So fed up my mom getting out of her wheelchair and hurting herself

John2.0.1

My mom has Parkinson's with significant mobility issues and serious dementia. I can not get her to stop getting out of the wheelchair and frequently hurting herself. She does not press her button for help most of the time. She either flops to the floor to crawl around or she hurts herself getting back into the wheelchair. When she's crawling she goes about a foot a minute and frequently can't turn around. She can get stuck in the corner of the room.

Since February we've had 3 trips to the ER and one trip to Urgent Care to check out serious bruises to make sure there were no breaks or serious injuries.

Tonight the MC called that mom was on the floor and got her foot somehow stuck between the frame of the wheelchair and the wheel. They found her stuck on the floor while the aids were doing their hourly rounds. They called the EMTs to get her unstuck. I went over but fortunately they had already gotten her foot out, checked that her foot was OK and had left before I got there.

And those are the serous ones. A dozen other times she's hurt herself getting in or out of the wheel chair but the nurses determined no reason to go get checked because it was just a scrape or small bruise.

I wish Mom could just be forced to use her seat belt. I know I can't and she'd yell and scream at any aid trying to get her to use the seat belt.

There is probably no getting her to stop but thought I'd post and see if there are any ideas.

But we are planning a vacation to Maine (5 hour drive) late August and I'm going. MC will have to deal with it.

dayn2nite2

Any seat belt can’t be used on a patient.  It’s regarded as a restraint.

Is there any way she can use a geri-chair so she’s in a more reclining position and less prone to wanting to get out of the chair?

star26

Have they already tried an alarm on the seat so the staff can at least be alerted asap when she is on the move?

John2.0.1

Her seat will recline more but then she can't move herself in the chair. She pulls herself with her feet. She refuses to learn how to locomote herself with her hands on the wheel.

She is out of her chair all the time when she's in her room and refuses to get in until it's time to go out of her room. I don't know that a alarm would work. She refuses to ask for help getting back in and won't get back in until she is ready. I am sure that and the toilet are how she's hurting herself.

I know she can't be forced to use the seat belt. She just won't. 

King Boo

Falls stink, I remember the phase when there were multiple falls a day.  it eventually stopped as he became more debilitated but it was very stressful wondering if a head trauma was going to happen.  At least there is a limited amount of time they are down for with hourly room checks.

Iris L.

John2.0.1 wrote:

. She refuses to learn 

Advanced PWDs cannot learn new things.

A solution would be a one-on-one caregiver. 

 Iris

John2.0.1

She refused to use her arms to move herself in the chair long before her dementia really set in. She can do it. She won't.

I don't think one on one is financially sustainable as it would be self-pay. She is already paying $10,450 per month.

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abc123

I would speak with a doctor about medicating her. Something may possibly help to keep her in her chair safely. Good luck.

John2.0.1

We had a telehealth call today. She's medicated to the max on her physical mobility issues from her Parkinson's disease. More will increase her hallucinations and paranoia. We mess with the tilt of her wheelchair but it's not about her falling out. It's about her getting out on her own and getting in on her own. She needs an aid there to make sure that she doesn't fall while getting in or out. She isn't the squiggly kind of Parkinson's but the stiff kind.It's how she has gotten her face all bung up with bruises I'm positive.

We got her a new med that will help her anxiety and distrustfullness. She doesn't ask aids for help partly because she doesn't trust them (all too common) so she does it herself and hurts herself. She also doesn't ask for aids because she wants to do it herself. But we, including her doctor, had a talk today that she's hurting herself too much. We told her she needs to ask for help. if she keeps hurting herself the MC is going to say that they can't keep her safe so off to a nursing home which she does not want. She understood in the moment but moments pass.

Just before I left the aid came in to give her her 2:30pm pills. Before I left I asked mom if she was going to want to go to the bathroom. She said as soon as I go. I told her that the aid was right there and it's the perfect time to go to the bathroom because the aid can help. She accepted the help but I am positive that if I just left, she would have gone on her own.

I like the suggestion above to at least try. When the aids make their hourly visits they should just say "time to go to the bathroom" and at least see if they can get her to let her help. But sometimes she just tells them to go away and does it herself.

Someone who can hardly crawl should not be crawling into the bathroom, crawling up on the toilet and then just dropping to the floor. She has to accept help from someone or she is really going to hurt herself.

Marta

I am just thinking outside the box:  perhaps it is time to put Mom in diapers and in a reclining Broda chair. 

My husband did not stop falling until we did this for him.

John2.0.1

Marta wrote:

I am just thinking outside the box:  perhaps it is time to put Mom in diapers and in a reclining Broda chair. 

My husband did not stop falling until we did this for him.

When I visited mom a couple days ago I observed a package of "LivDry" overnight pull-ups in the bathroom. No one has mentioned anything to me and especially not mom. It's another question I have for them. I do consider it a good step. I don't know if mom is still trying to go to the bathroom anyway or if she even knows what they are.

As to the reclining Brode chair, it may come to that. At the moment I believe that it would drive mom berserk as she wants to be on the floor when she is in her room. She likes to putter, sort her stuff, move things around. She does it on the floor. She would hate it and we'd never be able to keep her in it. Unlike many other residents that I have observed, she is absolutely not content to just sit and watch TV. In fact, she has forgotten how to even turn the TV on and use the up/down arrows to change channels. I don't think that she has turned the TV on in months.

It's not that she unintentionally falls out of her current custom made wheel chair. She purposely gets out and falls on the floor. She wants to be on the floor. And when she tries to get back in she loses her balance and falls.

harshedbuzz

I'm sorry John.

This is a tough one that dogs many families. 

With my aunt who was ambulatory until she broke a hip and wrist in a fall, she couldn't recall that she was injured and couldn't walk. Because of the laws around restraints, she needed a sitter over night to redirect before her feet went over the side of the bed. She was in a SNF; during the days and evenings they parked her near the nurses' station and at night family members took turns acting as sitters as there wasn't money to hire a sitter. 

Dad had a lot of dizziness with his dementia and, like your mom, seemed to gravitate to the floor. I think he felt safer closer to the ground. The MCF staff would assume he'd fallen, but I know at least some of the time he'd just chosen to plop down on the floor because that what he did before he went into MC. Still, the staff were required to call and inform us. 

There's a wedge cushion that can be used with a Brodie chair to make getting out too difficult for many PWD. 

The Comfort Co - Saddle Wedge Wheelchair/Seat Cushion|Express Medical Supply (exmed.net)

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abc123

Good ideas Victoria. Try letting her spend her time on a mat with her things. Keep the wheel chair in a closet or in the hall. Don’t put her in the chair unless she is going somewhere. It certainly doesn’t seem like she is going to cooperate with asking for help. Good luck.

John2.0.1

I like the idea also. Another thing to bring up. I hope to have a meeting with the bosses next week if work allows.

harshedbuzz

John2.0.1 wrote:

I like the idea also. Another thing to bring up. I hope to have a meeting with the bosses next week if work allows.

I wonder if staff will go along with this. Many PWD eventually lose the ability to get up from the floor on their own; even if there is no physical disability, they often struggle to coordinate their movements to arise safely. This means staff need to perform a lift which requires two people (and is a risk to theirs backs) and/or a mechanical lift.