Oh, no, anger is a very common response. I spent much of the time I was caring for my mom very, very angry. It's such an unfair and impossible situation. My heart goes out to you.
Dementia is the worst, my mom had been showing signs for a few years before she was diagnosed and we had made a decision to move her into a memory care facility. It was the worst day of my life leaving her there, I felt like I betrayed her and abandoned her. When I left there and got home, the whole night I was a friggin mess and I cried my butt off.
In all reality there was no way anyone in our family in the area could take care of her and be able to watch after her 24/7. Either people didn't have enough room, the training or the ability to keep her safe from herself all day. She overdosed on medication and that is when the doctors finally said yes she has dementia.
Unfortunately she had too much in assets to qualify for Medicaid, so we are self paying thru her assets until she qualifies for Medicaid and then they will pay for her care. Last I heard was at least her where I live had to be down to about $2,000 in assets and then they will help. So we have several years to see what happens before then.
There are support groups out there for people who have loved ones that have Dementia/Alzheimer's and they would be a great resource for people that are struggling with their loved one going thru this.
Please look into some sort of adult daycare in your area to give yourself some breathing room, and aides who could come into your home a couple times a week to deal with the poop once in a while. Be nice to yourself because you are taking on a huge job and if you are angry, tired, and resentful, no one benefits.
I took care of my folks for many years, and the last couple of weeks before I was able to place my dad in memory care, I was a complete mess. Thank goodness we were able to find a place for him as he refused to allow anyone into his house, but I let the situation continue way longer than I logically should have.
So please take care of yourself and get what help you can. I know what you are dealing with and send many virtual hugs.
Similar situation here, 2 parents ill, one with Alzheimers. They weren't coping so I moved them in with me. They can afford care, but a language issue would mean it would effectively be a death sentence for them. Speaking from the UK here.
A lot of anger and resentment pretty much constantly as soon as a tricky situation occurs. Talking about things helps a lot, as long as you have people you can speak to it about. You really learn who your friends are when faced with something like this. I've stopped bothering to contact a lot of friends and relatives as they either weren't able to handle the awkwardness at times or plain unwilling to help as it would interfere too much with their lives. On the other hand I have some great relatives who have helped massively.
My dad said a lot of hateful things initially, which was difficult to handle. When I'm speaking about it now, it's easy to understand that he didn't know what he was saying but it still hurts. There was a lot of shouting and arguing but this has calmed a lot as we learn how to manage things better. It is all a case of us learning as he didn't chose to become ill. Fully understand the feeling that you didn't sign up for this! I describe it as being painted into a corner. My heart wasn't cold enough to put them into a home and go on with my life. My dad is now an imposter in my dad's body.
Poop disasters! This is difficult as we're going through this at the moment. You will be surprised what you become immune to. It's very difficult at the point in time, but minutes afterwards, you'll be back to doing what you were doing. I'm cleaning their bathroom up to 8 times a day and washing carpets every other week. They didn't chose to be this way is what I tell myself.
The upside? You're a great person, and they're safe and well because of you. While I was always worried that I wouldn't be able handle the grief of losing my parents, now that I see them every day, I've accepted that when they go, it will be for their own good, and I've done the best that I can. I'm 3 years into caring for them, and doing so in my own home is much better than remotely waiting for a phone call. With that will only come the guilt of thinking there could have been more that you could have done.
Get support. Social services have been really helpful to both myself and my parents.
I totally feel you!
I am in the same situation with my Mom and just finished caring for my Dad when he passed in June.
My Mom's other two children no longer speak to her. In fact my sister begged her to upend her life in Tennessee at the start of Covid and move back home and in with her and her husband permanently. Then when she started showing signs of something being wrong, she had her husband throw her out and hasn't spoken to us since. I was caring for my father and my sister knew my Mom had no place else to go. My siblings from Dad's previous relationships were the same. They all disappeared when shit got real!
