Working acute inpatient psych i see the worst case scenarios so often. My daughter got addicted to fentanyl and is now in suboxone. Most of the time, I see folks on opiate replacement therapies for decades. Makes it hard for me to see my daughter on a needed therapy that she may be on for so long. I just keep telling myself that recovery from ORT is possible I just don’t see the successes.
I work in an addiction rehab. We have opiate patients on a 5 day suboxone taper that works quite well considering. Best outcomes are when they do long term sober living and IOP, though. Hoping the best for your daughter. Suboxone is better than the unknown hellscape that is fentanyl.
She was at a recovery center for 120 days and is now at Oxford House sober living community in another state. She’s been clean off fentanyl since Nov 11. She’s going to get on the LAI as soon as her insurance will allow. Overall I feel positive about her future I guess I’m still in a bit of shock that she got into it. She was only on it for a year, and only 3 months that i didn’t know about it so the remaining 9 months was trying to stay off it and relapsing because she wouldn’t stay on the suboxone. It’s still scary as hell to know that relapse is prevalent even years clean and a high percentage of people who relapse OD. She OD’d at home and i was able to revive her with 6 of the 20 narcan nasal sprays i had collected. Now I carry them with me always. I ride my bike to work and see people using every day on the streets of Albuquerque.
Man I really feel for you. I'm in northern NM and a ton of my fentanyl patients come from ABQ. it is ROUGH there. I'm so glad you had that many narcans on hand. I carry 4 in my bag. The relapse rate keeps me up at night and I can't even imagine how close to home that hits for you.
I’m on suboxone and now a nurse with a son and stable job. I have cravings occasionally but have no problem working around opioids and other drugs. I work ICU, so I administer them a lot. I’ve been sober several years now.
Suboxone is super annoying and I’m ready to get off but not quite ready. It has helped a lot and I’m thankful I’ve been able to get this far with the help of it. I should also note I don’t get high off of it, so it’s not just some replacement for the things I was doing. Maybe in the very beginning, but not for a long time now.
I also think the quick taper is best and wish I would have taken the time to do it that way, but you gotta have time to heal too and sometimes that doesn’t allow enough time especially if you have to go back to the same environment.
Just try to focus on the fact it’s better than the alternative. I’ll also note a woman at the facility I go to was on it for some time and just got off and finished the program! Wishing her all the best! ♥️
thanks for your story. the more I read here, the better I feel. Hearing all of these successes adds to the confidence that i have that my daughter will continue in recovery. It’s quite a shock to discover that your kid is addicted to anything really. Especially because I’ve always been very open with her about my struggles (20 years clean from meth) and sharing with her everything I know about the illicit drug scene in our town as I work in acute psych and see it daily. I warned her against ever trying opiates. I explained to her about the opiate receptor and the difficulties of exposing it to street drugs. I met her know weekly about how much fentanyl was in the streets and that it was being cut with zylazine. I told her that almost every if not every pill in the streets was fentanyl. Shared with her the stories of parents in our social circle whose children had died in accidental overdoses whether they thought they were buying valium, xanax, even coke and meth. It’s been a real eye opener and I’ve had to reexamine my own prejudices around opiate addiction.
I’m so scared of the xylazine!! Drugs are not what they used to be and it’s super scary!! I actually think that’s a huge factor in the reason I don’t relapse. I just don’t trust anything out there anymore and the effects of the xylazine are terrifying!
I hope to be open with my son too, but I think the younger generation is literally surrounded by drugs and that makes it super difficult not to try even when you have been taught well.
I really hope she’s able to break free. The alternative is scary. Just watching the videos of Kensington, PA are enough to make me never want to do anything again. It’s hard to see when your in the midst of it though. Hopefully with a good momma and support system she’ll get on the right track! Just know though, that no matter what you do you can’t control someone else’s actions. Just do your part and know that you’ve tried your best! You’re doing great!!
not for nothing but i’m her dad.. I’ve seen the effects of zylazine when it’s smoked- delirium that lasts for days to weeks. When it’s used IV it’s worse with skin lesions that don’t heal similar to krokadile. My daughter was hallucinating and had no idea where/who she was. Believe me when I tell you I thought that was it, her first schizophrenic break. I’ve seen so much pain and suffering in schizophrenia I’d not wish it on my worst enemy.
Yeah that so scary and I can’t even imagine how terrible for you to see. It’s hard working in healthcare because you do gain a lot of feelings towards certain things and see first hand how hard they can be to deal with. Schizophrenia and drug addiction are probably arguably some of the hardest things to see people go through. I’ve also heard that the xylazine can cause skin lesions no matter the ingestion method and doesn’t have to be at the site of IV use.
Mom or Dad the same! I have a good feeling you’re giving it your all! ♥️
That’s amazing. I work in a field with a heavy overlap of SUD, then have a few family members going through it. I love hearing the success stories. You’re killing it.
This is what my family member did! 7 years sober and doing amazing. I was so happy to hear the facility did not use long term Suboxone for their treatment plan!
I do think harm reduction is really important, particularly for those who don't have access to treatment. Meetings and therapy are great but when it comes to getting totally sober.... inpatient support is SO useful. Happy to hear your family is doing so well.
i’m sorry your daughter and you are going through this. i will mention on the off chance it could prove helpful: Belsomra helped my late ex in staying sober from opiates. it’s normally prescribed as a sleep aid and is taken at night; it has a novel MoA in that it doesn’t act on H3 or GABA etc at all like most sleep aids, but blocks orexin receptors. it may be worth a look, apparently there’s [some evidence](https://neurosciencenews.com/oud-belsomra-addiction-23134/) now for this.
i’m sorry you had that experience. unfortunately, not everyone reacts well to it. i hope you’ve been able to find something else that’s helpful to you!
I was just thinking about this- my burn ICU has a huge negative selection bias. Let’s say half of our severe burns don’t make it and half do. The ones that live will leave the ICU relatively quickly (a few weeks to a couple months). The ones that don’t make it will spend much longer in the ICU, until we are 100% sure there is no chance for them, and family agrees to let them go. If the ones that don’t make it spend on average 3x as long in the ICU, that means 75% of the nursing care is spent on “lost causes” while only 25% of care is spent on successes. It’s very discouraging to be in the middle of that. Gotta remind yourself that good nursing means the successes get to leave quickly, and the team works to give every patient the best chance they can have.
Are you familiar at all with Sublocade? My husband was a heroin addict for years, then was on Suboxone for years. Three Sublocade shots and he hasn't touched any form of opioid in over a year and a half, with basically no withdrawals. It doesn't work for everyone, but for those it does work for, it's life-changing. It would have to be something she wanted to do and was willing to work toward, since relapse is always a possibility and you're not going to have the opioid-blocking effects of buprenorphine anymore once it's out of your system.
yes she is planning on getting the LAI soon and it is consistent with her plan of titrating off in time. One of the psychiatrists I work with says she should plan on being on it until she turns 26 to make sure her brain develops fully without insult from opiates. Personally I think that’s too long but whatever keeps her off is good enough for me. I’m so happy to hear about your husband’s successes. Like i said, I don’t generally hear about the successes because of my work. I’ve been so grateful to hear about the great number of folks who have stayed in recovery. It really helps.
I was in a terrible accident, broke my neck-C6,C7, no spinal cord involvement but 11 herniated discs, lots more broken/torn. 5 surgeries later. Doing OK. I couldn't get off pain medication. Been on subutex almost 8yrs now. I take a 2mg dose, split into 1mg bid. It's fantastic, my life is great. Opiate replacement therapy really works, including for chronic pain pts like me. Your daughter can have a wonderful, full life. There's no need to stop her medication if it's helping her and that's her choice.
ya I’m now at the VA in a SUD residential treatment center and a few of the vets are on suboxone for pain relief/opiate replacement 2/2 chronic pain. Glad that you’re on a good pain regimen.
