Has anyone heard of voluntary wheelchair sitters?

SusanA43 ~ You have seen the light. I saw it 5 years ago when I was 52 years old. I had been care giving my elderly Mom and in-laws for 3 years at the time and one day when I was home climbing the stairs (I have a 2-story home), I got to the top and was out of breath. I realized then and there that I was not taking care of ME. I had let the pounds creep on, was eating junk too often and neglecting myself (physically and mentally).

The next day I joined Weight Watchers and by hook or by crook, I rarely miss a 1/2 hour weekly meeting (their support is unwavering). As of today, I've lost 30 lbs. and still would like to lose another 20. I had an epiphany that day and said to myself that I cannot take care of my elders if I didn't put me first.

So to all of us caregivers, I plead with you all to take care of your needs first. You deserve it.

Thank you all for your input.Its a relief in a way just to know im not alone. To be clear, my mother uses the walker at home. The wheelchair is for anything beyond the front door. I hurt my back so badly lifting that d### chair into the car. I had an underlying spine problem i didnt know about and made it way worse. I have sciatica so bad i could scream but i keep moving. I wont be like my mother. She has been in nursing home rehab for about 6 weeks. In a weak moment she agreed to move to AL. She will be discharged in three days and i am scrambling to get her AL room ready. Today she had fits and doesn't want to go. It doesn't help that she delayed so long all that is available is a studio in memory care. She will be on a wait list for a one bedroom in the AL wing. Argh. The room is so very ugly and im trying to make it look better. I cant paint the mustard yellow walls or change the brown/teal/orange carpet. There are no curtains no towel hooks and just a wall hung bathroom sink with no place to put down a comb. There is a beautiful new AL facility a few miles away but my mother hated it and said it was cold.this place has nice general areas in the AL wing but the rooms suck. I am desperate for her to stay. I am 63. My husband is 73. We would like a little life. 16 years of taking care of this difficult mother of mine is exhausting.

I'll be completely honest - today was a HUGE wakeup call for me. I am 45, and this past few years of caregiving for Mom plus working in my own business from home have taken a huge toll on my own body. I've gained too much weight, am not moving around as much as I used to, and my own joints are starting to scream at me. Mom is 30 years older than I am, and I see myself hitting 60 and being in the same boat if I don't kick my butt into gear and get back into shape again. It will take time (it didn't happen overnight), but I need to get back on track with eating right and exercising. Otherwise, I'm going to end up right where she is now, and that thought is pretty frightening.

Midkid - not sure if you meant my mom, but she yes, pretty much went completely sedentary at 60. She would occasionally drag herself out of the house, but definitely from age 65 onwards (10 years ago), she had become almost completely housebound by her own choice. She insisted that she was still active and walking if the doctor asked her, but the truth is that she only moved if she absolutely had to. Now, she can't move that much at all, which was a major issue today when I took her out for a ride. I have to call the mobility company that works on our van tomorrow and see what I need to do to set up the back of the van so she can ride in her wheelchair safely from now on - we are out of options otherwise.

My mother, depending on who is with her, will either walk independently (hanging on to the walls), walk with her walker, or be in her wheelchair and asked to be pushed.
This is ALL totally for attention.
She can walk independently, but has had so many falls, she really is supposed to use a walker anywhere outside her small apt (which has grab bars all around). She will try to look "younger" and stronger by walking, but she isn't fooling anyone. The walker is for trips to Bingo and to lunch with friends. The wheelchair is for ALL dr visits and if some member of the family she has not seen in ages comes over. It's really obvious and more than ridiculous. Her apt is small and she is now talking about getting a "Jazzy" chair. I don't know why, it won't go through the doorways.

We all are aware of her manipulation and so it doesn't really work on us.

Your mom quit walking at 60?? I'm going to be 60 in a few months and the thought of being in a wheelchair this young is horrifying!

Thank you all for your answers. I think its a combination of fsctors. You hit the nail on the head with the babying thing. The nighttime caregiver treated him like he was the King of England. The morning caregiver weren't much better. I tried to tell them if you don't use it you lose it. And in my dad's mind he felt like he couldn't do it so he didn't. I understand that at the same time it was very difficult as an 86 road with one leg. The real blame for me lies in Medicare because we've been trying to get his new prosthetic leg since November. He was totally different with his prosthetic leg. In the end I believe I have done my best to care for him and find solutions to all of his mental and health problems but in the end God determines our days on Earth and I am okay with that. God bless you all on your caregiving Journeys. I hope you find the answers you need everyday.

My mother is a perfect example. She suffers from depression, and has for years. She started slowing down around age 60 when her weight started affecting her joints. Then she and Dad stopped cooking and started eating sandwiches or ordering in - all the time. Pizza, burgers, pasta - junk food. So she gained more weight, which made it harder to move around. But if pushed to do so, she could still do it at that point. She just chose not to.

