Hi all. I've been lurking for over a year, and have managed to get any help I need by searching the forums, but now it's time for me to join and post.

My mom lives with me and my SO. She's 86 years old, stage 6/7 AD (dementia), completely incontinent, can't dress herself, doesn't recognize us, etc... and confined to a wheelchair. (She's been in a wheelchair since before she developed AD - arthritis related).

For several years now, she has been unable to even transfer to/from bed or toilet. This is not a problem, we help her with that.

She spends her day in her wheelchair and has for many, many years (pre AD). She manages to get around her apartment by shuffling with her feet.

Here's the problem. Twice this week I went downstairs (her apt) and found her on the floor. This has happened occasionally over the years, but twice this week so I need to address this.

She slides out of her wheelchair. She doesn't get hurt. It's not like she's trying to walk, she's just sliding down to the floor. In fact, if she does it near her bed, she just reaches for a pillow and pulls down a blanket to cover herself up. She is overweight and has practically no muscle tone - kinda like a bag of Jello, actually.

I've researched restraining her to her wheelchair (lap belt, etc...) and wonder if this would be an option for me. I honestly don't think she would even notice! She's very complacent in all areas of her care. Not nasty (thankfully...) and not agitated at all.

I think if I put the foot rests on her wheelchair, that would prevent her from sliding out, but I think not being able to shuffle about her apartment would put her over the edge mentally. I say this because she does have an electric recliner chair and DOES get agitated feeling "trapped" while she's on it. She needs to shuffle around.

Background - I have a wonderful support network in place. Her visiting PA is great and our plan is administering "comfort measures only". I'm determined to keep my mom at home and at this point, placement is not an option. I may be niave but this is what I'm determined to do. I came to this decision after a brief stay in rehab last year, after a hospitalization stay, that was the most diseasterous experience I have EVER had regarding her care. It was so bad that a head nurse took me aside and told me to "get her out of here, like YESTERDAY!" So I did.

When her PA visits next week, I will be speaking with her about hospice (at least to help with the bathing and incontinence products). Last month we agreed she was not ready for that (she's feeding herself, etc...) but I think it would be a good idea for me to "get in the loop" and at least get an evaluation. Is that even possible?

Anyway, I plan on speaking with her PA next week, but of course this is bothering me NOW, and it's 4AM on a Saturday morning and can't even call her until Monday.

This is such a great group with so much helpful advice, I'm hoping someone here has any suggestions.

HELP!

I'm also keeping my mom at home with me. She is late stage 6 and has just recently needed a wheel chair. I bought the lap belt with the chair. It's just like a seat beat and it works well except that my mom can undo it whenever she wants. I have just told her it is for safety just like in the car and so far she has left it alone.
Years ago I had to fashion a homemade seat belt to keep my grandmother in a chair. I used the front of a vest and sewed four apron type strings onto the back of it. I crisscrossed the stings on the back of the chair to tie her in. I was always very careful not to leave her alone too long secured in her chair because she was a regular Houdini and could wriggle out of anything.
I know that you can buy restraints but have no idea of the cost.
Hope this helps.
northernlights

Keeping Her Home,

I was able to keep my husband home until he passed in Feb. It was something I wanted to do even when he became bedridden even though people told me I couldn't do it. I'm glad that I did.
He did the same thing as your mother. Sliding out of his wheelchair. I used the seat belt but he would slide under it and I was afraid that he would slide under and get caught and maybe choke. Not a real problem because I was always right there with him. What I ended up doing was to fasten the seat belt and then use a long belt and fasten it under the chair and bring it up between his legs and through the seat belt. This prevented him from sliding out of the chair. I also got what they called a lap buddy which is a leather covered foam cushion that goes on their lap and behind the arms of the chair. This was supposed to prevent him from sliding under. It may work for you but he would remove it and while in respite use it to keep the nurses away by swinging it at them.
The belt between the legs worked best for me.

Thanks for the replies (please keep 'em coming...).

I guess I am more concerned about the "perception" of using any kind of constraint.