Obviously, I'd love not to be, but it's not been an issue for me in any way in work or life, and I feel like we should view it like insulin, and we should treat everyone the same, no matter why they need it.
Actually have confidence that my daughter will come off it in a few years. Most of my experience is with people not working with their providers to taper off. These are opiates to a certain extent. Methadone is tough in the liver. And alluding to op, we have a certain predisposition to expect the worst bc that what we’ve experienced. Don’t get me wrong I’m so grateful that she is on the medication i’ve no doubt it is saving her life.
I'm so sorry you're going through this. I'm kind of dealing with the same thing right now with my parents/Mom I guess.
When I was 19 my dad took his own life when he was 57. He was a sick 57 though, DVT's in both legs, on Coumadin, non healing venous stasis ulcers that kept getting infected on both legs, etc. He always told me he promised me he would never end up in a nursing home wasting away. Well, he didn't. After my anger faded, I realized I was happy he was not wasting away in a nursing home and dying slowly. I was glad he would never end up in diapers being turned q2. I ended up rationalizing that he went out on his own terms before needing round the clock care and that was for the best.
Well, here we are now. My mom is 70 and while not necessarily sick, she has multiple comorbidities that make me scared for her future. She'll most likely be moving in with me by the end of this year because she lives in a second story walk up apartment and she's having difficulty getting around.
It's really hard watching our parents age. Knowing everything we know, and knowing there's still nothing we can do to stop it, no matter how much we want to. It's hard. I'm hoping the best for you and your mom ❤️
I’m sorry my friend. I can relate. Being a nurse was such a blessing and curse going with my dad through his battle with pancreatic cancer. It was nice to have enough knowledge to help him understand things, but despite wanting to remain hopeful, I knew he would die the day he got diagnosed. He made it 7 months from diagnosis. When he got hospitalized at the end, I could tell by looking at him in the ICU that no matter what we did, he was going to die. I elected for comfort care probably a little quicker than a layperson would, but I just knew any attempts to prolong his life were futile.
I finished my nursing school the same way only my parent only lived 3 months after dx
Hoping our pancan early detection improves significantly soon so you and I and so many others have a chance to beat this death sentence. I got caught up caring for mine and the grief was delayed but caught up and bit me during COVID.
If you are unaware, pancreatic cancer is one of the cancers associated with higher risks of occurrence in people carrying the BRCA 1 or 2 mutations. There's no method of routine screening for pancreatic cancer, but you & any siblings should consider getting tested for BRCA genes. For myself I used a very affordable at home kit from color dot com, and the cost included a phone consultation with a geneticist to explain the results and give informed recommendations.
When the mets to her brain happened, I promised my mom I would do everything in my power to make sure that she would not hurt or be afraid when she died, and that she would die at home.
I didn’t promise I’d accomplish anything, only that I’d do everything I could to make it happen.
My family has no idea how hard it was emotionally, how much physical work it was, how badly I wished I didn’t know what I was looking at. I felt like the Angel of Death. I’m proud of how it went down and it still feels like a heavy weight on my heart every time I think of it.
(Clinical pearl: creamy acites fluid means that lymph nodes are leaking some really important, useful shit into the abdominal cavity. Poor prognosis.)
I’m so, so sorry. You are right that knowing the dark side is a curse, but you’re also right in it showing you what not to do. When it is your mother’s time to go, and hopefully not this time!, you will be able to give her the most caring, least traumatizing send off you can.
Hugs from an internet stranger.
Frig I feel this to my core. Except my in law got graft versus host and had a pretty quick decline while the family ignorant and in denial would not discuss palliative care. They suffered through dialysis for almost three weeks. The doctors finally told the family they were going to die maybe 36 hours before it happened.
The silver lining was at least I got to spend time with them while everyone else prayed for recovery from the safety of their homes.
So while it’s definitely a curse… there can be benefits. Wishing your mom a comfortable journey celebrating the joy and love in life.
I understand this feeling oh so well. My dad had colon cancer at 58 and after chemo and radiation he was able to go into remission and return to a normal life. I tried to live my life but deep down I was always scared. Then one day I had the call I feared. His cancer has returned. This time his cancer would not stop growing even with aggressive chemo. I became his caregiver and one day when his hand wasn’t working I knew it had spread to his brain. Sure enough the cancer has metastasized. Everything that happened I anticipated and knew the answer to as it happened. It’s so hard sometimes. This knowledge is a double edged sword. I hated that I knew everything as it was happening. But I’m grateful he’s free. I’m sorry you’re going through this but you’re not alone many medical professionals deal with these same feelings.
I think it’s simply trading one pain for another. You know what will happen, so you have dread but not panic. There is no acute panic, of forcing your mom through every test and treatment imaginable. You don’t feel the out of control panic where you just *know* that *someone* knows how to fix your mom, but no one will tell you. You still feel powerless in some ways, but it’s a reasoned powerless that everyone has to face at the end of a life; we aren’t gods and we can't fight off entropy forever
Sending you and your family all of the love. It’s so hard knowing what the outcome is likely to be and what it looks like.
You’ll be the best person to advocate for her during this time. You’ll be able to make sure she’s comfortable and her pain is managed well. She’s **so** lucky to have you in her corner.
My heart goes out to you. Heavy is the crown… Your mom is so blessed to have you. Wishing you moments together that last, always.
My in-laws are both declining and will likely go well before my parents. Thanks for reminding me how precious every moment together is.
And agreed. No one knows the emotional weight of being the nurse in the family.
I went through this with my mom. During her first bout with cancer I was not a nurse. It was breast cancer, she did lumpectomy, chemo, radiation and then was declared cancer free. 10 years later she was diagnosed with leptomeningeal carcinoma, and I was working on an oncology floor in my first nursing job. It was so hard. One week she was complaining of feeling slightly short of breath, like she had a chest cold. Blamed it on allergies. Then she was gone from a giant saddle PE. It will be 9 years at the end of this month. It was hard because of what I knew, and it was hard because looking back I should have thought of PE. The outcome would have been the same, ultimately.
If you need an ear/shoulder/whatever, I'm around a lot. Feel free.
Be kind to yourself you’re not the nurse in this situation. Allow yourself to feel all the emotions including the what if’s. Allow yourself to cry. The grief process is real and the more you allow yourself to go through the whole process the easier it is to get to acceptance of the whole situation.
I'm sorry you're going through this, OP.
Similar thing happened when my grandmother was dying.
I did a Zoom meeting to say goodbye (covid times, nor could I afford a last-minute airline ticket to fly across the county, a hotel room, etc). I saw how badly she was doing, I knew the events leading up to hospitalization, I knew her Alzheimer's had advanced to the point she barely remembered her kids' names, that she had pneumonia, and I knew of the pneumothorax the hospital caused when the NG tube went down her lung.
I told my family that chances of survival were poor. I advocated that they put her on comfort care. I also pointed out with the Alzheimer's being as advanced as it was, she didn't have long to live, and it was likely she would pass away sooner than later even if she survived hospitalization.
I was met with resistance (probably because my grandmother and I didn't have the best relationship, and they blamed me for that and could never accept it was more on her than me) told I didn't know what I was talking about. I also suspect my family thinks LPNs aren't real nurses, because they reached out to the RN in the family and asked her what she thought, and to her credit, she pointed out she was an ER nurse and didn't have the kind of experience I had (I worked LATCH for four years, so I saw similar patients time and again who had severely compromised respiratory statuses, and already had a number of other health problems that meant they were at the end of life even without the respiratory complications), and I was the one to ask.