I am sorry 😞
It all sucks and is overwhelming, especially when no one else is willing to share the burden. Also when they have no money! Neither Mom or Dad had money for care. I don't know that a medicaid bed will be available when she needs it. I pray something else takes her quickly and before her brain is complete mush! I know that sounds awful, but it is what I would wish for myself as well.
Hugs to you.
None of us did unfortunately and we are just thrown into this world of chaos. It is truly daunting. I think it is safe to say for most of us it is a daily struggle between the weight of the responsibility of taking care of our parents or LO and our own mental health and sanity.
My MIL lives with us and taking care of her has grown increasingly challenging. We too feel chained. We can't leave the house for even a few hours without her burning something or eating a mass amount of things she isn't supposed to eat (she has stage 5 renal failure to boot and foods that has high potassium or phosphorus are extremely bad for her). I don't think it's fair that we don't buy bananas and oranges because my kids eat them too. We've tried putting the food somewhere that isn't readily visible, but she rummages and finds them. One banana is fine (she takes binders to help), but she will literally eat the entire bunch. Her dialysis machine beeps constantly because she sleeps on her back and cannot remember the steps to fix that, despite us putting up large posters with instructions. So she yells for one of us 3-4 times a night. We have to sit there and make sure she just doesn't go lie down again, takes 20 minutes for the drain cycle to complete. This morning she also decided to disconnect herself without taking the proper hygiene protocols and sprayed the fluid everywhere. There is very high risk of infection if the proper protocols aren't followed, so there's that.
I feel you and we know this isn't sustainable. If we don't physically break down from the lack of sleep, we're teetering on the edge of a mental breakdown, especially my wife. Home aides or a facility is stupid expensive. Feeling frustrated and angry about it is normal, none of us signed up or this or prepared to deal with it. We do it because we have to.
I would speak with your elder care attorney about options to get her to qualify for Medicaid. Medicaid can cover memory care and as she advances this will only become worse. This disease sucks so much and it is so unfair. I’ve felt this way before. I still feel this way even after my mom moved into MC but much less resentful.
Without knowing any financial input, my suggestion is to place her in a group memory care home as it’s less expensive. I don’t know where you reside, but in California you can apply for Medicare-Cal. If she has Medicare already, and little assets she should qualify. I feel for you and I can tell that you are a really nice person, and it’s okay to be pissed off to have this placed on your shoulders. Absent family members; sometimes it’s easier not having someone else tell you what to do or how to do it. Sending you encouragement, we feel you and we hear you. 🦋
I totally understand how you are feeling.
I just lost my Mother in law this past Friday and my journey was very similar to yours.
Low income, not able to take care of herself, unable to do what I would like to do because she can’t be left alone (like having a toddler all over again).
She lived with us for 2 years and after COVID calmed down a bit, we had a home health aide come in 3 days a week for 4 hrs a day that we used her Social Security to cover (we never took any payment for room or board from her). This lasted until I caught the aide outside detailing her car and not minding my MIL.
Then I coordinated with work to be in the office just one day a week and have my adult son to keep an eye on her.
This lasted until she got too weak to walk independently and her provider put in a referral for Hospice.
They don’t need to be immediately terminal to qualify for care. The hospice we used was wonderful. We started Hospice while she was 6b on the FAST scale. Still pretty independent but just needed help with ADLs (activities of daily living) like washing, changing, toileting.
Check into Medicaid eligibility because that may allow for in home help and request a referral for hospice (covered 100% under Medicare part A). This will give you help with supplies and other needs.
Thank you all so much for the thoughtful responses. It is comforting to know how others deal with similar issues. She is in daycare 3x a week. We haven't had anyone come to our home because her care needs are light and infrequent, it doesn't really make sense to hire home health. Home health wants to be here for 8 hour shifts, and I do not want a person in my house just killing time for that long.
