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50sChild Asked May 2018

Is there an ultimate authority, when approaching the end of sub-acute rehab placement, over whether Dad goes home or to long term care?

As legal and medical POA, I am emotionally on a wild ride as I begin to wait for rehab’s assessments. Dad, 97, is being admitted to rehab today after a four-day hospital admission, after a fall where he hit his head hard. He’s ok after lots of imaging. He has dementia, advancing hydrocephalus (no shunt, he refused in 1990), and severe aortic stenosis, which probably were the cause of the fall (my back was turned for about 10 seconds and he decided to stand up on his own to remove his socks). He has been falling (without injury) more regularly in the past six months. I have a hunch rehab will make a well-considered recommendation, but ultimately the decision lies on me. If that is true, I have to face either the probability of having a catastrophic fall at home (no reliable night care), or his being quickly placed in a dreadful LTC. I’ve just toured seven LTCs. Of course the ones I felt good about have 1-2 year wait lists. Dad has such an amazing daytime caregiver at home, that even Dad’s primary doc said (before the most recent fall) -- “Keep taking the risk” of home care.” My 86-year-old dear husband has been so patient with my caretaking role for the past 10 years. He’s suggested we split so he can live out his life in the warmer climate we have both dreamed of. I really don’t want to continue making Dad’s home life work, but am having a hard time facing realities now that crux time is here. I really don’t want to go through being Dad’s grim reaper. Most of all, I really want peace and some joy with my husband. I know that sounds like a no-brainer, but I don’t have a reliable brain right now. I feel very alone, as my co-POA sister is very ill and wants me to make all decisions.

SueC1957 May 2018
Not to be negative but your dad will probably fall again (through no fault of your own). Elders, especially the demented, don't or can't listen to reason about not getting up. I had the same problem with my 95 year old Mom.

I've had patients fall with me hanging on to them. You can't prevent it. Also, their porous  bones break (osteoporosis) and they fall.

If you bring him home, he will fall again. Either way, he will wind up in a nursing facility at one time or another, I'm sorry to say.

Biblically and by wedding vows, you have promised yourself to your husband.
God only knows how much time we all have. 

Please find a facility that you and Dad can live with, help your dad settle in, then go to where your husband is enjoying the sunshine.

IMO, it's time to place Dad and rejoin your husband while you still can.

cwillie May 2018
I don't think there are many people who think "oh goody, I'm so happy I/my loved one get to live in a facility!!", but the sad reality is that for many there comes a point where they need the kind of care provided there. Entering any NH can be a huge culture shock, even the ones fixed to look pretty can't hide the fact their residents are in various stages of physical and mental decline. The thing is, we are an adaptable species and we can learn to thrive anywhere, as long as you pick a place with good staff to patient ratios and where you see people actually smiling or laughing then the rest is just "lipstick and make-up" that isn't going to necessarily mean better care. You can do this.

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Harpcat May 2018
I have to concur with SueC. Your dad will fall again...not if but when. My dad was in rehab too and decision made was to move him to LTC and not back to AL. Coming to my home was not an option. My life is with my husband and our marriage. It takes precedence over my dad. He is 96.5 and in a facility where his needs are met and he is as safe as he can be. And yes he’s fallen 3 times inside of 3 months. I look over his care, attend to things he needs and visit but as someone else said we do not know how long we have on earth. Your dad and mine have lived way beyond the normal life span and they’ve had their time with their wives. I would just be sure he is comfortable and settled. The usual morbidity after a NH move is 2 years. I and my dad are praying for his release much sooner as he is ready to set sail.

JoAnn29 May 2018
Your question was really not answered. No there isn't an authority who can override your decision unless they feel there is abuse. If you can prove that Dad is being well cared for in his home. That all safety measures have been put in place, I see no problem. But I agree your between a rock and a hard place. If you put him in LTC, is there a sibling or family member who could check in on him? I am assuming that "warmer" weather means a move for you.

Just me, but at this point I would go with the husband. 86 is not young and I think your time should be spent with him. Dad's Dementia will only get worse. And if not already, he is in his own little world. Does he know you as his daughter? I do feel for you.

