Bill and I are in year 13 of living with Alzheimer’s Disease. Not for the first time, last night I lay in bed, in the dark, with my body turned away from Bill, crying. Trying not to make any noise.
I was crying tears of frustration.
How, I asked the firmament, do I find my own space, follow my own pursuits, live my own dreams while I’m caught in the ever-increasing needs of my love, who is unable to share in any of it or to pursue anything on his own without direct supervision or help?
I was crying tears of great sadness.
Bill is going missing, piece by piece. Eventually he will be gone from my life, unless I die first. What then?
I was crying tears of fear.
Will I be too old to do the things I long to do? Will I be too worn out? Too jaded perhaps? Will I even dream anymore? Maybe I’ll just get sick and die. I don’t want to just exist.
It’s more and more common for people diagnosed with dementias to live for more than 20 years after the diagnosis is made. In body, Bill is a healthy guy. He eats well, exercises, likes to socialize and to get out. He is far from finished with life. I love him more than any other person on earth. I want him to have comfort and dignity all the rest of his life. But I also want to be free. Can I make it to the end?
These thoughts are not pleasant to have. There are no easy answers. Am I selfish? Maybe. Caregivers are told to make sure we take care of ourselves. That we don’t let ourselves burn out. How, I wonder, is that supposed to work?
There is nothing finite about this disease except that, eventually, it does kill those who have it. No planning can ever be adequate because the goal posts move every single day. Sometimes every hour. So there are times I am filled with questions, and fears, and silent tears in the dark.