Fast forward 15 years to today: She is 75 and in a nursing home. Why?
1. Her health issues need to be monitored 24/7
2. I can't afford to get the kind of help I need in the home to keep her here
3. She flatly refuses to do anything that is for her own good - like showering or walking or doing any sort of PT to keep her legs under her.

Now that she's in the NH and is no longer considered a PT/rehab patient by Medicare, but a long-term resident, she absolutely refuses to do any sort of therapy. Once the PT department told her they were releasing her from their program and she had the choice to do PT or not, she started refusing to do it. They tried every day to get her to come down to PT, and occasionally she would go, but then just sit there and refuse to do anything. She now walks from her bed to the bathroom with the aid of a walker and a CNA close at hand. And since she has refused to do anything to keep her muscles working for several months now, they are really starting to betray her and are beginning to stop working completely. At this rate, she will be completely bed or wheelchair-bound by the end of this year. And she doesn't seem to care.

So yes, my mother is one that stopped walking (much) around age 60 - mostly because it hurt to walk due to her weight, but also because she just stopped caring. But with her dementia that is now starting to worsen, she insists that she can do things that we know full well she can't. She nearly fell today when I took her out for a ride and she had to make about 5 steps sideways to transfer from the van seat to the wheelchair. She stopped after 2 steps and insisted she couldn't go any further and needed to sit down - I told her she *couldn't* sit down, she was between seats and needed to go one way or the other. She finally did it, but then flopped down on the front edge of the wheelchair seat and darn near tipped it right over. Yet she insists she can make a 600+ mile trip (1200 miles round trip) to her hometown, and that she can come home for the day because she can walk up the wheelchair ramp on her own speed. Her dementia tells her she can. It's my job, unfortunately, to tell her she can't, and I hate that.

Take a pic of them active at pt then show it to them at home. So I know you can...

My husbands grandmother was like that. She did great with therapy, but then she refused to walk. Then sbed refuse to transfer. Shed literally stand up, and then just fall where she needed to go, because she knew we wouldnt let her fall to the ofloor.

So we told her if she didnt help, she didnt go. Shed have a tantrum about it, but my husband and i hurt ourselves too many times carrying her around when she was completely capable of doing it herself.

Recently she refuses to stand in the bathroom, so at the suggestion of OT and PT, we got a Hoyer lift, and she stays in bed, or she goes to the chair. Thats it. We change her in bed, move her side to side (which she has tantrums about) but if, she wont help, then no one is going to hurt themselves catering to her.

I can't fathom a person stopping to walk at age 60! What were the physical limitations?

capearago, another thing I suddenly realized I recognize is that when he comes home from therapy after doing real good only to have a sudden decline, I think what's going on is when he comes home he knows people will baby him, which is exactly why he's acting like this. He knows that when he comes home someone is going to wait on him hand and foot, I actually saw this happen with an elderly friend of mine but I didn't know what was really going on when he went to treatment. All I know is that what I observe is that he was overly dependent on others for everything. I think this is the other reason why his power handicap tools were taken and he was made to use a walker. I don't know what really happened at any of his appointments because I wasn't there, but at home we all had to wise up and stop catering to him so much. I think this may have something to do with why sometimes his in-home healthcare aides didn't show up, this is just something I was thinking because it happened on numerous occasions. He got demanding, and I think he got so demanding and no one wanted to come around let alone help him.
If anything here sounds familiar, you may want to wise up and stop catering. If the person really wants to do something bad enough or if I want something bad enough, let them sit there until they finally feel ready to get up and get and do things for themselves. This is what I had to do with my elderly friend, because it seems like since I was one of the closest ones to him he thought he could use me for his agenda until someone let me in on a little secret. When someone let the cat out of the bag, I had to self-discipline and retrain myself to start pulling back. He wanted things when he wanted it, he was very demanding and impatient. I eventually had to start self-discipline to even stop coming around so much and make myself just a little less available. He actually tried to get me to ruin my own housing arrangement since I'm on section 8 and a rental lease. He wanted me to give up my own life and move in with him into a much smaller apartment. He wanted me to give up everything, move in with him and I know I would've been stuck catering to him and waiting on him hand and foot. He got mad when I didn't fall for it because I think he knew I was onto him. He was also jealous because I can drive and he can't. What really made him mad is that I just had a seasonal motorbike and I never take passengers because it makes the bike too heavy. I know he wanted to be on the road again, so he was actually going to buy a car, put it in my name and make me put it on my own insurance policy. Something about it just didn't sound right, so I didn't fall for it and he got very angry with me. I'm glad I didn't fall for it because he eventually admitted to vandalizing someone's car by busting out a headlight when they either couldn't give him a ride when he asked. He really expected people to jump on demand even at the worst possible times, even when they were having a medical problem at the time. I'm glad he ended up in a nursing home and out of everyone's lives because he was actually ruining peoples lives

capearago, try putting yourself in the position of having only one leg. Try standing on one leg for just a little too long and you'll see what he's going through. Having to navigate with only one leg for long enough will eventually put a strain on the remaining one. It may be that PT made him overdo it to the point that his muscles really did feel very weak and shaky. If he's trying to navigate with just one leg and using crutches, you can only stay up on that leg for so long before problems like arthritis start developing. Another thing to look at it is when people work out. You can have a real good having worked out one day, and feel sore, weak, and shaky in those specific areas the next day, and for a few more days afterward.

