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Old 11-07-2011, 09:46 AM   #1
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Wheelchair

My FIL has recently got a wheelchair via medicare A/B. He is a tall guy so his legs tend to go up, and his lap is not flat. He does not know how to use his feet on the ground either. So it seems the chair does not fit his need in terms of the feet. The residential care director said he does not use the wheelchair a lot and only a therapist can recommend the customized chair through medicare and it is expensive... It sounds like the director does not bother with this. I think it is wrong. The chair does not fit my FIL's legs.
I saw many regular wheelchairs that are OK for his legs so I don't know why the one he bought is too high for his legs!!
My FIL uses the chair every evening so it is quite long in my opinion!

I am thinking we will ask the doctor to prescribe the therapy to find out how they can make him move properly even though he cannot walk anymore. Then we may ask the therapy for a better chair.

Does anyone have this issue?

Thanks,
Nina

Last edited by ninamarc; 11-07-2011 at 12:24 PM.

 
Old 11-07-2011, 11:58 AM   #2
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Re: Wheelchair

Anyone that consistently uses a wheel chair should have one that is right for them. The best way to do this is to ask for a PT assessment and let them make the selection. Yes they do come in different sizes, styles, and with different features. But.... most are also adjustable.

If you look at the long metal tubes of the leg rest, near the knee pads, there should be a push button. It is one tube inserted into another with a button and some holes at different lengths. If you push, it will allow you to lengthen or shorten the leg rest. Even though Dad was over 6 ft, by extending the leg rest as far out as they would go, a regular wheelchair was rather comfortable for him. There was a very slight leg elevation but that prevented the back of his legs from resting on the chair and restricting the circulation to his legs.

Most dementia patients will not understand how to use their feet to push themselves along effectively. That is something that has to be learned... and we know they don't learn. I don't like the legs just dangling either. I am not sure why the resident care director is so concerned about something that is paid for by medicare?.. or family. But before I did anything related to therapy and a new chair, please have somebody check to see if the leg rest adjustments are correct for his height.

Another tip... the height of any chair can be used to help or hinder a loved one from getting up. if the chair height is slightly higher than the length from the top of the knee to the floor it will be easier for them to get up. If it is lower, it is more difficult for them to get up. This works with any chair. We elevated the chair Dad loved to sit in by 4 inches which makes it much easier for him to get out of and also lessened the fall potential. Later, when he was more unstable we dropped it back 4 inches and he was less likely to put the effort in that was needed to get up. If you drop the chair even lower, it is almost impossible for them to get up.

PT has a long list of tricks they use which I wish were common knowledge. Especially if you are caring for a loved one at home it is worth while to have a PT consult just to teach you how to safely move your loved one. There are simple ways to sit them up without breaking your back and ways to transfer them without falling in the floor. There are also quick tricks on how to completely remake a bed with a resident in the bed. All home caregivers with loved ones that are non ambulatory need a gait belt and to know how to use it. Even though my Dad was over 6 foot and very unsteady, I could handle him easily with his belt...(which served as a gait belt). It's like having a handle on the body So consider a PT consult if you are having trouble moving your loved one!!

Love, deb

 
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Old 11-08-2011, 12:29 AM   #3
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Re: Wheelchair

My husband was just fitted for a "geri-chair" with wheels, having reached the point where he is unable to safely be allowed to walk around the ward anymore. He has a seat belt that he can't figure out. They have ordered two chairs so far, which Medicare has paid for. He appeared uncomfortable in the first one, and broke the tray the first day trying to get out. He is also a tall guy (he was over 6 feet when he was able to stand up straight). The second one is working much better.

Since he is no longer pacing 20 hours a day, the swelling in his legs and ankles has gotten much better. It may not be as hard to keep his weight where it should be, and he's certainly much less of a falling risk. He was tilting badly, and would fall when trying to sit since his depth perception was damaged. He would grab onto other patients or their wheelchairs to try to steady himself.

He has started physical therapy to maintain muscle strength even though he's in a chair most of the day now. PT is trying to help him maintain the ability to walk as long as possible, even if his walking is limited to being assisted into bed or into the geri chair.

I believe that DH is now at the point where he doesn't recognize us as his family. He will still smile when he has visitors, but has stopped most of the gibberish conversation. He needs help to have food and drinks held to his mouth. The last drop-off seems to have been a big one.

This is approximately the 10th year (it runs together) of his diagnosis of early onset Alzheimers. We're at the 2nd anniversary of his admission into the NH.

