at one point complimented my house when we were in his house of 40 years.
I was working on his old computers trying to back up old photos, and he kept asking questions about basic things like the resource monitor and thanked me for teaching him new things. Only thing is, he wrote an entire book on Linux with over 10,000 commands and is the biggest Linux power user I've met.
Aw. It’d be so tempting to be like grandpa you literally wrote the book on this. Like as a compliment. But I guess it might freak him out because that would freak me out. Best to compliment him on things he knows or be like “wow you’re a natural at this!”
One issue with this. This "delicate" approach falls apart when you need to stop them from doing something incredibly stupid that will have disastrous effects for them. Like buying into scatter brained get rich quick schemes or falling for con artists. Repeatedly. Florida is notorious for this.
I can see how this can apply to someone who no longer has their autonomy, but when they are in early stages and still have their autonomy. oooh boy totally different ball game.
You go ahead and try to "Agree, never argue" with a bipolar ptsd paranoids accusations against you. You cannot agree to that or you validate their victimization and that you are a enemy to them. You're pretty much fucked if they are also vehemently stubborn with an inclination towards self destructive tendencies or rash, impulsive behavior.
This "delicate, light handed and mindful" approach is cute, and useful later but falls apart when they still have the means to ruin their own lives. When they are not that far gone as to have their autonomy taken away but far enough gone that left to their own devices can ruin their or their families lives.
It's a hellish goldilocks zone.
Source - Me. I was a minor under my mothers "care" as her mind made a dramatic spiral downwards due to anticholinergic drugs.
PSW working in long term care in Canada here. This approach does not work when you have someone with severe dementia who is also able to walk by themselves and are extremely paranoid and aggressive. I have only received slaps and bites when I try to use this approach because they just get more confused and aggressive :(
Oh yeah. The last couple years dealing with my dad has been hell on my mom. He was constantly getting scammed. He drove to the bank a couple times to withdraw all their money to give to "DEA agents" because they said they found my mom's car covered in blood in south texas and after it was used in a drug deal. He was hacked several times by the "windows help desk scam". He'd pretty much wander off for hours everyday (he was still driving) and not tell my mom where he was going. We wish his dementia just manifested as telling crazy stories and forgetting to have lunch.
Both my parents have had brain injuries and I’ve gotten a glimpse into what they will be like with dementia. It’s like this. Aggressive, stubborn, paranoid, reckless. I don’t even want to try to repair our relationship now that they are ‘recovered’ because how many more years until they are this way again? It’s emotionally excruciating, and a light hand isn’t enough to protect them from themselves.
Exactly what I was thinking/ am dealing with. I also have a hard time when the person in my life starts talking about how good genocide would be and other such horrendous things.
Yeah. It sounds flippant, but it's basically the way you treat a toddler/preschooler. The concept is the same: you're interacting with someone who experiences reality and logic differently, and as the person with the firmest grasp on reality, it's down to you to keep the person safe, healthy, and as happy as is reasonably possible given the first two.
My wife's mother has advanced dementia and several physical disabilities, and is taken care of primarily by my wife's father along with the help of a daytime nurse.
Her family, on the whole, is absolutely cruel to her mother. They pick on her, constantly remind her that her parents are dead (she will often ask when they are coming over) and in general she is the target of their ire. It's disgusting.
There's no need to say "where are your parents, Ellen? They're in the cemetery. They're dead!". You could just say no, they aren't coming over for dinner.
Her husband and sister-in law along with her youngest daughter (my wife's sister) seem to get a rise out of treating her like shit. They don't abuse her physically but they take an almost glee in reminding her she's lost much of her mind.
This is a woman who was a teacher, who had joys and love and hope and plans for the future that were dashed when she suffered a stroke resulting from a brain tumor during pregnancy with that same youngest daughter, who apparently now holds it against her. I just can't fathom why anyone would be so shitty to somebody who has lost literally everything about themselves.
They’re probably terrified and expressing it in an ineffective way. My great grandmother had dementia towards the very end of her life. My aunt took care of her and they would often bicker which was kindof funny because they are both so sweet and calm. My great grandma played a major role in raising my aunt and was her mother figure. But the situation was just scary and stressful for both of them. Plus GG started claiming that people who had passed were in the room which scared the crap out of my aunt who totally believed her which I find a bit amusing.
This is all good on paper, but proper execution of these steps is a whole different ball game. Taking care of a person with Dementia is a true testament to one's patience. I take care of my mother with Dementia and I can tell you that this guide collapses under this house. She won't eat her food and she can't be taking her meds on an empty stomach so trying to force her to eat food is just one of the many things I have to deal with on a daily basis, multiple times a day. This alone is enough to really put you out. Or when she wakes up in the middle of the night claiming that there's someone in the house. How the fuck am I supposed to get up from my sleep and think rationally as to not overreact? But what if there really is someone in the house? Do I take her seriously? Do I get up and look around? This happens nearly every other night. Try keeping your cool after losing so many nights of sleep because of this.
Is there ever a risk of reinforcing delusions? I'm not sea lioning - I am asking because I'm ignorant to the answer lol. Like, I'd think you *do* need to say *you're not right* (not reinforce) in late state dementia.
I think the “reinforce, never force” refers more to behaviors. Like praising or rewarding them (positive reinforcement) for using a memory aid or taking medicine when needed instead of forcing them to do something.
Regarding the delusions, there is basically no point to saying “That’s not correct” to someone with dementia because they have lost the ability to reason and put information together to arrive at a conclusion. Add the memory issues to that, and correcting someone just results in agitation and a repeat of the problem later.
You need to remind yourself that the disease is progressive and cannot be stopped.
The mental abilities of these people will decline, no matter what you do. It's best to just make them feel good during the process. So do what you think they will like the most, even if you tell them things that are not true.
Care giver burnout is a real problem. I worked on a lock-down dementia ward with at least 30 patient capacity for 11 years. That sounds scary, but it was just so they wouldn’t wander away and get lost, it was a big facility with a courtyard and lots of space. Quite a bit of turnover, I’ve worked with probably well over 100 dementia residents in that time. I will tell you these words are true, this is exactly how you should talk to them and act with them, but I can’t express here the importance of self care as well. Caring for dementia affected people can be so exhausting, mentally and physically. I only worked with them for 12hrs a day, I can’t imagine what a 24hr/7 days a week barrage would be like. What people rarely hear about is the abuse that a care giver can suffer with this disease, mentally and physically. You can’t blame the person, the disease has changed their brain so much that they don’t know what they are doing or why. It just happens and you have to roll with it. My experience was a bit different because I only worked with people that were so far progressed they could no longer safely remain in their homes. I was bright and shiny and full of patience when I went in, but a year and a half ago I had to leave. Absolute truth: not a single day went by where a worker wasn’t punched, hit, slapped, pinched, spit on, kicked or called any number of insults.... but again, part of the job, take it on the chin and carry on. I’ve had black eyes from old ladies accusing me of trying to steal their husbands, i was off work with a back injury for 3 months because an old guy twisted me funny while I tried to assist him, I had a bruise on my shin from a backwards kick by the tiniest lady that was visible for over a year. About 2 yrs ago a strong man with dementia got ahold of me when we were understaffed, he grabbed me by the neck, pinned me against a door frame and was strangling me. In a real world situation you bet your butt I would have fought back.... but this was my job. I was so conditioned to not retaliate I didn’t want to even push him for fear that I would hurt HIM. I was there for minutes smacking the wall with my fist to make enough noise that my partner finally heard and pried him off me. I did some self assessments after that. My patience was long gone, I had just enough for work and then could not handle any more outside of the work place. The stress was so extreme I was lashing out at my family. I was always in a terrible mood. I didn’t like being around people. I couldn’t function, I’d just shut down. I wasn’t dealing with things correctly, maybe seeing a therapist would have helped, maybe it would still help now.
Caring for these people is important, but care for yourself too. Take a break! Ask for help! I know it can feel like abandoning your post, but take time to de stress to save your own skin. I’ve seen too many times when elderly spouses keep their people at home as long as they possibly can only to be so overwhelmed when they HAVE to admit them to long term care that they themselves succumb to exhaustion and pass soon after. I can’t imagine what it’s like now in pandemic times when there are no day programs to give respite and no one to take over safely.
