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Mother will be 91 years old April 22, 2013. She has had two hospital stays due to falling, plus C-Diff, which was absolutely terrible for her. It was exhausting and embarrassing for her to say the least since she has always been a very proper lady. She has moderate-severe dementia, depending on the time of day. Mother is fortunate to have a loving family who dotes on her. Her therapists say that she works best with them around 10:00 a.m. Mother is always
cooperative, but she simply will not trust the therapists to do their job. I have tried to be supportive at times when the therapist is there, and she still is mortified to stand. What can the therapists and I do? They say that she is quite capable of standing, but the longer she delays with this, I know that it will be very difficult for her to ever walk again or use the walker. She is in a wheelchair now and even has difficulty navigating it.

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I don't have an answer but just want to say that I understand. Either she thinks she can walk while laying in bed or when therapists are with her she refuses to try. Says she is too old for this or gets too scared to put weight on leg and just goes limp.
I keep doing leg exercises with her hoping some day...
Stay strong and supportive
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Interesting and valuable topic for a new book.... training institutional professionals about home care. I've always felt they could use lots of training to learn the language and skills that family caregivers learn over time, so they come to see the value of prevention and alternative ways to relax a schedule while still including all the key points - just not on an institutional timetable. Maybe an institutional care v/s family care Wife Swap.....
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Yes, Castle, good book. I also have "Improving Hospital Care for Persons with Dementia," by Silvestein and Maslow. I haven't seen anything specifically about training other helping professions to deal with elders in general and dementia in particular.
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So true jeannegibbs - I find some of the therapist professionals have great knowledge of procedures and muscles but not enought training on what difference would make a difference for elders. I understand that they try to get anyone active pretty quickly after an operation (I had a knee operation, and I was barely awake and very nautious and the therrapists were telling me to just get up and walk, and I went home an hour later - yikes!! and I was in my 40s. So maybe that's why they send the PTs to the homes right away, but they need more training to be less ambitious and to gradually build up. You're right, an elder is still disoriented after all the changes. A man named Dennis McCullough MD, wrote a book about "embracing "slow medicine, the compassionate approach to caring for your aging loved ones" the title is MY MOTHER, YOUR MOTHER. So many plans are made according to schedules for young people - keeping ages so separate in our modern society, ended up leaving younger ones pretty ignorant about normal slowness that elders need and actually benefit from - with time to adjust to each event in the day!
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Shortcake, I understand your reasoning, and I hope this mother can get help to at least retain enough strength and muscle tone to assist with transfers. But you seem to be assuming that she is going in to a clinic for therapy, where all kinds of apparatus is available. I assume that the therapists are coming to her home (based on experience with my mother and my husband, and the difficulty of getting a non ambulatory loved one to frequent appointments out of the home.) But perhaps she is now in a rehab facility (hard to tell from the post). It would be good if she could take advantage of whatever therapy is available to her, for all the reasons you name. For however much longer she has to live, it would be good if she isn't unnecessarily a bed-bound invalid.

The whole hospitalization event has been very stressful and traumatic for this dignified woman. This may not be the ideal time to have therapy for walking. Something less ambitious, just to maintain muscle tone, might be more suitable, with more aggressive goals after she recovers from her hospitalization.

I found that very frustrating about physical therapy for my husband after hospital stays. The pt always came to the house almost immediately after discharge, when he was at his weakest and most confused. What they did seemed to have zero benefit. The sessions he had not related to a hospital stay, when he was aware of the reasons for the therapy and in agreement with the goals, and also a little stronger, seemed much more effective.

