Help, My pals wants to get out of bed

hangingon1 · 01-31-2012, 08:45 AM

My Pals is really bugging me about getting out of bed and into a chair. She is a quadriplegic
and I wish she would just accept it. It is really getting me down, because she cries about it. I have a hoyer, and have used it. Please advise me on how to deal with this.

Judith Ann · 01-31-2012, 08:52 AM

Let her sit in the chair if possible...the crying will probably stop.

momap53 · 01-31-2012, 08:59 AM

How awful to be permanently stuck in the bed!

What are your objections to getting her up for a few hours? Is it too difficult for you to do safely on your own? Do you have caregivers that could assist you?

I hope my CALS will still get me out of bed when I'm no longer able to do it myself. I hope they'll park me in the big recliner and prop me up with pillows and give me a change of scenery. I hope they'll turn the chair enough so that I can watch the squirrels play in the trees outside the window and watch the garden as it changes.

lms9258 · 01-31-2012, 10:59 AM

I know how difficult it is to move a person all by yourself. It sounds like you don't have any help. Do you know how to use the hoyer lift? If she would be happy with just one move to the chair, and later one move back to bed, could you handle it? I know sometimes they want to be moved many times, and it is exhausting for one person to repeatedly do this all day. Does she have a comfortable chair that she can be propped in? I'd definately give her this comfort if it can be managed. If you don't mind my asking, how long has she been bed bound? Do you have hospice? If so, you could have a CNA at least help you to get her transfered into the chair. I see you have been taking care of your PALS for about the same amount of time I've been caring for my mom. It's been a long hard time, hasn't it? My mom has recently become bed bound, and I do all care by myself. I do get her up to sit in her recliner or wheelchair each day. My advice would be to do it, if you can. Good luck,

Laura

brooksea · 01-31-2012, 11:01 AM

Laura just said everything I was about to say!

Sounds like you need help from hospice!

Jellycat · 01-31-2012, 11:01 AM

I don't know your situation .... I took the tack that it was a good sign my pals wanted out of bed even when she was completely paralysed, so you'll have to tell me what bugs you. Is it unsafe in some way for her to get up? I don't understand how staying in bed would show she was accepting her situation.

I know it is not easy washing, dressing and transferring a person when they can no longer assist but it is very possible. Your wife hasn't just lost use of her muscles she's also losing control over her choices. You can let her continue to have some control over her life by letting her make her own choices still about being in bed or not, what she wears, what she does etc.

Okie2 · 01-31-2012, 11:14 AM

She sounds like a fighter. Why should she accept it? I am sorry but don't you think she has accepted enough of the losses she has already had? I sure you both have had a struggle with all the crap that comes with this monster. I know caregiving in hard and frustrating but please if you need help get some. I know accepting being completely immobile is going to be one of the hardest things for me to deal with. Sorry if this hurts your feelings, that is not my intent. Hang in there for her,and take care of yourself.

Miss · 01-31-2012, 11:56 AM

I got my 6'1", 250 lb. qualdrapeligic husband up and out of bed every day - by myself. Like several other caregivers, I looked at it as a good sign that he did not want to stay in bed. He was a fighter. In fact, the morning he died, I was bathing him and getting him ready to get up! It will be so much better for your wife if she stays involved in life and amongst the living!

Ms. Pie · 01-31-2012, 02:39 PM

I know a man that is completly locked in except for his eyes and smile. He types with his eyes and speaks that way, his caretakers get him out of the house and in to the sunshine as often as they can. I see him at our ALS support group meetings every month. If you don't have enough help so that your wife can live as normally as possible, call your local ALSA and they can help you out. There's no reason why she should just give up and stay in bed for the time she has left. I know it's hard but please get some help if it's too hard.

trfogey · 01-31-2012, 04:09 PM

Somewhere, I missed the rule that quadriplegics have to stay in bed. In fact, I am functionally quiadriplegic and haven't been in a bed for more than a year and a half -- mainly because my power wheelchair is more adjustable than any hospital bed and I sleep better in the chair.

How is wanting to sit in a chair a sign that she hasn't accepted the fact that she's a quadriplegic?

brooksea · 01-31-2012, 04:22 PM

hangingon1, I just re-read all your posts and I think maybe we have misinterpreted the meaning of your post. Are you saying she cannot accept that she can no longer get out of bed on her own and freely get in and out of a chair? That she is upset that her body will no longer obey her mind? Or, would she rather STAY in a recliner or PWC, instead of bed?

Does she have a PWC or recliner? If not, let's try and help!

I see where you already have in home hospice care, so I would imagine they are perfectly willing to help you get her to a chair. And you did say you are using the lift.

Please let us know, if you need a chair for her!

Ms. Pie · 01-31-2012, 04:36 PM

Oh, Maybe that's it. Thanks C.J.

kiwisally · 01-31-2012, 08:53 PM

Really hopes that C.J. is onto something.

Toto's Dorothy · 01-31-2012, 09:17 PM

I'm a quad and if I were left in bed in a room by myself, well I wouldn't be here to today. Looking at the same 4 walls. Praying when the door opens, its a neighbor or friend coming to visit you. Her ability to move may be over, but her ability to "feel" is not.

Katie C · 01-31-2012, 09:41 PM

I agree maybe CJ is on to something... I hope so! Because the answer to your initial post as stated is... if you can't get her out of bed on your own (understandable.. sometimes moving a PALS is quite difficult because they can't "help") then see about finding some help to get her up. Being stuck in one place is going to do bad things to her mental health.