Dealing with MCI continues to be an uncharted journey, not just for me but also for my husband/caregiver and my family. Just when we seem to have established a routine for how we all work together and life seem to be humming along pretty smoothly—things change.
In my experience with MCI, the illness itself ebbs and flows. I have days when I feel like my “old self,” when my baking turns out right and my writing is effortless. Then there are days when I can’t remember much of what I did yesterday without checking my calendar, and find myself having to open cupboard after cupboard to find a utensil or platter. My emotions and temperament can vary as well; some days I feel calm and content, while others I’m anxious and somewhat fragile.
If you’ve been reading my blog, you are aware we are a very open family. We talk, discuss, and share with the intent of understanding, helping and supporting one another. This was perhaps most apparent in our decision, with our adult children’s consent and encouragement, to publish a book about our successes and failures as we learned how to make love without intercourse: Making Love Again: Hope for Couple Facing the Loss of Sexual Intimacy. We couldn’t have been so honest without the children’s understanding and respect for our intent to help others facing a similar loss and to break the stigma of shame associated with sexual dysfunction.
Thus, is has been equally “normal” for the children to weigh in on many of the issues and challenges I/we face in dealing with the variability of dealing with MCI.
Most recently the children have complained that I don’t ask for help as often as I should. A recent example has to do with an upcoming five days when Keith will be out of town and I’ll be alone. During a family gathering the children announced, “One of the grandchildren will drive over every day while Dad is gone.”
“Why?” I asked, aghast.
“In case you need anything…like a ride into town or something.”
My response was curt. “I don’t want one of the kids to come here every day. If I need something from town, I’ll ask for a ride or for someone to pick it up.”
“But you don’t ask for help,” was the retort.
I stood a little straighter and replied rather shakily, “I have the right to not ask for help, if I don’t want it! And my wishes should be respected.”
As I was to discover, Keith, my daughter and son had all been discussing what I needed while Keith was gone and had unilaterally made the decision my grandson should be with me most of every day.
I felt angry over the assumptions and behavior of my family, and resentful of their making decisions on my behalf without consulting me, and I told them so. “You could have easily asked me if I had any wants before deciding on what was best for me. Did I want to share meals? Did I want to spend a night or two at Beth’s house? Did I want one of the grandchildren to come over? It’s like you think I’m mentally incapable of contributing, and I feel you’ve treated me like a child.”
Their response was to be equally offended. They felt I was rejecting their offers of help and dismissing their concern for my well-being. They felt I was not appreciating their desire to protect me from the possibility of being hurt with no one around to help me or even know I was injured. Most importantly, they wanted to assure me they were acting out of their deep love for me.
After an emotional debate, we eventually arrived at a compromise to resolve the issue that we both felt comfortable with. I would invite a friend over for lunch or dinner each day while Keith is gone. Additionally, I would check in by phone or messenger three times a day to assure Keith and the children I’m fine.
The exchange, however, has left me with some timely insights.
We as a family are on a unique journey of unknown terrain and equally unknown “best” responses; the place we are walking is completely uncharted. We will trip, stumble and fall…but we must keep talking as we search for a new path.
Each “side” has a vastly different way of seeing of most situations, and a point of view that feels clearly valid from their own perspective. What’s more, we may never be able to be completely understood by the other side. For instance, how can I possibly explain how it feels to be losing one’s memory and cognitive abilities?
Still, I don’t want to feel as if I’m discounted—that my thoughts and opinions are no longer valid. And I want to be a part of the decision making for as long as possible.
At the same time, I’m beginning to realize these wants won’t always be possible. There are times, even now, when I may not know what is best for me and will have to give in to my family’s wishes. This future is very, very emotionally difficult for me to admit.
But most important, in order for me to relinquish another aspect of my independence, I must keep in mind my family is acting out of love—and do my best to embrace them.
Note: for more about my experience with giving up independence due to MCI, you may wish to read these two posts: