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She was in hospital for 2 weeks and deconditioned, then rehab for two weeks. Before going to hospital she was walking with walker slowly back and forth around house, could stand and balance for over 5 mins. I know she's still weak, but she expects me to move her legs off the bed for her, button her pjs, hold her water cup....she can still do all that stuff! Is this typical after return from rehab?

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None of you has any idea what it is like to live in one of these facilities, whether it's a nursing home, assisted living, or Rehab. Those of us who still have our brains but have lost some physical abilities have seen nightmares of abuse and neglect. Some of it on others, some attempted on us. Some don't have the cognitive ability to report it because they can't remember what happened 5 minutes before. To hear that someone had a diaper that was slapped on them when they were not incontinent is just the tip of the iceberg. That's called physical abuse and neglect. If there is not enough staff to help an old person get to the bathroom, get them out of there. If the residents report violations, they can reap all kinds of abuse you can't even imagine, like slapping, pushing, deprivation of food and drink, isolation from other people, threats by staff of calling the police, under or over medication. So the time to get Mom out of there if she was denied help to the bathroom has long come and gone. I'm sorry you got stuck taking care of your 93 yr old mom. I'm sure she is sorry too. None of us wants to be stuck being dependent on our children or anyone else for that matter. But when we get to the point where we can't function like we used to, we now have these institutions that didn't even exist 30 years ago that will take your life savings and make all kinds of promises. And then, once the family leaves, they do whatever they want. People with dementia might remember how to fasten buttons one day, but forget the next day. Or maybe the arthritis in their hands is so painful, they don't want to do it, so they ask for a little help. Or maybe, just maybe, that's one way of getting some much needed attention and affection. I pray to God my children will never complain about having to put up with my "demands." The day I hear that would be the saddest day of my life. I spent a lifetime changing their diapers, holding them all night when they were sick, sacrificing money and time to be there for them because I love them more than anything. What a tragedy that our society views us old folks as a burden instead of appreciating our service, our sacrifice, and our wisdom. I'm glad I have children and grandchildren who take such good care of me. I'm also glad I have my brain left and a camera in my room to catch every attempted abuse by the staff. Now I'm going to find my bottle of wine, have a glass with a little chocolate and watch a good comedy.
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LuluRoxy Jul 2020
enjoy your night-I feel your post -keep sharing here-
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I think it will help you if instead of thinking of this being due to laziness you reframe it in you mind differently. If you approach it as her still being in recovery and exhausted to her very core, probably both mentally and physically, that will make it easier to encourage her to try harder rather than inwardly cringe at her "laziness" and lack of cooperation.
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Sneaky8 Jul 2020
Thanks, I do try to think this is temporary and she will get stronger, she is just taking her time since she's 93. She's a hardy woman, walked 2 miles 3-4x/week at 87.
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Sneaky 8
I feel for you
I hate when people say you’re lucky to have her at her age to do for it
not everyone feels they can do this kind of care and they are not bad people
and yes she can be putting on the act and it sounds like she is to me
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My mom had a stroke in Jan and was in rehab for 2 mos. when she left rehab she was able to walk with a walker, dress, do her morning grooming routine, go to the bathroom, etc. she had home healthcare for pt, ot, and shore assistance for about 6 weeks. As soon as the final pt session ended she started declining, asking for every little thing. I gave her a bell to ring when she needed help. I got to the point where I was hearing that darn bell even when she didn’t ring it. Then she decided she didn’t want to walk any more and insisted that “they Put me in the wheelchair to go to the bathroom”. I continued to make her walk - she was always mad at me, I was so exhausted from running to her room to help her move her legs, get her resituated, give her water, etc that I started thinking she would have been better off passing than living like she was.
Then one day she fell and I had to take her to the er. She was in the hospital and rehab for 5 weeks, unable to walk, eat or do pt and or. She kept complaining about pain from falling. After giving her pain pills and patches they decided to do an ultrasound and found she had a swollen and infected gall bladder as well as a bladder infection. Praying that she would come out of the surgery ok, she did, but was weaker than ever with additional dementia. Now, back in rehab I’m unable to see her because of Covid and I can’t talk to her in the phone because she can’t hear me. I pray every day that she is being taken care of properly and is getting back to herself. I was allowed 1 visit outside and she looked terrible. They assure me that she is doing ok but unless I see it with my eyes I don’t know for sure. I cry every day wishing I could hug her and tell her I love her. My biggest fear is that she will die in that place and I won’t be there with her. This has been kind of a long winded note but for as much frustration as I had and as you are feeling right now, I can hardly wait to hear that damn bell ring again. However, this time I’m getting some additional care a couple of times a week so I can get out of the house once in awhile, No one know how hard being a caretaker is until they do it themselves. The home health will help a lot. But be advised that she may decline when they finish their jobs. Getting additional help
is a stretch for us financially but I think it will be worth it. Also, make sure she gets regular checkups for bladder infections. They can cause all kinds of problems. I wish someone had told me all of these things when she left tcu the first time.
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Katlyn Jul 2020
Your story is almost identical to mine, except I did not let them take her to rehab after surgery. The Virus has made it all so risky. She is home with me and I am getting better every week at caregiving, but it has been a long hard journey. I needed alot of help! Blessings to you and your Mom.
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Yes, very typical from what I've experienced. They are totally taken care of in both of those settings, they seldom get up. In the rehab - although they are there to get them to their previous level - what I found was long waits to go to the bathroom and therefore encouraged to wear and use a diaper. My mom never wore a diaper, so this was a blatant digression created by the facilities. While they took her to the exercise room and documented she was busy for 2-3 hrs a day - that was far from the truth. My own observation was maybe 20 minutes total and just sitting around the room waiting to be taken back to her own room. When they released her, she could not even walk the 50 or so steps they documented she was doing. It will take some work, but you can get her back to her norm.