Last edited by Beginning; 11-08-2011 at 12:33 AM.

 
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Old 11-08-2011, 07:24 AM   #4
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Re: Wheelchair

Beginning, thank you for the update on your DH even if it is not a good one. It is a long hard road and you have been such an amazing care giver and one I look to for inspiration

In many aspects Mom is not far behind your DH. I am glad you mentioned the tilting. Mom does that, though sporadically and not all the time. We looked for another cause but decided it was because she had lost her sense of balance and position. I also picked up on the ankle swelling being better not pacing 20 hours a day. Mom's are also swollen from all her pacing. She is also having difficulty sitting or laying down because of the damaged depth perception. And all the pacing does make it difficult to maintain weight. So far she is still up and about. Part of the reason is that she is only 5 ft, 105 pounds and falls well. I saw her fall the other day and she slides down and rolls. She has a wheel chair tucked in her closet, if it should be needed, but so far we have kept her ambulatory. The big difference lately, if you sat her down before she popped right back up. Now she will sit there for a while, occasionally napping. My hope is that one day she will just stay. Wishful thinking huh? They do not use geri-chairs in Mom's facility and I am not sure the logic. They consider it a restraint Instead they use chair alarms on the wheel chairs which work well if the staff attaches them properly and pay attention.... which doesn't always happen.

10 years is along time. I admire your dedication and stamina. I know it is difficult but you just seem to go on and on. I also thought of you as the Energizer Bunny of the group Hang in there!!

Love, deb

 
Old 11-08-2011, 07:32 AM   #5
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Re: Wheelchair

Beginning, I have to admire you for taking care of your DH for 10 years and that it is the 2nd year in the NH for him. It is hard. I hope the PT helps him a lot.
My FIL has been in the new NH for over 1 year now (16 months.) He likes this new home and fortuantely he does not have the kind of issues that your DH has.

The problem is how come this new NH for my FIL never suggested PT in the first place! What made me mad is they insisted to put him on the walker. Well, in the first 3 months, he was OK with the walker and he could walk slowly. Now he is afraid of the walker big time. He told us Sunday that the whole thing is dangerous (To get up, to touch the walker and to go to the wheelchair - he needed 2 caregivers' help.)
Why do they insist that he uses the walker? He is AFRAID! He would sit in the sofa all the time because he is afraid of falling on the walker. He is so afraid to the point that he not only blamed us for not knowing how to handle it, he asked if we could be arrested???
Such fear makes me think something is wrong. He cannot go on like this.
We have to call the doctor for PT. No one suggested this to us.

The people in the home keep saying he does not use the wheelchair a lot and etc. so no need to pay attention to the chair and etc. Well, he is afraid now, so what should we do?

So we are going to ask the doctor for help.

Hugs,
Nina

Last edited by ninamarc; 11-08-2011 at 07:34 AM.

 
Old 11-08-2011, 08:01 AM   #6
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Re: Wheelchair

Dad had PT several to maintain strength and mobility. It did help. One thing I discovered is that if they do not "advance" they are eliminated from the program. Dad never advanced. So he would get the PT for a while and then it would stop. Then I would find a reason to reinstate it! Oh, Dad fell last night, so let's try it again

Nina, a walker without effective training is dangerous and your FIL has every right to be afraid. If he does not know how to use it properly it should not be used. Dad was evaluated for a walker and failed three times. PT would not give him one if he could not use it properly. They did gave my FIL a walker with proper PT training and he ended up breaking his neck. Falling over a walker is more dangerous than just falling. Yes, you can order PT through his doctor and the facility has to follow doctor's orders That is my ace in the hole many times to get what I think Mom needs. Just because a facility insist on something doesn't necessarily make it right. BTW.... have they checked the leg rest adjustments on his wheel chair?

PT with dementia is not for teaching them how to do something they have lost. It is to use what they have now to the best use possible. It can give them some flexibility and help with strength but it can not retrain the mind. The biggest advantage I have found from PT in this stage is to teach us. They can show us how to more easily transfer and maneuver our loved ones. It can teach us which appliances are best for their abilities. It can teach us our loved ones limitations

Love, deb

 
Old 11-08-2011, 10:44 AM   #7
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Re: Wheelchair

Yes, along with what the others have said...check on the adjustments first. THen check with PT to see what they think. But he cannot be made to stay in a chair that does not fit him!! My mom had three different ones. They changed as her needs changed. Hospice took care of it.
Another suggestion is if he needs more height in the seat, get one of the big square gel cushions. THey are to help prevent pressure sores. The one we had for mom's chair was almost 4 inches tall so it would definitely give him more height.