We have people coming and going all day to see and check up on her. I own a business and am never more than 15 minutes away, leave after 9AM and am home by 2PMish.

As it stands, she is OK to leave alone for a couple of hours at a time (I have her re-evaluated every month and the PA agrees she is of no harm to herself and cannot wander outside of her apartment).

I was paying someone to sit with her while I worked, but all they did was watch her shuffle around and stare off into space, so now I have someone check in on her every couple of hours.

When I was researching wheelchair restraints I read about how you really have to jump through hoops in order to use one in a facility, so I was thinking maybe I was doing the wrong thing by just taking it upon myself to do it at home and that someone would take it the wrong way and cite me for elder abuse (one of my biggest fears after reading about the caregiver charged with manslaughter on this board - scared the cr@p out me!)

Joyce - I love your idea with the belt. I hadn't thought about the possibility of her choking on the belt if she slides down her wheelchair!

I'm so glad I decided to register and post. I wish I would have done it sooner!

Thank you all for being here...

Dear Keeping Her Home: First, welcome to the Caregiver's Forum. I am very glad that you decided to join us. As you can see, there are some wonderful folks here who are able to share their wisdom and experience with you.

You are doing such a wonderful job for your mother. She has the best advocate ever, and is blessed to have such a dear daughter.

When my mother began to slide out of her wheelchair with regularity, she required very close monitoring as she often skirted disaster. As I observed her over time, I found that her trunk muscles were no longer holding her upright. This was found to be secondary to the progress of the damage to her brain. She eventually lost the ability to move her legs and usefully use her arms.

First we propped her with pillows, she still slid. Belts were out of the question because of the choking hazard if she'd slide down to that level. I never tried the belt between the legs, but this is the safety standard for children's high chairs. Perhaps this could be helpful.

You might try Googling the words, "wheelchair supports" and similar words and see what you come up with. There are alot of very creative devices out there, many of them not readily found in neighborhood equipment stores.

In my mother's case, she required a guerney chair. However, your mother likes to push herself about, so that may not be a choice.

Are you able to keep your eyes pretty much on your Mom during the daytime? Is her apartment part of your living quarters or is she totally separate? If she is separate, this arrangement may not be as advantageous as it once was; but that is only a guess based on your writing, you of course are best at assesssing that.

If you do find a good device online or at a durable medical equipment store, let us know. I'm willing to bet there are quite a few people out there with a similar issue.

I wish I had more concrete advice to give, but I am sure you will hear from members who have faced a similar issue.

Take good care, let us know how you are doing. And again, I'm so glad you have joined us and we're getting to know you. I wish you the very best.

Johanna C.

Oh, and northernlights - I completely understand about the Houdini thing!

Sometimes I'll go downstairs to get her up in the morning, and she's completely naked, diaper and pads removed and the hospital bed is stripped right down to the mattress.

I can't IMAGINE how she does it! I'm almost tempted to put a webcam down there to record it. I have a baby monitor down there, and I swear she doesn't make a SOUND!

I've been looking on the internet for the lap buddy and seat belts and apparently it's a federal law that you cannot purchase one without a doctor's prescription?!?!?!

I'm sure her PA would not object, but does that mean I cannot create a makeshift solution legally?

Oops! I was writing as you were posting; sorry. Looks like you have already been doing all that is possible in research.

As for the elder abuse thing; because of the way you are managing things, I don't foresee that is a problem, but then I am not an attorney.

First, you have the PA. Any sort of safety device you use can be shown to the PA and you can gain his/her "approval" after the PA assesses it. Having it "ordered" by the PA could also be helpful. Ensure that the PA documents that in his/her notes.

You also have had aides and others caring for her while you are out. She is, I am willing to bet, clean, well-nourished, well-hydrated, has a clean environment, etc. So, you are covered there.

Maintaining safety of our loved one is something that regulators cannot argue when that safety approach is reasonable and is in itself, safe.

She is not being tied to a bed or locked in a closed room without care or oversight.

One thing I would recommend, is clicking on the Forum here on the Online Community called, "Questions for the Care Consultant."