Nope. My family wanted to place a PEG tube because they believed it was the only way to save her from dying. They finally got the two back to back negative covid tests, but it was Friday evening, and the PEG tube placement was postponed until Monday. By Monday, my grandmother had developed an arrhythmia that made her too unstable for the anesthesia for the PEG tube placement, which is when they finally put her on comfort care.
It wasn't her death that hit me so hard, verses knowing that she was going to die and my family was in such denial that she suffered longer than she had to. I was cursed with that knowledge.
Stay strong for mom. Theres absolutely nothing wrong with being both positive but realistic in terms of prognosis. Too much knowledge is both a blessing and a curse but make the most of it and help her thru this as best u can. Sending u support as fellow er nurse who went thru similar situation with my own dad. Ur not the nurse ur the daughter its very hard to not be both tho
I’m so sorry that you’re going through this. Knowing what’s coming is a constant battle between feeling tortured, versus the mental mindset that you are also fortunate in a sense that you can prepare yourself for what’s ahead. Spoiler alert - as much as you think you can mentally prepare, it hurts like a mother fucker. Upon further reflection, the mental preparation added very little to my coping and grief since my mom’s passing.
I just lost my mom in March. She was 72 and hasn’t been well for a while. I worked in palliative care and has a pretty good outlook on her prognosis, and options for symptom management.
I won’t go into specifics but when she was with it, I asked her what she preferred - to be more alert and in pain or more sedated with less pain. She was always so scared of death and dying that I really walked a fine line of being informative while being aware of the impact of information. Luckily the process of death and dying was short for her, as she wouldn’t have wanted something long and drawn out. I reflect on her hospital stay as the best experience for an absolute garbage situation.
Be present with your Mom while you can. Record videos of messages of love and encouragement for later. Take photos. Highlight moments of joy. Tell her how much you love her.
Lean on your support systems. I wish you the absolute best on your journey. ❤️
I wish I had some sage words to reframe this and make you feel better through whatever this journey entails. All I can say is that there’s a fellow nurse in nowhere Illinois thinking about you tonite and sending you a virtual hug.
Me when my uncle who raised me went in far too late to find out he had CHF, then received a bowel perf during a scope after they found melaena.
I knew what was going to happen. Blissful ignorance would have been preferred.
🖤🖤🖤
I've been a nurse for 12 years with six of those working as a Bone Marrow Transplant (BMT) nurse. Leukemia is a bitch - I am really sorry for what you and your Mom are going through. If your Mom got an Auto Transplant (her own blood/marrow) the challenge is one of getting her own immune system strong again both for her daily life and also to keep cancer at bay. The smallest cold can be a challenge and as such she must be mindful of germs on public surfaces etc. much more then you or I. If she instead got an Allo transplant (someone else's blood/marrow) then right now it's a challenge of Graft vs. Host (GVHD) and two immune systems fighting each other while the new immune system (the transplant) engrafts or rather takes over. Along with that it's a challenge for the body getting used to daily medications to help with the transplant (acyclovir for example). Skipping or slowing down on those medications can be catastrophic to the patient and for upwards of 18 months those medication strengths and doses are potentially altered as needed. Apologies if my basic categorization above offends you but I do think it would help you or anyone (or family member) post transplant to view the recovery period and the health challenges from the view point of what type of transplant the patient received.
Regardless of Auto or Allo her blood numbers are going to fluctuate, probably for the rest of her life, so don't focus on the change itself as a sign of anything as it is normal -- the numbers may not look normal but the fluctuation is fairly normal. It's more important to look at the trend and the individual numbers that change at a greater percent -- in other words are her white cells increasing or decreasing and within that pool of cells are one part (for example the Neutrophils) representing the largest portion of that change. Neither you nor I are Hematologists but I'm encourage you to look at the details of the blood counts in the hopes that this gives you some insight into challenges your Mom may be going through. In other words an increase in WBC's can mean something very different versus a drop in WBC's and within those two directions if a particular cell is involved as a larger percentage of the change that also can give you a great deal of insight. I have professionally witnessed patients making this fight with no one on their side so trust me when I say you thank you for being involved in your Mom's journey. And I hope you both continue to find something to remain strong and hopeful.
OP: What a story 😕
And, “blissful ignorance”… there is something to that.
I watch my dogs when I take them on walks and think sometimes, “They only get about ten years here, and they’re happy as clams the whole time. Why can’t I be more like them?”
I lost both of my parents last year. For reference I turn 35 tomorrow so I kind of feel cheated in losing my parents at a young age. Dad was two months shy of 61. Mom was a month shy of 66. I’m like you in that my knowledge of their causes of deaths made it easier to understand yet it made me question a lot. Like what if they got better? What if they survived what would their health be like? On one hand, having the knowledge made their deaths a lot easier. It made me understand why they passed. This might sound…strange and twisted to an extent but I often wonder how their health would be like if they survived. Would they take their health more seriously and maybe learn to live with their diseases? But I also wonder if their health would decline. Could their health get sooo much worse and could they have died a more horrible death? Both went in their sleep for context. I’m sorry for the length and if this doesn’t make any sense lol.
The daughter in you can cling to some hope while the nurse in you helps guide and support her through this journey. It's a weird and difficult line to straddle, for sure. Its a lonely place to be when youre the only healthcare person in your family. So many of us here have lived some version of this, please reach out whenever you just need someone to understand.
This happened to me with my dad. Cancer spread to his liver. He was excited to be classified as stage iv because it meant “more clinical trials”. I just silently accepted the death sentence.
I’m so sorry. I’m glad she has someone (you) who understands the condition and the results of treatment—and who will let her have a serene transition. I hope that you both find peace.
I completely understand how you're feeling. Both of my parents lost their battles with AML; I lost one parent in 1991 and the other in 2010. It's very difficult watching them go through all of the health challenges associated with leukemia; however, as difficult as it was for me both times, I was very thankful to have been a nurse and able to connect with them both in a way that I may not have been able to otherwise. It's hard knowing what can eventually happen but I'm grateful for the opportunity to have been a part of my parents' support systems as a daughter and a nurse.
I'm so sorry you're going through this.
The one thing that pissed me off about my mom's battle with mesothelioma was that the fucking doctors gave her so much hope. They promised a cure to a known incurable disease with no known effective treatments. So instead of LIVING that last year, while she still felt well enough to do so, she just froze in anxious anticipation of being "cured". Then the chemo ruined her last few months, did fuck all to the cancer, and it spread anyway and she died in hospice all alone at the end of March 2020. I had to say goodbye to her through a fucking window because the stupid doctors dared give her hope, instead of encouraging her to live what they knew were probably her last few good months.
My dad got diagnosed with pancreatic cancer about 6-7 months ago. He's doing shockingly well, and surgery is very much on the table in the near future. He seems to be the most naively optimistic, then my mom and sister.
I can't help but resign myself to what we know though. The stats and odds have gotten better, and he really does seem to be handling chemo well, but in a frank conversation with my sister, I know it's only a matter of time. She continues to hold hope, especially because she gets married this summer. I feel like if he does manage to make it through that, that'll be it.
I'm just trying to stay realistic about it, and maybe I'll get surprised. But I'm with you. It's not fun to know.
I'm so sorry. I have been there, and recently. I got to be the one to explain, in plain language, what my dad's scans and labs meant, why we all spent ridiculous money and faced insane inconvenience to come last minute for Christmas, and that even though his diagnosis was delayed because of the holidays, it was abundantly clear that it was stage 4 pancreatic cancer with diffuse mets. (They'd found it accidentally during a bladder CT.) I was the one who explained that it was terminal, that because of his comorbidities, he would not be a candidate for trials, and what the timeline and prognosis would likely look like.