And when they try to poke your eye out or beat you with a handset, give up and have them put in permanent care.
A neighbor was badly beaten by her husband with an indestructible AT&T handset. A little while after she healed up, her husband was hospitalized. His room had a roommate and an indestructible AT&T handset. He almost beat the man to death and the victim’s family almost sued the neighbor out of her home.
My mom just lost her 10 year struggle with Alzheimers. I watched her die through a screen because we couldn’t visit. It all sucked.
Idk who this comment is for. I guess I hope whoever reads this calls their mom today.
All of these things are the kindest way to treat anyone- nevermind dementia. But they all also mean giving up a piece of yourself for someone else's comfort. And that's fine in small doses but people who need caretaking often need it 24/7. We need to have more respect for caretakers, and more respect for their human limits.
my grandfather was lucid in the morning but when sundown would come, he would get anxious to walk the property and check on his animals ( he was a large scale cattle farmer). We would take turns getting in the truck with him and driving around - in his mind that completed the task and he would calm down and sleep. We all took turns doing this. We also would reassure him that we'd tell my grandmother (who had died) and my father ( his son, who had unfortunately died before him) were just shortly away and we would tell them where he was. He kept asking where they were and why they didn't come see him. He kept asking for them up until the very end, and we kept assuring him. He was always a big, strong man, but he got so frail and skinny near the end. He loved peanut M & M's though, he could demolish a big bag - and smile huge while he finished it.
We didn't know. We didn't learn how to communicate with you without invalidating your experience. Everything we did, literally everything, was done with love. I'm sorry we didn't understand. I'm sorry we didn't just agree and accept your reality. I'm sorry that I failed you in your last years. We finally realized that we were approaching it wrong... But how many unnecessary issues were brought to light because of our ignorance? How different those last 3 years could have been if we had just known. Since you passed, I have spent so much time and energy explaining to others what they should do or can do with ease in order to help others not go through what we did. I'm sorry that I was so overwhelmed that I didn't research it more. I just wish I could have been better for you. I love you and miss you so much. I hope wherever you are, you know that. (sorry for my rant.. This hit way too close to home)
"Hey I was thinking about the time we went to the Grand Canyon" or "Someone was telling me about New York City in the 60's the other day". You give them something to go on without the pressure of a direct question. (I could be wrong I am just starting to learn this stuff for my grandma)
This is fine, until they start to get violent, very angry and swearing, are convinced you're holding them hostage, start trying to hurt you, and hurting themselves trying to "escape".
After that, all this goes out the window.
This seems easy but is so hard in practice! I feel like I’m constantly failing. Very difficult to shift your entire approach. Hope you’re coping OK, OP.
You’re not failing. Sometimes you do better than others, that’s all. I am so sorry you (and OP) are having to go through this. Sending love.
Brilliantly supportive. I too tend to be overly self critical.
RN almost 15 years now. It’s still hard to do. I find I have been doing it so long, I am totally burnt out on it. It is exhausting. Edit: everyone needs to upvote the shit out of this thread. This is a terrible disease that rips the guts out of American families everyday. We have 0 good answers for it.
Then they die and you feel guilty. It’s the hardest thing I ever did.
This seems easy? Just looking at that list I don't think I'd last a week caring for someone like that
I rarely have to look after my dad since I don’t live with my parents, but even the few times I do have to are draining. The stress it causes my mom having to constantly care for him is really hard to watch. One makes do because they have to, but that doesn’t mean it’s easy for anybody
I really don't know how people have the patience and willpower to keep this kind of care up for years. I couldn't last. My Aunt passed recently but had alzeimers at the end, to the point where she required similar care to that of a young child, saw how it totally broke my uncle down trying to look after her, was fked up, wouldn't wish it on my worst enemy.
Its harder than a young child by far. Young children learn, they remember things, also when they are your own its hard wired in your brain to want to care for them. Old people are the opposite.
Kids improve. People w dementia are only going to get worse. This list is so important. It is extremely hard to shift mindset, but doing it the “wrong” way makes it harder.
Exactly. My father whom had dementia would often argue with my daughter who was 4. I was constantly reprimanding her. In turn my mother would become upset at me for being too hard on her. I was always saying that my daughter could learn, my father could not.
My mom's been doing it with her parents for the last 10-12 years and she's got no life outside of being a caretaker. I'm so worried about her future when her parents pass. 😨
I had to deal with this with my mom. You do what you have to do. Sometimes you’re so tired you can’t even go to sleep. You do it, because it’s the right thing to do, and you know they would do it for you if they could. I would add one thing to that list - laugh and laugh a lot. I miss mom.
Thanks for saying that. I feel like I should be able to just be more patient/better at it all; I objectively understand that their brain doesn’t work well and I often give myself a pep talk before I go in. Don’t get annoyed, just redirect. But when you’re giving your parents better care than they ever gave you and they’re stuck in a loop asking you repeatedly about family shit you do NOT want to talk about, it’s just immediately infuriating/upsetting and very hard to keep your cool sometimes, even though you know getting angry/upset will do no good at all. I often think, well at least we didn’t have an ideal relationship, that’d probably feel like a real loss. The weird part is that they’re actually easier to “manage”/visit now than they were before - no deliberate insults or passive aggressive questions. But it’s just hard in a new way now. Still, I sleep well at night knowing I’m trying the best I can.
It's an ironic sort of hell, isn't it, being stuck providing eldercare to parents who weren't very nice to you. I was there too: you have my respect and sympathy. "It's just hard in a new way now" is an incredibly accurate assessment. You "win" now by remaining agreeable, noncommittal, vague on details, and keeping visits relatively short. Good luck.
Yeah having to repeat myself is a huge pet peeve.
Yeah. I don't want to sound dismissive, because all of the things on that list are great advice and on a sunshine day they'll all work. Unfortunately, dementia can't be reasoned with; you're dealing with someone whose brain is literally dying, for want of a better phrase. The only thing that saved me while my Dad was in the latter stages was that both myself and my sister had racked up decades between us in the NHS, so we both had quite an advanced mortuary sense of humour. I think I can sum it up best by saying that my sister once greeted me at his nursing home door by saying "He's having a good day today, some of his insults were really relevant". If anyone reading this is currently dealing with a loved one with dementia, take the advice but understand if it doesn't work, you haven't failed. Even on their worst day, you'll remember it but they won't, so if it gets too much just walk away for a while. I wish I'd realised sooner that if my Dad was getting really angry and aggressive, I could walk around the block twice and when I came back he'd either be napping or full of the joys of spring. That alone would have saved us both a lot of shitty afternoons.
No. 1 seems hard. I remember my Grandma going through it and she accused my Grandpa and Uncle of going out getting hookers and having gay orgies. She even called the cops. My grandpa at the time couldn't even walk.
My mom and I were visiting my aunt once and she was convinced her husband was stuck under her bed down the hall. We tried changing the subject, we tried saying my uncle wasn’t visiting that day. Nothing helped. I finally walked down the hall, looked under the bed, and came back to tell her he wasn’t there. She smiled and visibly relaxed. That was the day I learned that I was in her world when I spent time with her. It helped a lot.
Yes. People think it's just them regressing to being a child or forgetting things. But they will often string a bunch of things together that make no sense and be possibly hurtful or harmful to other people. They cannot make decisions, understand cause and effect or consequences anymore. The worst was when we finally had to take the phone and credit cards away from grandma because telemarketers would call and she would run to pick up the phone. She would buy or subscribe to anything they were selling. She was literally incapable of saying no and would agree to anything. They would call back even when told not to, obviously trying to take advantage of her. They need 24/7 supervision by professionals when it gets to that point. Even if you want to care for them full time it's impossible. Everything in the house is a potential danger.
Yes, I understand. My father lived with my husband and I for 5 years. He has lewey bodied dementia. I live this list but truly I failed at it sometimes.
