Right in the midst of dealing with Jim I would sometimes find myself feeling as if I was living in a movie, or a dream, or that it was a test that I wasn’t sure I could pass. Everything seemed surreal. The way he was changing. The lack of support and care. The way friends would disappear on cue. Everything seemed to be following a script I wasn’t privy to reading beforehand. It was as if everyone was in on the scam except for me.
Each person I spoke with about whatever decision and dilemma I was facing seemed to know best. They seemed to have more information, more vision, more opinions than I. Most of the time I was so overwhelmed with not only trying to figure out what was best for Jim, but also what was best for our children, what was best long-term financially, what was best for him now, him later, and for us when he was gone. When he was gone….how could it be there was no cure, no treatment, nothing to give us some small shred of hope?
There never seemed to be a clear-cut answer and I always felt behind the eight ball.
So many times I felt as if the very decision I was contemplating would determine the amount of love and care I had for Jim. As if I had to prove myself over and over again. While he was unable to care for himself or to communicate, I had to worry about not only making sure he knew he was safe but I had to make sure he knew he was loved and missed and cared for. But how to convey to him that I was going to make sure he was all of those things seemed to change daily.
I would cry tears that no one saw. I would sob uncontrollably with no witnesses. Usually, he would be the sounding board, the support system, the shoulder, and yet he was the very reason I needed all of those things.
I still miss his smile. His comfort. His steadiness. Yet, I am finding my own without his presence. A hidden and mixed blessing. All we can do is move forward while trying to honor and leave the past. I miss him immensely, yet all I can do is start living without him. It almost feels as if I am dishonoring the intimacy and love we shared if I smile or laugh or feel happy. How can I, knowing he suffered so? I must not have really loved him. The guilt is real and doesn’t seem to go away.
There are times that I momentarily forget or diminish his illness and I recall our love, our passion and our laughter and closeness from the early years. This makes his absence seem foreign and absurd. Then I envision his final self and I feel guilty for wishing he was still with us.
There is no easy way to be a caregiver for someone with dementia. There is nothing that can make it easy. I hope it can give comfort to know that believe it or not, others have struggled as you have. Decisions are hard. Loneliness is isolating and devastating. Stress from finances is hazardous to health and mental state. And yet, we would all do it again, just for another day, another hour with our loved one.