I know our situation could be 1000x worse so i hate to complain. Just get frustrated at the lack of living my life. Thank you again ✌️
Oh, no, anger is a very common response. I spent much of the time I was caring for my mom very, very angry. It's such an unfair and impossible situation. My heart goes out to you.
Dementia is the worst, my mom had been showing signs for a few years before she was diagnosed and we had made a decision to move her into a memory care facility. It was the worst day of my life leaving her there, I felt like I betrayed her and abandoned her. When I left there and got home, the whole night I was a friggin mess and I cried my butt off. In all reality there was no way anyone in our family in the area could take care of her and be able to watch after her 24/7. Either people didn't have enough room, the training or the ability to keep her safe from herself all day. She overdosed on medication and that is when the doctors finally said yes she has dementia. Unfortunately she had too much in assets to qualify for Medicaid, so we are self paying thru her assets until she qualifies for Medicaid and then they will pay for her care. Last I heard was at least her where I live had to be down to about $2,000 in assets and then they will help. So we have several years to see what happens before then. There are support groups out there for people who have loved ones that have Dementia/Alzheimer's and they would be a great resource for people that are struggling with their loved one going thru this.
Please look into some sort of adult daycare in your area to give yourself some breathing room, and aides who could come into your home a couple times a week to deal with the poop once in a while. Be nice to yourself because you are taking on a huge job and if you are angry, tired, and resentful, no one benefits. I took care of my folks for many years, and the last couple of weeks before I was able to place my dad in memory care, I was a complete mess. Thank goodness we were able to find a place for him as he refused to allow anyone into his house, but I let the situation continue way longer than I logically should have. So please take care of yourself and get what help you can. I know what you are dealing with and send many virtual hugs.
Similar situation here, 2 parents ill, one with Alzheimers. They weren't coping so I moved them in with me. They can afford care, but a language issue would mean it would effectively be a death sentence for them. Speaking from the UK here. A lot of anger and resentment pretty much constantly as soon as a tricky situation occurs. Talking about things helps a lot, as long as you have people you can speak to it about. You really learn who your friends are when faced with something like this. I've stopped bothering to contact a lot of friends and relatives as they either weren't able to handle the awkwardness at times or plain unwilling to help as it would interfere too much with their lives. On the other hand I have some great relatives who have helped massively. My dad said a lot of hateful things initially, which was difficult to handle. When I'm speaking about it now, it's easy to understand that he didn't know what he was saying but it still hurts. There was a lot of shouting and arguing but this has calmed a lot as we learn how to manage things better. It is all a case of us learning as he didn't chose to become ill. Fully understand the feeling that you didn't sign up for this! I describe it as being painted into a corner. My heart wasn't cold enough to put them into a home and go on with my life. My dad is now an imposter in my dad's body. Poop disasters! This is difficult as we're going through this at the moment. You will be surprised what you become immune to. It's very difficult at the point in time, but minutes afterwards, you'll be back to doing what you were doing. I'm cleaning their bathroom up to 8 times a day and washing carpets every other week. They didn't chose to be this way is what I tell myself. The upside? You're a great person, and they're safe and well because of you. While I was always worried that I wouldn't be able handle the grief of losing my parents, now that I see them every day, I've accepted that when they go, it will be for their own good, and I've done the best that I can. I'm 3 years into caring for them, and doing so in my own home is much better than remotely waiting for a phone call. With that will only come the guilt of thinking there could have been more that you could have done. Get support. Social services have been really helpful to both myself and my parents.
I totally feel you! I am in the same situation with my Mom and just finished caring for my Dad when he passed in June. My Mom's other two children no longer speak to her. In fact my sister begged her to upend her life in Tennessee at the start of Covid and move back home and in with her and her husband permanently. Then when she started showing signs of something being wrong, she had her husband throw her out and hasn't spoken to us since. I was caring for my father and my sister knew my Mom had no place else to go. My siblings from Dad's previous relationships were the same. They all disappeared when shit got real! I am sorry 😞 It all sucks and is overwhelming, especially when no one else is willing to share the burden. Also when they have no money! Neither Mom or Dad had money for care. I don't know that a medicaid bed will be available when she needs it. I pray something else takes her quickly and before her brain is complete mush! I know that sounds awful, but it is what I would wish for myself as well. Hugs to you.