And beginning...good to hear from you and sad to hear of your DH's progression. It is a long, long road. My mom's journey ended a little over 3 months ago. It does get to the point where you think there is never an end to it...but then it comes.
Not that we wish it to be over...but, yes, we do wish it to be over.
I'm glad he can smile when he sees you. As we so often say, he may not know who exactly everyone is but he does recognize it is someone who loves him. That means a lot. My mom did finally stop walking all together. She was like your DH and Deb's mom...walking...moving...going...but then one day she just stopped. That was it. She never walked again. We did get a little help from her to get her up or down to her bed or toilet or to a chair....but then that stopped too and we had to lift her for each transfer. It sacred her everytime. I hated her being afraid.

BTW...I would sit in on some of mom's PT sessions and I would work with her on my own the same way a few times a week...trying to help keep her muscles strong. Not that it helped much...maybe it just helped me to think I was doing something constructive.

Hang on everybody.

Love, Meg

 
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Old 11-08-2011, 07:10 PM   #8
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Re: Wheelchair

Even though we know that each Alzheimers patient is different, we see many of the same behaviors and progressions too.

The step from being mobile to being bedridden seems to be one of the more consistent patterns, with the same issues relating to loss of depth perception, inability to figure out how to move or use aids like walkers, and an increasing number of falls. The geri-chair is definitely a restraint. Not only is it tilted and low enough that the patient can't maneuver out of it without help, but it also has a seatbelt.

I wish I had a crystal ball. The aides cheerfully tell me that DH could live many more years, since he's only in his 60s. I think they believe that we find this informaton comforting. In fact, we know how humiliated he would be and how much he would hate his current existence. We try to give him pleasures like feeding him a cookie and getting him a soft blanket to tuck around him, but we can't give him dignity.

I didn't mean to hijack your thread, Nina, but I really appreciated hearing from Deb and Meg too. The caregiving seems to go on and on, year after year. I can predict my posting in a few years...."it's been 20 years since DH was diagnosed, and he's now at a stage where......"

 
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Old 11-08-2011, 08:37 PM   #9
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Re: Wheelchair

Let's hope not Beginning For both of us! You were here long before I arrived and I feel that I have been here forever! I understand your feeling when the cheerful care staff says Mom will be around for a long time to come! I have heard the same. They do believe they are being comforting but.... I am like Meg... I don't wish it to be over but I do. Not so much for me but for Mom. She hated this disease and it was her worst nightmare come true. If she was aware she would hate where she is and what has happened to her. All I can do it to make her as content as possible and hang with her until the end... and that is exactly what each of us is doing.

I had to preregister for the Alzheimer's Walk tonight so I stopped by the facility on my way home. Mom was confused and a bit unsteady. While I was talking to the Med Tech she walked off and I found her a few minutes later sprawled in the floor. That is three falls in three weeks. Wonder how long the wheel chair will remain in the closet?

Beginning... if you find that crystal ball check on mine too

Love, deb

 
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Old 11-08-2011, 09:53 PM   #10
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Re: Wheelchair

Poking on in here...I feel like my dad is on this same path with his walking. I cannot believe how rapidly it's deteriorating. I believe a lot has to do with his loss of balance - from his brain. I bought him a cane a couple of years ago and he is FINALLY starting to use it, begrudgingly of course.

It seemed to me that he would do better with a walker, but he would NEVER hear of it. I truly think he would rather fall than use a walker. But, now from what I've read on this thread, it doesn't sound that simple of a transition.

I have a question about the inner workings of doctors and PT. I'm certain I can get PT ordered for my dad, but there is a problem. The PT facility with his doctor's office is way far away. Too far. There's no way I would be able to take him (I also assume it would be more than 1x per week). AND, it's too far for the AL van to take him (out of the radius).

How can I get the doc to get PT to go to his AL? He only has Medicare. What to do, what to do...

Thanks,

gogo

 
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Old 11-08-2011, 10:35 PM   #11
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Re: Wheelchair

Gogo, PT comes to the facility It might not be the one that is connected to your doctor's office but check with your facility and see which PT will come in house. Then ask the doctor to send them a referral. There is actually a PT office in Mom's facility. They have the equipment they need in house. I do nothing because the physical therapist just goes and gets the resident from their room. It is covered by Medicare if it is ordered by the physician

Love, deb

 
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Old 11-09-2011, 05:40 AM   #12
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Re: Wheelchair

20 years!! Oh dear. None of us would last that long! We would have to go into a joint residential place...one where we could sit and commiserate with one another and sip our tea. Then be led away to some activity!!