The consultants are highly educated social workers who are dedicated to Alzheimer's patients are are employed by the national assn.

You can ask specific questions about elder abuse in the use of restraints and you will probably get a good, insightful response. It takes a day or two to hear back, but these social workers can often be extremely helpful.

Talk to you again soon,

Johanna C.

Keepingherhome -- I understand your concern, but please don't freak out about the legalities of using restraints. Those rules are in place to prevent abuses -- NHs simply strapping people into wheelchairs because they are easier to deal with when immobile than pacing the halls, etc. Some NHs have lots of problems, and even the good ones are prone to lawsuits. When people die, relatives want to blame someone. Of course a sleazy attorney is happy to file suit where no suit is warranted. So facilities do a lot of CYA -- Cover Your Ass(ets).

My mom's situation was much like Johanna's -- the trunk muscles were gone. She started sliding out of the wheelchair. The NH put a chair alarm on her -- it clips to the back of her collar with the remainder on the back of her chair; if contact is broken, an alarm sounds to summon help. As her POA, I had to give written permission for something as simple as that!!! We put one on her bed as well -- signed permission, you got it.

We put the footrests on Mom's chair because she would not shuffle, she would drag her feet while being pushed and one would invariably get caught under the chair. I suspect in your mom's case they would not work, because you are assuming she would brace herself against those with her leg muscles to stay in the chair. I doubt that would happen, and it's just another hard object for her to hurt herself on during her descent to the floor.

The possibility of strangling on a lap belt would be greater in a thinner person than in a larger one, I would think. To be indelicate -- forgive me -- I am a woman of size myself! -- the fat belly overhanging the lapbelt would keep her from sliding down that far. Another option I have seen in Mom's NH are a pair of criss-cross shoulder belts. I like those better because it keeps her upright in the chair. So many ladies in the NH just slump forward and fall asleep, their heads dangling near their knees, and of course they lack the strength to raise themselves back up.

When Mom start sliding out of the wheelchair despite pillows and lap belt, we switched to a geri-chair or guerney chair. It had a tray across her lap (considered a restraint -- yes, another signed permission) and it tilted her backwards so her center of gravity acted against the sliding. We snugged her in with pillows as well. But you cannot move yourself in one of these.

And even with that, Mom started sliding out of it as well. She is now bed-bound, but she is in the very last weeks, if not days, of her journey.

I know you are struggling with the idea of restraint -- does it bother you to see a child strapped in a carseat? No, it is for the child's safety. This is the same issue.

The one faint alarm bell that is ringing is this: If a fire were to start while Mom is alone, how would she get out? Can she evacuate the building without help? Does she have to get out of the wheelchair to do so (assuming she can walk some or drag herself by her elbows while crawling)? In that case, the lapbelt or whatever device has to be something she can release herself. (I have fire on the brain -- yesterday heard about a friend who let one of those scented oil burners you plug into the wall go dry -- and it overheated and burst into flame. Serious damage to laundry room.)

Let us know how you work this out. Caregiving is full of thorny problems and tough questions!

Don't worry about the legalities of restraints. The NH where I took my husband for respite, said they could use the lap buddy because it could easily be removed. Problem was the patient could remove it, too. I was able to get them to use a seat belt without any order from a doctor.
One thing they also tried was a rubberized shelf liner in the seat of the chair. It made it harder for him to slide down.
Don't think they can't slide down in a geri chair even with the table because they can.

Wow! So much great information here.

Johanna - I think you're right about my mom's trunk muscles. She's also deformed, and getting worse, as a result of her arthritis. At this point, a gurney chair I don't think is an option, but is something to keep in mind for the future.

We have a split level home. The entire downstairs was "gutted" to make it a completely wheelchair accessible apartment for her. She's always within earshot, and at night I have a baby monitor. She is not being tied to a bed, but I do place the siderails up when she's sleeping.

She is clean, well nourished, hydrated, etc... The one thing that woman can do is EAT!

