My dad wants to get out of rehab and go home. But he has no home at this point as he can no longer live where he lived before. I tried to explain to him that he had two choices: a hospital rehab where he is able to get physical therapy like where is is now, or if he is done trying to get better he goes to hospice which is just like this but no chance of getting better. He will just lay in bed watching tv and wait to die.
I know that was too harsh but he shut up and stopped yelling at me.
I said that the only way there is a third choice was if he worked hard at rehab and got better then he could go live at a nicer facility. But he can barely eat due to swallowing, can’t get out of bed, can’t go to the toilet or dress himself so it’s all up to him to get better or give up.
Of course this is my fault somehow. Seriously I’m tempted to just give up and send him to a place he can be on hospice.
I'm beginning to think that the hospice choice is more about when YOU as caregiver can’t deal anymore as it is making an informed choice that your LO just is not going to get better.
Anyway. He has dementia but not Alzheimer’s and not always very bad. Do you try to explain or just never tell them?
Your father can't get out of bed. He can barely eat. He cannot go to the toilet or get himself dressed. He is also technically homeless.
His choices are work very hard at PT, OT, and at whatever the care staff thinks will help him get stronger. Then maybe he can go live in a better quality facility?
That's just not good enough incentive for him to work at getting better. It wouldn't be enough for me either.
The same thing happened to my father. He had a very active life until he was 90 years old. Still lived independently, drove, played golf and bowled several times a week, and was physically and mentally the age of a 60 year old man in optimal health. Until he had a stroke. He died eight months later. The PT, OT, and speech therapy stopped after six weeks because insurance wasn't covering it anymore. When that happened he gave up because he knew he was never going home again and willed himself dead.
Your father probably wants to go now too. If they recommend hospice for him then take it. You don't have to tell him what it is though.
I will take your advice about not explaining to him when he is determined to go to hospice. Or to tell him he's dying when he is, in fact, dying. But now, because he's doing so much better the doctors are no longer talking about hospice anyway. They are talking nursing home with rehab, but I just found out that the nursing home isn't allowed to have bedrails. The reason dad is in here at all is from rolling out of bed! So now I have a new battle, this time with administration to keep him where he is safe to get more rehab. We'll see how that goes.
I truly believe he wants to try or I wouldn't be doing it. I truly believes he would want to pay out of pocket for PT (he did before to the tune of 4 days/week). I truly believe he can still have some quality of life. However I also know that it's very possible... even likely... that he will live only another year at most. But, if he would rather be trying to "get better", then he needs rehab to "get better"....even though "better" is not as good as before.
Out of all my sibs, I was the one thinking hospice but I KNEW he wouldn't want that so we did the surgery. And he popped out of that just fine, even remembering recent events... and still continent. The issue has become that he laid in bed until he was so weak that he couldn't get out anymore... and also that they took him off the meds that he has been on for 3 years. As soon as they finally gave him the meds I'd been telling them to give him, guess what? He's now got a good chance.
A stroke is similar but not the same. He doesn't have to relearn to talk or even to walk... he's just incredibly weak from being in bed. I doubt he'll become continent. I doubt he'll walk much or have stamina. But I think he will still enjoy watching his news shows and discussing what's going on in the world. I maybe wrong and I know that he won't last more than a year more. But I would rather he die from his body giving out than because he just won't do the work or because the nursing home/hospital won't give him exercise.
Anyway, I have learned not to talk to him about this when he's in his confused mode.. but I have also learned that I can be honest with him about his prognosis but to try to get doctors to talk to him about it when he asks! They know how.. I don't.
Thanks
I think you can tell them once, but if it's something they can't internalize and you have to keep repeating it over and over it's not really helping, it's just causing repetitive grief.
Why tell a person with dementia they're dying? What good can come of it?
It might feel wrong to you to lie and deflect, but think of it like this. Sometimes it's okay to do a little wrong for the right reason.
The only thing that will be accomplished by telling your father he's dying and going to hospice, is he will lose any hope he might still have. Your father pretty much has nothing else at this point. Don't take hope away from him. That would be unnecessary cruelty.
I think it was the tone of your posts that alarmed some of us, believe it or not we've encountered people on the forum who are all "tough" and zero "love", so forgive us for not being able to tell the difference.
What's his lung capacity? - comparing what it is now with what it was on previous occasions is a useful measure of how it's progressing. But don't get sidetracked by other more urgent symptoms into thinking this is not a serious disease.
One way to explain it is to compare him to an aging cellphone. You know how you put it on charge and it says its battery is full and it's good to go for eight hours and everything's fine... and then 30 seconds later it's as flat as a pancake and switches itself off again? It's all about how much oxygen his lungs can take up and make available. While he's sitting still doing nothing but be feisty about running away he really feels as if he can. When it comes to getting up and walking to the bathroom, he may find he can't.
