Fuel for the Journey

By Lin Mouat

Just Trying To Take Care Of You

Depending on someone else for things I used to do myself is hard.

When we went on a cruise this spring, we ordered a scooter to help me get around. It included a wheel chair. At times, the chair was more convenient than the scooter. I found being in that chair extremely frustrating and humbling.

I wanted to control everything while in that chair. The truth is, I really had no control at all and needed to trust Gary to wheel me around safely.

Being my full time caregiver, Gary is always mindful of the amount of energy I have and tries to keep our excursions within my limits. A daunting task for sure.

It was a sunny, warm day in our winter escape at Palm Desert, CA. At least once a week we took a drive and often we stopped so I could look for rocks. On one day I didn’t want to go home so when Gary started that way, I snapped at him.

“I’m just trying to take care of you the best I can,” Gary told me.

Suddenly, I became aware of how difficult all of this is for him. Both of our lives have been forever changed. And because I’m not always aware of my limitations, especially my cognitive problems, such as being impulsive, it’s a daily challenge for him.

Everyone occasionally experiences an impulse. However, common sense usually dictates whether or not the impulse is acted on. Since my strokes, I’ve lost my ability to apply common sense, among other cognitive deficits.

Gary tells me that he gets very frustrated with me because he’ll get me seated at the dinner table, go to get something, comes back to find that I’m not there. When I think of something, I impulsively pop up and do it.

Many of my foibles are truly funny and we often end up laughing over them. Such as:

Living in the RV last winter I wanted to put our tiny tree on the dash board. The plug in is in an awkward place under the window beside the passenger seat. I had to wedge myself in the foot area to see to plug it in.

Getting in was easy, but, getting out was not. I tried to go feet first and ended up stuck halfway out, unable to completely extricate myself. Gary didn’t have space to pull me up and out, so he ended up dragging me out by my feet. We started laughing, which made the job even harder.

Humor and love have seen us through our share of difficulties and tragedies. I think that the depth of our relationship has also had a big influence over our ability to weather these things.

Yesterday we went to visit my brother where he moved to another city. I plugged the address into the GPS and off we went.

The problem – the address I entered was totally wrong, we ended up on the other side of town, going down an old narrow street. At the end, an arrow directed us to make a sharp left turn. With a 36 foot motor home, towing a vehicle, he barely made it, only to be confronted by a second turn. Gary was furious.

We got there fine but it took a while for Gary to shed his anger. He is keenly aware of my difficulty processing things like addresses, phone numbers, directions, etc. He knows that being upset with me won’t help or change the reality we both live with every day.

Allowing me to do the things I can do, even though I am slow, is another challenge for Gary. My reactions are even slow. In fact, everything I do is done slowly and deliberately – from eating to walking to thinking. Gary has learned to so things more slowly, curbing his normal habit to fast forward: through meals, walking, talking, and more.

A significant percentage of stroke survivors, like me, have multi-infarct dementia. Our caregivers must deal with our difficulties in mobility, self-care, communication, and our cognitive impairment, personality changes, and often depression.

Many caregivers also suffer from depression – not at the acute phase of stroke, but over a period of time as the reality of the survivor’s cognitive impairment becomes clear, and they can get depressed.

My mom had a withered arm from childhood polio but she always found a way to do everything other people did. But she had a frail body and as arthritis attacked her good arm, it took her a long time to accomplish things. She loved to make vegetable soup, cutting up each item, adding it to the stock she created. However, after Dad retired, as she grew weaker, he took over more. When she couldn’t make soup anymore, she seemed to give up and died a couple of years later.

My Dad was trying to take care of her the best he could and that’s what Gary is doing for me.

Gary and I have learned the value of living one day at a time. And to be thankful for what we have. My husband is my hero.

Please share with me your thoughts, questions, and ideas. Contact me at lmouat@strokenetwork.org