BubbaSue May 2018
Please listen to all the support you are getting with the thoughtful answers you are receiving. As the primary caregiver, you need to understand you have given your dad the best care over many years. It's now time to relieve the stress from your life and move him to a facility. It doesn't mean you don't love him or have given up, but his care is beyond your scope now and you have to let go of the responsibility. Sounds easy, but I had a nurse friend who helped me accept what I knew in my heart. It is difficult, but in your heart, you know it's time for you to be helped. Tell the rehab you are going to need long term care for him. I did it, too, for my mother after a devastating fall with a brain injury. It was hard for me but best for me, my mother and my husband. God Bless.

igloo572 May 2018
Who - to you - is the more important.... your husband? or your father?
The indecisiveness is unfair to both of them.

Made a choice of who is the more important and if it’s dad then move in to your fathers place be there for overall presence and nite duty for your dad OR if it’s hubs have dad upon completing his rehab segueway to a LTC resident and you move with your hubs to whatever warmer climate you two have been planning for throughout your marriage.

Your home gets sold in choice #1 as your moving in to dads place & it gives hubs $ for him to start afresh in wherever he settles “warm”; Dads home gets sold in choice #2 & perhaps yours as well depending on your & hubs finances & snowbird plan. Whichever choice you make by placing a home on the market with a Realtor enforces that a decision has been made by you and moves forward your decision.

OverTheEdge17 May 2018
This is tough. I don't know all the legal issues, but I can share my experience. Mom got discharged from rehab partly due to her insurance cutting her off and partly because she complied "just enough" with the therapists to sweet-talk them into thinking she could manage at home with minimal help. Once she got out of the controlled environment which rehab gave her, she quickly started falling. Like I'm talking 6 falls in 3.5 months. A lot of falls. And, she quickly started being noncompliant with the therapists which would come to the house. I think once she was back home, she figured that no one could legally change that. She was very passive-aggressively defiant and would sit in a chair all day making demands and complaining. She had both urine and stool accidents frequently - and that's with a bathroom 6 feet away from the chair she chose to sit in all day. She was really going downhill, but she believed that no one could put her in a home if she did not want to go. As others here have posted, we all knew there would be another fall eventually. We hated to just wait for it, but she was not going to leave her house willingly - she and her sister just demanded that I personally see to it that she had more effective care. Somehow, it was my fault that she kept falling and refused to do her prescribed exercises to regain her strength? One day, the fall we knew was coming actually happened & we believe she lost consciousness that time. She went from hospital to rehab. At that point, I don't know if there's an authority on this (as in what you're asking for), but I simply refused to bring her home. I made it known to the rehab facility that we would be needing a nursing home bed since caring for her at home obviously did not work out & is not safe. Legally, I don't know if Mom would have been able to "fight" that, but she didn't try and neither did her know-it-all sister. We have POA - not her sister. Take care of yourself and your husband. Your father needs more than you can do for him. You tried. And it sounds like you succeeded for a lot longer than I did.

Countrymouse May 2018
I'm so sorry for the fix you find yourself in.

There are just so many imponderable factors, aren't there?

At 97, and with your father now so very frail, and although one has to be careful what one wishes for of course, this may all resolve itself quite quickly.

At 86, it is understandable that your husband doesn't feel he has time enough to spend on more waiting. But even so.

If rehab is going to come up with a good strong recommendation, would it be too much to ask them to come up with a good strong, not to say forceful, referral to a decent care facility? They must surely have some influence with the key admissions personnel.

Or, what is awful about the ltc's that might be easier to get into? Might it be possible to retain the excellent caregiver to supplement his care and compensate for any shortfalls at the least worst of them?

The problem I perceive with any facility though, actually, is that you still won't feel free to jet off to sunnier climes, will you? I haven't yet read of a caregiver who happily washed her hands of the whole business the second her loved one got placed.

Right.

Yes, there is an ultimate authority, and that is you.

You don't know what to do for the best. I don't blame you, I don't think it is possible to know.

So perhaps, its being Thursday, you should firmly decide to do nothing: you just don't have enough clarity to come to a decision with any confidence. Just let your thoughts marinate over the weekend, and then let's go through them again.

Ree111 May 2018
I was just praying about what to do about my 89 yr old mother. These answers have confirmed what I knew already but couldn’t decide. Thank you all.

CaregiverL May 2018
Take him to any place that will accept him. Go for the care plan meeting & go w husband to warmer climate. You’ve done more than enough.

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