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95 year old Dad went into the hospital As pain from what has been discovered to be a compression fracture at the base of his spine, became unbearable at night and he was not sleeping at all. One thing led to another and he was there for over a week, and his back is still no better than when he went in (long story). He has become weak and unstable (and already had drop foot in both feet) and needs attendance/support every time he wants/needs to ambulate anywhere. Poor man is still fiercely independent and quickly became very frustrated in the hospital with not having autonomy of movement, and he really doesn’t see the need for constant support. . He also developed hospital delirium again, and is still experiencing it in the rehab/SNF facility he was just moved to. In fact, while it was intermittent in the hospital, it is constant in the rehab. He doesn’t display it as much to the CNA, etc. But as soon as someone leaves, out comes the heartbreaking and extreme world he sees right now . (The police and airport security guys came in last night because bad guys were flirting with the nurses at their station, the nurses really being prostitutes who were being pimped out and one even propositioned him, etc etc etc. ) He won’t stay in his bed or a chair and can’t be walking around unattended. He took off in a none motorized wheelchair in the night, in search of an exit. They had to park him at the nurses station and he did not sleep at all all night.
My hope with him going to the facility was for him to become more stable physically so home life would be safer and viable. But with them deciding to NOT do anything with his fracture (it should heal on its own), this may not be reasonable. But, it isn’t sustainable for just me to attend his every move—especially when he is up and down sometimes every thirty minutes at night. Plus, I have a medical issue with my spine and it isn’t safe for either one of us for me to lend him much physical support. Home help isn’t available due to his history of infectious disease (which isn’t active at this time but after a week of iv antibiotics may become so, hopefully not!). If I bring him home to see how it goes, and it doesn’t work, I’ll never get him back to a SNF (without three days in hospital it is impossible around here—plus I’m sure he would not cooperate by then ).
Is it reasonable for me to be hopeful that his mind will clear once he settles in at the SNF? Coupled with his physical challenges, I am even more concerned about home life and our one month rehab/SNF deadline. He was already showing signs of some cognitive decline intermittently at home before the injury. So I do not know if all this current extreme behavior (paranoia, anger, confusion, outrage, frustration, sometimes grunting and motioning instead of using words, saying mean things, etc etc etc) is the person that will continue, or if he will get back to baseline.
I am worried that if I get him home and his mind doesn’t clear considerably, and his physical issues remain exasperated by his slow mending injury, that there is no way I will be able to care for him 24/7 alone. But to have him remain in the SNF is a hard decision—especially since he seems so frightened right now. I have been staying with him and tending to him from early in day until late evening. This isn’t sustainable (I have a wonderful, newly retired husband at home), but they can’t lay eyes on him 24/7 at the SNF without parking him at the station. Meds, the hospital doc warned, might exasperate the cognition issues. Please share your wisdom… I know many of you guys have seen it all…

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Hope, a little tough love. As we know from your previous posts, your father has held you captive to his complex medical needs in your home for YEARS, and you have very conscientiously obliged.

Your husband, in anticipation of his retirement, asked you many months ago to move your dad out and into long-term care. You’ve put it off out of your sense of duty to your dad. The time has finally arrived. You need to give up the idea of bringing him home. It isn’t at all possible for you to meet his needs. And it would be indescribably unfair to your husband, who wants his home to be his and who deserves to be more of a priority for your time now that he has retired. Consider it a compliment that he wants more time with you!

So just begin stepping back and learn to cede control. Stop spending all day at the facility. Force yourself to relax and enjoy some time with your husband after all the years of hyper vigilant focus on your dad. Let the medical professionals do their jobs. Ask them to bring in a specialist to treat the delirium. But just let go of all the micromanaging because that is no longer your role or responsibility. Start a fresh chapter with your husband. Start enjoying your life. We never know how much time we have left.
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Reply to MG8522
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He needs medicated for his agitation. Do not bring him home. Yes, you probably can get a sitter and stop visiting as often. You need a vacation very badly.
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Reply to JustAnon
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My opinion, leave him where he is. He needs more care now then you can probably do. Trying to help him is only going to make your back worse. Your husband, he deserves you to be there for him. He should be your #1 concern. You never know what tomorrow will bring, you and your husband need to enjoy life now. Go places do things. Dad has lived his life, now let the professionals take over his care. You become his daughter (instead of caregiver) and advocate.
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Reply to JoAnn29
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I’m glad he’s at a good SNF.

