Rollercoaster life

Columbine, daisies, ajuga, anemone foliage

Things change fast at our house.

G is now in hospital getting closely monitored and having all the meds reviewed and adjusted to give him some semblance of a normal life back. This stay is a result of my call to his doctor on Friday, asking if there wasn't something else (I meant medicine) we could try, as so far nothing is helping.

In the space of a couple of hours: my call was returned, questions were asked about whether I would consider inpatient treatment which might start the following week, paperwork was readied, and a 5pm call asking, "Can you come in tomorrow morning?"

There is already some improvement. But he's not happy about being there, and yesterday told me, when I wouldn't agree to take him home with me, not to bother coming back today. Or ever. Which makes me laugh, because it's so absurd. But it would be easier for me, as the hospital is in the city (read: long drive, heavy traffic), the parking garage is large, crowded, and expensive, and it would save me a lot of time if I didn't have to visit, bring laundry back and forth, make soup and deliver, and cut flowers from the garden to transport, all of which, if I didn't visit, I would stop doing.

When I see him today, will he remember he sent me away with "Don't come back" instructions ?

A little sunshine

Rhubarb crisp

Saturday night we had an hour of happiness: G actually smiled and laughed at some things I said and did, and again during a Britcom we watched. I hadn't realized how much his misery has affected me until I saw a spark of his old self. It had been almost six weeks since he had smiled or laughed. Six. Weeks. No idea what made the difference, and he hasn't had another flash of brightness like that since. Still compulsively restless and irritable, sometimes angry, alternating with being asleep. Few times each day is he awake and calm. I've increased the anti-anxiety med twice, per doctor's orders, most recently yesterday afternoon. He's still at a low level of the drug, and today we had a psych nurse pay us a visit. She gave me hope, told me the recovery from the impact of the infection could take a lot more time, but still could happen. She's coming again tomorrow to have a longer discussion about what things we could try. And I learned something else from her: did you know that drinking warmed milk has a calming effect?

We now have caregivers daily, so I can work, walk Oscar, go to exercise class, get groceries, work in the garden, pick rhubarb and make rhubarb crisp for dessert...but when the caregivers aren't here and G is awake, it is very difficult to do anything except continue to respond to his pleas for help.

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.