Beggining, mom died in late July but maybe it was sometime in June that I was talking to one of her hospice aids and I said something about mom not being here by the time Thanksgiving rolled around and she said.."oh, she'll still be here in November". My reply was "WHAT?!?!" then, "NO!!". I have to laugh now at my reaction. I don't think others see the decline the way we see it. We know their every move, their every mood, their every everything like no other. I think we can see the end coming before any one else. We know them. When my mom sat down and never got up again, I knew. When my mom stopped doing anything at all for herself. I knew. Her GP did tell me that once she stopped walking it would be 6 months or so. He was right. Mom sat down never to walk much again in late February or so...she lived til July 29th. In our case, it was 5 months.

Oh Deb...everytime I hear she has fallen it hurts me. I wish she would just sit her little self down!! Until then, just pack her pull ups with pillows!!! Maybe we could get her an adult walker like babies have. You know, that little chair they sit in that rolls all over and turns in circles and has activities attached. HEY! Maybe that could be our big money making invention!

Love, Meg

 
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Old 11-09-2011, 07:50 AM   #13
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Re: Wheelchair

Gogo, my FIL was able to have PT to come to his house in late 2007 when he had trouble walking at that time (The time when he started using a cane for 3 years.) It is called home health service - medicare covers the home health nurse and the PT is able to come to help him for a limited time. He never had to go the PT office. Later on he refused to have more PT.

Now I ask for PT because I just want to know how to move my FIL in the chair and assess if he can still use the walker. Your Dad has just started the cane so it will be a long while. My FIL tried the walker in 2007 but he could not drive it either although he was better at that time. So no way he wanted to use the walker. Now my FIL uses the walker or wheelchair with LOTS of help from the caregivers. He can no longer help himself.

Beginning, don't worry about whose thread it is... It helps for all of us to vent with the same issue. I sure don't think you will take 20 years!

Hugs,
Nina

 
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Old 11-09-2011, 07:53 AM   #14
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Re: Wheelchair

It's already been used Meg. It's called a Merry Walker. It is actually a combination wheel chair attached to a walker walker with a bottom strap to keep them from falling. But they are expensive and classified with the Geri-Chair as a passive restraint.

Now I am going to crawl back up on my soap box......

The sanity has been lost when it comes to "restraint". Because of past abuses the pendulum, at least here, has swung the other way to the same extent. There is a no restraint law in NC. It is a complicated process to approve any restraint... anything that restricts movement... even for those that need it. You have to have a nurse check the restrained person every 15 minutes and it is only done under doctor's orders. Otherwise you can't raise both bed rails even if you are sitting there watching the patient, you can't use geri chairs or merry walkers, you can't even put a seat belt on the wheel chair unless they are in a vehicle. So if Mom wants to get up... there she goes and down she goes. The best we have is a bed/chair alarm that buzzes when they get up.. and some don't even want those used. Yet repeated falls will get you discipline for elder neglect. Oh, I have thought of the Merry Walker... we can put the babies in a walker... but we can't use it for Mom's safety. Yet in the ER setting we can use four point restraints.... Makes no sense whatsoever....

I'm done

Meg, there are days when I wish she would sit and there are days when I am glad she is still moving. I have come to accept the falls for what they are. They are an unpleasant symptom of the decline. It is one of the many phases of this disease. I just pray that her bones stay in tact.

As for others... there is another point that they miss. They may not see the decline we see but what they truly don't see is the pain caused by this disease. Not a physical pain like you have with other diseases but an emotional pain. Unless they have reached the end of a horrible disease with their loved one they can not understand the need for release. They don't get the conflicted emotions. The wish to hold on battling with the wish to let go. I don't want her to go but I want her to go... This also explains the sense of relief and peace that many caregivers have after death. Yes, we miss our loved ones but we can't wish for them to be back.

Love, deb

 
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Old 11-09-2011, 08:08 AM   #15
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Re: Wheelchair

Darn, a day late and a dollar short on another million doillar idea....does the chair have balls and bells and whistles too? But of course if it can't be used what's the point. I am with you on the absurdity of a useful safety tool being thown into the danger pot and thrown out the door. Mom was a danger of falling out of bed but we couldn't use the bed rails...Nooooo...she might get tangled in it and strangle. Yeah, she couldn't even move for goodness sakes!
Common sense...gone on this issue.

Love, Meg

 
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