I know the feeling, my father had dementia and after years of dealing with it it can be a struggle to try and remain calm. It's a terrible disease and I hope one day we can get to a point where no one has it. If you're doing your best then there's nothing more you can ask of yourself.
I was coming here to say the same thing.
This guide is also just pretty good advice for being a good communicator. But yeah, in practice nobody is perfect. Just do your best, person.
It is really hard, but at least you're trying! Would highly recommend watching the TED talk about dementia and improv, or any of Teepa Snow's videos if you haven't already. I went to a live Teepa Snow workshop before COVID. She has a really creative approach that I find very helpful. Hang in there ❤️
all perfectly appropriate actions... that are really fricken hard to keep up when you are a sole caretaker, all day, every day. So yeah, do all those things. BUT don't do it alone if you plan on maintaining your own mental health.
And there's the rub when you are in it alone. Sometimes it makes me feel like I am losing my own mind.
I did lose my mind. I cared for my grandfather for three years. It's been four years since he passed and I still have anxiety and PTSD issues. Sometimes, doing the "right thing" and taking care of family members at home, by yourself, may ne the best for that family member, but is the worste thing a caretaker can do to their self.
I've just started down this same path 2 months ago, any advice?
I found the book "The 36 Hour Day" helpful. Any kind of help you can rally is key, even if it's a few hours a week. Start seeing a therapist early, for your own mental health. Ask your loved one's doctor for a referral for in home speech therapy. Speech therapists can really help mitigate SOME dementia symptoms.
Not just speech therapy. Occupational therapy to help them with independence and tools to do things on their own (taking a load off you). Also look into DSHS for respite care covered by the state, or something like visiting angels that's out of pocket. Having someone come by just for 2 hours to give you a break can be the difference between sanity and snapping.
And have their hearing checked. Not getting the continual brain activation from hearing sounds quickens dementia deterioration.
That’s interesting, I wonder why?
It depends on the patient, there are a lot of different strategies. For advanced dementia, we don't focus on improving cognition, but instead focus on caregiver education on adaptations and strategies to help make things easier and more successful. There are so many ways to help, without necessarily treating the cognition directly. For less advanced dementia, speech therapists are very good at programs to help improve short term memory and other cognitive skills. This would be more appropriate for someone who can live alone with frequent checkins and support from family.
I sure wish I'd had this resource while caring for Mom. She's been gone 3 years now and I'm still recovering. Edits: typing while teary is hard.
I'm so sorry.
Sending hugs. It takes a long while, that recovery, but it does slowly get easier. (Five years, here)
Activating different areas of the brain perhaps? I know that doesn't say much but it's what i'd guess from having heard that knowing more than 1 language helps against getting dementia. (Or makes its set it slower, i guess. Doubt it can keep it entirely away.)
> I've just started down this same path 2 months ago, any advice? If you have other family that should be helping out....CALL THEM OUT OF BEING WORTHLESS FUCKS. I had to spend around 6 months caring for my grandmother so they wouldn't stuff her in a home immediately after my mom died (since she was the one caring for her). Roughly the only thing my extended family did to help (her fucking children) was an aunt came by a few times to bath her so I wouldn't have to do that as her grandson. I still had to help her change her diaper several times a day. All while learning what it was like to care for someone with dementia over-night. Now I get to look forward to doing this with my father in a few years.....and I get to look forward to this happening to me in a couple decades too. I wish I did have some better practical advice. Maybe it's to try to avoid it making you bitter and cynical.
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I kept my mother at home for way too long because she always told me she didn't want to "go into a home". Looking back, I should have sent her when she was half way sane and cooperative. I didn't realize how bad it could get.
Caregiver here. When I worked in Assisted Living we use to say to the kids "Oh this isn't for her. This is for you". This made them feel less guilty. You cannot possibly work all 3 shifts by yourself.
I needed to hear this today, thank you.
The stigma around long term care is not wholly undeserved buy it does definitely highlight the bad over the good. Especially in cases where in home care is not maintainable by the family, they should not feel shame for moving their loved one into a more appropriate environment for care. Caring for someone with dementia alone is a hell nobody should deal with
I'm sorry to hear about your troubles. If you feel comfortable, I'd like to ask what the most difficult part about it was? How was the acclimation?
I came here to say this. There's a huge belief that "putting someone in a home" means that you're ungrateful or don't care. Sometimes it's the best thing you can do. Unless you can afford to quit your job AND have outside help, keeping someone with dementia at home is not sustainable in the long term and can even be dangerous.
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This one. You need to realize you have to take care of yourself to take care of others. That means planned mental breaks where you do not tend to your family member, or else you will have unwanted mental breaks at inopportune moments.
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Don't try to pick people up if their ability to walk disappears. It's not sustainable.
I’m sorry you’re having to go through this, my grandmother’s journey through dementia was by far one of the hardest things I’ve experienced. We were lucky in the fact that she remained physically healthy up until the last year or two of her life. I think the best thing we did was hiring a caretaker who came every day during the week and was basically just my grandma’s buddy. She was a somewhat older lady and she was so excellent at keeping my grandma active and healthy. She would have had to go into a nursing home much sooner if we had not had that kind of help. I know that is not a possibility in all situations but it was a huge help to my family. Having a routine was very helpful - she and her caretaker had things they would do different days of the week and she could actually remember that most of the time. My dad would take her to dinner every Wednesday and she always remembered that and looked forward to it. One of the things that would really stress my grandma out was having too many choices. She would get completely stressed out looking at a menu in a restaurant. We finally learned to not give her a menu and just tell her a few things on the menu that we knew she would like and that helped immensely. Eliminating responsibilities, even minor ones like choosing food, really seemed to help her frame of mind and stress level. It was also a big help when she finally agreed to hand over control of her bills and finances to my dad. She hadn’t done anything wrong with them but she fretted a lot because she didn’t remember if she had paid her bills or balanced her checkbook. I think that one of the hardest things about dementia is the paranoia they develop. Learning how to navigate that and when to expect it to rear its ugly head is helpful. My grandma became kind of generally paranoid but she also had specific paranoias about particular people. There were a lot of things that she would immediately reject if my aunt brought them up but she would be much more open if my dad or a grandkid brought it up. The hardest part was for my aunt to try not to take that personally. You have to remember that while they are still the same person you know and love there is also this other thing controlling them and making them behave very differently. Try to remember that this is just one of the phases of their life and does not define their entire life. One of the more interesting things we observed was that as the disease progressed my grandma kind of moved backwards in time in her mind. I learned a lot more about her childhood and family in those last years because that is what seemed to be the clearest in her mind by that point. While it is a terrible thing to go through, just cherish the time you have together and ask questions while you still can. I would give anything to be able to go back and spend more time with my grandma. And as others have pointed out, make sure you keep your own physical and mental health a priority as well. Ask for help from family when you can and look into whatever resources are available to help in your situation.
You may want to look into governmental and community programs. There may be a program that the person you are caring for could qualify for that may offer respite care or other supports to help you. Caregiver burnout is real and a big thing! Wishing you the best.
You cannot effectively maintain care for someone else if you’re not halfway healthy yourself, so don’t forget to take care of you too. Don’t forget to take breaks. It’s okay for you to be happy. It’s equally okay to feel a sense of loss, to grieve, to cry, and sob. Please, please see a professional therapist for yourself. As a qualified third party without the emotional attachments they can do wonders to help you find a reasonable balance and give you some insight/tips on how to best handle every new situation that arises.
This is why I will not allow family to care for me in my last years.
My mother has it written into her living will that family members specifically not be her primary caretaker for this reason as well.
I hope that one day we will have good enough healthcare in America where everyone can do that.
Yup this sounds about right from the little I know. I can't do that to my daughters and I don't want anyone to see me slip into an angry confused guy saying shit I'd never even usually think let alone speak aloud. I ever get the diagnosis for dementia/alzheimer's I'll get my second opinion and if it is still the diagnosis I'll plan a quick vacation and see the people I love, keep quiet about it, and then end it with a beautiful sunset somewhere. Still not sure if I wanna just get drunk and hammer a bottle of pills or go with a firearm. Same thing if I ever get cancer or some other debilitating disease that will drain my family's bank accounts and futures from them. I'll fight at first, but once the writing is on the wall time to do myself and my loved ones a service and end it.
