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Hi everyone , my dad recently lost his ability to walk he has dementia and lives in a loving nursing home. He’s finished his physical therapy but still cannot walk safely on his own with a walker so now we push him in a wheel chair . I’ve asked the physical therapist there if it’s an unrealistic expectation that he will be able to walk on his own again with a walker like he used to and he said yes that it’s an unrealistic expectation. It’s very hard for me to see him like this. He’s lost weight, too. He’s taking ensure to get his weight back up. What’s upsetting to me is having him in bed all day. I’ve talked with the staff numerous times about asking him daily if he wants to be put in the wheelchair and he says no to them most of the time I know he says no because he’ll say no to me a couple of times and then I beg him to get in the wheelchair so that we can go outside and look at the fall leaves or do an activity and after begging he’ll get in the wheelchair. It’s gotten so upsetting for me to go see him that I have to strategically plan when I will see him because I know afterwards I will end up in tears and exhausted. Is this the beginning of the end ? I’m so frightened and so upset. I do everything in my power to keep him healthy and taken care of. Am I missing something? I just dunno what to do. My dad's name is Harry. Please keep him in your thoughts and prayers .

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A nursing home cannot force a resident to get into his wheelchair if he says no, contrary to what others may think, UNLESS there is a clause in the resident contract or agreement stating it is their policy for all residents to be dressed and put into a wheelchair daily. Can you imagine the outrage and shouts of REDIDENT RIGHTS VIOLATIONS if they were to do that?

Its hard to see our parent decline, I know, I watched it with both of mine. I don't know what you can "do" to change this situation now for your dad, it may be out of your hands. You can get him a hospice evaluation to see if he is indeed thought to be approaching the end of his life. One way or another, though, is it not your dad's right to live his life as HE sees fit now? With dementia at play, much of the quality of his life has been stripped away from him, no matter how hard you try to make things nice for him. Things reached the point with my mother and her dementia that I prayed daily for God to come take her out of her misery. She went into a wheelchair nearly 3 years before she passed bc of neuropathy in her legs and feet. She was making no progress with physical therapy, and it felt too cruel to force or coerce her into doing it for MY sake. Because it wouldn't be for her sake at that point....she was too wobbly on her feet with terrible balance issues and vertigo to boot. So the wheelchair was her best bet. I know she felt relieved to be done with the "torture" she called physical therapy.

Maybe your dad needs time to adjust to his new normal, so allow him that time. Don't try to force anything on him bc he's already confused enough from the dementia.

Boost makes a drink called Very High Calorie Boost which has around 550 calories in an 8oz serving. You may want to get him some, and bring him a real milkshake when you go visit.

These visits are tough, I know. I'd end up crying myself at the end of a visit with mom or dad (both in wheelchairs) at the end, so I feel your pain. My advice to you is to get the hospice evaluation so you'll know where dad stands with respect to his lifespan. Then let go of managing his health and physical therapy and just be his loving daughter until God decides He needs him more in heaven than being an angel on earth. Hold his hand, rub his head, soothe his brow, bring him cookies and milkshakes. Try to make these visits as stress FREE as possible for both of you, so that when you look back on these times, it'll be with fond memories vs you insisting he do something he's too tired to do. That's my advice from a daughter who's been in the trenches with both of her parents who are now gone.

Best of luck.
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If you're POA, you TELL the staff you want Dad up, dressed and in his chair every day. They should know better than to let him stay in bed all day, they should know better than to let him stay in bed, but if it takes you spelling it out for them, then, so be it. There is absolutely no reason why he should be in bed all day.

I realize the thought of losing your father is upsetting, but there’s really no good purpose to getting exhausted and tearful every single day. Part of life includes the end of life, so be supportive and helpful to your dad, but stop denying the reality that he’s declining.

I don’t see any evidence that this is “the beginning of the end" but then, the beginning of the end is the day we’re born.
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Cover999 Oct 2022
Exactly
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When my mother was in a NH she had zero ability to walk or do most anything else. There were very few days she was not up in a wheelchair. The normal routine was up in a wheelchair after dressing her for the day in the morning, back in bed for a nap after lunch, and back in wheelchair until bath and bedtime. In four years there was never a pressure/bed sore. She was rotated every three to four hours while in bed. You dad’s muscles can atrophy if he isn’t moving enough, this gets increasingly painful for him. Consider if he’s dealing with depression that’s contributing to his lack of wanting to get up, a small dose of a med for this could help. It’s important mentally and physically to get up and see different spaces daily. On the flip side, if he’s ending end of life (a medical consultation can help assess this) it’s kinder to leave him alone and keep his room quiet and peaceful. I’m sorry, I know firsthand how hard this is to watch. You have to make your own peace with knowing that decline and loss are also natural parts of life, no fun to experience but coming for us all nevertheless. I hope you can find more information on your dad’s condition so you’ll know the best plan going forward. Most of all, just hold his hand and let him know your love and care
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Mariavictoria30 Oct 2022
Thank you so much !
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This is my experience - maybe it will offer some help. The dementia robs them of the judgment that lying in the bed is a sure way to become bedridden and then more problems arise.

My 95 yo mother would never get out of the bed if I gave her a choice. She lives with me so I have the benefit of controlling the situation.

Every day she has to get up - usually around 12:30 pm and walk to the kitchen - with an escort at all times - and sit in her chair - it's a big comfy wingchair - until around 6 pm when she can return to her bed.

When she gets restless and wants to "go back to bed", we instead do laps around the kitchen island. Yesterday we did 8 - the day before we did 10. And before you know it, she's happy to get back into her chair.

She also still gets physical therapy once a week on a maintenance program for people with dementia that Medicare and her insurance cover as long as she is able to do the exercises.