You can encourage and motivate him by making sure that whenever he is working hard he has a way to stop as soon as he needs to. I followed my client with a perching stool so that if he ran out of juice he could sit and breathe immediately, no excessive struggling on because that makes people panic just when what they need is calm and quiet reassurance.
Exercise is good and maintaining a normal routine is good, but you've got to smooth the way for him. Go easy on that tough love.
I am not sure which came first.. his heart issues or the pulmonary fibrosis but part of me suspects that the pulmonary fibrosis has caused a lot of his issues, including the heart issue. I think it's caused him to have a problem maintaining salt in his body which has affected his BP, and possibly caused the dementia.... maybe it even weakened his heart. but as far as rehab right now, it's not the reason he is weak.
Thank you for those who advised me on how to deflect as when he's in his "dementia mode", that's what I will do.. not try to argue or explain. However he was in his "take charge... I'm still the boss mode" where he was the dad and I'm the dutiful daughter. I knew he understood me and he knew I was telling him the truth.
But he isn't always rational enough for the truth and he certainly isn't capable of making a decision like hospice for himself. But when he is rational, I'd prefer to be honest about his prognosis and options.
i think definitely:
be honest about prognosis/options/what might happen/what decisions he can make.
even if i would get dementia in the future, i would prefer honesty, especially about my future.
wishing you and your father well!! hugs!!
One day he started to slump over to the left in his wheelchair. My mother was screaming at him to sit up straight, for godsake, but he couldn't. I thought Stroke. I got him over to the ER and they did an MRI; the tumor had grown and that's why he was slumped over; it was killing him; seizures would be next. He could choose to fight on, or go onto hospice at that point, but the tumor was GOING to win. Dad was tired; exhausted; I saw it in his eyes. I was the one who had to tell him that there was nothing the doctor's could do for him at that point to stop the tumor from growing. No surgery or drugs; steroids were too dangerous at his age, which was 91 at the time. I told him he could fight or choose hospice care at his AL (he did not have dementia). He became very quiet. I told him that hospice was not a death sentence; that his friend Maria had hospice for 3 years!
He thanked me for all I'd done for him, for being such a good daughter and helping him for the years he & mom had been back in Colorado. He chose hospice. He went into his bed a few days later and never got back out. He passed away 19 days later. Dad was tired of putting up such a valiant fight against a tumor that was going to kill him, one way or another.
Your father has a very serious disease of pulmonary fibrosis. He too may be very tired and no longer wanting to put up a fight to extend a life that's boiled down to suffering with dementia and struggling to breathe. Honor that decision, if he chooses it, and help him accept the comfort care hospice will offer him.
We never want to lose those we love, but we also don't want to see them fight a losing battle and prolong their suffering.
If he was deciding that he no longer wanted to fight, I would understand it. But he says he wants to... but then wasn't doing it. Hospice is inevitable, I know it. But I'm only fighting for what he has always said he wanted because he wanted it... not because I want it.
I doubt if I'd lift a finger to get myself into a nice memory care unit if I also felt like I was drowning several times a day. I'm pretty sure I'd say sod it, give me the morphine.
Are there any better incentives on offer for him?
So has *nobody* asked your Dad what his preferred outcomes of treatment would be?
If I found a client with (late or end-stage) pulmonary fibrosis in a confused state, I'd get an oximeter onto his finger and get him to sit correctly and focus on breathing. The PTs should be able to show you techniques. When he felt better, I'd talk about whatever he felt like talking about.
If that happened to be his plans to go home, I'd talk round the subject with him, truthfully. You can be clear that it won't be happening today without having to crush all hope of anything ever being better again ever. If the opportunity presents itself and his frame of mind seems right, you can even point out the slight obstacle of his home's being a) 2000 miles away and b) no longer his property - "...BUT if you don't like it here let's work on getting to some place you prefer."
If he hasn't already been involved in the hospice discussion he ought to have been. Have you ever been able to talk to him about his thoughts and feelings about his terminal disease?
His pulmonary fibrosis isn't that serious and is just a complication really. Other than his heart and BP he has always been healthy as a horse. And his dementia comes and goes but after the hematoma is definitely worse.
By the way, the tough love talked worked wonders today. Pease read my update and thank you for talking me through this.
People get old, they get frail, there comes a point where they die - you don't need to rub anyone's nose in it, not his and not ours. If he is not progressing in rehab they will discharge him, they can't keep people there indefinitely when there are so many others who need a spot. Nobody is saying he will live happily ever after in a nursing home, I am saying that he can get the kind of care he needs there as long as he needs it. Specialized hospice facilities are about dying within days or weeks, they are not about long term care. If his doctors are truly advising that then he is much sicker than you are admitting to yourself.
