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Mom and staying in the hospital bed
Good Lord. Yesterday we had Hospice bring in a hospital bed for Mom. We fought it as we liked her to be in her own bed, however; she continued to slide right out of her bed, which is very low to the floor so no falls. Truthfully, she should pretty much be in her bed most of the day as she is totally unable to walk on her own, and we've been lifting and moving her for about 3 weeks now, and we're getting very tired and sore. So, the hospital bed. It's set up perfectly in her room, she can see right out to the kitchen table and see us moving around, her TV is directly across from the bed, and she has 3 big windows on one wall so she can also see outside. But... she wants out of the bed. To go where she knows not, just, up and out. And she keeps trying! Somehow, she slides down to the end and somehow pulls herself up into a sitting position, but is unable to get any further than that, too weak. She calls out for me all the time. She is tired, says it's hard to breathe, her chest hurts, and now our Hospice physician says she is hearing crackles in her lungs, possibly aspiration. I've given her 2 does of morphine so far this morning, for pain and breathing problems, and hoping to help calm her a bit. If anyone has advice, or just share similar stories, please share <3
My MIL used to sleep with both legs flung over the side of the bed. Dr said something to do with that alleviating the pain of PAD. She had 24/7 help, so wasn’t going to fall out. The hospital bed only came in when she was nearly bedbound, and the older women carers couldn’t lift her.
She had both morphine and ativan in the hospice box. She didn’t do well on morphine so we avoided it, but at the last couple of days it was necessary. I think I remember that either one could help her relax enough to actually breathe.
My wife is now in late stage 7, cannot talk, eat, walk or stand without help. She has a hospital bed she sleeps in, but I sleep next to her on the regular bed, and she can reach out during the night to find my hand.
I pick her up out of bed each morning, change her clothes and do bathroom chores, then take her out to "where it's all happening" in the family room using her wheelchair. From there, she gets fed, watches tv, and can see out both to the back yard and the front. She sits in a leather recliner that also rocks and can swivel 360 degrees. She uses her feet to turn the chair around all day to see what's happening around her. We also put her toys around where she can pick them up and play with them if she wants.
I think getting her up every day is more my own thing than her expressed wishes. If I had the disease, I would be very bored staying in one place, so it's my attempt to make her life (such that it is) as non-boring as possible. I also try to get her out of the house a couple of times a week to either have lunch with friends and family, or to get her hair or nails done. This has become much more difficult since she lost the ability to stand. Now that the weather's getting nice, I'll probably do wheelchair walks around the neighborhood a couple of times a week, too.
I agree that it is very, very tiring. When she stopped walking, then stopped standing within a few weeks, I was overwhelmed and exhausted picking her up more than a dozen times a day (she weighs about 130). But as the weeks went by, I got more efficient in lifting her. I now use a weightlifting belt when I lift her. I found that she will turn clockwise, but not counterclockwise when i try to move her, so I set everything up so she moves in the direction most comfortable for her. I found that when helping her in the bathroom, I can hold her up while I'm cleaning her and getting her clothes up, by putting my head in her shirt and holding her that way so my hands are free to pull up her clothes. There are a lot of things one can do to make things easier, but like everything else in caregiving, there's no instruction book.
Just thought I'd give you my experience, so far. I recognize your problems very well, and hope you can find some ways to deal with them without going crazy. I think sitting her in a chair that swivels so she can see what's happening would really help a lot. (And yes, we have pads on the chair so it won't get wet.)
Brenda's favorite toys are:
(Now, if I could only find a home version of the "Magic Table")