I googled "wheelchair supports" and there are a few possible options (knee straps, posture vests, torso supports and belts).

Carolina - about the chair alarm... you mean that rather than restrain her, they just let her fall and trip the alarm? I find that odd.

Excellent point about the footrests - it probably WOULD be one more obstacle on the way down.

My thought about the lap belt was as you stated. I would put it under her belly flap. Since she's heavy, and needs diapers with pads inside them at all times, I'm not sure if it would be comfortable for her to have the belt against her groin below the diapers. I'm leaning towards Joyce's idea of a lap belt with a strap between her legs. That way the belt could be loose. If she slides down, with all the padding she has, I don't think the belt between her legs would bother her.

She has practically no muscle tone - as I mentioned, she's like a huge bag of Jello (I guess I'm being indelicate, too, but it's the best way to describe it).

About your concern of a fire - I have that covered (correct me please if you think I'm wrong). My house is hardwired for burglar, fire and CO detection.

In addition to that, my three closest neighbors, one just 30 feet away, are always home are aware of my situation - we're very close and they are wonderful neighbors. If the alarm were to go off, it's loud enough to wake the dead. They know my mom is unable to get out of the house unassisted, know her side door is always unlocked, and will get her out of the house.

I also take measures to prevent a possible fire. I don't use candles, don't leave appliances running while I'm not home, and though my SO thinks I'm nuts, I unplug practically everything in the house before I leave, i.e.- computer, coffee maker, microwave, toaster oven, chargers, etc...

I think I'm not going to do anything about restraining her (except try the rubberized shelf liner - GREAT IDEA, Joyce!) until I speak with her PA.

Thanks to all of you, I can present her with options and see what she thinks.

Hi all,

I thought I'd post an update about my mom.

The PA came on Tuesday and we discussed the problem of mom sliding out of her wheelchair.

She put in an order for PT and a nurse stopped by yesterday to get the ball rolling.

We agreed that she would not be likely able to cooperate with PT, but at least I could work with one on prescribing some type of lap belt (with something going between her legs...).

She also mentioned that as long as my mother is working with a PT, that she would be eligible for an aide to visit three times a week. That would be nice (at least to help with the bathing), but I'm not optimistic that that will happen. But that's okay, we really don't need the help.

In the meantime, I went to the store to find rubberized shelf liner. The didn't have any, but I did buy a rubber bathtub mat. Let me tell you - it's WORKING PERFECTLY!!!

It's the exact width of her wheelchair, and she hasn't slid down in her wheelchair since we've been using it!!!

So... it looks like we'll have some type of long term solution to her sliding down (for if/when the bathmat doesn't work), and after all that is said and done, the doctor will get the ball rolling for hospice or palliative care.

Thank you all for being here, you guys are great!

Keeping her Home
I continued with an aide 5 days a week long after DH stopped all physical therapy. Hospice ask how often I needed one and I told them 5 days a week.
I never thought of the bath mat, but I'm glad it's working out for you. I wouldn't bet on the long term solution because they are very good at coming up with new ways of doing things.

The rubber mat/shelf liner idea is brilliant! I'll mention it the next time I go to see MIL. She's okay, but some of the other patients slide on the coffee shop chairs, as they are smooth painted wood. I sometimes see patients with their families there, and they are always readjusting their LOs in the seats. Heck, I've got a couple rolls of the stuff, I'll just bring it with me.

I can't believe how much I've learned in a few months...thank you everyone.

Joyce... when we get her into Hospice (after this round of therapy), she'll be eligible for a lot more resources.

Though we really don't need aides at this time, helping with the diapers, pads, etc... would be nice.

I was referring to Medicare paying for the aide while she cooperates with physical therapy, which likely isn't going to happen. At least that's how I understood it (did I misunderstand the nurse?)

I guess when it gets to the point that she cannot sit upright in her chair (and I realize it will happen eventually) like you said, they'll come up with a new way of doing things.

I just cannot imagine what will happen to her mentally if she can't shuffle around her appartment with her feet, she panics in her recliner chair.

For now, she fine when she's put to bed, and fine shuffling around.

