When you’re unfamiliar with ALS, you tend to think of the need for a wheelchair as a sudden thing: one day you don’t need a wheelchair, and the next day you do. The reality for an ALS patient is far different. Sharon has had a wheelchair for several months, but she has tended to use it just when we leave the house. Inside our home, Sharon has used a four-wheel walker. She moves slowly with the walker — sometimes taking ten minutes to move from one room to the next — but she feels strongly that she ought to try to walk if she’s still capable. It’s almost as if she is savoring every step until the time when she can’t walk again.
In the last week Sharon has had increasing difficulty using the walker. It’s not the walker itself that gives her trouble — it’s getting herself up from a chair to the point where she can use the walker at all.
The problem first started in the mornings. I guess Sharon is so weak and stiff from being in a sleeping position all night that she has trouble building up enough strength to lift herself up. A couple of weeks ago she first asked for the wheelchair in the morning (I say “asked” but it’s more a sort of sign language than actual words — Sharon can’t talk at all). I brought the wheelchair right up to the bed, and I helped her stand up onto our pivot disc. Then I used the pivot disc to rotate her into position in front of the wheelchair, and helped her lower herself into the chair.
Once Sharon was in the chair, she was able to move herself into the bathroom where I had put the walker. Sharon tilted the wheelchair seat up until it was at a height where she could tilt her body forward and lower herself onto straight legs. She held on to the handles of the walker to keep her balance.
Apparently it’s easier for her to lower herself onto straight legs than it is to lift herself using bent legs and then straighten out the legs. I’m not sure if this is due to ALS and weak leg muscles, or whether it’s related to Sharon’s previous medical problems with her knees. Either way, she finds it much easier to stand up when she’s already at a height where no knee motion is required. I imagine she could climb out of bed directly if we had a hospital bed that has a height adjustment. But since we don’t we have to use the bed-to-wheelchair-to-stand-up process.
Problem related to time of day
I mentioned that Sharon has more trouble moving to a standing position when she gets up in the morning. Then during the day she has been able to move back and forth between sitting in a lift chair and using the walker. But the last few evenings she has had difficulty getting up from the lift chair, and a few times I have had to use a patient lift to move her from the lift chair to her wheelchair.
I guess this makes sense: she’s cramped and stiff in the morning, has more energy and flexibility during the day, then gets tired in the evening. I’m not sure how long this cycle will last.
Caregiver frustration
The most frustrating thing for me is when Sharon tries over and over and over (as many as five or six times) to raise herself up from the lift chair. She’ll cycle the lift chair over and over. She moves the chair to its maximum height to help her get up. But when that fails she’ll feel herself slipping off the chair, so she’ll adjust the lift chair back to a medium height to help her move back toward the middle of the chair. The chair whines as it adjusts up, then whines again as it adjusts down. Up. Down. Up. Down. Up. Down.
Sometimes I’ll volunteer my help. Sometimes she’ll ask for my help. But I’m not strong enough to lift her as a dead weight. And if she can’t lock her knees then she’s not able to stand up even with my help — it’s like lifting an adult-size rag doll.
If we can’t get her up, or if her knees won’t lock, then usually at this point I suggest the use of the patient lift. She’s reluctant — she wants to get up by herself — but she recognizes the futility of the experience. Using the patient lift is almost like an embarrassment to her — it’s recognition of her failure to lift herself. But it’s practical, and it’s a foolproof way to move her from the lift chair to her wheelchair.
