I have a bunch of books on dealing with Alzheimer’s. Some I bought, others were given to me. I’ve thumbed through all of them, read parts of most of them, and have many websites bookmarked as well. I’m no expert, but I’m moving out of the denial phase, although I’m still mad as Hell about this disease that’s taking my guy away from me. One of the things I’m getting used to is doing everything, and making most decisions, on my own.
My dad taught me self-sufficiency. This is a guy who gave me a tool box, including a power drill and skill saw, for Christmas after I moved to Indianapolis. I was thrilled. I won’t say I’m as good a carpenter as he was, but I can hold my own with power tools, a caulk gun, and I’m a passable plumber. I love to paint, garden and am pretty good at other fix-it projects. Daddy’s Little Girl wasn’t going to depend on a man for anything, especially since I came of age during the women’s liberation movement. I even changed the oil in my 1967 Camaro convertible.
Thirty years of marriage to a guy who was pretty handy with tools has spoiled me, especially since the first three years of our marriage were spent in Saudi Arabia with servants and maintenance at our beck and call. He was also the computer geek, doing all the setups and maintenance on computers since we bought our first home computer in 1985. Whether it was testosterone, chivalry or male pride (he’s always been very protective of me), Bill took over all the maintenance, and made the decision when outside help needed to be called. Our house in Houston was newly-built, so maintenance wasn’t an issue. I’ve been spoiled for 30 years. Until a few years ago, with two pretty good incomes, we could afford to hire “help” when things needed doing. Life was good.
Fast forward to Denton, Texas, 2013, where we inherited his parents’ house, which I love. As they say, this house has “good bones” but his parents did nothing more than change the light bulbs for 30 years. The floor plan is great, the yard and neighborhood are wonderful, and the pool is nice, even though it’s a giant hole in the ground we throw money into all summer. I have a vision of what this house could look like with the right amount of money and sweat equity. That was before the big D—dementia—came into play.
So now I find myself doing, or making decisions about everything. Prioritizing is tough, and finding things for Bill to do to keep him mentally engaged without constant supervision is a challenge. Everything takes four times as long to do. And we’re still clearing out his dad’s “collections.” I think hoarding is genetic in the Bufkins family.
In the last two weeks a car was parked without a parking break and rolled through the fence into the neighbor’s yard, the garbage disposal is backed up again, the pool pump quit (during freezing weather), the microwave and bedroom TV both quit (and we replaced the TV first—LOL!), an electrical outlet in the living room doesn’t work, and I had to ship my laptop back to the manufacturer for a warranty repair. We still can’t find Bill’s cell phone, which I’m sure is lost somewhere in the house. I’ve spent all afternoon today setting up Bill’s laptop, because when he bought it in March he never really understood how to set it up correctly, and has been unable to use it—and I need it now until mine is back from the shop. I’m still trying to sort out passwords and things, but have learned that I can be the computer geek too.
Oh yeah, I tripped and fell and threw out my back.
The good news is we went to the home of dear friends today for an informal brunch, and Bill was engaged in conversation, and even provided a lot of job search advice to our friend’s brother, who’s in the job hunt. He is brilliant when it comes to giving career advice to someone needing a resume revision, but he can’t tie his shoes without assistance. That’s what’s so frustrating about this disease—there’s no rhyme or reason to the parts of the brain affected, and you never really know which Bill will show up at any given moment. I’m always on edge when we go to someone’s house. Will he do something weird? Will he say something strange? I’m still not over my upbringing by a mother to whom “what other people think” was paramount, but I’m learning to be OK with the idea of him wearing two wristwatches. I’m trying not to let the stress get to me. It was comforting when our hostess said “Bill is doing great today.” I know I need to find more engagement opportunities for him, with or without me.
I’m grateful to have a circle of friends who are aware of the disease, and are very patient with him (and me) about it. I’ve heard of cases where someone gets dementia—or has a head injury—and friends desert the couple. So far, that hasn’t been the case with us, but this is still very new. In fact, people seem to be coming out of the woodwork to help, and I’m not sure how to handle that—I hope I can repay their love and support at some time in the future. I give thanks to God for these people and the help they’ve offered, and pray they don’t get burned out over what will surely be a long road ahead as this disease progresses, along with my response to it.
I miss the guy I married. But I know I can’t have him back. For whatever reason, God has given us this test, and I’m working on accepting it, and doing everything I can to keep our lives on an even keel while trying not to be overcome by anxiety and anger at this hand we’ve been dealt.