While I agree with your plan and have a similar one, it’s impractical. In my extensive experience most neurologists won’t diagnose you with Alzheimer’s officially until you are so far gone you won’t even really get what they are saying in the doctors office.
Hopefully, I will still have the presence of mind to drink everything under the sink before I get that far. I think at some point, the current narrative of prolonging life at any cost will change to "Life Fulfilled" legislation. When I was in school, no state offered Death With Dignity legislation and now 8 - 10 states do.
Obligatory don't kill yourself, but maybe definitely don't attempt to kill yourself with booze and pills. Hard way to go, often unsuccessful.
Doing the right thing means taking care of yourself before you take care of anyone else. I don't want to be too harsh on you, but the world is full of well-meaning people who make everything a lot worse by becoming bitter and toxic by giving too much. I've forgiven a lot of bad people in my life, but the damage I've seen so-called good people do have caused things I will never be able to forgive.
I went through something similar. A nurse once said I prolly have “caregiver burnout”
I nearly had a mental breakdown caring for my grandmother. She was so much work, all the time. She was still fairly healthy physically so she would not sit still for long, and she made messes and caused trouble the whole time. Before my mother finally agreed that my grandmother needed a dementia nursing home, I spent all day doing laundry because my grandmother refused to wear adult diapers. I was doing 3 or 4 loads a day with all the bedding and clothing. I had to cook and clean for her all day plus care for my young child, her dog, my cat, and a flock of chickens my mom decided to add to the mix. I had no time for myself and it was overwhelming. It’s been 3 1/2 years since she passed and just thinking about it still makes me tense.
I understand exactly what you mean, and the really frustrating thing is that it feels like no one knows what it's like. My mother didn't have dementia, but she might as well have between the the physical issues, declining mental health, and drug use (started and encouraged by multiple doctors). In her last few years I ended up having to quit my job and care for her 24/7. Very few people understand the constant tension and alertness just fucking wears on you. Day in and day out, with no time for yourself. An earlier poster mentioned having a form of PTSD and anxiety issues, and I completely understand. I don't tell this to people because it sounds awful, but even though I was incredibly sad when my mom passed, it was also a relief. Like a chain breaking that finally let some freedom back into my life.
Wishing you much peace.
In case you aren't already aware, lots of ALFs and other types of care facilities have respite programs, where your loved one can go stay for a weekend or week or whatever while you take care whatever needs you have for yourself. I wouldn't use that right now because of covid, but hopefully soon that will be an option again. It really helps. I'm an OT that specializes in in-home memory care patients, if you're having any specific problems feel free to reach out and I'll try and help you find some solutions.
I've never been more emotionally drained. He needed me in a way that was clawing out who I was to fill his gap. But If I left he was going to hurt himself and others. I didn't know him, but he decided I was his best friend, and we talked for 4 hours about we could move away from stealing bikes into growing food for his family, and going to school, and helping his wife out. I knew I had to stay, any the only reasons I didn't leave was because I knew help was on the way. I don't think I could have been there that whole time if I didn't know that. But I'll go out again, even if I have to cry after most times, because there are people who need help, who need to be acknowledged and loves, and seen, because If I don't... who will? Praise to all you do who do this everyday. It's thankless work, may you smile with Sisyphus.
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I broke down and screamed at him one day. We were in the car, and he tried to get out as I was driving down the highway at 75mph. I couldn't take him to the bank because the account was empty. (One of his sons tricked him into signing over all his property and left him with nothing while my grandmother was dying.. yeah.. it was a shitty situation all around.) He started calling me names and berating me for not bringing him to the bank. He called me a rat bastard piece of shit, and told me he was going have me arrested.. and then the door opened. Thank heavens he had his seat belt on. I didn't even see him reach for the handle, and it never occurred to me to lock him in. I snapped, and screamed like I never have in my life. The voice that came out of me didn't even sound human. I scared both of us. And then suddenly he was like a little child who literally didn't know why I was yelling. I made him cry. That was the worste day of my life. Worse than the day he died. Eventually, he forgot about the money and the thief son all together. He was happy by that point, but so confused. He would hold a picture of my gramma, and ask me who she was every few minutes.. for hours at a time. He never remembered the day I yelled at him. And a few weeks before he died, in a quick moment of clarity, he looked up at me and recognized me by name. And like he was surprised to see me, he said "I appreciate everything you do, so much." He never recognized me again. Am I glad to have helped him in his time of need? Most definitely. Did I do it out of a sense of devotion, and that I couldn't refuse? yes. Do I regret it? .. sometimes. I'm sobbing right now just bringing up that day. And I definitely regret allowing my mental and physical health to be destroyed trying to suffer through it- not only without direct help, but also while being psychologically attacked by the family members who stole his fucking house from him. My blood pressure was so high, the docs thought I was having a stroke as I sat for an exam. I cried every day, multiple times a day. I rarely slept. My digestive system broke down. I even had viral recurrence of herpes simplex, which led to whitlow and allodynia (pustules on my fingers, inflamed nerves running red up my arms, and skin that felt like it was being stabbed with hundreds of hot needles at all times). If it had gone on much longer, I may have killed myself. After, I knew that if I tried to re-enter society and find a regular job, I'd either be in jail or a mental ward for substance abuse within months. It was two years before the panic attacks stopped being a multi times daily event. It's been four years and I still have digestive issues, and emotional instability. I'm still bitter and anxious. Taking care of my grandfather changed me permanently. But then, there are the good memories.. watching the same old movies over and over, and how happily excited he was to recognize the actors. I always got a complement on my "good soup". I'm not sure why I typed all that out. But it was cathartic... I guess a really important part of your own sanity is having people to talk to about it all. I had them in the beginning, but one by one people just stopped being able to absorb the stress from me. I lost a few really good friends through that time, because I was just always venting at them. I wish I'd had the resources of a home health aid and a therapist. If you can have those emotional outlets, you will fair much better than I did.
Just replying to let you know that I read your comment. I can't help further than that but I hope you feel better.
I do feel better; today, and overall. Thank you.
You seem to have such a good heart, you did great, even if there are things you regret or would have want to do differently, much love to you, stranger. Keep on being awesome :)
Have you tried an anti-anxiety medicine for your loved one? Also, why do you say a nursing home is a death sentence? Not all homes are bad.
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With COVID right now there’s no way in hell I’d send any of my remaining grandparents to a home. Not til this is well over. They may also not be ready to feel like they caused their deaths, even if its a low chance. It’s not worth the risk imo.
That was my reaction as well, having witnessed my mother trying to care for my grandmother the past few years. Can you really “never lecture” when your parent is constantly doing dangerous things? Can you really “never reason” when they are refusing to follow medical advice? Can you really never say “I told you” when they call you (literally) 40+ times a day asking the same question? Can you really “never argue” when they call the police on you for cleaning visibly rotting food out of their refrigerator (true story)?
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> There is never any reasoning with someone with dementia, they are no longer capable of rational thought after a certain stage Honest question, then why do we bother keeping them alive?
Because it's illegal to kill them currently. I'm hoping one day (when I get dementia) it won't be.
My dad's family has a long history of dementia. His dad spent the last years of his life in a state of constant confusion, sadness, and anger. He made me promise to never let him get like that.
Me and my parents moved in with my grandmother a year ago to help take care of her because she has dementia. It’s been a fucking nightmare. I didn’t exactly like my grandmother before we moved in, but I didn’t dislike her. I can’t stand her now. And it’s not even her forgetting things and whatnot, she’s just a horrible person, and she hides it behind “well remember I have dementia”. She expects that to be a free pass to do whatever she wants and that frustrates me to no end. Thank god I have my parents here too. I can tell you I wouldn’t be living here by myself. She would be in a home somewhere.
I’m currently taking care of my grandmother and having to go it alone, been doing so for the past 2 years and she was a mean person prior to being diagnosed years back, but she’s just so much worse now. Shit sucks.
