patience – I Just Have to Say…

Sometimes when you pay attention to something it becomes satisfied and goes away…

The snow blower (and my brother) have had more than enough to do this winter.

I was sitting with Mom this morning in our usual places – looking out the window at our small street. My brother was out blowing away the latest snowfall, even as it continued to fall. Suddenly huge clumps of the stuff came flying through the air and hit the side of the house. But most of it landed in the yard where it has been accumulating all winter. The lilac bush that is only slightly shorter than I am is buried once again.

Yesterday I thought it would be fun to play in the snow for a change. Mom has been pointing out how the snow is so high in the yard that she no longer can see which cars are coming and going. She takes her job of monitoring our neighborhood seriously and the snow was cramping her style. I decided to shave off a foot or two of the bank in front of her window, so she could see better.

The view down the street, with no lilac bush in sight.

I was surprised to be able to walk on top of the huge drifts without sinking in. There have been so many layers of ice in between snowfalls that I was supported wherever I walked. It is so strange to be standing on top of a bush that you know is probably at least four feet tall. I carefully picked chunks of snow from around the tender branches and twigs of the bush until the top of it was exposed.

And then last night’s snowfall…

Our furnace has gone out twice in the last two weeks. Since we have a boiler that heats the cement slab floor, it takes a while for it to cool down (and a while for it to heat up again). It is a beautiful way to have even temperature and nice warm floors. I don’t usually notice something is wrong until it gets down to 67 degrees inside. I pulled out the small space heaters from storage and tried to keep the husband comfortable while my brother called the repair man. After a good cleaning, the boiler was back in operation and a day later all was normal.

A week later it happened again. I couldn’t believe it – so soon after having been fixed. This time I was surprised to hear the repair guy up on the roof, shoveling snow. The exhaust stack, which is about two feet tall, had been buried by a huge drift. Uncovering it fixed the problem. Thank you winter.

So it is still definitely winter in March, as well as January and February, well… and December, and probably November. And possibly April. Yeah.

To live up here in northern Wisconsin, it is best to patiently make peace with winter, and even give it a little attention. As long as we aren’t in danger of freezing, or having to drive on ice, it can be exciting to see how extreme conditions can get.

This has been a very snowy winter, one in which I have been more restricted to being indoors, have skied less, have been less social. On the somewhat brighter side, daylight savings ends next week and we will have longer afternoon light again. I will also have one more full moon this week and one more chance for a moonlight ski. There’s always something to look forward to. (Like winter being over… shhhh, don’t tell it.)

The logical P word for caregiving would have been “patience”, and it’s true that you need that, but there’s not much more to say about it, except that it requires some understanding. So here is another “p” word that we have been dealing with at home that makes patience more important.

Parkinsonism

It’s an umbrella term for a group of neurological symptoms that can have different causes. It’s not the same as Parkinson’s Disease (PD) but people who have PD have most of these symptoms. So do many people with Lewy Body Dementia (LBD), and there are over a dozen other conditions which cause parkinsonisms. The husband has a few of these symptoms and they are the most discouraging for him because they are so visible and he doesn’t see them improving much with his therapy. They are all movement problems. Here they are:

• Altered gait

• Tremor at rest

• Slowness

• Stiffness

• Balance problems

My aunt, who has Parkinson’s Disease, has all these movement problems as well. They are caused by a lack of a neurotransmitter called dopamine. She is able to take a drug called Levodopa to replace the dopamine and it does lessen her difficulties. But drugs like this can increase other undesirable symptoms, like hallucinations, in Lewy Body Dementia, so it hasn’t been recommended for the husband.

These parkinsonisms were some of the earliest symptoms that caught our attention several years ago. I could hear my husband walking around the house long before I could see him. He would shuffle, not lifting his feet, and take tiny steps. We teased him for walking like a pregnant lady.

Another characteristic of his walk is that he doesn’t swing his arms at all. There is a noticeable rigidity. And last week, for the first time, he mentioned that he got walking and was leaning forward and felt that he might not be able to stop easily. These are typical parkinsonian characteristics.

We used to walk often in a nearby mobile home park in Florida. That was before the difficulties began.

Last year, he had several falls and became wary of cracks in sidewalks, door jambs, stairs and any kind of uneven ground. He didn’t like to walk on the lawn, or in the woods anymore. The slightest bump or dip made him feel unbalanced.

Getting in and out of chairs became more difficult. He and my aunt used to have conversations about how the day was going and how many tries before they were able to stand up from their recliners. Now it amazes me how long it takes him to get in and out of vehicles, or even to sit down at the dining table.

And the tremor. It started in his right hand, and commonly it is one side that is affected first. I think it scared him because it started last summer and that was when he was sure stray electricity in the house was causing it. He was aware something was happening but wasn’t sure why. He is able to quiet the tremor with conscious effort or with meaningful movement, but at rest, when he’s not thinking about it specifically, his hand is always shaking. It has begun in his left hand as well.

Parkinsonisms affect how we as caregivers look at our loved one or client. They make them appear older and feeble which is distressing to them and to us. They also make the word “patience” a necessary skill as we learn to wait, to empathize, and to assist when necessary.