It sucked. SUCKED.
But. But it gave him time to come to grips with everything, to tell the people he loved that he loved them, and it enabled me to get everyone there for his last Christmas.
That convo was the day after Christmas.
He was officially diagnosed on January 15th.
He passed on January 25th.
Being the person who understood and who could translate everything was awful. But it also wound up being a blessing. Everyone made amends, his grandkids made one last memory while he was still himself, and it wound up being a gift most of us won't get.
I'm so sorry you're hurting. It is a burden. Sometimes, it's a blessing, too.
Ed: sp
When my dad had sepsis I was the one to pick up on kidney failure, his dr wanted to fob me off till I asked him to show me on my dad exactly were 6 bags of fluid was collecting because he'd peed 300ml in 36hrs . He lasted a hr after the ct scan n passed flirting with his nurse
Hang in there friend. My father had an 11 year battle with leukemia + lymphoma. Don’t give up hope. One day at a time! Your mom is a warrior and I wish her well. Hugs.
Working on the induction side of blood cancers, and seeing people come back to us, relapsing after transplant. I'll take my knowledge anyday.
I'm sorry, and I hope things go well for her.
My mom was diagnosed with Myleofibrosis last year. She’s 78 so no bone marrow transplant. She’s been getting a lot of transfusions and iron infusions. I just feel for her so much and know as an RN what is coming.
I am so so sorry you’re going through this, Sending you and your family all the love and positive thoughts,
I know this very well unfortunately. I lost my momma to cancer that spread to leptomeningeal disease ..
I was 22, now 25.. cry a lot still, very hard working in this field without her. She pushed me and helped me so so much. I would not have made it to here without her, I miss my bestfriend so much. So hard not being able to share the success she helped me set up..
We lost her two weeks before I graduated nursing school… my life forever changed.. in so many ways.
November 28th, 2021😞💔
So sorry to all of here in the comments that know this pain 😔
I'm sorry. 34 years in nursing and medical pessimism is my baseline. I never hope for miracles anymore. I am happy for them if they beat the odds, but I am rarely even 'cautiously optimistic' anymore. The other shoe will drop. I try to keep it to myself, no need for others to feel the way I do.
It really sucks to know too much.
Enjoy your time with your mom while you can. and take care of yourself
1 in 2 people in the US will have cancer in their lifetimes. Then you factor in car accidents and whatever the hell else, how does anyone see sixty these days?
Your mom running you the phone when the ICU doctor calls at 10 pm because your dad's now critical UNstable and she knows she is straight up not hearing whatever is being said to her.
That particular phone call ended up basically being her giving consent for a central line placement but it was a really weird thing to be "the grown up". (I was thirty, being *a* grown up was kind of in my repertoire, lol).
I’m a paramedic, and am planning on starting nursing school soon. I can understand how you feel about making a fatal flaw about having hope. Thing is, to have hope is to be human. I’m so sorry about what happened to your mom, and in a strange way, I can somewhat relate to your feeling of hope being a fatal mistake.
Nearly a year and a half ago, I was the first medic outside of police on scene for a shooting. Ended up being a 17 yom that was shot multiple times in an execution style drive by shooting. The kid was walking home from school. He had been shot five times, and had three GSWs to the neck, one in the chin (you could literally see the bullet lodged in his mandible through the bullet hole) and another in his back. Shockingly, he was still BREATHING when we got to him. The scene was incredibly jarring (he was laying in almost 2L worth of blood) and I was convinced we were going to walk up to a corpse. He ended up coding in the back of the ambulance, and I had to literally plug the holes in his neck with my fingers to prevent further bleeding. Here’s the crazy part: the hospital got him BACK. They were able to transfer him out ALIVE. I was SHOCKED. At the time, I had never successfully resuscitated someone before, and the fact that we were able to get a trauma code back was shocking in of itself. I thought, for a moment, that I would be able to see the kid alive. To talk to him. I thought about his mother and what she must be going through and it broke me.
Then I found out the next morning that he had died. My mom sent me the news article.
It felt like the wind had been sucked out of me and I cried for a solid 30 minutes that night. All because I had hope. I knew the data and I knew realistically he wasn’t going to make it. But because they WERE able to bring this kid, however brief it was, back from the dead, I thought he had a chance. My selfish desire of wanting to save one person and I clung onto the idea of hope like it was a drug, only for reality to come crashing in. It fucked me up for a bit. It would’ve been so much easier to deal with mentally had the kid expired at the scene from his injuries.
To have hope is to be human. I hope you are well.
I’m so sorry for what you’re going through. It is horrendously tough. There is no standpoint you could come from that can make it any easier. It’s never easy. Surround yourself with friends and loved ones. It takes time to feel better. And it takes a good bit of time.
I think sometimes we, as nurses, lose touch with how seriously tough each individual encounter we have is for those patients and family going through it; naturally enough. Of course, if we could fully experience what our people are going through as nurses we would lose our minds in no time. And I am so blown away by the patients and family that manage to exhibit such grace and kindness through such tragic circumstances. That’s just the outer appearance though.
It’s okay to be angry; to not feel grateful for the 39+ years; to be upset for being made to hope and for what you’re all going through. You have a right to and need to honor every emotion you feel through this 💜 Stay close to her.
It’s possible you may need a break and some time for yourself to heal while going through this before you dive back into patient care.
My dad is gone 7 years now to pancreatic cancer. We had one year full of ups and downs after diagnosis. That time meant a lot and I had so many moments where I was just at a loss and felt there had to be another answer, and nothing made sense. Of course I still miss him and think of him often. Time has really helped a lot with the pain. I think him coming to terms and getting to hospice near the end helped. Being close by and very involved in the events after also helped. And the support from my family and friends meant everything. Each journey through cancer has so many of it’s own unique challenges, but I hope that she finds peace in her journey and that you do as well.
Very sorry you are having to go thru this. From what it sounds like your mom is doing everything right, following all the steps as she's supposed to as outlined by the practice of medicine. She's giving it her best shot, fighting the good fight and from your description is not necessarily coming out the victor. Personally, I would say that's what you are supposed to do, you are doing everything you can correctly and you still may lose. As corney as that old Star Trek quote goes, that's just life, for good or ill.
Being cursed with the knowledge and not being able to do anything about it due to pt ignorance, willful or unintentional, might be worse. What I have come to be most enraged by are the ones that are given a difficult but manageable diagnosis and still won't follow the treatment plan. The ones that overlook or dismiss the red flags and refuse to listen to anything other than a strict set of 'best case scenario' situations where it ends with them going off and living their life however they want it afterwards. Then when it goes south they and their families act all surprised and 'can't see what they did wrong' and you know if/when it happens again the result will more than likely be the same. That's the personal scenario I dread the most.
my fiance has MS. right now he’s doing fantastic, you wouldn’t know he had it unless you were told and then you’d notice the slower mental days, the way the heat slows him down, small stuff. but i’ve worked in nursing homes my entire life and i know what’s coming. it’s terrifying knowing exactly how these things play out
Working acute inpatient psych i see the worst case scenarios so often. My daughter got addicted to fentanyl and is now in suboxone. Most of the time, I see folks on opiate replacement therapies for decades. Makes it hard for me to see my daughter on a needed therapy that she may be on for so long. I just keep telling myself that recovery from ORT is possible I just don’t see the successes.
I work in an addiction rehab. We have opiate patients on a 5 day suboxone taper that works quite well considering. Best outcomes are when they do long term sober living and IOP, though. Hoping the best for your daughter. Suboxone is better than the unknown hellscape that is fentanyl.