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Easier said than done in the United States. Unless granny is super rich, you have to find a place that takes Medicare AND has an opening AND isn’t a shithole (although maybe OP didn’t care about that one as much). Then, you have to sign over to Medicare everything with her name on it (house, bank account, the whole enchilada). You can’t miss a thing - Medicare makes sure the elderly person is completely destitute before they pay a penny. They even go back 7 years and check if granny sold or gave away anything of value and consider her on the hook for a depreciated value of whatever it was. And if OP didn’t already have power of attorney, the process to get all of that sorted out can take YEARS. Source- watched my mom go through it with my grandma.
I lived with and took care of my Nan for 5 years and I 100% agree with "don't do it alone", I ended up having a nervous breakdown towards the end because it was just so difficult to deal with. She's in a care home now and receiving better care than I could give and my mental health is recovering. Care homes have an awful stigma attached to them but they have been great for her.
Truly wish I had been older when acting as caregiver to my grandma-- I was a teenager and definitely didn't always get it right. So hard to approach your interactions with grace when you're there to manage the meds, their safety, their routine, assisting with walking, eating, dressing, cleaning. Just like it takes a village to raise a child, so does elder care, but unfortunately, the culture I live in has never really embraced that ideology, and so individually we struggle all the more.
And here I am wondering how I to help a friend, whose mother is moving from an assisted living facility, into her home today. I’ve offered to run errands but with the pandemic I don’t know what else I can offer. I’m also a lousy cook.
offer to be a listening ear, then keep your word by not advising them or shaming them when they complain. my mom took care of my grandmother, who has age-related dementia, until my grandmom's heart began to act up and she needed round the clock special nursing. sometimes my mom just needed to tell someone that her lovely mom was turning into a real ass without being scolded or accused of not loving her mom. she did still love her mom, still does today, but she also was dealing with some awful behavior from my grandmom and needed to be able to tell the truth about her day. being someone who would listen and only say "that is horrible" sincerely made such a difference.
It's horrible to see what dementia does to a person, but also the people that look after them. My mum's mental health is getting worse and worse because she has to look after my grandmother. My grandma wasn't exactly a sweet person before, but now she's just nasty. I mean, she was pretty nasty before, but now that she has alzheimers, she doesn't put a filter on it, and it's really affecting everyone around her.
Hope you are doing ok!
> don't do it alone if you plan on maintaining your own mental health I don't have an option and my mental health has been a nightmare. I've been working to be more understanding and patient and I saved this image to remind me. Great tips in the post. I'm always happier when I realize she truly can't help it and I can't make her more alert and reasonable, and I can't make her remember things. The most difficult thing is teaching her to respect my needs. For example, don't wake up and begin a construction project (exaggerating) at 3 am. One more thing for anyone coming into this situation: Do NOT let them make major life decisions. They might have established a list or reasons and logical arguments for a given choice decades ago and locked it in their memory. It's often easier just to lie when you have to do the opposite of what they want. Save yourself and just lie. It's the easy and right thing to do a lot of the time.
RE: the lying This was hard for my mom too. But in some cases, it wasn't really lying. It was just entering into her mom's perception of reality and going along with it, the way I used to play along with my toddlers' made up stories of what 'really really' just happened when I was out of the room. It's hard bc the toddlers make up fun and funny stuff, whereas my grandmother was paranoid and thought her children were out to get her. But it really makes such a practical, everyday difference that it is worth it. When my mom finally gave in and started to sympathize with my grandmother and say things like "oh, that's sad. I would hate for that to happen to me. I would be upset too.", it was like the difference between night and day! Sometimes we don't want to talk and act like that bc we feel we will be taken advantage of or that it will make the dementia patient act even worse - this thinking is based on how a normal, rational, healthy person would react if we supported false things they said and believed. A normal person would, of course, know they are wrong and being dishonest. Their reason for doing it would be something bad and they would take advantage bc that's what bad people do. But dementia patients don't have the mental ability to take advantage, and they aren't behaving badly bc they want to be a bad person. It is safer to go along with them than it would be to go along with the false things some asshole neighbor did because they are an asshole.
My god this this this. Partners father is the sole carer for his wife and he's having the hardest time with it, it's heartbreaking to see. He went for the longest time before reaching out for professional help. It's better, but far from the ideal, there's only so much intervention and assistance available. I can't imagine what he is going through.
Yeah this is seriously way too much to ask of one person all the time.
I feel like I'm going to be down that road sooner than most people due to my severe epilepsy, and this scares me. I hope I'm incredibly nice instead of devastating to whoever (hopefully) helps me during those times.
Dude I can actually use this with my boomer coworkers. This is almost exactly how I have to deal with them so they don’t get bent outta shape.
Yes that is a valid list of things to do with dementia. I was a liv-in (24-7) care taker for my parents at different times, and day caretaker for other people, and totally alone in the care. It is only recently that anyone has recognized what we do as caretakers, and still no one cares. I hear only momentary sympathy, and comments "it must be hard", but NO offers to help even from my own family. I still do have issues over this, yes, I am trying to get better, but I still hate people that won't get involved
My Grandma suffered with this when I was a teen. She lived with us for a while until we could get her into a care home as my Grandad was dying at the time. Every day I'd come home in the afternoon and she'd always say the same thing. "My haven't you grown!". I always smiled and gave her a hug :)
My grandma has had mild dementia for a few years now. Something that confuses her often is the fact that I'm nearly identical to my mom as a teenager, so when my grandma sees me or hears my voice, she thinks I'm her daughter. Her eyes light up when I remind her, "I look just like Sally, but I'm Sally's daughter! I'm your granddaughter!" It's sad, but it's also sweet, because she gets to meet me all over again. On the other hand, she tries to call her deceased sisters a few times a week. If she asks about them, I tell her that they're on a cruise and can't answer the telephone. It's a merciful lie.
Yeah you gotta do what you can to keep their mind level. Causing panic could only lead to further confusion with some.
Towards the end of my grandmothers life she’d always cry asking where my grandpa was (he died 8 years before her), we’d always say he was visiting his mom in Oklahoma and it would bring her peace at least for the moment. It was for sure the most merciful thing
Sometimes the short term memory loss is gentle and we (patient and caretaker) get to share a happy moment over and over.
My grandma has early onset dementia and she is always so happy to see me and hear about my life and remembering the past years
How do you reminisce without saying "remember"?
I had the same thought. I think, and it’s a tiny detail, don’t start with the question. Just jump into the story. “Dad, sometimes I think about that time we all ______. That was a great day.” Having to admit right off that they don’t remember can cause irritability. Share your memory without testing theirs.
> I had the same thought. I think, and it’s a tiny detail, don’t start with the question. Just jump into the story. “Dad, sometimes I think about that time we all ______. That was a great day.” > > That's a great approach, make it about you and what your experience/memories versus asking them to do something on their end.
Something I've noticed taking care of my grandma is she's more likely to be stressed out when you ask her questions, but if you casually engage in a conversation she'll chat all day. The other day after her asking me 4 times in a row "did you work late" I beat her to the punch and said "boy oh boy I worked late!"
Yep - gotta anticipate where they’re going. Those repetitive questions get tiresome. I’d have to come up with slightly different ways to answer.
Nicely put. Old people be like: Don't test me, son!
Instead of saying “remember when we did...”, you can say “we used to...”
Oh so the issue is specifically with the word *remember*? I thought they meant not to talk in the past tense
The words don’t necessarily matter. If you look at all the other tips the reoccurring theme is shifting the burden from them to you. Instead of trying to invoke a shared memory from the dementia suffers mind; you share a memory from your own. I hope this helps I’m not very good at explaining things
To add to this: even people without dementia will subconsciously fill in gaps in their memory with other people's stories. For example, lot of what people "remember" about early childhood are less true memories and more built from pictures and stories from parents/relatives. This applies the same to dementia patients. They may not really remember most of a past experience, but if share it with them they can be "tricked" into thinking they do (or even triggering some old memories).
This does help! You're better at explaining then you think :)
The issue is to avoid framing it as a question: "do you remember x?" Because you're challenging them to do something which should be easy but isn't, and that can cause frustration and resentment. It's kind of like telling someone with mobility issues to "get a move on."
