Storms of Uncertainty
Loving Someone with Dementia
It is hurricane season again. As a resident of the southeastern United States, we are bracing for any upcoming storms. If you live in the South long enough, you get experience with these kinds of tempests.
Last year, our state got hit by Hurricane Helene. Our town was originally supposed to be on the direct path. They were predicting 70 mph winds and heavy rain. I went to sleep that night not knowing if we would lose trees, roofs, lives ... or if the storm would shift and hit another town.
Helene ended up jagging east instead of west, and we only got normal amounts of rain. But it could have easily hit us instead of eastern Georgia. We could have been the ones without power for two weeks, with hundreds of trees down all over.
That is the thing about unpredictable hurricanes. You know there is a bad storm coming. You just don’t know how bad it will be. Or how much it will it affect you. Or how long it will last.
During these times, I find myself waiting with a sense of anxious doom, wondering if this storm will be the worst one yet.
The worry is fueled in part by my anxiety disorder and in part by my experience with hurricanes. I remember how bad the storms can be.
Then there are the other kinds of storms I have lived through. There was my father-in-law’s five-year terminal illness. We knew he was sick. We knew he would die in the near future. We didn’t know how soon or how much he would suffer, how hard it would be.
We often talk about the five “last Christmases.” Each year of my father-in-law’s illness, we braced for it to be our last Christmas together. Each year, we cried and mourned. And then we would circle back and do it again. It turns out that when the actual last Christmas came, we knew it. My father-in-law had received a cancer diagnosis six months prior, and a second tumor was now growing on the side of his face. There was no doubt that by December, his death was imminent.
Then there were the ten years of walking the slow journey through dementia with my own father. They call it the long goodbye for good reason. Each year, a bit more of him died.
There were so many nights I lay awake, almost smothered by a layer of doom over me. I kept wondering how bad it would get. And how long would it last?
Will he forget my name?
Will he live in a memory care center?
Will I be able to keep up with his needs in addition to my own?
We tried not to repeat the multiple “last Christmas” phenomenon.
However, I definitely pre-grieved. Each holiday, I would take extra pictures of Dad and give him more gifts than any octogenarian needed. But I would also try and enjoy each present moment as much as I could without worrying about the future. But that was hard. The uncertainty of dementia and my fear about my father’s future often led me to make multiple contingency plans, just in case.
When my mind would spiral with fears, I would try and breathe and pray. I would remind myself that Jesus was with me in the storm even as the wind raged around us.
I tried not to let the storm immobilize me with fear of what might happen.
I don’t know if I always succeeded. There were times when both my parents were declining that our lives felt like a house of cards, waiting to be blown apart by one gust of wind. How long could we make it until the house fell? The precariousness of their situation, along with their unwillingness to make changes that would potentially stabilize their future, was nerve-wracking.
At some point, I had to learn to balance future forecasting with living through the storm one moment at a time.
I never would have guessed how Dad’s story would eventually play out. He slowly declined for five years, becoming more and more dependent on Mom and me. After breaking his hip, he and Mom finally accepted the occasional help of a paid caregiver. They managed for five more years with added help until Mom began to decline. We eked out their last year with the aid of hospice, family support, and a lot of prayer.
In the end, Dad only spent a short time in memory care after Mom died. His dementia never progressed to the point that he forgot who I was. With much added help and through many breakdowns, I was able to keep up with Dad’s care until the end. I was utterly exhausted and heartbroken after his death, but I made it.
And I am so grateful for the good moments we had together, even in his last years. I cherish each slice of pizza, each college football game, and each episode of Jeopardy! Because sometimes the worst doesn’t come. At least not yet. And that is a gift worth celebrating.
So, if the storms are circling you and your loved one, prepare. But try not to get so caught in your fears about the future that you forget to enjoy the good moments you still have today. I know it feels like to bottom could fall out at any moment, but sometimes the storm changes and passes you by for a while. Try and enjoy any break in bad weather you can.
If you, too, have a loved one living with dementia, how do you stay in the moment? How do you celebrate the small things?