I am afraid to grow old
A few weeks ago, I wrote that Barry had stopped eating. After talking with a couple of nurses and the hospice people about this new development, I felt strong in my resolve to follow Barry’s lead: if he couldn’t swallow, he was not to be fed. He was down to 131 pounds from nearly 215 pounds when he first arrived at the care center. I felt a little giddy, I have to admit, with the thought that Barry would soon be free of this damn FTD and that I would be free of care center visits day after day!
I was beginning to let myself think about my next move! There are many empty rooms now on Barry’s floor. It seems that winter in Minnesota takes its toll on residents in the care center. This makes me think that if I ever can afford it, I would love to be somewhere warm in the winter. Do I think old age can’t find me if I slip away to Mexico or Florida? I am so afraid now of growing old. This is just one of the many things that FTD has left me with!
Before Barry got sick, I was never afraid to grow old. I wasn’t worried in the least. But now what I see each and every day at his care center makes me want to run for the hills. I want to out-run those bad hips, those stomach issues and, most of all, I want to out-run dementia for as long as I can. And I don’t want to be dependent on a walker, although I see them often out and about.
It’s ironic because as I write this post, my legs are resting up on my dad’s walker as we wait for my mom to have eye surgery! Another worry – what if I lose my eyesight? What if I can’t draw? For the past two weeks, Barry has been very still, mostly sleeping. He eats only about 10 percent of his meals. I contacted Barry’s sister so she could come to say goodbye to him. She flew in for a couple of days and at the end of the visit encouraged him to let go, just as I had.
I visit Barry with excitement, knowing that this nightmare may soon be over! But I have learned that this journey with FTD can be like a never-ending roller coaster ride. You go up and up and just when you think you are reaching the peak, it’s all downhill again. Up and down, up and down you go until you wish you could grab the imaginary roller coaster driver and beg him to let you off. Please, I can’t handle the ride any longer.
But here we go again. Barry is eating a little more and holding on tight as the goes up and up. He has some color back in his cheeks, and I can tell by looking at him that he is afraid to let go quite yet. The empty rooms will fill up again at the care center, and we will keep riding until FTD itself decides this ride is over. And when the ride is finally over, I am going to start running in a new direction for as long as I can — and not look back!