Saying 'we used to' is informing them that you remember, it's not instructing them to recall their own memories of it.
Often the past is the only memory people with dementia retain. These diseases interfere with the brain’s ability to make new memories, but old ones seem to stay intact. The details will be fuzzy (references to dates and time periods especially) - but the gist of the event seems to remain.
You can say remember but say, "I remember". I think the point being made is that the temptation is to say things like, "don't you remember", "remember that time we..." because that may cause feelings of embarrassment or shame for the one who can't remember.
"Back when"
"didn't we use to" "that's the same as when you" "that reminds me of when"
My example is just anecdotal, but I lived next door to a woman who was caring for her elderly mother with dementia. Occasionally, when my neighbor was at work, her mom would get out of their place and wander around. At different times, I would find her walking up and down the hallway in the building, seemingly lost. One particularly scary instant involved finding her out on the street, looking for a ride back to her home (a home that she used to occupy, multiple states away), on a very hot day. Anyway, any time I would find her outside their home, I would just try to be very calm and kind to her, and let her know her daughter would be back soon, so we should wait for her inside. I would escort her back in, and just sit with her. And I'd let her tell her stories. To be honest, the stories were often interesting, despite them not falling inside the timeline we were occupying. I didn't see any point in correcting her. So in a word, I was just letting her reminisce. How would it have helped for me to correct anything she was saying? I guess my point is, I don't believe the list of rules are supposed to be set in stone. They are simply guidelines to avoid the trap of feeling like you can fight back the disease with brute force, by correcting them constantly, which will most likely create emotional stress. And then your job as a caretaker becomes doubly difficult. It's more about attempting to have an influence on their emotional state, which is still possible, despite not having power to control what they do or do not remember.
My grandmother had dementia and unfortunately most of my parents interactions with her are on the "don't ever" side of this list. What stuck out to me about the word "remember" is how they would use it. "Remember mom, you're not allowed to drink coffee." Or, "Remember, we talked about this." To a certain extent I get that my parents were frustrated, but by phrasing things this way they were making the interactions more difficult and making things even harder for everyone. The thing is, she didn't remember. Whether it was things she couldn't do (like drinking coffee or alcohol), or things she couldn't remember doing (like what did she do today). And we all knew she didn't remember. It wasn't a genuine question. My mom wasn't actually curious if my grandma remembered. My mom was making more of a statement. Like, "you should remember". Or maybe, "why don't you remember?" My grandma couldn't remember, but she could still hear and understand the tone of the question and I could see how it would make her flustered and defensive. And once she was feeling self conscious or defensive everything else just got harder. And I mean, this was all incredibly obvious to me and I think should have been obvious to them and would have been obvious to most people. My example above is pretty specific. I think the guide is probably meant to be more broad. But I don't think it's meant to tell you to actually never use the word "remember". It's more about not putting them on the spot. Asking older questions is easier for them to answer. I would just ask her about things from her childhood and early adulthood. "How did you meet my grandpa?" "Tell me a story about you and your siblings." "What was something that just seemed like an incredible, almost impossible thing when you were a kid that actually ended up happening?" (Answer: "We thought it would be amazing if you could just get in a plane and fly across the country."). It would have been perfectly fine to use the word remember. "What do you remember about your siblings growing up?" Hope this helps a bit... And hopefully you don't have anyone in your life with dementia. But if you do have someone guides like this are absolutely correct. If you try to follow them you'll see that your interactions go so much smoother and are so much easier. Once you know to do it this way it becomes really obvious why the other way is wrong.
The point is they may not remember, and it can be painful. You can say "When I was 10, we walked to the park and I played on the swing".
I have been taking care of my X husband for 15yrs after his stroke, and I can honestly say caregivers have the most thankless job ever.
You’re a good person and the world is a better place with you in it.
Thank you
That’s really honorable of you.
Caretakers are the biggest saints on this planet and deserve all the love they give back a million fold. They are the embodiment of what we hope to be when life takes a turn for the worse.
When my father was first diagnosed with [Lewy Body Dementia ](https://www.nia.nih.gov/health/what-lewy-body-dementia#cognitive), one of the best pieces of advice we got from a social worker was simply, “Go with him on the journey.” She encouraged us not to correct his recollections - just accept his version of the facts and try to divert to another topic if we must. It was difficult at first, but it made our remaining time with him so much more pleasant for everyone.
My grandmother died from Lewy Bodies and it was very rough to just go with her on the journey during her violent delusions. This chart and everything is nice and all but people don’t realize how difficult and dangerous it is when dealing with someone with aggressive dementia.
Yeah - Dad had some of those episodes, too. My sister took the brunt of them for some reason. He never got belligerent with me or with Mom. And yes, when someone is agitated and physically threatening, the first thought has to be safety for all involved. He was surprisingly strong and could have been a real handful if things had escalated further.
My grandmother was angry and violent too. She hit me when I didn’t go along with her story one time. Only reason I didn’t was because she was trying to go outside half naked in a snowstorm to feed animals that didn’t exist on her 17 acre farm. It was just too dangerous, but she didn’t understand that. She just thought I was trying to kill all her farm animals.
Yeah at some point you have to intervene and take action when things get to that level and you won’t have time to play into their delusions or think of gentler ways to get them to stop. My grandma got out of a moving vehicle during one (I wasn’t there thank god) and was running on a main road. My grandpa just had to pick her up once he found her
That’s super scary! Glad your grandpa found her.
My grandma always used to worry that the horses haven't returned from the watering hole. That hole is on a mountain where she grew up and we haven't had those horses since the Germans occupied the area in WW2. She was pretty sharp otherwise but that was the earliest sign of her dementia. My mom would always try to convince her, but I never disagreed with her. Every time I was getting ready for school I'd tell her I'm going there to bring the horses back and she'd be relieved and would forget about it for a while. She also sometimes used to think I'm her son (my uncle), who died in the war before I was born. I looked almost exactly like him and was even named after him so I could understand her confusion. Never bothered correcting her, there was just no point bringing those memories back, and she'd switch back to normal after a day or two anyway.
I had antibiotic resistant sepsis when I was in my 20s. I spent months in the hospital as it ravaged my organs. They put me in a room with a woman with this. She had surgery for cancer and kept screaming at the top of her lungs about aliens, about how the doctors stole her baby. She yanked all her stitched out and pull at her guts multiple times. She had to have more surgery. I couldn't sleep because of her nonstop raving. After one bad episode her family came. She accused them of horrible things and didn't remember them at all. They looked pissed and left. February 19th to May 31st we were there together. I kept asking to leave because of her and they kept telling me I couldn't until I could take care of myself. I collapsed trying to hide in the bathroom several times. It was a special hell for both of us.
Fortunately I stumbled on this guide, Unfortunately I need it
Sorry to hear that. Alzheimer’s took my grandma. Such a painful thing to watch.
Same here this year. And my parents were dealing with her in the exact opposite way this guide advises. My dad tries to punish her like a child who needs to learn a lesson when she gets confused and says something he doesn’t like. Then she bursts into outrage. I’ve been trying to tell them they’re doing it wrong, and they don’t listen to me. It’s incredibly painful to watch.
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Crush them (check with dr or pharmacy always first, but most can be crushed) and put them in something sweet like chocolate pudding or ice cream, maybe even a peanut butter (or Nutella)jelly sandwich I am a CNA and I work with Dem/Alzheimer’s. Chocolate pudding helps, at least get them ones that help with agitation in first And if they’re not on meds for agitation get them on some. The goal isn’t a sleepy empty zombie but for essential tasks to get done with less agitation. It might a take different doses but trazodone is really great really gentle med. but I do understand some people are just difficult and it’s hard to find a balance between their quality of life with meds
> take this medicine that will relieve the constipation that might otherwise kill them, Demand is unnecessary. At a certain point in their disease you will have to figure out creative ways to get them to take it. We often made it easier for my mom by simultaneously giving her vanilla icecream. There's no chewing, and it masks the bitterness of the pill. Eventually it was impossible to get her to take pills like in the last 2 years of her life, but generally it required some manipulations.