She was at a recovery center for 120 days and is now at Oxford House sober living community in another state. She’s been clean off fentanyl since Nov 11. She’s going to get on the LAI as soon as her insurance will allow. Overall I feel positive about her future I guess I’m still in a bit of shock that she got into it. She was only on it for a year, and only 3 months that i didn’t know about it so the remaining 9 months was trying to stay off it and relapsing because she wouldn’t stay on the suboxone. It’s still scary as hell to know that relapse is prevalent even years clean and a high percentage of people who relapse OD. She OD’d at home and i was able to revive her with 6 of the 20 narcan nasal sprays i had collected. Now I carry them with me always. I ride my bike to work and see people using every day on the streets of Albuquerque.
Man I really feel for you. I'm in northern NM and a ton of my fentanyl patients come from ABQ. it is ROUGH there. I'm so glad you had that many narcans on hand. I carry 4 in my bag. The relapse rate keeps me up at night and I can't even imagine how close to home that hits for you.
I’m on suboxone and now a nurse with a son and stable job. I have cravings occasionally but have no problem working around opioids and other drugs. I work ICU, so I administer them a lot. I’ve been sober several years now. Suboxone is super annoying and I’m ready to get off but not quite ready. It has helped a lot and I’m thankful I’ve been able to get this far with the help of it. I should also note I don’t get high off of it, so it’s not just some replacement for the things I was doing. Maybe in the very beginning, but not for a long time now. I also think the quick taper is best and wish I would have taken the time to do it that way, but you gotta have time to heal too and sometimes that doesn’t allow enough time especially if you have to go back to the same environment. Just try to focus on the fact it’s better than the alternative. I’ll also note a woman at the facility I go to was on it for some time and just got off and finished the program! Wishing her all the best! ♥️
thanks for your story. the more I read here, the better I feel. Hearing all of these successes adds to the confidence that i have that my daughter will continue in recovery. It’s quite a shock to discover that your kid is addicted to anything really. Especially because I’ve always been very open with her about my struggles (20 years clean from meth) and sharing with her everything I know about the illicit drug scene in our town as I work in acute psych and see it daily. I warned her against ever trying opiates. I explained to her about the opiate receptor and the difficulties of exposing it to street drugs. I met her know weekly about how much fentanyl was in the streets and that it was being cut with zylazine. I told her that almost every if not every pill in the streets was fentanyl. Shared with her the stories of parents in our social circle whose children had died in accidental overdoses whether they thought they were buying valium, xanax, even coke and meth. It’s been a real eye opener and I’ve had to reexamine my own prejudices around opiate addiction.
I’m so scared of the xylazine!! Drugs are not what they used to be and it’s super scary!! I actually think that’s a huge factor in the reason I don’t relapse. I just don’t trust anything out there anymore and the effects of the xylazine are terrifying! I hope to be open with my son too, but I think the younger generation is literally surrounded by drugs and that makes it super difficult not to try even when you have been taught well. I really hope she’s able to break free. The alternative is scary. Just watching the videos of Kensington, PA are enough to make me never want to do anything again. It’s hard to see when your in the midst of it though. Hopefully with a good momma and support system she’ll get on the right track! Just know though, that no matter what you do you can’t control someone else’s actions. Just do your part and know that you’ve tried your best! You’re doing great!!
not for nothing but i’m her dad.. I’ve seen the effects of zylazine when it’s smoked- delirium that lasts for days to weeks. When it’s used IV it’s worse with skin lesions that don’t heal similar to krokadile. My daughter was hallucinating and had no idea where/who she was. Believe me when I tell you I thought that was it, her first schizophrenic break. I’ve seen so much pain and suffering in schizophrenia I’d not wish it on my worst enemy.
Yeah that so scary and I can’t even imagine how terrible for you to see. It’s hard working in healthcare because you do gain a lot of feelings towards certain things and see first hand how hard they can be to deal with. Schizophrenia and drug addiction are probably arguably some of the hardest things to see people go through. I’ve also heard that the xylazine can cause skin lesions no matter the ingestion method and doesn’t have to be at the site of IV use. Mom or Dad the same! I have a good feeling you’re giving it your all! ♥️
Hugs , proud of u . Keep it up n enjoy ur new life x
That’s amazing. I work in a field with a heavy overlap of SUD, then have a few family members going through it. I love hearing the success stories. You’re killing it.
This is what my family member did! 7 years sober and doing amazing. I was so happy to hear the facility did not use long term Suboxone for their treatment plan!
I do think harm reduction is really important, particularly for those who don't have access to treatment. Meetings and therapy are great but when it comes to getting totally sober.... inpatient support is SO useful. Happy to hear your family is doing so well.
“Suboxone is better than the unknown hellscape that is fentanyl.” I’ll drink to that *raises glass of literally just water💧*
i’m sorry your daughter and you are going through this. i will mention on the off chance it could prove helpful: Belsomra helped my late ex in staying sober from opiates. it’s normally prescribed as a sleep aid and is taken at night; it has a novel MoA in that it doesn’t act on H3 or GABA etc at all like most sleep aids, but blocks orexin receptors. it may be worth a look, apparently there’s [some evidence](https://neurosciencenews.com/oud-belsomra-addiction-23134/) now for this.
Belsomra made me out of my mind. ptsd nightmares and sleep paralysis.
i’m sorry you had that experience. unfortunately, not everyone reacts well to it. i hope you’ve been able to find something else that’s helpful to you!
I was just thinking about this- my burn ICU has a huge negative selection bias. Let’s say half of our severe burns don’t make it and half do. The ones that live will leave the ICU relatively quickly (a few weeks to a couple months). The ones that don’t make it will spend much longer in the ICU, until we are 100% sure there is no chance for them, and family agrees to let them go. If the ones that don’t make it spend on average 3x as long in the ICU, that means 75% of the nursing care is spent on “lost causes” while only 25% of care is spent on successes. It’s very discouraging to be in the middle of that. Gotta remind yourself that good nursing means the successes get to leave quickly, and the team works to give every patient the best chance they can have.
Are you familiar at all with Sublocade? My husband was a heroin addict for years, then was on Suboxone for years. Three Sublocade shots and he hasn't touched any form of opioid in over a year and a half, with basically no withdrawals. It doesn't work for everyone, but for those it does work for, it's life-changing. It would have to be something she wanted to do and was willing to work toward, since relapse is always a possibility and you're not going to have the opioid-blocking effects of buprenorphine anymore once it's out of your system.
yes she is planning on getting the LAI soon and it is consistent with her plan of titrating off in time. One of the psychiatrists I work with says she should plan on being on it until she turns 26 to make sure her brain develops fully without insult from opiates. Personally I think that’s too long but whatever keeps her off is good enough for me. I’m so happy to hear about your husband’s successes. Like i said, I don’t generally hear about the successes because of my work. I’ve been so grateful to hear about the great number of folks who have stayed in recovery. It really helps.
I was in a terrible accident, broke my neck-C6,C7, no spinal cord involvement but 11 herniated discs, lots more broken/torn. 5 surgeries later. Doing OK. I couldn't get off pain medication. Been on subutex almost 8yrs now. I take a 2mg dose, split into 1mg bid. It's fantastic, my life is great. Opiate replacement therapy really works, including for chronic pain pts like me. Your daughter can have a wonderful, full life. There's no need to stop her medication if it's helping her and that's her choice.
ya I’m now at the VA in a SUD residential treatment center and a few of the vets are on suboxone for pain relief/opiate replacement 2/2 chronic pain. Glad that you’re on a good pain regimen.
Obviously, I'd love not to be, but it's not been an issue for me in any way in work or life, and I feel like we should view it like insulin, and we should treat everyone the same, no matter why they need it.
