An easy choice

Saturday morning we took a caregiver and drove to my parents’ cottage in Wisconsin for the weekend, as a test for future weekends of how G would fare during the trip and at the cottage, and how I liked having the caregiver en route with us.

Pretty good, overall, though when we got home, G said we couldn’t go again – too hard on him. We’ll see – he seemed to enjoy himself most of the time.

The best for me, though, was being with family, and especially getting to be with my dad on Father’s Day. I’m so fortunate that I have healthy, active parents, and I count them among my most precious blessings.

So the list of Three Good Things was easy yesterday. Very easy.

My dad returning to a surprise homecoming celebration at Midway Airport
from the Honor Flight, October 2009

Day three

Today is day three of the adult day program. I found out G had risen to the occasion on Tuesday, despite the very long process to get him out of the house and into the venue. Yesterday he had argued about not going, but finally, reluctantly, made his way to the car. But I learned when I picked him up that once he was there, he refused to participate for most of the time. Fingers crossed that today he is willing to try it again, or at least lets me convince him to try it again, and that he likes it better today.

My three good things for yesterday:

A perfect day for hanging laundry.

I love it when the weather is right and I have the time to hang laundry outside.

The weekly delivery from our CSA.
carrots, turnip tops with a few small turnips, asparagus,
scallions, leaf lettuce, eggs

Flowers from the garden
rose (plant is from my grandmother's garden, circa 1920),
sundrops, catmint, feverfew

It was difficult to choose only three.

Attitude adjustment

I am normally an optimistic person. When I started this blog in November of 2007, it was a tool to help me focus on life's possibilities and small joys instead of allowing myself to be washed away by the challenges and grief of dealing with my husband's disease. For the first year and a half, it worked really well.

The last year or so of our lives, and especially the last two months, have been difficult. A month ago, when we were at a very low point, I heard about a webinar called The Importance of Positive Emotions for Caregivers, by a speaker named Janet Edmonson. I could really have used it at the time I signed up, but it wasn't going to be held until June 14th. Tuesday night I logged on and listened; it was short but effective. Most of the information shared I knew already but had allowed to get buried by life's distractions: that scientific studies show again and again what Norman Vincent Peale knew from his own observations - positive thinking can impact lives in profoundly powerful ways. Priming people with positive words helps them perform better on tests, for instance. Positive thinking improves our cognition and our physical health, increases our longevity, and gives us more resilience.

Ms. Edmonson gave a homework assignment that turned out to be something that I had read about in our local paper a couple of months ago. She called it "What went well today." The newspaper article I read in April called it "Three good things that happened today." Both techniques are to recall at the end of the day three positive things, big or small, that happened that day. The newspaper article said some studies showed that most people who use this technique start to feel better within two to four weeks.

I had started my "Three good things" journal in mid April, during the 12 days G was in rehab. Kept up with it very well until he came home a week later and was so very ill and miserable - then my entries became less frequent and often quite terse. It was an effort to find something positive to write, and I was mentally exhausted.

Life is calmer, more stable at the moment, so now is the time to re-start that habit and to hang on to it. Last night I opened the journal and posted an entry of three good things that happened yesterday:

Made a dinner that G really enjoyed
(roast chicken with herbs, broccoli and kale gratin, mashed potatoes).
It was delicious, if I do say so myself.

The rain came after I had cut the grass the previous night.
Love that timing.

I sold all 4 of my university yearbooks on ebay.
I'm a few dollars richer and a chunk of shelf space lighter.

Something new

10 days in hospital getting meds adjusted, and now G is much, much better - some of his sense of humor has returned, and he can sometimes laugh and find pleasure in things. Better living through chemistry, to paraphrase an old advertisement. The restlessness and misery are just below the surface, though, if the medication starts to wear off.

Before G left the hospital, his doctors recommended he start attending an adult day program, as he had willingly participated in the occupational therapy programs held in the common room for the residents of his unit. Or, as one of the doctors put it, "He didn't say, 'Why are you making me do things with all these crazy old people?'".

A day program is something we have talked about over the years. All the literature strongly recommends "socialization" for people with dementia. (Also for people without dementia, for that matter.) Because those with dementia tend to become isolated, it's even more important to make an effort to be with other people. Joining a group, though, is not something that G has ever been keen on, even before the onset of the disease. He always was very social, but after he retired, didn't want to commit to a volunteer group or anything else that required him to be someplace on a particular day.

As it happens, G had brought up the subject of attending a day program on his own a few months ago, before he got sick. He was lonely being at home while I went to work. And all was ready to go - the interviews done, the paperwork completed - when he got sick and had to be taken to the ER and the whole cycle of illness and recovery began. More than 2 months later, here we are. Ready to begin the day program. Today.

When it came time to actually leave the house, instead of saying, "I don't want to go," G said, "I can't go down the stairs." "My legs don't work." "I have to sit down." "I can't walk." I don't blame him. I wouldn't want to go to a new place, either.

More than an hour of coaching and encouragement later, I left him with kind staff and a group of older adults in need of companionship.

I hate this disease.

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.