“I can tell when your dad is having a bad day the moment I first see his face,” Dad’s home health aide Paula says. “On those days I don’t even try to get him into the shower.”
One of the insidious things about Alzheimer’s is how unpredictable it can be. Just as soon as Mom and Dad have become comfortable with a routine Mom has established in Dad’s care, whether it is how to prepare, cut, and serve his food to him, to how to transfer him into and out of his bed from his wheelchair or walker, something will shift and the practiced method either no longer works or needs adjustment.
When Dad has a bad day he is not as attentive, or responsive, and doesn’t seem as able to follow any kind of request or command, like “take a small step forward with your left leg.” Or “move this leg” as you pat on the left leg. Or “keep going” when he comes to a complete stop in the hallway from the bedroom to the bathroom, his left leg shaking, as he clenches the walker out in front and Mom holds onto him from behind.
When Dad has a bad day I wonder how much longer he will be able to walk even the very short distances he does now. I wonder if it is wise even to let him try. I wonder if he is going to fall in the hallway and we will have to call 911 to get him back in his wheelchair or his bed.
When Dad has a bad day, everyone else is more attentive and responsive. The tension in the house mounts as the uncertainty level rises. How long is he going to be able to walk? What if we can’t get him back in his bed? How long is Mom going to be able to handle this during those times she is here alone with him?
When Dad has a bad day we talk again about getting that hospital bed. One day we remove the computer desk from the bedroom. Then later that day Dad is able to get up and walk with his walker to the bathroom. So we wait. Another day we rearrange the furniture making space for a hospital bed. Then we wait again.
One of the most challenging aspects of Dad’s particular case is that almost from the very beginning, he has been cautious about, even perhaps afraid of, turning around. I first started noticing it when we were still driving him to doctors’ appointments. First we had to get him to turn around to get into the car. Then he had to turn around to sit in a chair in the doctor’s waiting room. Sometimes I would walk right up to him and hold him. “Dance with me,” I’d say. And I would shuffle him back and forth and around until his back was towards the chair and he could sit down.
I don’t understand why he has such a fear of moving that way, but I think it probably has something to do with a loss of spacial orientation. It makes transferring him anywhere very difficult.
Because of this, the method Mom and the home health aides use to get Dad back into bed is have him face the bed (no turning around required) and crawl up onto the bed onto his stomach. This has worked fairly well for quite a while. But if we get a hospital bed, they will have to find a new way to get him into the bed. The advantages of a hospital bed (he can sit in a reclined position and watch T.V., Mom can raise the bed if she needs to care for him in some way or change his clothes) go away if he is lying in the bed on his stomach.
I like the idea of a hospital bed. I think it will help Mom in caring for Dad. I think it will give her options if Dad is having a bad day. But I also understand there will be a hurdle to overcome in making it work.
Nothing is easy with Alzheimer’s.
Especially when Dad is having a bad day.