But what are your father's own expressed objections to remaining in rehab? Is it just that he wants to be at home, or is it the food/the staff/the routines/the decor/the other patients/disbelief that there's anything wrong with him? If somebody is angry and shouting, it's often because people haven't been listening to what they say.
What conversations have his doctors had with him (with or without your being present) about his condition and his treatment?
has been recommended to me by many doctors and nurses. I’m the one who is trying to keep him out of that. I’m the one who is hcPOA and has to decide where he’s going. This IS the best place for him and for him to get better. If he leaves now, in the state he is in, they are recommending a facility based hospice. Yes it is going to be expensive. He has the money. He was paying lots for assisted living before anyway But he wasn’t well enough to stay there and now is very sick and weak but still wants out of here. It’s not possible. How do I explain that to him? Or am I just supposed to take his abuse that he thinks I’m keeping him prisoner here? Really? I thought you all would understand my frustration. So I guess the answer you want me to tell him is OK dad, you’ll go to the nursing home and live happily ever after?
He may want you at his beck and call but, you need to step back and have time to find your balance while he bemoans his situation to the facility.
It isn't your fault that he is old and failing. Some parents just like to beat their kids into the ground with their words and as adults we get fed up with it, I get it. So take time to breathe right now and let rehab deal with him.
Bottom line is you sound beyond burned out, it might be better if you limit in person contact with him - don't react to his anger with snark. Speak to the social worker at the rehab about how to begin the process to get him into a nursing home full time.
He actually DID understand what I said and started to cooperate today. I felt bad laying it on him but only he can do the work to get him out of here
I wasn’t mean to him, I just told him the truth. He was in a pretty clear mind when he was yelling at me. He is one who always gets his way with verbal abuse. But there is no way he is going “home”. He actually has no “home” because everything is pending his recovery vs hospice. But my question is.. what do you say if he is in a really confused state?
Heart issues don't improve, nor does pulmonary fibrosis. Not eating isn't usually a choice, and not being able to get out of bed fits in with all that general decline. He's not going to get appreciably better.
Put the poor man on hospice and if he improves, they can take him off it. My mother's been on hospice in her nursing home since January, and she still is gotten up and dressed every day, is brought to the dining room in case that's the day she wants to try to eat something, and her various issues are still being treated. The only difference is if she has another crisis or starts to die, we won't intervene and take her to the hospital. She has no idea she's on hospice.
If the doctors are suggesting hospice, then it seems like that's what's the best plan. Why would you subject him to more pain and suffering and then berate him for going downhill?
If you can do one last thing for your father, get him moved to a nursing home where he'll be cared for, then sign over his care to someone else and walk away. No one deserves to be treated like that, especially an elderly, terrified person with dementia.
I'm just sickened.
I can see why he 'shut up and stopped yelling at you'. The man is probably scared to death and needs a bit of compassion and understanding right now, in the midst of his confusion.
Dementia but not Alzheimer's is still dementia, and the level of confusion always waxes and wanes. That doesn't mean it isn't real.
This isn't really about you at all, but about your father and what's best for HIM now. Please speak to his doctor to determine the best course of action moving forward and try not to scare him to death with threats of hospice if he doesn't get his act together.
You probably mean well but the 'tough love' tactics sound like they're back firing. Try another approach.
Just explain he will have more help that will come.
The CNA that used to help me with my Husband said there were several patients that she had and they were unaware that they were on Hospice. And the cars they drive are not marked so no one in the neighborhood would know either.
The best thing is that the Hospice team will actually be more helpful, more beneficial to you than your dad. Yes he will get the care but that along with the supplies and equipment that you will get will benefit you m ore than him. Some people get scared with the word Hospice. Thinking it means 6 months or fewer. But that is not always the case, my Husband was on Hospice for almost 3 years. And I would not have been able to do what I did for him without them
I don't know if you're aware, but sending your father to a hospice facility to live out his days can be quite costly, as his stay is not covered under Medicare and has to be paid for out of pocket. The only time Medicare picks up the tab 100% at their facilities, is if hospice believes a patient will be dead within the week. Other than that again the cost is paid out of pocket by the patient or their family.
My husband was under hospice care in our home for the last 22 months of his life. He had vascular dementia, and I'm not sure he ever really understood that being under their care meant that they felt he would die soon, and we never really discussed it either, other than when he was initially kicked out of the hospice facility because he didn't die within the week like they thought he would,(and I couldn't afford to pay out of pocket for him to continue to stay there)and I told him that he would be coming home under hospice care, where he lived another 22 months.
I would have a heart to heart with his doctors and see what they recommend. Best wishes in getting this all sorted out.
he thinks there is another choice but there is not. It is all up to him.