It had nothing to do with Dementia. We all know the functioning part of his mind was gone long before his death...he knew no one and knew only the life that presented itself in every moment. He was helpless....or was he? The spirit is strong and I believe God has a purpose for everyone in every moment they live. Gary lived long enough to know that I was going to be okay and somehow, in the background, he took care of things that needed to be settled. I will never recoup the near $900,000 in losses he incurred through his early FTD-related decisions. But, he stayed long enough to make sure through the sale of our never-lived-in retirement home, tax benefits and insurance that at least I recovered the near $175, 000 spent on his care in the last years. (Yes, people, Dementia care is expensive!)
The picture above was taken about a year and a half before I had to move him to memory care. It was near the beginning of a time when he needed care full time. He could still walk our dog Diva, but not by themselves. Since she was a Beagle, her nose would take them into uncharted territory and his brain, with no filter, would allow all types of unwanted adventures. Now, they are both in heaven and this picture shows what I believe to be their lives now.....on a walk, enjoying life again.
For the caregivers, the family left behind, life has started anew. When his daughter Heather and I were in the daily life of taking care of him, we had no glimpse of the future. Exhaustion was ever-present and there was no normal future in sight. I want to give hope to all caregivers. When your loved one has been restored to their glory and move on, out of the hellish captivity of their brains, everything can start over or anew for you. I will never regret the time I spent as wife and caregiver but it certainly changed me. The first step after his death for me was to breathe and heal my own body and psyche.
Now, a year later, Heather is rebuilding her life and I am well on my way. I relocated away from the city and space where much of the agony occurred. I am in love with a wonderful man who is giving and compassionate when it comes to my remaining grief. I could not be more blessed.
If you are struggling with the horrible effects of FTD and how to take care of a loved one, there are many resources available. I suggest you start with The Association for Frontotemporal Degeneration at https://www.theaftd.org.
The resources available to families and patients is not nearly enough compared to what is needed. But do not give up and reach out. More than anything, have faith that it does end and the Lord is in charge.
