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 .
Also respecting patient rights to refuse anything ( as long as they are safe) is something to consider.the patient may be fatigued more than one realizes and, sometime your presence, affirmation,assurance and love are most important.
Practice good self care also....
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.
with that being stated you will have to make the assessment and the decision, is there a medical reason why he cannot walk? Ask his neurologist and if he has an orthopedic Dr and find out if your dad could physically do, if the DRs say he could physically do it get a private PT. Medicare I know pays for 3 months 3 times a week with the beginning of the year approaching that might be an option for you to at least try it.
Best wishes to you.
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.
While SNF can't force him to spend all day in WC, having a patient care conference with them soonish to talk about goals of care would be my suggestion. Meet with the SW first, explain your concerns. Very often the plan is that the patient is up in WC and goes to dining room for noon meal. Afternoon rest on the bed if necessary. (Fully clothed, atop the bedding, warm blanket over him.). Then back up in WC for evening meal - in the dining room if possible.
Then back to bed for the night.
Wheelchairs are not that comfy. Do they have a cushion for him? Can they suggest a type of cushion for you to purchase for him? (gel, waffle, etc). Be sure to write his name on a cushion if you buy one!
Sometimes a patient refuses to get up in WC for fear of being left in it ('stuck in it) all day. (A quick assisted stand in bathroom to provide hygiene care in afternoon isn't a real break from sitting). A clear plan may help your dad feel more ok.
And yes, saying, Mr. X, time to get up for evening meal, and then just getting him ready to transfer is an acceptable approach. If he argues or stiffens up and resists, then they need to respect his wish. That time. But not an excuse to not try again the next day.
And ask the social worker about resources for you. Support groups help a lot, just to hear from others who know this path....take the suggestions that fit for you, and leave the rest. Just like this forum.
It is wonderful that you have found a good nursing home situation. Help your father remain as comfortable and engaged as he can be whatever his physical and mental functioning.
Watch a few Teepa Snow videos online. She is the guru of dementia caregiving, and can help you better understand how their minds work and why they think and feel as they do. My dad loved going out in the wheelchair to walk and see the outdoors, but he was quite clear when he wasn’t in the mood and didn’t want to go, and it was often hard for me to accept that, but when I did, and gave him autonomy over the activity choices, it was usually better.
I agree with those who suggest that you start with a statement, “It’s time for our walk dad!” And only back down if he is actively against the idea.
Many people in our culture are terribly fearful of death. It also was a great comfort for me to allow myself to stop and “look” at death’s door instead of running away from it screaming in fear with my hands in the air. Dad was merely moving in a very normal progression towards what we all face eventually. Hospice is an option if you feel it fits at this stage, and not necessarily a sign that he’s going to pass immediately. Dad was with hospice for over a year before he passed, and they helped us give him two wonderful trips back to his lakehouse that we couldn’t have made possible without them.
You are an amazing, caring child and you are obviously going above and beyond to do everything you can to be there for him. That’s the best you can do! Just keep being you - but also don’t forget to care for yourself with love as well. You need the TLC to continue on as a caregiver.🥰
All of it is so hard. I feel for you. I recognize and understand your frustration completely. Take it a day at a time. Lots of deep breaths. Work on accepting what is and just do the best you can.
only advice is to keep your sanity and try to take me time as much as possible.
Please give more detail about how he "lost his ability to walk". Did he have a stroke? A fall?
My MIL is in a good facility in LTC. She started in AL but then was choosing to never get out of bed, even to eat. She has mild/mod memory loss and not much dementia but her lack of movement caused her to now be bed bound (also she had a broken back in 2009 for which she did very little rehab/PT). Then one day I think the staff figured out how to get her to at least get into the wheelchair to go have meals in the dining room. She stays in the chair most of the day, the staff come get her for activities. So, what seemed dismal is not better, inexplicably. Don't lose heart but do engage and help the staff in getting your Dad at least to meals. My husband made a large sign in his own handwriting that said, "Mom, please do what the staff asks you to." The staff would point to it when she wouldn't cooperate.
Others are correct in saying that you don't ask or beg him to get into his chair. You roll into his room with the chair and announce "It's time to go to (the activity) now! Let's get you into your chariot (wink)". Or you can tell him (gently) it's "doctor's orders". Whatever you think will work. Don't give up. We never thought we'd see my MIL get up, out and do things.
