I've been spending a lot of time thinking and journaling about what my journey as a dementia spousal caregiver has meant over the last two weeks. It all started almost 9 years ago, in California. If Joe had died on December 18, 2003, it would have been a great shock. He was over 65 already, but I wasn't anywhere near there so we hadn't talked about retirement. He had gone to bed that night looking perfectly normal, but it was the end of normal life for me although neither of us even could imagine that.
He went to work earlier than I did, so I didn't see him that morning at home. I got up after he left although I tended to start work at 6:30, which is very early for an office job. I was already out of the house when the phone rang, in the garage getting into my car. I went into the house to pick the phone up, and it was a hospital in the northern part of Orange County, California, near where he worked. Joe had had an accident and he wanted me to come in to the hospital to be with him.
There was a lot more than a car accident to deal with. Joe's heart stopped and the car was on automatic going 62 miles an hour, on a major California freeway when he passed out. The car hit a concrete embankment and was totaled. When the police found him he had woken up, but was bleeding from the top of his head. He needed stitches on the top of his head. He had 6 broken ribs. But neither of those were the important thing that was happening. Joe's heart stopped at least twice more and possibly as many as five times before they got a temporary pacemaker into him. He had an operation for the permanent one that evening.
For the first year nothing much changed and yet everything changed. I also ended up in the hospital about 3 weeks later. It was a wake up call. We decided we would retire that summer, and we did. We decided to return East to be closer to family. I couldn't come to Pennsylvania to pick out the house, but did pick out a lot of stuff, like which house and which builder and community online. The actual purchase of the house was done by Joe and my daughter and her husband. We came across county in August 2003 and lived in a hotel for 3 weeks in September and moved in at the end of the month.
I began to notice something was wrong in December 2005. I know now that asking the same questions over and over again is a sign of short term memory loss and an early sign of dementia, but I didn't recognize that for sure until a year later. In January 2007, Joe started going to a cognitive therapist, and she essentially made the diagnosis. She told Joe's doctor and sent reports to the neurologist we went to for an official diagnosis. By May 2007 there was no question that Joe was sick with something that could not be cured, or even treated in any reasonable way.
By May 2008 I had to take the car keys away. The slide was faster after that. My world was filled with lasts. Last trip to New York City. Last social event with Joe. Last visit with the girls because pretty soon after he stopped driving I could no longer leave him alone.
The steady slide continued for the next two years. We went everywhere together. We continued to go out to eat every day at lunch until mid-June 2010. That week was the last time I could take him grocery shopping too. Things got very difficult all around and worse and worse until the day he chose to leave the house and never come back. After two hours of trying to keep him in the house he got around me, got the door unlocked and open and took off. By that point I was exhausted, upset to tears, and scared out of my mind.
He got stopped by a neighbor, and the police came quickly. It took the better part of an hour to get him back in the house, but I knew I could not do it anymore. I called the Alzheimer's Association and asked what to do next. There answer was for me to call his doctor and get him transported to a hospital, which I did first thing the next morning. The ER nurse told me it was not safe to bring him home again, and I knew that. Not safe for him, and not safe for me. Three days later on July 1, 2010, Joe was placed in the nursing home where he lived until he died.
They took amazing care of Joe at Manor Care. They didn't do everything exactly as I would have done it, but they did what I was no longer capable of doing. They kept him safe. They kept me safe.
I came home alone after supper on July 1, 2010, and I started grieving. I'd been grieving even earlier, I now realize, as the retirement I expected to have died and I still had to see other, happy couples walking past my house. I grieved for the life I no longer had. I grieved for the marriage and partnership that I'd been living in for almost 50 years. Some of it before Joe was placed, but even more right after.
I'll write more the next time.