Between all his health problems and hospital delirium, it really sounds extremely stressful for you. I hope you can find a way to trust the SNF professionals and take some time for yourself to rest a bit, have a decent meal, maybe take a walk or watch a movie.

I would say don’t worry about next week or next month right now. I’m assuming you are around 65-70 yourself. It’s ok to take breaks from being by his side. I agree that pain and agitation management are the things the SNF should focus on.
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Reply to Suzy23
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Hope21 9 hours ago
Thank you. Yes, it is very stressful. He has always said that he just never wants to be in pain. So I need to honor that in all decisions. I just don’t want to mess up any opportunity for him to NOT have the awful delirium or whatever it is, by medicating. But I don’t want him to continue living in a world of anxiety either. I will ask to talk to doctor.

And yes, I need to relax a bit. I am extremely diligent about his care and it’s hard to trust him to others. But he is in a good place where they really do seem to care and are warm and patient. He is such a fall risk and will just get up and try any way possible to go do whatever is on his mind (a big reason I didn’t bring him straight home). That is a big part of why I have stayed so long with him during the day. If medication doesn’t help that, we might have to hire sitters? It’s just if they don’t want to come into our home because of his infectious disease history, I wonder if coming into here would be any different (perhaps so, since it’s a professional environment)? This is a really good place and he went out of pocket to pay for a month (but I told them we were playing it by ear for long term, depending on how things develop). His advantage plan denied rehab/SNF , as I guess they often do. I just don’t want them to feel like he is too much for them since so far someone has to watch him so closely 24/7, and deny him a long term placement…..(at the hospital they had alarms on his bed and chair).
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I’m so sorry. This sounds so hard right now. I’m afraid that compression fractures can’t really heal normally. The vertebrae is now compressed or shorter so his spinal cord is being irritated and/or squeezed so pain and nerve impingement will continue unless there is surgery to open the vertebrae back up. I also don’t recommend this at his age bc it could backfire in so many ways. Right now you need to concentrate on pain management. Don’t skimp - work with a pain specialist to find the right mix. My MIL ended up on a fentanyl patch and was very happy with it for years, but she never regained the mobility that was lost. Try to stop thinking about getting back to baseline which is now physically impossible and concentrate on his physical comfort and anxiety control.
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Reply to ShirleyDot
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Hope21 11 hours ago
Thank you for your kind response. Dad was over a week in the hospital being treated for chronic UTI that ID doc had planned to stop treating unless extreme symptoms developed as he is considered colonized. But they planned to do kyphoplasty and wanted to eliminate possibility of infection. Then the surgeon had observed his daily improvement of reported pain without pain meds, and gave us the option of not doing surgery and healing naturally, citing the dangers of the surgery for someone his age. But whether it is the kind of bed or what, observing him trying to sleep in bed at the SNF was like he was before the hospital in terms of pain. (But he slept well in hospital.) He reports little to no pain when sitting upright, walking, etc. They were giving him a lot of muscle relaxers in hospital, but the doc didn’t think that would have affected the pain that much but could be another source of the cognitive issues, so she discontinued them (I thought she was just going to reduce the daily dosage, but at discharge she eliminated them). I need to talk to the SNF doc, and maybe his regular PCP as well…
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My mother had a long history of psychiatric issues, including personality disorder, addiction problems, depression, and anxiety. After a 10 year mutual estrangement , she showed back up at my door, needing all kinds of help. Her very first episode of hospital delirium was at age 64 after a knee replacement. From then, on every time she was in the hospital, she would get delirium. During my reacquaintance with her when she was 74 and 75 years old, she had a major surgery on her neck and again a nasty episode of delirium. And then again at 77 when she had a spinal infection and acute kidney injury from the IV antibiotics and Lasix. She ended up in SNF rehab to receive the antibiotics because she had a hoarded house and we could not deal with a PICC line there, and she certainly was not coming to my house. But that episode of delirium was the worst and the longest I had seen. Some behavior that was so bad that the hospital had to call security on her. So then she transferred to rehab and after an episode of aggression, they called the ambulance which took her to a different hospital. They ended up diagnosing her with dementia. They said that basically the hospital stay had uncovered, pre-existing dementia. I did some reading, and it says that repeated episodes of hospital delirium are usually the sign of an underlying dementia. It is the brains vulnerability being exposed. So my mother, at 77, ended up being on the mend from her spinal infection and her acute kidney injury, but in the end, died of very rapidly progressing end stage dementia. This all took about six weeks.