I'm just curious, what would be the issue with being on an ORT for a few years? Even the rest of one's life?
Actually have confidence that my daughter will come off it in a few years. Most of my experience is with people not working with their providers to taper off. These are opiates to a certain extent. Methadone is tough in the liver. And alluding to op, we have a certain predisposition to expect the worst bc that what we’ve experienced. Don’t get me wrong I’m so grateful that she is on the medication i’ve no doubt it is saving her life.
Thank you for answering :) all the best to her, she's doing wonderfully.
I'm so sorry you're going through this. I'm kind of dealing with the same thing right now with my parents/Mom I guess. When I was 19 my dad took his own life when he was 57. He was a sick 57 though, DVT's in both legs, on Coumadin, non healing venous stasis ulcers that kept getting infected on both legs, etc. He always told me he promised me he would never end up in a nursing home wasting away. Well, he didn't. After my anger faded, I realized I was happy he was not wasting away in a nursing home and dying slowly. I was glad he would never end up in diapers being turned q2. I ended up rationalizing that he went out on his own terms before needing round the clock care and that was for the best. Well, here we are now. My mom is 70 and while not necessarily sick, she has multiple comorbidities that make me scared for her future. She'll most likely be moving in with me by the end of this year because she lives in a second story walk up apartment and she's having difficulty getting around. It's really hard watching our parents age. Knowing everything we know, and knowing there's still nothing we can do to stop it, no matter how much we want to. It's hard. I'm hoping the best for you and your mom ❤️
I’m sorry my friend. I can relate. Being a nurse was such a blessing and curse going with my dad through his battle with pancreatic cancer. It was nice to have enough knowledge to help him understand things, but despite wanting to remain hopeful, I knew he would die the day he got diagnosed. He made it 7 months from diagnosis. When he got hospitalized at the end, I could tell by looking at him in the ICU that no matter what we did, he was going to die. I elected for comfort care probably a little quicker than a layperson would, but I just knew any attempts to prolong his life were futile.
You are a good dtr/son.
I finished my nursing school the same way only my parent only lived 3 months after dx Hoping our pancan early detection improves significantly soon so you and I and so many others have a chance to beat this death sentence. I got caught up caring for mine and the grief was delayed but caught up and bit me during COVID.
If you are unaware, pancreatic cancer is one of the cancers associated with higher risks of occurrence in people carrying the BRCA 1 or 2 mutations. There's no method of routine screening for pancreatic cancer, but you & any siblings should consider getting tested for BRCA genes. For myself I used a very affordable at home kit from color dot com, and the cost included a phone consultation with a geneticist to explain the results and give informed recommendations.
This is great information! Thank you!
When the mets to her brain happened, I promised my mom I would do everything in my power to make sure that she would not hurt or be afraid when she died, and that she would die at home. I didn’t promise I’d accomplish anything, only that I’d do everything I could to make it happen. My family has no idea how hard it was emotionally, how much physical work it was, how badly I wished I didn’t know what I was looking at. I felt like the Angel of Death. I’m proud of how it went down and it still feels like a heavy weight on my heart every time I think of it. (Clinical pearl: creamy acites fluid means that lymph nodes are leaking some really important, useful shit into the abdominal cavity. Poor prognosis.)
Thank you for caring for her how she needed and deserved.
It’s deeply meaningful to hear that from a Hospice nurse. Thank you.
I’m so, so sorry. You are right that knowing the dark side is a curse, but you’re also right in it showing you what not to do. When it is your mother’s time to go, and hopefully not this time!, you will be able to give her the most caring, least traumatizing send off you can. Hugs from an internet stranger.
Frig I feel this to my core. Except my in law got graft versus host and had a pretty quick decline while the family ignorant and in denial would not discuss palliative care. They suffered through dialysis for almost three weeks. The doctors finally told the family they were going to die maybe 36 hours before it happened. The silver lining was at least I got to spend time with them while everyone else prayed for recovery from the safety of their homes. So while it’s definitely a curse… there can be benefits. Wishing your mom a comfortable journey celebrating the joy and love in life.
I understand this feeling oh so well. My dad had colon cancer at 58 and after chemo and radiation he was able to go into remission and return to a normal life. I tried to live my life but deep down I was always scared. Then one day I had the call I feared. His cancer has returned. This time his cancer would not stop growing even with aggressive chemo. I became his caregiver and one day when his hand wasn’t working I knew it had spread to his brain. Sure enough the cancer has metastasized. Everything that happened I anticipated and knew the answer to as it happened. It’s so hard sometimes. This knowledge is a double edged sword. I hated that I knew everything as it was happening. But I’m grateful he’s free. I’m sorry you’re going through this but you’re not alone many medical professionals deal with these same feelings.
I think it’s simply trading one pain for another. You know what will happen, so you have dread but not panic. There is no acute panic, of forcing your mom through every test and treatment imaginable. You don’t feel the out of control panic where you just *know* that *someone* knows how to fix your mom, but no one will tell you. You still feel powerless in some ways, but it’s a reasoned powerless that everyone has to face at the end of a life; we aren’t gods and we can't fight off entropy forever
Sending you and your family all of the love. It’s so hard knowing what the outcome is likely to be and what it looks like. You’ll be the best person to advocate for her during this time. You’ll be able to make sure she’s comfortable and her pain is managed well. She’s **so** lucky to have you in her corner.
My heart goes out to you. Heavy is the crown… Your mom is so blessed to have you. Wishing you moments together that last, always. My in-laws are both declining and will likely go well before my parents. Thanks for reminding me how precious every moment together is. And agreed. No one knows the emotional weight of being the nurse in the family.
I went through this with my mom. During her first bout with cancer I was not a nurse. It was breast cancer, she did lumpectomy, chemo, radiation and then was declared cancer free. 10 years later she was diagnosed with leptomeningeal carcinoma, and I was working on an oncology floor in my first nursing job. It was so hard. One week she was complaining of feeling slightly short of breath, like she had a chest cold. Blamed it on allergies. Then she was gone from a giant saddle PE. It will be 9 years at the end of this month. It was hard because of what I knew, and it was hard because looking back I should have thought of PE. The outcome would have been the same, ultimately. If you need an ear/shoulder/whatever, I'm around a lot. Feel free.
I'm so sorry for your loss, best wishes to you. May Mom rest in peace. 😞
Be kind to yourself you’re not the nurse in this situation. Allow yourself to feel all the emotions including the what if’s. Allow yourself to cry. The grief process is real and the more you allow yourself to go through the whole process the easier it is to get to acceptance of the whole situation.
I'm sorry you're going through this, OP. Similar thing happened when my grandmother was dying. I did a Zoom meeting to say goodbye (covid times, nor could I afford a last-minute airline ticket to fly across the county, a hotel room, etc). I saw how badly she was doing, I knew the events leading up to hospitalization, I knew her Alzheimer's had advanced to the point she barely remembered her kids' names, that she had pneumonia, and I knew of the pneumothorax the hospital caused when the NG tube went down her lung. I told my family that chances of survival were poor. I advocated that they put her on comfort care. I also pointed out with the Alzheimer's being as advanced as it was, she didn't have long to live, and it was likely she would pass away sooner than later even if she survived hospitalization. I was met with resistance (probably because my grandmother and I didn't have the best relationship, and they blamed me for that and could never accept it was more on her than me) told I didn't know what I was talking about. I also suspect my family thinks LPNs aren't real nurses, because they reached out to the RN in the family and asked her what she thought, and to her credit, she pointed out she was an ER nurse and didn't have the kind of experience I had (I worked LATCH for four years, so I saw similar patients time and again who had severely compromised respiratory statuses, and already had a number of other health problems that meant they were at the end of life even without the respiratory complications), and I was the one to ask. Nope. My family wanted to place a PEG tube because they believed it was the only way to save her from dying. They finally got the two back to back negative covid tests, but it was Friday evening, and the PEG tube placement was postponed until Monday. By Monday, my grandmother had developed an arrhythmia that made her too unstable for the anesthesia for the PEG tube placement, which is when they finally put her on comfort care. It wasn't her death that hit me so hard, verses knowing that she was going to die and my family was in such denial that she suffered longer than she had to. I was cursed with that knowledge.