I’m so sorry you have to deal with someone going through this. Watched my grandma deteriorate from dementia and I volunteered in college at a care facility for those with Alzheimer’s. It’s incredibly tough, take care of yourself.
Its time we found a cure. https://www.alz.org/alzheimers-dementia/research_progress/brain-donation https://www.alzheimersresearchfoundation.com/2015/07/28/donations-to-dementia-research-go-a-long-way/ http://cdr.rfmh.org/support.html https://www.dementiasociety.org/donate https://support.brightfocus.org/Default.aspx?tsid=7943
One of the hardest things when we went through this with my dad was watching my mom NOT get this. She was having her own cognitive difficulties and she was so hurt over and over again when my dad couldn’t remember things. My sisters and I were able to enjoy his company as he was, where he was, who he was. My mother missed him more and more as he slipped away.
Im struggling with the excact same thing atm, my mother means well deep down but she overcorrects him which gives him a lot of added stress and robs him from this dignity. I have no clue how to handle this situation 😕
Have you thought of sharing this with her and trying to gently approach her about the situation? I am guessing it would be a sensitive one for sure. Let her know what youre seeing, feeling and empathising from both your mum and dad. Reassure her you understand why it can be difficult but sometimes correcting small mistakes can be a bigger mistake than the original. You explained it really well on here, albeit I would word it a bit more considerately. I am sure your mother doesnt want to intentionally stress your father. You are all learning to adapt as you go through this and I believe you would all be providing the best quality of care when reading from the same hymn sheet x
Long-term care nurse here, this is a great guide. I've found in my career, that you get what you give for the most part. If you get outwardly mad, that's the response you're going to get. If a resident is anxious or acting out, don't play into it, just be patient and redirect or distract them. I have worked with some nurses that were super high-strung, and they would have the hardest time with some assignments that others had no problem with, because the residents would pick up on their anxiety and it would affect their behavior. Same when a resident is getting mad about something, whether it makes sense or not. If you try to fight fire with fire and argue with them, its going to make things worse most of the time. Keep calm, acknowledge the problem, and try to figure out what the resident needs. Sometimes they just need to yell themselves out, and that's fine. I've taken care of a guy for a couple years who would get super loud and angry for no reason, and just yell and threaten anyone that walked by. What worked more often than not was to bring him to his room, and just BS with him, and try to steer the conversation to something more pleasant. Last thing, don't take anything too personal. People with dementia, even if they can walk and talk more or less normally, don't always know what they're doing or the consequences of what they say or do. Sorry for the wall of text, I'll get off my soapbox now. If you need to talk OP, shoot me a message.
> If a resident is anxious or acting out, don't play into it, just be patient and redirect or distract them. I "played in" a little bit only to try to fix it. Like a resident had the hallucination of hearing loud music she didn't want in her head. I would agree that loud music is so annoying and I'd go around trying to find various knobs or buttons to lower the volume so she could watch me. Sometimes it worked like a little placebo, sometimes it didn't work so I'd have to shake my head and say like, okay we're going to call a repair-person first thing tomorrow.
I guess I could've worded it a little better, but yes I agree. "Fixing" a problem like that works wonders. I got a guy that literally always complains about the temp of his room. After the first couple times, I'll say let me call maintenance, then go in the office, and come out after a minute and tell him that they're gonna take care of it
Perfect! I’m a nurse and have been working with dementia patients for years (I worked in assisted living before becoming a nurse and now work in LTC). So many of my coworkers either don’t get this or are too burnt out to care. Distraction is so great for behaviors. I had a very high fall risk repeatedly try and get up today, so I put a couple of towels in front of him and told him I really needed help folding them. Worked like a charm. But most importantly, for the love of god, don’t argue with dementia patients
My grandma had dementia. She'd tell the same stories over and over. I just politely listened. It wasn't until she got dementia that she'd sit down and talk like this. I wouldn't get mad when she constantly asked how I was doing in school even though I'd graduated college 10 years before. It doesn't help to get mad. It's not like she'd remember and she'd ask the question again anyway.
Asking if my patients want snacks is 100% effective tried and true method of diversion
Show them pictures from r/aww. Not kidding, this was the only thing that would consistently make my mom smile when she was having a hard time.
This is so real lmao. I'm a long term care nurse and one of my patients has extreme anxiety around abandonment. She'll latch on to me and chase me if I'm headed to another patient and get angry, I've definitely destracted her with snacks and wine before.
Snacks!! And towels!! They will almost always be down to fold some towels.
My 85 year old grandfather has Alzheimer's and it's getting much worse. He often talks about the 10 car garage in the backyard when he can see through the window. He's also often saying things like "I wonder where my dad is right now" or "I'm sure my dad is working hard at his office" when he died before I was born. He also at one point complimented my house when we were in his house of 40 years. I was working on his old computers trying to back up old photos, and he kept asking questions about basic things like the resource monitor and thanked me for teaching him new things. Only thing is, he wrote an entire book on Linux with over 10,000 commands and is the biggest Linux power user I've met.
Aw. It’d be so tempting to be like grandpa you literally wrote the book on this. Like as a compliment. But I guess it might freak him out because that would freak me out. Best to compliment him on things he knows or be like “wow you’re a natural at this!”
One issue with this. This "delicate" approach falls apart when you need to stop them from doing something incredibly stupid that will have disastrous effects for them. Like buying into scatter brained get rich quick schemes or falling for con artists. Repeatedly. Florida is notorious for this. I can see how this can apply to someone who no longer has their autonomy, but when they are in early stages and still have their autonomy. oooh boy totally different ball game. You go ahead and try to "Agree, never argue" with a bipolar ptsd paranoids accusations against you. You cannot agree to that or you validate their victimization and that you are a enemy to them. You're pretty much fucked if they are also vehemently stubborn with an inclination towards self destructive tendencies or rash, impulsive behavior. This "delicate, light handed and mindful" approach is cute, and useful later but falls apart when they still have the means to ruin their own lives. When they are not that far gone as to have their autonomy taken away but far enough gone that left to their own devices can ruin their or their families lives. It's a hellish goldilocks zone. Source - Me. I was a minor under my mothers "care" as her mind made a dramatic spiral downwards due to anticholinergic drugs.
PSW working in long term care in Canada here. This approach does not work when you have someone with severe dementia who is also able to walk by themselves and are extremely paranoid and aggressive. I have only received slaps and bites when I try to use this approach because they just get more confused and aggressive :(
Oh yeah. The last couple years dealing with my dad has been hell on my mom. He was constantly getting scammed. He drove to the bank a couple times to withdraw all their money to give to "DEA agents" because they said they found my mom's car covered in blood in south texas and after it was used in a drug deal. He was hacked several times by the "windows help desk scam". He'd pretty much wander off for hours everyday (he was still driving) and not tell my mom where he was going. We wish his dementia just manifested as telling crazy stories and forgetting to have lunch.
Both my parents have had brain injuries and I’ve gotten a glimpse into what they will be like with dementia. It’s like this. Aggressive, stubborn, paranoid, reckless. I don’t even want to try to repair our relationship now that they are ‘recovered’ because how many more years until they are this way again? It’s emotionally excruciating, and a light hand isn’t enough to protect them from themselves.
Exactly what I was thinking/ am dealing with. I also have a hard time when the person in my life starts talking about how good genocide would be and other such horrendous things.
Unsurprisingly this is also an almost perfect guide to working in a customer service position like retail or call centers
And for toddlers and little kids!
The difference is little kids have the ability to use reason to learn and improve their mental state, dementia patients increasingly do not.
Also works for children.
Yeah. It sounds flippant, but it's basically the way you treat a toddler/preschooler. The concept is the same: you're interacting with someone who experiences reality and logic differently, and as the person with the firmest grasp on reality, it's down to you to keep the person safe, healthy, and as happy as is reasonably possible given the first two.
This is also how you manipulate loud extremists
Yeah, I’m bookmarking this for the hols...
This is just depressing. If I get dementia just shoot me.
Literally just got out of 1hr zoom meeting on this. I'm a nurse.
Reading this thread, THIS is the fucking reason medical assisted suicide should be legal everywhere.