We went through the times where the final nursing home where she ended up could not handle her. She kept trying to get up and had several falls. I sat many hours at her bedside trying to be her private sitter because otherwise they were trying to get her out. I think you might want to call Hospice for an evaluation on your father. Or at minimum maybe a neurologist to do the cognitive testing. This was actually the rehab places plan for my mother was to test her after her medical issues improved a bit. But she rapidly declined into very obviously end stage dementia. But like others have said, I don’t think it’s realistic for you to be his sole caregiver anymore. There are also a variety of other meds that could be given to calm your father, both by the nursing home or Hospice. I will say that Hospice has a lot more leeway with what they can try. And I know people have a lot of different feelings about medication’s and Hospice, but in my mother‘s case, she was dangerously agitated without them.
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Reply to Oedgar23
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Hope21 17 hours ago
Thank you for relating your painful experience. I know it is wisdom hard earned and I appreciate your help. I will be following your advice.
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Your father is NOT ‘independent’, even if he is ‘fierce’. He is ‘weak and unstable’, he ‘needs attendance/support every time he wants or needs to walk’. He has frightening delusions when he is alone, plus ‘paranoia, anger, confusion, outrage, frustration’. And he has a ‘painful compression fracture at the base of his spine’ which required hospitalisation and will heal slowly if at all. He is aged 95. It is NOT “reasonable for me to be hopeful” that he will get better. And you say that unless he does “there is no way I will be able to care for him 24/7 alone”.

Your father is very old. He needs appropriate medications and sedation for the pain and for the mental confusion, with round-the-clock medical care. You ‘staying with him and tending to him from early in day until late evening’ is NOT helping your life or what is left of his life.

Please reconsider what you can do in this difficult situation.
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Reply to MargaretMcKen
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Hope21 19 hours ago
Thank you for your candor. To be clear, I didn’t mean to imply that he is independent in the sense that you interpreted. Of course he is not truly independent (and that’s why he has lived with us for five and a half years). But until the last few months, he was able to perform all ADLs independently with some small tweaks and had the independence of ambulating around the house and porch and fixing his own Keurig coffee, etc. I’d say pretty good for 95! Of course, I have always watched and listened closely to lend help or support in any way needed.

Also, I am not saying that unless he completely recovers I cannot take care of him. I am saying I am concerned about the degree of confusion/delirium I am now seeing and the degree of physical support he may continue to require, and if any one person could reasonably be up to it ( he is my dad. He is 95. I guess I’m guilting myself about not seeing to his care 100% personally to the end. Just typing that I realize that is emotion and not reason, which will not be the best for dad). You gave your straight opinion about that and thank you. I guess I should have asked if anyone had ever seen someone make significant strides out of this level and length of delirium, and if there are meds to help and not hinder that (hospital doc stopped Xanax they gave him a couple of times saying it could worsen or could have been contributing to the cognition issues).And, if there is a way to tell if this is all temporary facility delirium, or some type of dementia becoming more visible under this stress…

And I know I cannot continue to stay with him for ten to twelve hours a day. He just arrived at the SNF and I wanted to take him around and chat with the people who were up and out and show him it is a nice safe and welcoming place. And make him feel more safe and secure. I will talk with the doc about meds to help.
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My dad, in different medical circumstances, had many rounds of hospitalization followed by rehab in SHF. Each hospitalization, really each day in bed, caused a decline that even after rehab, resulted in a new, lower level of function. The hospital delirium was intense, it did go away though. It’s concerning your dad’s hasn’t calmed by now. I’d definitely want him on medication to calm his anxiety, it’s as scary for him as it is for you to watch. He deserves not to feel so frightened and be calm. Given your dad’s advanced age, the likelihood of not completely healing, the growing cognitive issues, and the lack of getting back to his normal, it seems unlikely and unwise to plan on you alone as his caregiver again. No failure on your part, just the sad new reality. You cannot keep being present so many hours, it’s bad for both you and dad. If you’re displeased with the care where he is, start researching where else he can live. Become his advocate instead of his hands on caregiver. I’m sorry you’re both in this new place and wish you peace
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Reply to Daughterof1930
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Hope21 19 hours ago
Thank you for responding. I always look for your answers to people’s questions! The SNF he is at has been wonderful so far. He was just transferred there late yesterday. PT evaluated him today—Saturday the fourth! I thought that was exceptional. I will ask to talk with their doc about meds to help. In the hospital they gave him Xanax a couple of times, but the hospitalist advised not continuing that as she, having been familiar with him through many hospitalizations the last year and a half, felt it was contributing to these recent cognition issues. But you are right, he should not suffer from anxiety if it can be helped in any way.
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