Now, if he happens to be using a wheelchair, it may be that he has problems with his upper body strength. If he happens to be developing arthritis and other strain related problems in those overused areas, this may be what's going on. You may also want to have him checked for other health related issues to see why he gets weak and shaky

Though it's very rare that I have ever heard of it, I have actually heard of it. What you can do is actually take the wheelchair away if it's still around the house. Do this while she's at one of her PT appointments. If she refuses to walk, don't baby her and don't pick her up. If she wants something bad enough, let her sit there and get up when she's ready, but definitely don't baby her in this particular type of situation.
However, have you ever had her checked for arthritis? This would definitely be my next step if it hasn't already been taken. It may be that she can't be on her feet very long due to arthritis somewhere in her feet, legs, hips or lower back. If she doesn't have arthritis, check for some other underlying problem like a heart condition or how well she's able to breathe. If you have the right kind of doctor do a full work up physical and check up on her and find nothing wrong, then definitely take away the wheelchair and proceed with my first suggestion. What I would do however, is check into putting her into a nursing home because they'll make her walk. I saw this with one elderly man I used to know before you died. He became overly dependent on his power chair but he became a danger to himself and others because he was legally blind and couldn't drive anymore. If he couldn't drive anymore, he should've never been allowed to have access to a power chair or scooter if he couldn't see well enough to safely operate one. He eventually ended up being forced into a nursing home. Somehow his VA owned power chair was taken away and returned to the VA, and his mobility scooter was sold. At the nursing home, he was put onto a walker and made to walk. Yes, they took him to physical therapy and made him walk. I'm not sure how far he had to walk or how long he had to stand, but they made him do it because I think someone eventually gained guardianship of him

AFIB, not "fit".

I have the same problem. My dad had a fit and went into rehab for the whole month of January. He only has one leg but was doing fabulous with transfers from the toilet and the bed. And had strength. 4 days after he came home he was a different person. All weak and shaky and wanting me to push him in the wheelchair. I know he has Alzheimer's but what is up with that?

she is gone now, but my ex's mother put herself into a wheelchair and then into a nursing home. we both used to take her out, but ex would develop migraines on those days so I ended up carting her ass around. it did get me out, and to restaurants so it wasn't too bad. interestingly enough, my ex's previous wife told him flat out that this woman was going to end up in a wheelchair years before she did. obviously everyone else could see the manipulation save for him. but it is and was a complicated story. he's gone as well.

Perhaps if you told her that she would be going to a facility if she does not resume walking would be a motivator. There are no consequences for her not walking. You do all the work for her.

Rosy, you ned to get her into a lovely facility. Get your life back.

Thanks. I know i wont change her but it is odd. Yeas she had a knee problem in her 50s and wouldn't have surgery for a long time. When she finally did, she refused to do the follow-up therapy. My father treated her like a princess and i had become accustomed to thinking of her as incapable. Over the yearsi have realized that much of her invalidish behaviour is chosen. Of course, with many years of inactivity, she has lost some capacity. Plus being 90. She isnt changing at this point, butI am worn out. I am sure she is depressed. She takes antidepressants. I just was frustrated after watching her in rehab (without her knowledge) doing many things like stair climbing, ball tossing, etc. Then i come in and she sits and whines. I am a slow learner

So she has been playing the "I'm old and helpless, wait on me card" for 30 years?
Wow. Ramiller an cwillie are right of course. At this point her sense of entitlement has won out over any desire to be self-sufficient, and has been too strongly reinforced. You don't say where she is cognitively and it is probably hard to tell... Any little triumph over this sad set-up will be a real accomplishment!

Your mom is seeking attention for some reason. It could be depression, or some other underlying reason. When she is in rehab she gets attention from staff when she does well on her exercises, even praise, when at home she gets attention when she doesnt walk ie forcing you to wait on her. Have you ever watched her from a distance when she doesnt know you are there to see what she does? Never put her in harms way, but if she can do more it would be good for her to move around. However at 90 the behavior is tightly set in so dont expect much of a change.

Your mother stopped walking at age 60? Was there a physical issue at that time? It sounds as though there might be a significant mental health issue here.

If she started to refuse to walk 30 years ago you aren't going to convince her to change now. What you can do is refuse to do things for her you know she has the ability to do on her own, if family hadn't kept enabling this behaviour it would never have continued so long.

Perhaps she is chronically depressed and fearful of doing things on her own.

Get an OT (occupational therapist) to come to the house and find out why she is not walking. Or it could be she has convinced you to wait on her hand and foot.