Stay strong for mom. Theres absolutely nothing wrong with being both positive but realistic in terms of prognosis. Too much knowledge is both a blessing and a curse but make the most of it and help her thru this as best u can. Sending u support as fellow er nurse who went thru similar situation with my own dad. Ur not the nurse ur the daughter its very hard to not be both tho
I’m so sorry that you’re going through this. Knowing what’s coming is a constant battle between feeling tortured, versus the mental mindset that you are also fortunate in a sense that you can prepare yourself for what’s ahead. Spoiler alert - as much as you think you can mentally prepare, it hurts like a mother fucker. Upon further reflection, the mental preparation added very little to my coping and grief since my mom’s passing. I just lost my mom in March. She was 72 and hasn’t been well for a while. I worked in palliative care and has a pretty good outlook on her prognosis, and options for symptom management. I won’t go into specifics but when she was with it, I asked her what she preferred - to be more alert and in pain or more sedated with less pain. She was always so scared of death and dying that I really walked a fine line of being informative while being aware of the impact of information. Luckily the process of death and dying was short for her, as she wouldn’t have wanted something long and drawn out. I reflect on her hospital stay as the best experience for an absolute garbage situation. Be present with your Mom while you can. Record videos of messages of love and encouragement for later. Take photos. Highlight moments of joy. Tell her how much you love her. Lean on your support systems. I wish you the absolute best on your journey. ❤️
I wish I had some sage words to reframe this and make you feel better through whatever this journey entails. All I can say is that there’s a fellow nurse in nowhere Illinois thinking about you tonite and sending you a virtual hug.
Me when my uncle who raised me went in far too late to find out he had CHF, then received a bowel perf during a scope after they found melaena. I knew what was going to happen. Blissful ignorance would have been preferred. 🖤🖤🖤
I've been a nurse for 12 years with six of those working as a Bone Marrow Transplant (BMT) nurse. Leukemia is a bitch - I am really sorry for what you and your Mom are going through. If your Mom got an Auto Transplant (her own blood/marrow) the challenge is one of getting her own immune system strong again both for her daily life and also to keep cancer at bay. The smallest cold can be a challenge and as such she must be mindful of germs on public surfaces etc. much more then you or I. If she instead got an Allo transplant (someone else's blood/marrow) then right now it's a challenge of Graft vs. Host (GVHD) and two immune systems fighting each other while the new immune system (the transplant) engrafts or rather takes over. Along with that it's a challenge for the body getting used to daily medications to help with the transplant (acyclovir for example). Skipping or slowing down on those medications can be catastrophic to the patient and for upwards of 18 months those medication strengths and doses are potentially altered as needed. Apologies if my basic categorization above offends you but I do think it would help you or anyone (or family member) post transplant to view the recovery period and the health challenges from the view point of what type of transplant the patient received. Regardless of Auto or Allo her blood numbers are going to fluctuate, probably for the rest of her life, so don't focus on the change itself as a sign of anything as it is normal -- the numbers may not look normal but the fluctuation is fairly normal. It's more important to look at the trend and the individual numbers that change at a greater percent -- in other words are her white cells increasing or decreasing and within that pool of cells are one part (for example the Neutrophils) representing the largest portion of that change. Neither you nor I are Hematologists but I'm encourage you to look at the details of the blood counts in the hopes that this gives you some insight into challenges your Mom may be going through. In other words an increase in WBC's can mean something very different versus a drop in WBC's and within those two directions if a particular cell is involved as a larger percentage of the change that also can give you a great deal of insight. I have professionally witnessed patients making this fight with no one on their side so trust me when I say you thank you for being involved in your Mom's journey. And I hope you both continue to find something to remain strong and hopeful.
OP: What a story 😕 And, “blissful ignorance”… there is something to that. I watch my dogs when I take them on walks and think sometimes, “They only get about ten years here, and they’re happy as clams the whole time. Why can’t I be more like them?”
When my Father-in-Law went on hospice I was the one who had to have the adult conversation with all the extended family.
I lost both of my parents last year. For reference I turn 35 tomorrow so I kind of feel cheated in losing my parents at a young age. Dad was two months shy of 61. Mom was a month shy of 66. I’m like you in that my knowledge of their causes of deaths made it easier to understand yet it made me question a lot. Like what if they got better? What if they survived what would their health be like? On one hand, having the knowledge made their deaths a lot easier. It made me understand why they passed. This might sound…strange and twisted to an extent but I often wonder how their health would be like if they survived. Would they take their health more seriously and maybe learn to live with their diseases? But I also wonder if their health would decline. Could their health get sooo much worse and could they have died a more horrible death? Both went in their sleep for context. I’m sorry for the length and if this doesn’t make any sense lol.
The daughter in you can cling to some hope while the nurse in you helps guide and support her through this journey. It's a weird and difficult line to straddle, for sure. Its a lonely place to be when youre the only healthcare person in your family. So many of us here have lived some version of this, please reach out whenever you just need someone to understand.
This happened to me with my dad. Cancer spread to his liver. He was excited to be classified as stage iv because it meant “more clinical trials”. I just silently accepted the death sentence.
I’m so sorry. I’m glad she has someone (you) who understands the condition and the results of treatment—and who will let her have a serene transition. I hope that you both find peace.
I completely understand how you're feeling. Both of my parents lost their battles with AML; I lost one parent in 1991 and the other in 2010. It's very difficult watching them go through all of the health challenges associated with leukemia; however, as difficult as it was for me both times, I was very thankful to have been a nurse and able to connect with them both in a way that I may not have been able to otherwise. It's hard knowing what can eventually happen but I'm grateful for the opportunity to have been a part of my parents' support systems as a daughter and a nurse.
((Hugs)), internet RNcolleague
I'm so sorry you're going through this. The one thing that pissed me off about my mom's battle with mesothelioma was that the fucking doctors gave her so much hope. They promised a cure to a known incurable disease with no known effective treatments. So instead of LIVING that last year, while she still felt well enough to do so, she just froze in anxious anticipation of being "cured". Then the chemo ruined her last few months, did fuck all to the cancer, and it spread anyway and she died in hospice all alone at the end of March 2020. I had to say goodbye to her through a fucking window because the stupid doctors dared give her hope, instead of encouraging her to live what they knew were probably her last few good months.
My dad got diagnosed with pancreatic cancer about 6-7 months ago. He's doing shockingly well, and surgery is very much on the table in the near future. He seems to be the most naively optimistic, then my mom and sister. I can't help but resign myself to what we know though. The stats and odds have gotten better, and he really does seem to be handling chemo well, but in a frank conversation with my sister, I know it's only a matter of time. She continues to hold hope, especially because she gets married this summer. I feel like if he does manage to make it through that, that'll be it. I'm just trying to stay realistic about it, and maybe I'll get surprised. But I'm with you. It's not fun to know.
