Snapshots of Dementia: Great Expectations
Don’t have unrealistic expectations of your spouse. I had that advice drilled into me even before my marriage. I learned not to expect Tom, who had been raised in a far different family setting from mine, to do, say, or think things exactly as I did.
I learned not to expect Tom, who was a pastor and spiritual leader, to be the perfect husband and father any more than I could be the perfect wife.
And I learned that neither of us should expect the other to change.
Instead, Tom and I learned, albeit slowly and sometimes painfully, to talk and pray through our differences. Sometimes he changed. Sometimes I changed. More often than not, we both did.
Having an increasingly loose hold on expectations has helped me survive without too many scars before and since our living-with-dementia journey. I say “increasingly loose” because as Tom’s dementia changes him, I must change my expectations too.
I wrote about how he stopped taking care of our lawn a few years before we knew he was LWD. Once I realized he was not going to take care of it (although I had no idea dementia was a factor), I stopped expecting him to do so.
But when we packed up our Florida home, downsized, and moved to South Carolina in November nearly four years ago, it bothered me somewhat that Tom didn’t help at all. He didn’t sort a single item or pack a single box. In fact, his attempt to box up the theology books he sold to an online bookstore became an organizational disaster that brought me hours of extra work. That incident helped lower my expectations. I understood: Tom could no longer pack. And I didn’t want him to.
At that time, since we didn’t have any sort of dementia diagnosis for Tom, I was still operating in a not-so-magical neverland, not knowing what he could and couldn’t do or what I should and shouldn’t expect. After he lost three jobs in a row, I decided he could no longer work. I no longer expected him to do so.
After he had some near-misses with the car, our family decided he could no longer drive. We no longer expected him to do so.
And after both of these changes and more, I decided to move closer to family—whether or not Tom’s doctors ever agreed he had a problem. I no longer expected him to have the wisdom to make such a big decision in a wise, caring way.
All of these decisions shaped our expectations of Tom. But none of us had a real idea how much the expectations would continue to shift as we went along. Here are some of the ways even my recent expectations have changed:
— I don’t expect Tom to remember anything I tell him. Sometimes I’m still caught off guard when he forgets something I’ve said only moments before, but I shift quickly into reality mode. One evening this week, I told him I was going out to the freezer to get something I needed for dinner. When I returned less than a minute later, he was making a peanut butter sandwich for his dinner (which I’ve never asked him to do), surprised that I planned to prepare anything.
— I don’t expect him to remember his personal belongings. Whenever we leave the house, I make sure he has his essentials: walker, sunglasses, reading glasses, Chapstick, and sweater. Any paperwork or other items he needs for appointments, church, and so forth are on my list, not his.
— I don’t expect him to do any household chores. I didn’t have such expectations when we moved here, but for about a year, he occasionally did a task here and there. His physical problems have cancelled most chores, and his cognitive decline has taken the rest. He can still (mostly) make coffee, fix a sandwich, or prepare a bowl of cereal, but he does so less and less. And he hasn’t heated food in the microwave for months.
— I don’t expect him to remember what he’s reading, watching, or listening to. He has read the same two series of books at least once a year for the past few years and watched the same few series of television shows multiple times. These are as fresh and new for him on the fifth time through as the first; he sometimes comments about never having read or seen them before.
— I don’t expect him to interact with me, especially if his attention is elsewhere. If he’s playing a game on his iPad, watching television, or listening to the radio, he cannot usually focus enough to hear and understand me, much less respond to what I’ve said.
— I don’t expect him to express concern or care. This one is more challenging. He does still care about our family, friends, and people he knows. But expressing that care is not always easy or evident. The other day, I had a 24-hour virus and had to spend part of the day in bed. When I told him I was sick, he registered no concern whatsoever; in fact, he didn’t say a word. I tried to take short naps so I could get up to check on him, and the first time I came out of our bedroom, he told me, “I missed you!” I imagine he missed his normal routine, but I’m choosing to believe that, in his own LWD way, he cared about me after all.
— I don’t expect him to keep our grandsons safe. This one hurts too. But we know that although he loves those two little boys and would never intentionally harm them, he’s also unable to take charge of them in any way. He enjoys holding the baby and can still manage that at times, but one of our other family members always stays close at hand. When we take Lincoln, age 6, to get frozen yogurt or Chick-fil-A, he helps me keep Grandpa safe—not the other way around.
— I don’t expect him to handle finances. After he lost so much money to scammers, I removed major financial responsibilities from Tom’s life. Today, he can’t manage even a child’s protected debit card, much less a credit card or cash. The only time I give him a small amount of cash is for a haircut or the rare times he goes out to eat without me. Even then, I give the funds to the person who’s taking him to eat, not to Tom. He still has a wallet, but he hasn’t carried it for a couple of years after losing one that held his state-issued ID.
— I don’t expect him to make decisions. For a long time, I tried to preserve his dignity by giving him choices. Now, even simple decisions are often more struggle than value, and he doesn’t seem to feel demeaned by my help. At restaurants, I will make a suggestion about a food choice based on something he’s liked in the past. If it’s fast food, I remind him of his typical order. I’ve started doing the same thing with television shows and movies, guiding his choices rather than forcing him to pick between two or three.
— I don’t expect him to get better. This was also a hard one to let go. I somehow held onto the unrealistic belief that he would one day improve. Maybe he could take a more active role at church. Maybe he would get back to practicing his trumpet. Maybe he could do some sort of simple job. I still believe God can heal him should He so choose. But on his own, I don’t expect Tom to improve in any area—and, as Andrew wrote last week, we are watching him gradually “undevelop” as time goes on.
In a marriage or other close relationship, lowered expectations can prevent conflict and increase contentment. In a relationship where one of the people is LWD, it can prevent—but not eliminate—unnecessary disappointment, even tears.
Although I have let go of lots of expectations, there are times when those same expectations still trip me up. In other words, too often, I still learn things the hard way. I’ll write about that in my next post.
Until then, if you or someone you know is LWD, how have your expectations changed over time? What has had to shift in your thinking about the person who is LWD and their capabilities? And what expectations about yourself may have shifted as well? Our story matters, and so does yours.