I don't think that good strategies have really been worked out by the profession regarding physical or occupational therapy for those with dementia. And frankly, none of the therapists we worked with knew diddly about dementia. I'm sure there are some out there somewhere who do, but we did not encounter any. Pleasant people, yes. Well-intentioned, definitely. Skilled at their profession, probably. But trained in how to deal with persons with dementia, nope.
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Poor mom! With dementia, she can't really reason and those falls are excruciatingly painful for her as well as hard to heal from. Can you get a wheelchair for her? Not the electric kind but a simple one where she could be pushed in it.
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Well, I agree with Shortcake, for this woman may live 5 years anyway, and it will be harder on her physically, if she sits most of the time, instead of walking. I think it's a matter of balancing caregiver stress and letting go - just because one tries repeatedly to help her walk, doesn't mean one has to be tied to the result that she will walk. One is only tied to making a repeated effort, and making that process enjoyable, not one of worry and focus on any end result. Changing therapist could be a good idea, especially to one who knows it can take many tries, and applaud her briefly after each day for trying, then move on to other things. Not too big a deal, but keep trying. Nothing to lose, make the effort part of the visit, and enjoy the rest of the visit. Have a therapist who can enjoy it all too, pass or fail, and one who can note and celebrate any small movements along the way.
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Shortcake is under the impression that 5 yrs. of having dementia is desirable. You can try many avenues, but the end result will still be the same - death. She will be unable to walk as the brain is robbed of the ability to communicate with the muscles. Also when you break a bone IT HURTS! I have fractured both wrists and it took many years of therapy and I still cannot function as I used to. So I accept my limitations as a 91 yr. old has learned to do. May she rest in peace! Remember folks, NOTHING you can do will change the inevitable.
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My Mom fell and broke her hip in 3 places. They did surgery & screwd her back together and she is a strong willed woman who was proud of the fact that she could walk on her own.
She contracted Cdif and pneumonia and was in isolation for 2 weeks. She was so weak from those infections that she just cant get up the strength for walking. I had to spoon feed her.She also did physical therapy and after 1month they said she had to go to continuous care. She is happy there ( I wouldn't be). For once in her life, she is free from getting dressed up , etc as there no one cares and I just let her be. She goes out of her room which makes me very happy, but someone has to push her. It broke my heart to see her struggle to get up walk etc with a therapist. The only thing I get upset about now is when she says she doesn't want a shower. It's hard to let go of them but like a child going off to college, you have to let them be and be happy as many have said here.
Surprisingly, it has lightened my hold on her and I feel free and can just enjoy her in another part of her journey.
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I completely disagree! Your mother could live another 5+ years. Without weight bearing through the legs and out of bed/ chair activity you are setting her up for increased pain in her joints, risk of joint contractures, skin breakdown, pulmonary disorders, decreased sense of self worth, impaired awareness of night and day.....etc. etc. While I do agree that it is highly unethical to force someone to walk/ stand if they don't want to, you need to exhaust all efforts first.

First, try a different therapist. Some people feel more comfortable with males as they feel they are stronger; some prefer female therapists. Also, in general, your mom may respond to the personality/ attitude of a particular therapist. Often times people with dementia will respond to someone because they may remind them of a grandchild, friend, etc.

Second, there are plenty of interventions to increase confidence. Use of parallel bars, mechanical lifts, standing frames that can decrease that fear of falling. Unfortunately, once someone has fallen, that fear will probably never go away completely but these devices can help.

Third, utilize familiar activities. Standing & walking are familiar. Introducing a device like a motorized wheelchair is challenging & can be overwhelming.

Fourth, be aware of the environmental stimulus. For example, make sure 4 people aren't screaming "you can do it" all at different times. Keep the atmosphere calm & non-distracting. Music often works. For standing, walking & transfers I have oftened "danced" with my patients and led them to where we need to go.

Fifth & finally, encourage consistency & routine. Establish a schedule for daily tasks & for therapy sessions.

Best of luck!
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I agree with Veronica91 about letting a 91 year old do what feels comfortable for her. However, electric wheelchairs can be kind of dangerous for patients with dementia because of difficulties with attention and judgement. (It's like letting someone with dementia drive a very slow car.) We decided not to get an electric wheelchair for my husband for this reason. He can wheel himself around a bit in the house but needs to be pushed outside.
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Demented patients tend to stop walking about six months before they die. I think I would listen to all the above advice and just let a 91 year old do what feels comfortable for her. Maybe it is time to get an elecric chair for this lady which would be easier for her to manage
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If a 91 year old woman with dementia doesn't want to walk, for whatever reason, why are people pushing her to do that? It is just likely to make her quality of life worse because it causes her to feel fearful and unhappy. Perhaps they can just do seated exercises with her or - just leave her in peace!
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What is the worst that can happen if you left her alone about standing? At 91 yrs. and mod-severe dementia, she will die from it or something. Why not let her live her life just as she is and there will be more peace all around. You cannot change this diagnosis. This is a terminal illness. Keep doing things for her and maybe one day she will decide to walk or not. Let her decide what she wants. At this late stage she will forget what she wants too.
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Some people never have the confidence/courage to walk again. I wonder if there is pain/the memory of pain that keeps them fearful? Psychotherapy any help?
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My mother has the same concern. We purchased a freedom walker for her which enhances her confidence
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In my experience, medical professionals who do not specialize in dementia do not have a firm grasp of how that disease manifests itself.
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Mom has dementia. Her brain can't make all the logical connections we take for granted. She fell and that had dreadful consequences. She doesn't want to do anything that would make/allow her to fall again. You know, and the therapists know, that she will not be allowed to fall while the therapists are working with her. But that is a logical conclusion she apparently can't make. It may not be simply about "trust." It may have to do with the logic of cause and effect that just isn't operating for her.

Could the therapists do exercises with her that would help strengthen her legs so she can continue to assist with transfers, but without her walking? (They had my husband use a foot pedal thingee.) Perhaps given more time she'd be more willing to try walking, but I understand the need to build some strength now.

And as far as "she is quite capable of standing" ... maybe she has the muscles to do that, but all muscle use is controlled by the brain. And at the moment, it sounds like the brain is not "capable" of getting her upright.
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