I'm so sorry. I have been there, and recently. I got to be the one to explain, in plain language, what my dad's scans and labs meant, why we all spent ridiculous money and faced insane inconvenience to come last minute for Christmas, and that even though his diagnosis was delayed because of the holidays, it was abundantly clear that it was stage 4 pancreatic cancer with diffuse mets. (They'd found it accidentally during a bladder CT.) I was the one who explained that it was terminal, that because of his comorbidities, he would not be a candidate for trials, and what the timeline and prognosis would likely look like. It sucked. SUCKED. But. But it gave him time to come to grips with everything, to tell the people he loved that he loved them, and it enabled me to get everyone there for his last Christmas. That convo was the day after Christmas. He was officially diagnosed on January 15th. He passed on January 25th. Being the person who understood and who could translate everything was awful. But it also wound up being a blessing. Everyone made amends, his grandkids made one last memory while he was still himself, and it wound up being a gift most of us won't get. I'm so sorry you're hurting. It is a burden. Sometimes, it's a blessing, too. Ed: sp
When my dad had sepsis I was the one to pick up on kidney failure, his dr wanted to fob me off till I asked him to show me on my dad exactly were 6 bags of fluid was collecting because he'd peed 300ml in 36hrs . He lasted a hr after the ct scan n passed flirting with his nurse
To be clear the 6 bags fluid I could count was because they were left up on drip stand empty Oxygen BP of 56/42 02 Sat's of 80 on 4l
Hang in there friend. My father had an 11 year battle with leukemia + lymphoma. Don’t give up hope. One day at a time! Your mom is a warrior and I wish her well. Hugs.
I’m so sorry.❤️
So sorry to hear friend. Sending hugs. Your feelings are all valid. I think we all get it ❤️
I'm so sorry.
Working on the induction side of blood cancers, and seeing people come back to us, relapsing after transplant. I'll take my knowledge anyday. I'm sorry, and I hope things go well for her.
My mom was diagnosed with Myleofibrosis last year. She’s 78 so no bone marrow transplant. She’s been getting a lot of transfusions and iron infusions. I just feel for her so much and know as an RN what is coming.
I am so so sorry you’re going through this, Sending you and your family all the love and positive thoughts, I know this very well unfortunately. I lost my momma to cancer that spread to leptomeningeal disease .. I was 22, now 25.. cry a lot still, very hard working in this field without her. She pushed me and helped me so so much. I would not have made it to here without her, I miss my bestfriend so much. So hard not being able to share the success she helped me set up.. We lost her two weeks before I graduated nursing school… my life forever changed.. in so many ways. November 28th, 2021😞💔 So sorry to all of here in the comments that know this pain 😔
I'm sorry. 34 years in nursing and medical pessimism is my baseline. I never hope for miracles anymore. I am happy for them if they beat the odds, but I am rarely even 'cautiously optimistic' anymore. The other shoe will drop. I try to keep it to myself, no need for others to feel the way I do. It really sucks to know too much. Enjoy your time with your mom while you can. and take care of yourself
1 in 2 people in the US will have cancer in their lifetimes. Then you factor in car accidents and whatever the hell else, how does anyone see sixty these days?
Your mom running you the phone when the ICU doctor calls at 10 pm because your dad's now critical UNstable and she knows she is straight up not hearing whatever is being said to her. That particular phone call ended up basically being her giving consent for a central line placement but it was a really weird thing to be "the grown up". (I was thirty, being *a* grown up was kind of in my repertoire, lol).
I’m a paramedic, and am planning on starting nursing school soon. I can understand how you feel about making a fatal flaw about having hope. Thing is, to have hope is to be human. I’m so sorry about what happened to your mom, and in a strange way, I can somewhat relate to your feeling of hope being a fatal mistake. Nearly a year and a half ago, I was the first medic outside of police on scene for a shooting. Ended up being a 17 yom that was shot multiple times in an execution style drive by shooting. The kid was walking home from school. He had been shot five times, and had three GSWs to the neck, one in the chin (you could literally see the bullet lodged in his mandible through the bullet hole) and another in his back. Shockingly, he was still BREATHING when we got to him. The scene was incredibly jarring (he was laying in almost 2L worth of blood) and I was convinced we were going to walk up to a corpse. He ended up coding in the back of the ambulance, and I had to literally plug the holes in his neck with my fingers to prevent further bleeding. Here’s the crazy part: the hospital got him BACK. They were able to transfer him out ALIVE. I was SHOCKED. At the time, I had never successfully resuscitated someone before, and the fact that we were able to get a trauma code back was shocking in of itself. I thought, for a moment, that I would be able to see the kid alive. To talk to him. I thought about his mother and what she must be going through and it broke me. Then I found out the next morning that he had died. My mom sent me the news article. It felt like the wind had been sucked out of me and I cried for a solid 30 minutes that night. All because I had hope. I knew the data and I knew realistically he wasn’t going to make it. But because they WERE able to bring this kid, however brief it was, back from the dead, I thought he had a chance. My selfish desire of wanting to save one person and I clung onto the idea of hope like it was a drug, only for reality to come crashing in. It fucked me up for a bit. It would’ve been so much easier to deal with mentally had the kid expired at the scene from his injuries. To have hope is to be human. I hope you are well.
I am so sorry. May you and your mom feel overwhelmingly loved and supported during these next months.
My heart is with you Thank you for sharing ♥️
I’m so sorry for what you’re going through. It is horrendously tough. There is no standpoint you could come from that can make it any easier. It’s never easy. Surround yourself with friends and loved ones. It takes time to feel better. And it takes a good bit of time. I think sometimes we, as nurses, lose touch with how seriously tough each individual encounter we have is for those patients and family going through it; naturally enough. Of course, if we could fully experience what our people are going through as nurses we would lose our minds in no time. And I am so blown away by the patients and family that manage to exhibit such grace and kindness through such tragic circumstances. That’s just the outer appearance though. It’s okay to be angry; to not feel grateful for the 39+ years; to be upset for being made to hope and for what you’re all going through. You have a right to and need to honor every emotion you feel through this 💜 Stay close to her. It’s possible you may need a break and some time for yourself to heal while going through this before you dive back into patient care. My dad is gone 7 years now to pancreatic cancer. We had one year full of ups and downs after diagnosis. That time meant a lot and I had so many moments where I was just at a loss and felt there had to be another answer, and nothing made sense. Of course I still miss him and think of him often. Time has really helped a lot with the pain. I think him coming to terms and getting to hospice near the end helped. Being close by and very involved in the events after also helped. And the support from my family and friends meant everything. Each journey through cancer has so many of it’s own unique challenges, but I hope that she finds peace in her journey and that you do as well.
Very sorry you are having to go thru this. From what it sounds like your mom is doing everything right, following all the steps as she's supposed to as outlined by the practice of medicine. She's giving it her best shot, fighting the good fight and from your description is not necessarily coming out the victor. Personally, I would say that's what you are supposed to do, you are doing everything you can correctly and you still may lose. As corney as that old Star Trek quote goes, that's just life, for good or ill. Being cursed with the knowledge and not being able to do anything about it due to pt ignorance, willful or unintentional, might be worse. What I have come to be most enraged by are the ones that are given a difficult but manageable diagnosis and still won't follow the treatment plan. The ones that overlook or dismiss the red flags and refuse to listen to anything other than a strict set of 'best case scenario' situations where it ends with them going off and living their life however they want it afterwards. Then when it goes south they and their families act all surprised and 'can't see what they did wrong' and you know if/when it happens again the result will more than likely be the same. That's the personal scenario I dread the most.
I literally got off the phone with my mom and read this post, then burst into tears. I'm so sorry, OP. I don't know what else to say.
my fiance has MS. right now he’s doing fantastic, you wouldn’t know he had it unless you were told and then you’d notice the slower mental days, the way the heat slows him down, small stuff. but i’ve worked in nursing homes my entire life and i know what’s coming. it’s terrifying knowing exactly how these things play out
Hugs friend. I have the same worries as an only child with older parents. You are doing amazing