I am very sorry to know of your emotional struggle with witnessing your dear father, Harry, in his decline.
I understand how hard it is, as do most of the people on this forum. I struggle every day with having been MPOA for my beloved Dad and having to call an end to heroic measures with a change to Hospice only when he lost his battle with Covid at age 80, two years ago. I'm watching my 88 year old Mom, in a MC unit, in decline with dementia and the gradual loss of her physical abilities. It's heart-wrenching to watch our parents in decline, there is no avoiding these emotions.
There are some things you may want to consider to ease your mind through this process. It seems that your dad is making his own choices to not have staff going through the whole difficult process of getting him up and into a WC; it's likely hard on his dignity to require this help and he is choosing to avoid it, for his own reasons. It sounds like he is willing to get up with family prompting as much for you as for himself. Please try to see this as his making his own choices to let go and although he's willing to do it for you and likely enjoys the WC trips, he doesn't want to be just one more old guy sitting around all day. WCs are uncomfortable if left for more than 2 hrs or if left in a WC 'line up' on the unit. He is making his own choices. Allow him that dignity.
When you can visit, go ahead and get him up, if he's willing, and treasure the times that you can share looking at the fall leaves and every other lucid, 'new-normal' moment that you can share with him.
With dementia, independent ambulation becomes dangerous. They forget to use their walkers and there are a number of other causes for falls. You don't want him to be injured and in pain. WCs are also a cause of falls because they can slip out, try to get out and fall; restraints cannot be used without very good cause and he's safest in his bed.
Harry is making his own decisions and he is letting go. He needs you to accept his choices. When the elderly withdraw from their physical abilities, they are making a conscious choice to do so. You'll begin to notice his loss of sight and hearing, a general loss of interest in all things; the weight loss signals loss of appetite and muscle atrophy. This is the natural process of dying. I think that this may be the thing you're missing: your father is deciding to leave this life.
Please make the most of your time with him and when he's in a more lucid cycle, talk with him about what he wants. Talk about the reality of his dying and your feelings about his decision to let go. I think that rather than having to plan for the post-visit breakdowns, you can ease a lot of your emotional turmoil by speaking with him about how difficult this is for you - because you love him and and he's your father, the man who's always been there for you. I'm not suggesting you burden him with overwhelming emotions, but rather, that you have these talks with him and let him know how much you love him and how hard it is to let him go.
I had to make the call to end life-sustaining measures for my Dad when it was clear that he'd remain ventilator-dependent and in a SNF the rest of his life, if he survived beyond the ICU. I knew he never wanted that because we talked about all of this when both parents made me their MPOA. When my Dad was extubated and taken off the meds required to keep him on the vent, he was somewhat lucid, but so weak that his body gave out within an hour.
I'm speaking of the heroics with my Dad because you now have the chance to make decisions on what to do once your beloved father stops eating and withdraws further from life. Decide now - if not already in an Advanced Directives - on what measures you will or will not implement. Clarify what he wants and prepare your self to not keep him lingering with a feeding tube in a frail hope of recovery. You have the gift of that time now.
I wish you peace, strength and clarity.
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.
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.
Prayers for your dad and you.
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.
My Mom started to hum. Each day the humming got a little louder. To the point my Mom was medicated for anxiety. Next thing that happened is she shut her eyes but seemed responsive. Last thing...she would not get out of bed. I told the nurses to let her be. Next was she was having problems swallowing. I then said Hospice. Mom passed 6 days later, 20 minutes after my nephew and I visited and he was the last family member to visit. The one she worried about. From the time she showed anxiety to her passing was 2 weeks. Mom was 89.
Nurses cannot recommend Hospice. It needs a Doctors order. I suggest you talk to the DON to have Hospice come in and evaluate Dad.
One thought - when you say wheelchair I hope you are not talking about the basic ones we are all familiar with at hospitals, those are not designed for all day sitting and would be very uncomfortable (and I can understand why he'd rather be in bed). Since he is likely to spend the majority of his days in a wheelchair it is imperative to get something better; ask about having him fitted for a custom tilt in place chair, there should be benefits available to defray the cost.
This is one of the many declines that he has had over the years but the loss of the ability to walk is a defining one.
the thing to watch for now are pressure sores. Make sure that the staff is repositioning him every few hours so that will minimize pressure sores.
If he is on Hospice ask that they provide a bed with a mattress that will provide movement to help prevent sores. If he is not on Hospice his doctor can order one.