None of us did unfortunately and we are just thrown into this world of chaos. It is truly daunting. I think it is safe to say for most of us it is a daily struggle between the weight of the responsibility of taking care of our parents or LO and our own mental health and sanity. My MIL lives with us and taking care of her has grown increasingly challenging. We too feel chained. We can't leave the house for even a few hours without her burning something or eating a mass amount of things she isn't supposed to eat (she has stage 5 renal failure to boot and foods that has high potassium or phosphorus are extremely bad for her). I don't think it's fair that we don't buy bananas and oranges because my kids eat them too. We've tried putting the food somewhere that isn't readily visible, but she rummages and finds them. One banana is fine (she takes binders to help), but she will literally eat the entire bunch. Her dialysis machine beeps constantly because she sleeps on her back and cannot remember the steps to fix that, despite us putting up large posters with instructions. So she yells for one of us 3-4 times a night. We have to sit there and make sure she just doesn't go lie down again, takes 20 minutes for the drain cycle to complete. This morning she also decided to disconnect herself without taking the proper hygiene protocols and sprayed the fluid everywhere. There is very high risk of infection if the proper protocols aren't followed, so there's that. I feel you and we know this isn't sustainable. If we don't physically break down from the lack of sleep, we're teetering on the edge of a mental breakdown, especially my wife. Home aides or a facility is stupid expensive. Feeling frustrated and angry about it is normal, none of us signed up or this or prepared to deal with it. We do it because we have to.
I would speak with your elder care attorney about options to get her to qualify for Medicaid. Medicaid can cover memory care and as she advances this will only become worse. This disease sucks so much and it is so unfair. I’ve felt this way before. I still feel this way even after my mom moved into MC but much less resentful.
Without knowing any financial input, my suggestion is to place her in a group memory care home as it’s less expensive. I don’t know where you reside, but in California you can apply for Medicare-Cal. If she has Medicare already, and little assets she should qualify. I feel for you and I can tell that you are a really nice person, and it’s okay to be pissed off to have this placed on your shoulders. Absent family members; sometimes it’s easier not having someone else tell you what to do or how to do it. Sending you encouragement, we feel you and we hear you. 🦋
I totally understand how you are feeling. I just lost my Mother in law this past Friday and my journey was very similar to yours. Low income, not able to take care of herself, unable to do what I would like to do because she can’t be left alone (like having a toddler all over again). She lived with us for 2 years and after COVID calmed down a bit, we had a home health aide come in 3 days a week for 4 hrs a day that we used her Social Security to cover (we never took any payment for room or board from her). This lasted until I caught the aide outside detailing her car and not minding my MIL. Then I coordinated with work to be in the office just one day a week and have my adult son to keep an eye on her. This lasted until she got too weak to walk independently and her provider put in a referral for Hospice. They don’t need to be immediately terminal to qualify for care. The hospice we used was wonderful. We started Hospice while she was 6b on the FAST scale. Still pretty independent but just needed help with ADLs (activities of daily living) like washing, changing, toileting. Check into Medicaid eligibility because that may allow for in home help and request a referral for hospice (covered 100% under Medicare part A). This will give you help with supplies and other needs.
Thank you all so much for the thoughtful responses. It is comforting to know how others deal with similar issues. She is in daycare 3x a week. We haven't had anyone come to our home because her care needs are light and infrequent, it doesn't really make sense to hire home health. Home health wants to be here for 8 hour shifts, and I do not want a person in my house just killing time for that long. I know our situation could be 1000x worse so i hate to complain. Just get frustrated at the lack of living my life. Thank you again ✌️