If she were to be allowed to lie in the bed all day and all night, she would also lose the ability to walk because of increased muscle atrophy.

I imagine that in a nursing home, she would not be encouraged to get up if she was happy to lie in bed - less work for the staff, and honestly, how can they give their residents one-on-one attention all day long anyway.

I have also heard that dementia will eventually rob her of the ability to walk.

However, for now, as long as she can put one foot in front of the other one, I won't let her stop.

Hugs to you - It's painful.
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SusanHeart Nov 2022
I am with you and am the same way.
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The same thing happened to my wife about 9 months ago. It came in fast after a fall the broke her wrist and landed her in a care facility. It was a very bad experience for her. Not there now. She is home and can not walk or stand. Has dementia. I am her caregiver and had to give up work. Our lives have changed forever.
only advice is to keep your sanity and try to take me time as much as possible.
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It sure is hard to watch our parents decline. It seems like PT did their best but then he did not progress enough to walk on his own anymore. If progress is not being made, they have to suspend PT at some pointe. Very sad but I guess you'll have to come to terms with this. It's part of his decline, of his dementia, of this new part of his life.

I agree with others on getting a hospice eval. Who knows? Maybe these issues are signs that he is getting near enough to the end to qualify?

You could ask the staff to get him into his wheelchair every day. When you go, don't ask if he want to get into his wheelchair, just be assertive and nicely tell him it's time to get in his chair because you want to take him for a walk. My mom has dementia and if I ask her if she wants to do virtually anything, she says no. So I don't ask and I've instructed her caregivers to be more assertive. She can still resist when we're assertive (OK, let's do a puzzle! or Time for your shower, etc.) and if she does, we let it be.

I hope you find a way to calm down and deal with this stressful situation as best as you can. It's not good for us to be too upset and stress too much. It's not easy to deal with but we have to be good and kind to ourselves too.

Best of luck.
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I'm always surprised by those who suggest that 75 isn't "that" old. Some people at 75 are spry while others are frail. Your dad is frail and dementia contributes to making that worse. He's losing weight and can't walk. Perhaps it's time to have a consultation with hospice. So sorry that you are going through such a difficult time.
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Geaton777 Nov 2022
NYDaughterInLaw, yes you are right... it's all relative. In my family 75 is not very old considering the longevity my Mom and all her 7 sibliings experienced. If I could delete that comment, I would.
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I had a difficult time with my wife. The doctors said nothing stopping her from walking but she has slowly deteriorated over this last year to the point she can not stand on her own. It is a mental thing on both parts. She has lost the will to walk and I have lost the hope she would. Many dreams have vanished. Now I focus as a care giver. Dementia is starting and it is difficult to watch the one you love fade away. I try to find time alone to clear my mind and focus on those things that make me happy.
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I’m so sorry you are going thru this horrible sequence of terminal events. I just went thru it as well. My husband passed away 3 months ago after a rapid decline with several falls. Sending hugs and prayers to you. It’s very hard🙏🤗💜
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JoAnn29 Nov 2022
So sorry for your loss
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So sorry that you are going through this. I am much more sorry that it is just going to get worse. The terrible part of watching our parents waste away in their final years is that our perception of their existence is usually based on the energy and capabilities with which they managed their lives when they were younger. There is something foreign and "wrong" about those formerly energetic and capable people declining.

As others have mentioned, there are little things you can do to make your father more comfortable and give him a better outlook. However, the fact is, he will continue to decline.

I would suggest that you look to do what you can to improve his outlook rather than hoping to try to find something that will make him improve physically. You may want to talk to a friend who has already gone through this process, or a counselor. It takes a massive attitude adjustment on your own part to try to find the things that may really help him.

Bear in mind that "healthy" is a comparative term at this point. His body is wearing out. His "health" will continue to get weaker. However, your visits still have the potential to be the highlight of his day or week. Think about the things that made you both happy when you were growing up. Bring a souvenir or photos of that special vacation that was so exciting when you were in elementary school or junior high. We found that when we were caring for Mom as she declined that we could use old photo albums to talk about times from much earlier days and that Mom took a great deal of pleasure in talking about the times in which she was the boss and was capable of doing so much. She remembered the old times rather differently than we did, but the point of the discussion was to allow her to revel in the times when she was happier.

Part of my share in taking care of Mom was taking her for a drive and lunch once a week. Sometimes I would take her to a new place, but more often I would take her to places where she will be able to remember old associations. In doing these kinds of memory trips, we were able to put her in a more cheerful mood and we could end our visits focusing on her improved mood rather than on the ongoing decline of her physical body.

If your father is not willing to get into a chair and go out and look at the leaves, pick up a paper bag's worth of dry leaves and bring them in for your visit. Use a little imagination about what to do with them. You could decorate his room a bit, or throw them in the air and let them fall. Talk about their colors, remember things he did with you in the fall when he was younger. At Christmas time, bring in some old ornaments. Use them to talk about happy times, happy things. Bring in the cookies you used to make for him. Bring him some flowers that are blooming in your yard.

I think that if you can manage to wrench your mind off his upsetting physical condition and focus your attentions in helping him to think about happier times you will both find your visits more fun.

My mom is gone now, and frankly, I had a pretty rotten childhood. However, the memories of Mom's last years have a rather sweet cast to them. We got a chance to have some nice conversations, make a few new memories that were often better than the original memories. I set my goals quite low for these visits--I just wanted to make Mom smile. Frequently we did a lot better than that, sometimes we both smiled and even laughed. I hope and pray that you and Harry can find some things to smile and laugh about and that you will be able to find some joy trying to make him smile.
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