Crella - the mat wasn't my idea, it was Joyce's!

I've seen padded devices that look like high chair trays used at the NH.

I would be worried that leaving a side door open that could provide entry to a burgler and that your mom could be harmed by an intruder.

What happens if you have an accident and can't get home? What if your neighbors leave? If the electricity goes out and tree falls on the house, will an alarm sound then? Can she call anyone? What if she needs some other assistance?

Do you tell the neighbors everytime you leave?

I don't think leaving a mentally impaired person confined to a wheelchair alone is a good idea...and I don't mean to be critical, but if something did happen -- I think you could be charged with neglect.

quote:

Crella - the mat wasn't my idea, it was Joyce's!

I see that now. I guess I just had another episode of Posting While Punchy! Ha,ha, it's been a lo-o-o-ng week :-D

Always Learning More - to address the issues you raised...

I appreciate your post, as you're making me aware of potential problems that I may have overlooked.

I've seen the padded high chair table you mentioned. I think that would get in her way, as she like to putter around her apartment rearranging things, scribbling on papers, etc... We'll see what the PT says on Tuesday.

I live on a small dead end street with the nosiest (WONDERFUL!) neighbors anybody could possibly want. A car can't come down my street without at least three people investigating. The very last thing I have to worry about is an intruder.

I keep her side door unlocked because she "was" in the habit of locking herself in and keeping all her assistance out.

If I have an accident, I have three ICE number in my cell phone, which is always on my body. If I can't get home (hasn't happened yet, knock on wood) I can arrange for someone to check on her.

There is always a nosy neighbor home (at LEAST one).

About the electricity going out. That actually did happen. Within minutes one of my neighbors called me and went to check on her (she hadn't even noticed, actually). I was home within 10 minutes.

If a tree falls on the house (or anything else happens) the same thing will happen.

My neighbors absolutely know when I come and go - all the time. If I'm not home by my usual time, I get a call.

The one thing I worry about is if I die. We have no relatives except for my totally uninterested daughter who lives in another state. In fact, I'm going to start a new thread about that.

Well I hope that your neighbors are helping out because they truly want to. Who knows if they will get to the point where they don't want to be the back-up plan.

This just reminds me of cases with children left in the car or home alone for a few minutes and then disaster strikes.

What happens if something does happen and your neighbors tell the authorities that you relied on them to provide care from the next house? Unles their eyes are glued to your house 24/7, something could go unnoticed.

I realize you are doing everything you can to create a safe environment, it just raises some questions about a false sense of security in my mind.

To Always learning more:

have you really read what she is doing. I understand your concern but everything you said has been the negative instead of solutions. We are here to help find solutions to problems. Not create more. I will probably be kicked for my response but all of us are dealing with so so much. Lets help, not critize(sp) what we are doing for our loved ones. Lets find positive solutions. Or if there is a concern, have a solution to that also.

Keeping her home, You are doing so so well. I am keeping my wife home and yes, there are concerns. But having her at home is so much better than the alternative in a lot of cases. You are doing what is right for her. Keep on keeping on.

Please let us know how it is going.

Phyllis and Roger

Hmm?...getting interesting.
I leave my 95 yr old mother home alone for up to 2-3hrs. I go to a lot of dr appts at the county hospital, and I have taken her, but I fear her catching something there.
I have taken her grocery shopping, but I have to push a cart and her wheelchair and she just isn't interested and finds grocery stores cold, even bundled up. I have left her in the car with the windows open, but she doesn't understand and might need to use the bathroom.

I know that if/when I leave her home alone, the house could burn...we could have an earthquake...the power might go out. Also she could have a medical emergency. She cannot use a phone; she might not know to leave the house in a fire.

But what is the perfect situation? Very few of us can hire someone to care on a weekly basis. I don't have any other family.

People die and it isn't always the perfect situation. People die alone quite often.
What if I never leave her alone, but I die?

We all have a lot of decisions to make, and we just have to do the best that we can.

Life happens.

Thank you Roger and Anita.