recliner lift chair as opposed to hospital bed

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Mary Helen Barr

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Does anyone else find that people, (both in the medical profession and not) do NOT understand about ALS!?!? My father spends almost all day and night in his recliner, except when we put him in his wheelchair to take him out to the table to be fed, and also when we put him in the bathroom. The agency that helps out during the week wants to "drop" him, and one reason in that he doesn't use a bed. What difference does that make? We HAVE a hospital bed, and he can't get comfortabe in it. Also, he has more control in the recliner. He can at least raise and lower it. In the hospital bed, the feet won't "lower" so if you want to sit up, your feet are sticking straight out in front of you--NOT comfortable at all. For my father, the bed in definitely not the answer, but most people just don't understand this. It is soooo frustrating. I take care of him every morning by myself, and other than taking time away from other things, I can manage. I just can't find anyone else who is willing to help. The nursing agencies think it wouldn't be possible to have a "patient like that" stay at home. Obviously, they have very little experience with ALS. If I, a non medical professional, can do it, then what is the big deal for them? Anyway, I was just wondering if any of you PALS live day and night in your lift recliner, or is this crazy? Thank you.
 

helper

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I totally understand where you're coming from...my mother in law 'lived' in her reclining wheel chair and when she had to go into the nursing home she refused to use the bed because she couldn't get comfortable and panicked there...we went out and purchased her a lift recliner and got them to move the bed out (they weren't too happy to do it) She would occasionally try the recliner but just felt much more comfortable in her wheel chair. The staff felt it would be easier to have her in a bed (using the lift to use the washroom, or get her dressed)i'm glad my mother in law stuck to her guns and insisted on staying put...it was all about it being easier on the staff...huh? Anyway, they got thier wish, when the end came they wheeled a bed back into the room and put her in it...I say where ever he can get comfortable i'd let him sleep....
Jodie
 

CindyM

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That's why we need more ALS awareness. It is a shame you have to teach the agency about your PAL's needs!

Regarding the push to have a nursing home patient put into a bed, sometimes it's about what they think others will percieve. My Mom is very weak and wants to stay in bed a lot. Thank goodness her hospice nurse was able to advocate for her. Nobody would say it outright, but I know they were thinking what would visitors or the State think if they saw this elderly patient in bed all the time.

You have to fight for what you need if your wishes are not the same as everybody elses. But your request is not alarming, just different! Good luck getting what you need! Cindy
 

sarah

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My husband loves his recliner!

My husband also loves his recliner. He only lays on the couch to nap and to release pressure off his neck from his neck brace. He hates to lay down, but sometimes he gets so tired he has too.
I too, wish that there were more nurses up to date on ALS. I know more than the hospice nurses that come over to check on chris. I am only able to get out of the house for 3 hours one day a week, because there is no one that knows what to do. (not even the nurse). Sometimes I think my two year old daughter knows more than the nurses do.(thats scary!) Chris usually sleeps while the respite care comes over, so she is not doing much. She might give him some water and give him a massage, but thats it.
I wish chris's family would ask to help but they don't. My twin is the only one that has asked to learn the ropes with chris.
Sarah
 

lunarruna

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My husband lives in his recliner...he has been it in for more than a year. We have hospital bed and the nurses, PT and aides who come and help us tried for months to help me get him comfortable in the bed last year...they really pushed that we just need to be a bed "to get the best care" use bedpans, etc. But over time they have come to realize that the recliner is the best place for Shannon and we are able to meet all his needs there. Granted I do most all his care. There are some nice things about hospital beds too, and we wish that we had tried to maybe get a better/more comfortable one for Shannon and we could be using both...but as it is he uses only recliner...he sits on a RoHo air cushion and has memory foam on the back, to keep pressure problems to a miminum.
Our hospice nurse still says that in 'the end' we may need to put him in the bed to take care of him....but we doubt it! We'll see....
Good Luck to you--Beth
 

liz

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Can't the ALS/MDA centers provide consulting and education to the home care agencies?

-Liz
 

CindyM

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Good point, Liz. They must have, at the least, some literature to offer caregivers. If not, I'd try to set up a meeting with the home care folks and someone from my local ALS chapter. It would have to be handled sensitively since nobody likes being told how to do their job, but a PAL needs a good advocate now and then! Cindy
 

Mary Helen Barr

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Thanks for the responses! My father sometimes has coughing fits, and when he's in his recliner, he brings the chair forward so he can sit up a little. In a bed, the legs stay straight out, so that would not be possible, and he would panic. Also, in a bed, he tends to "slump", and it would be extremely difficult for anyone to get him moved back into position. In his recliner, I can squeeze his knees with my knees, and lift him up a little and "pop" him back into position. (The physical therapist showed me that trick). Anyway, it seems that ALS is like nothing else, and every patient also is different, so to just make a blanket statement is not helpful or practical.
 

MtPockets

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I love my lift chair recliner. I spend a lot of time in it because when I lay flat in the bed at night my legs begin to hurt really bad. Since I cannot move them, unless I wake up and move them with my hands or have my wife move them, I think this is why they hurt.

When I'm in the power lift chair I can change positions when it begins to hurt, sit up to eat, and go all the way up to transfer to the wheelchair. This helps my wife a lot since she has a bad back.

So if anyone is considering a lift chair, I'd recommend one that also has the heat pad feature on the back. That helps a lot too.

God Bless
Capt AL
 
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