Saturday, May 7, 2011

What nightmare, this?

While spring is finally unfolding outside our door, our lives have hit a strange and disturbing new phase. The restlessness and misery that G exhibited in rehab did not dissipate as I had expected when he was released from, as he put it, captivity, to return home. A wise friend, also the wife of a dementia patient, suggested that G be tested again for a urinary tract infection to be sure that he had been fully cured from the first one and had not picked up another while in rehab. She was right - he had another UTI. (Why was it not detected in rehab when he was surrounded by health care professionals?)

So then I attributed the restlessness and misery to the second UTI. Now the course of antibiotics for that is done, and there is still no relief for G. We await a second round of tests Monday or Tuesday when the home health nurse will come again to see if this time it's banished.

But we have been warned that it may be a permanent feature in our lives, a new stage in his journey with vascular dementia. Like Sisyphus, we may be doomed to repeat the same actions to no avail: as soon as G is lying down, he must be up. Then stand. Then walk. And then the relentless feeling that he must lay down. But seconds later, he must sit up. Whatever feeling is driving him is also driving him mad. It's not like most of us: feeling like we must get up and stretch after sitting for a while feels good and relieves whatever discomfort we had. Along with G's need to move, each time comes the request, "Will you help me?" He has difficulty moving, so requests my help. Sometimes there are seconds between one move and the next. Sometimes minutes. Occasionally, some blessed relief if he falls asleep. If I am out of his sight, he calls for me, even when he is not feeling the need to move. He was prescribed, two and a half weeks ago, a low dose of an anti-anxiety drug, which comes with its own raft of potential side effects. We are proceeding cautiously to see if this will relieve these symptoms. Monday I will call to report the last 4 days of behavior since the dosage was inched up (no change) and hope that a new, more effective dosage will be ordered.

Prior to G's getting sick a month ago, I could leave him on his own for hours at a time. Now, I can't be out of the house if he's alone - not to walk the dog, hang laundry out on the line, cut the grass, weed the gardens. Even the most routine of tasks inside the house gets interrupted multiple times.

For the last 2 weeks we've had a caregiver come in so I can go to my part time job. Now I'm re-examining my calendar to project all the caregiver hours we'll need in a week so I can have some semblance of a normal routine.

I can escape from the restlessness and misery, at least some hours of each day. G cannot.


  1. Oh, I wish I was there to help. My prayers for you and G are constant.
    Hang in there. Much love to you and G.

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