First have a talk with her about she has to do the work or you cannot take care of her. When she asks for small tasks, tell her she needs to try on her own. Yes, she is weak, so you have to refrain from jumping in to help because it is going slow - allow her to struggle a bit. She will be building strength. If she says she can't hold her water cup, get her smaller cup...use one with lid and straw. One way to avoid the conversation about what she can't do is set the cup down and walk away. Tell her to get out of bed and busy yourself in the closet or something, but don't stand there and watch.

Ask the dr for in home physical/occupational therapy. It will start with several times a week and you can observe what she will do for others -- it's usually more than she will do for you. Even as the visits become less, tell her to do the exercises each day. Have her stand from her chair - hold it as long as she can - and then EASE herself back into chair. AVOID getting a lift chair because those chairs only create more deterioration of the muscles in her legs and her arms. Getting up and down maintains strength.
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I agree that in home PT and OT may help. This way besides the physical she will get occupational whick will help wit ADLs. Call her PCP and ask for an order.

Was Mom in a wheelchair most of the time? Therapy is usually just 1 or/and 2 Xs a day for maybe an hour. The rest they sit. Maybe an aide will walk them up and down a hall occasionally. I swore my Mom would not get therapy again in a rehab if it was just to get her strength back. I would have it done at her AL.

Get her up and walking but don't force it. Remember, Mom is 93.
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Sneaky8 Jul 2020
Yup, OT, PT, nurse should be coming next week. She will need to get more active again to regain her strength. I feel rehab releases them home when they are maybe 50-70% back to baseline.
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I hope your mom is able to gradually regain her strength and abilities but I just want to caution you to prepare yourself for the possibility that she may not return to her former baseline - although my mom's loss of the ability to walk and stand was probably more gradual than I realized it was shortly after a two week respite stay in a nursing home that she was permanently in a wheelchair. At the time I was focused on caring for her daily needs and praying/dreading that she die peacefully in her sleep, I never knew it was possible that people could become so completely helpless and that she could live on that way for years.
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Sneaky8 Jul 2020
That is also my dread. She lives with us and she is healthy, but her legs betray her. I am sure she will get to the point that she is in wheelchair soon and still live a long while after. She already laments that she can’t walk as fast as she could as when she was younger.
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Give her a little time to rebound from her hospitalization/rehab ordeal. Pamper her a wee bit more but not too much.
Insist she does her exercises before that extra pampering. Make her get up to go to the BR and each hour to prevent blood clots.

I understand your concerns but am thinking she just came off a long haul and may need more rest.

Good luck. I hope she bounces back soon!
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Keep up the "encouragement" by leaving things undone, a little out of reach, etc to get her used to doing for herself again (clearly she is able, so perhaps it is learned behavior from being pampered a bit!) Give her some other "duties" to do, as suggested by others, such as folding some laundry, sorting things, etc, so that she feels a sense of accomplishment and being useful! Praise and thanks for anything she does "help" with!

You mentioned PT/OT coming in. Often others have said that their LO was more compliant with aides and PT/OT. Hopefully this will be the case. If possible, watch and learn the techniques used, so you can employ those tricks the rest of the day! If there are exercises to be done, encourage those, even if she only does a little multiple times/day! Perhaps mentioning how pleased the PT/OT person will be to see her tackling these and making improvement would help too! Maybe have some kind of chart or graph tracking improvements would help too - at least it would when reporting to PT/OT at the next visit!

Too often they won't do things WE suggest, but the same suggestions from someone else is like a message from god!

Our mother at 93 was still walking, etc unaided. It wasn't too long after that she insisted she needed one of 'those', pointing to the rollators others were using. I brought the one she had left over from dad, but it took quite a while before she really used it (in her case, at that time, I think it was more like she felt she should use it because others did, not from a real need.)

This went on for several years, but I had seen her walk without it too! Sometime late last year she started getting worked up, insisting she couldn't stand or walk unaided, even with the rollator. Unfortunately she wouldn't work with PT/OT and although early on she *could* still manage (aides would provide minimal support, sometimes just a hand on mom), sitting too much of the day and since then being in a wheelchair has compounded the issues - where it was possible anxiety about being unstable or falling, now it is likely just plain weakness which prevents her from standing or walking.
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Check her drugs.

I cannot count the number of times mom had adverse effects and had to be taken off some of her drugs (it was especially bad when I first came home to take care of her). Check all of her drugs and the side effects they cause (be prepared to be shocked). For me, moms doctor is supportive and because she knows I know natural medicine we talk it out if natural medicine might be better ( which it usually is).

If you can, get a physio therapist to come in and give her a assessment and some suggestions.
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