Twenty years ago, my father started exhibiting cognitive issues. Absent-mindedness; missed lunch dates; inability to remember how to do things he’d known how to do for years; a reluctance to drive far from his home, even though he loved driving and had lived in the area for more than twenty-five years. Each time these things happened it made my heart shrink at the negative possibilities; for both my father, and myself. I didn’t know what to do, so I did nothing.
I went through a divorce, moved in with a friend, and began working on what I wanted my life to be. I spent time with my dad, but I didn’t have the emotional or physical capacity to do anything about the slow progression of what I was afraid to say was dementia. Then my RA flared up again and I didn’t have the capacity to even care for myself, let alone my father. As I gradually recovered, and put my life back together and got a job, I quietly prayed that nothing too bad would happen. Dad seemed to still be doing fine living on his own, but I could see the larger and larger bits of him that were gradually going missing. The word – Alzheimer’s – had not yet been spoken, but I knew it would be.
Finally, in 2003, we could no longer ignore what was happening. My father was picked up twice by the police, wandering alone, cold and disoriented. When we went to his house to assess and discuss the situation, there was no way to ignore the freezing cold, trash, paper, and recycling-filled mess it had become. It became clear that he could no longer live safely on his own; the next chore would be trying to convince him of that fact. Although very good at covering for his growing cognitive gaps (I’ve compared him to an illiterate person faking their way through reading), there was no way to miss what had become of his mind. He repeated himself, asked the same questions, used the same words over and over, and answered questions with evasiveness.
This is when our journey together really began. We found wonderful aides to live with him twenty-four hours a day, seven days a week, but I was still very involved; taking him to the doctor, spending time with him, paying bills and managing his life. I became concerned about how much time and energy I was spending on all of this, since I was still working and trying to have some sort of life of my own. I was also angry at the fact that, although he had been completely missing in action when I was sick – choosing to not care for me at all – it seemed I was expected to care for him.
Despite my anger, I couldn’t stop thinking about how he was changing, and the fact that the next few years could be his last lucid years. I thought that maybe I should move in with him part-time and be a caregiver. He and I had had a difficult relationship over the years, so I couldn’t believe I was thinking about this at all, but I had to listen to the voice inside me that was saying it didn’t want to miss anything: miss his last years, and last thoughts, and any love from him, or any sort of healing of our relationship. So I acted on the voice; I moved in and became his caregiver, and it was good.
After a few years, as his illness progressed and I got more tired, I started to worry that I would miss something else; like a physical symptom, or him turning on the stove or lighting a match or walking out the door– something that could lead to an accident or disaster. I knew I couldn’t take the best care of him anymore, and I knew it was time to do what I had always planned – find a facility. We moved him into a facility; a few years later, we moved him into the locked dementia wing. It was a good facility, but he never stopped missing his own home.
Once he was settled, I cleaned out the house, which took six months and a lot of effort. I had friends spending hours looking carefully through old clothes, books, furniture, folders, filing cabinets, closets, cupboards, and boxes. I was afraid I would miss money, jewelry, important papers, or heirlooms that he had stashed away among the hoarded food and pop bottles, and I didn’t want to throw anything important away! And we did find many treasures, and things that had been missing.
After an aggressive incident at the facility, we learned that he actually suffered from a more specific type of dementia, called Lewy Body, which explained a lot of things that hadn’t fit with an Alzheimer’s diagnoses. He had always been missing some of the classic symptoms, while exhibiting others that didn’t fit. LBD brought anger, aggression, and hallucinations, and made the big facility too overstimulating and busy. It was time to move him into a much smaller facility, and we found the perfect one, as well as the perfect caregiver. He has had amazing care for six years. For the last four years he has been unable to remember me, talk, walk, eat and do other things on his own.
I took that first step to become his caregiver because I didn’t want to miss anything – and I didn’t! Dementia is all about the missing: missing memories, thoughts, abilities, opportunities, relationships, personalities; but also things like catching them walking out the door and vanishing, or missing the signs of an infection or the effect of the wrong drug. It is a loss unlike any other, on many different levels. Going on this journey with him also filled in some things that were missing for me: we had fun together, and healed our relationship, and I grew and became more empowered and confident in myself. I’ve been doing this now for thirteen years! It’s hard to remember a time when I wasn’t doing it. When I lose him, I’ll miss him, but I’ll also lose my role as his caregiver and I wonder…how much I’ll miss it.