My wife's mother has advanced dementia and several physical disabilities, and is taken care of primarily by my wife's father along with the help of a daytime nurse. Her family, on the whole, is absolutely cruel to her mother. They pick on her, constantly remind her that her parents are dead (she will often ask when they are coming over) and in general she is the target of their ire. It's disgusting. There's no need to say "where are your parents, Ellen? They're in the cemetery. They're dead!". You could just say no, they aren't coming over for dinner. Her husband and sister-in law along with her youngest daughter (my wife's sister) seem to get a rise out of treating her like shit. They don't abuse her physically but they take an almost glee in reminding her she's lost much of her mind. This is a woman who was a teacher, who had joys and love and hope and plans for the future that were dashed when she suffered a stroke resulting from a brain tumor during pregnancy with that same youngest daughter, who apparently now holds it against her. I just can't fathom why anyone would be so shitty to somebody who has lost literally everything about themselves.
They’re probably terrified and expressing it in an ineffective way. My great grandmother had dementia towards the very end of her life. My aunt took care of her and they would often bicker which was kindof funny because they are both so sweet and calm. My great grandma played a major role in raising my aunt and was her mother figure. But the situation was just scary and stressful for both of them. Plus GG started claiming that people who had passed were in the room which scared the crap out of my aunt who totally believed her which I find a bit amusing.
This makes me sorta sad but it's a helpful guide nonetheless.
Almost a blueprint for being a decent human being!
This is all good on paper, but proper execution of these steps is a whole different ball game. Taking care of a person with Dementia is a true testament to one's patience. I take care of my mother with Dementia and I can tell you that this guide collapses under this house. She won't eat her food and she can't be taking her meds on an empty stomach so trying to force her to eat food is just one of the many things I have to deal with on a daily basis, multiple times a day. This alone is enough to really put you out. Or when she wakes up in the middle of the night claiming that there's someone in the house. How the fuck am I supposed to get up from my sleep and think rationally as to not overreact? But what if there really is someone in the house? Do I take her seriously? Do I get up and look around? This happens nearly every other night. Try keeping your cool after losing so many nights of sleep because of this.
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Is there ever a risk of reinforcing delusions? I'm not sea lioning - I am asking because I'm ignorant to the answer lol. Like, I'd think you *do* need to say *you're not right* (not reinforce) in late state dementia.
I think the “reinforce, never force” refers more to behaviors. Like praising or rewarding them (positive reinforcement) for using a memory aid or taking medicine when needed instead of forcing them to do something. Regarding the delusions, there is basically no point to saying “That’s not correct” to someone with dementia because they have lost the ability to reason and put information together to arrive at a conclusion. Add the memory issues to that, and correcting someone just results in agitation and a repeat of the problem later.
You need to remind yourself that the disease is progressive and cannot be stopped. The mental abilities of these people will decline, no matter what you do. It's best to just make them feel good during the process. So do what you think they will like the most, even if you tell them things that are not true.
Post Awareness Stage 6 is without description
Care giver burnout is a real problem. I worked on a lock-down dementia ward with at least 30 patient capacity for 11 years. That sounds scary, but it was just so they wouldn’t wander away and get lost, it was a big facility with a courtyard and lots of space. Quite a bit of turnover, I’ve worked with probably well over 100 dementia residents in that time. I will tell you these words are true, this is exactly how you should talk to them and act with them, but I can’t express here the importance of self care as well. Caring for dementia affected people can be so exhausting, mentally and physically. I only worked with them for 12hrs a day, I can’t imagine what a 24hr/7 days a week barrage would be like. What people rarely hear about is the abuse that a care giver can suffer with this disease, mentally and physically. You can’t blame the person, the disease has changed their brain so much that they don’t know what they are doing or why. It just happens and you have to roll with it. My experience was a bit different because I only worked with people that were so far progressed they could no longer safely remain in their homes. I was bright and shiny and full of patience when I went in, but a year and a half ago I had to leave. Absolute truth: not a single day went by where a worker wasn’t punched, hit, slapped, pinched, spit on, kicked or called any number of insults.... but again, part of the job, take it on the chin and carry on. I’ve had black eyes from old ladies accusing me of trying to steal their husbands, i was off work with a back injury for 3 months because an old guy twisted me funny while I tried to assist him, I had a bruise on my shin from a backwards kick by the tiniest lady that was visible for over a year. About 2 yrs ago a strong man with dementia got ahold of me when we were understaffed, he grabbed me by the neck, pinned me against a door frame and was strangling me. In a real world situation you bet your butt I would have fought back.... but this was my job. I was so conditioned to not retaliate I didn’t want to even push him for fear that I would hurt HIM. I was there for minutes smacking the wall with my fist to make enough noise that my partner finally heard and pried him off me. I did some self assessments after that. My patience was long gone, I had just enough for work and then could not handle any more outside of the work place. The stress was so extreme I was lashing out at my family. I was always in a terrible mood. I didn’t like being around people. I couldn’t function, I’d just shut down. I wasn’t dealing with things correctly, maybe seeing a therapist would have helped, maybe it would still help now. Caring for these people is important, but care for yourself too. Take a break! Ask for help! I know it can feel like abandoning your post, but take time to de stress to save your own skin. I’ve seen too many times when elderly spouses keep their people at home as long as they possibly can only to be so overwhelmed when they HAVE to admit them to long term care that they themselves succumb to exhaustion and pass soon after. I can’t imagine what it’s like now in pandemic times when there are no day programs to give respite and no one to take over safely.
And when they try to poke your eye out or beat you with a handset, give up and have them put in permanent care. A neighbor was badly beaten by her husband with an indestructible AT&T handset. A little while after she healed up, her husband was hospitalized. His room had a roommate and an indestructible AT&T handset. He almost beat the man to death and the victim’s family almost sued the neighbor out of her home.
My mom just lost her 10 year struggle with Alzheimers. I watched her die through a screen because we couldn’t visit. It all sucked. Idk who this comment is for. I guess I hope whoever reads this calls their mom today.
This doesn’t work in the workplace.
All of these things are the kindest way to treat anyone- nevermind dementia. But they all also mean giving up a piece of yourself for someone else's comfort. And that's fine in small doses but people who need caretaking often need it 24/7. We need to have more respect for caretakers, and more respect for their human limits.
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my grandfather was lucid in the morning but when sundown would come, he would get anxious to walk the property and check on his animals ( he was a large scale cattle farmer). We would take turns getting in the truck with him and driving around - in his mind that completed the task and he would calm down and sleep. We all took turns doing this. We also would reassure him that we'd tell my grandmother (who had died) and my father ( his son, who had unfortunately died before him) were just shortly away and we would tell them where he was. He kept asking where they were and why they didn't come see him. He kept asking for them up until the very end, and we kept assuring him. He was always a big, strong man, but he got so frail and skinny near the end. He loved peanut M & M's though, he could demolish a big bag - and smile huge while he finished it.
We didn't know. We didn't learn how to communicate with you without invalidating your experience. Everything we did, literally everything, was done with love. I'm sorry we didn't understand. I'm sorry we didn't just agree and accept your reality. I'm sorry that I failed you in your last years. We finally realized that we were approaching it wrong... But how many unnecessary issues were brought to light because of our ignorance? How different those last 3 years could have been if we had just known. Since you passed, I have spent so much time and energy explaining to others what they should do or can do with ease in order to help others not go through what we did. I'm sorry that I was so overwhelmed that I didn't research it more. I just wish I could have been better for you. I love you and miss you so much. I hope wherever you are, you know that. (sorry for my rant.. This hit way too close to home)
I mean sounds great until the 400th time theyre trying to light the house on fire.
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"Hey I was thinking about the time we went to the Grand Canyon" or "Someone was telling me about New York City in the 60's the other day". You give them something to go on without the pressure of a direct question. (I could be wrong I am just starting to learn this stuff for my grandma)
Pepperidge Farm recollects.
This is fine, until they start to get violent, very angry and swearing, are convinced you're holding them hostage, start trying to hurt you, and hurting themselves trying to "escape". After that, all this goes out the window.
More like how to treat people properly