So…it has come up in my musings before that my dad has dementia. It is vascular dementia, which means it is not all about forgetting (though he does forget some) but more about changes in personality, judgment, obsessions, etc. For my dad, this has meant more selfishness and more anger when he does not get his way. Think a 6 foot, 200 pound toddler.
He has developed some interesting patterns. He watches “Maverick” first thing *every single morning*, often followed by “The Sound of Music” and then an array of old westerns and romcoms. It is broken up by trips to his computer to watch the video of him making the jump at the 1961 American Athletic championships that landed him on the US team (he was a high jumper – third man in the world to clear 7 feet). And he is obsessed with what he will have for lunch and dinner. As he put it to me at some point, “I can’t do anything I used to love, I can’t drive, I can’t golf, but I can eat, and I love to eat.” First thing he often asked as he looks up from his movie in the morning is, “where are we going to lunch?”
Last fall my mom, who did most of the caregiving, had a series of heath issues topped by a fall where she broke many things. Hospital stays, surgery, and then a very long recovery where she could put no weight on her right leg. They live in a multi-story house, so it also meant hospital bed and potable toilet on the ground level and a lot of care. Most of the care has been provided by a (VERY EXPENSIVE) in house service.
Very nice caregivers shop and cook and care for my folks. My dad loves to go with them on errands – often on the way home from lunch. He becomes fixated on the delicious things he can buy at the store. First it was $25 Julian pies. Then it was candy, a lot of candy, those bags of miniature chocolate bars. He just can’t get enough. First one, then two huge drawers were filled with candy. We had a particularly heartbreaking moment last Christmas when he moved all his candy (two large shopping bags full) up to his room because he was worried his grandchildren and great-grandchildren would find it and might have some. That was not the dad I remember.
As you can imagine (and many of you know), I have spent a lot of time with my folks this year. I just consulted my United app to find that I have flown to San Diego 15 times since this time last year. Each time I go I have a list to take care of. I buzz around, I have an agenda, it is often focused on my mom, and that means managing my dad. No time to drive to that “In and Out”, let’s go to a closer one. No need for him to come to the store, we’ll grab supplies (in an effort to limit his candy buying). He has gotten grouchier and grouchier with me over the year. When I was there in May he resisted my suggestion and I asked him why, saying, “Dad, I am just here to help.” To which he replied, “but you are always bossing me around”.
Hmmm, that made me think. In all those elder care books there is a lot of discussion about how hard it is for them to lose control and their need to hold on to those little things they can control. Also, in the mountains of advice on dealing with dementia patients is the reminder that it is not what you do or say but how they feel about it that matters. In my efforts to buzz in and get things done around my intensely busy schedule, maybe I was impinging on the small amount he still controlled and not paying attention to how he felt.
So, I tried to be better. Where would he like to go to lunch? What would he like at the store? In July when we were there, he had shifted his candy obsession slightly to include Altoids. He had quite a few boxes but asked the caregiver to get more when she was at the store. She reported back that they only had the cinnamon ones (he likes peppermint). He was bummed. When I went out the next day, he wanted extra milk (another fixation) and “if they have them, pick up some Altoids.” Our errand list was long that day and to keep from stopping at one more strip mall I went into a “Smart and Final” to get the milk. As I looked for Altoids, I found that they had them but only in megapacks – 12? 15? I don’t know, a lot, too many. But then I thought. He would love that. So I bought the megapack.
When we came home, we were hauling in our bags and my dad asked if I found any Altoids. I smiled as I pulled out the giant pack and asked if that was enough for him. I got the warmest reaction I had seen in months. A big, surprised smile, a laugh, and a joke back about how long that would last him. It was like a switch had turned. The next morning as we were packing to go, he did not watch “Maverick” right away but came to visit as I readied. We chatted a bit and then he said, “you have a very full life.” I smiled and said, “yeah, dad, I do.” And then he said, “you must be very happy.” It was almost like the before times.
What is interesting is that it even seems to have lasted. I had to pop out for the day yesterday to take my mom to the Dr and as soon as he saw me, my dad took off his move-watching headphones and came over to give me a big hug. How long will you stay? I explained I had to get back that night as I am trying to finish a book manuscript (which, btw, I should be writing instead of this post) and he said, “then you can decide where to go to lunch.” So yeah, I will be buying more giant packs of Altoids – or whatever his new fixation is – and enthusiastically supporting as many of his decisions as I can.