Snapshots of Dementia: Ch-ch-ch-ch-Changes

Posted by Marti on March 4, 2023 in Dementia | 4 comments

I have discovered that I am not the only dementia caregiver who doesn’t love the question, “How is ___________(person living with dementia)?” The reason we don’t love it is not because we don’t appreciate the interest. I love having people show concern for Tom. 

My caregiver friends and I have trouble with this question because of only one thing: There’s no quick-and-easy way to answer it—and the person who asks rarely has time for or interest in the long answer. I generally respond with something like, “He’s doing as well as he can, but the disease is progressing.” 

That is true, of course. But what is also true is that behind each of these changes lies one more piece of my broken heart in which I realize that what goes away never returns. 

When I first told the world via Facebook about Tom’s dementia, I called it a thief. I still think that’s one of the most accurate descriptors for this enemy that has taken so much from Tom and from our family. Here are some of the ways it has stolen from us in recent days—in other words, the behind-the-scenes changes when I say he’s doing “as well as he can.” 

GROSS MOTOR SKILLS: He stumbles more nowadays when he walks and has had lots of near-falls. Using the walker for his back/leg problems has helped keep him more stable. But using a walker when you are LWD can be a challenge because you forget to grab it when you get up—and sometimes forget that you use it all. 

FINE MOTOR SKILLS: Tom’s handwriting, never great, has gotten worse, although he can still sign his name when needed. He can still feed himself, but he is getting more and more clumsy, often spilling his coffee or knocking something onto the floor. The tremors in his hands don’t seem to have worsened, but the spilling has definitely increased. 

SPEECH: He still talks, but he sometimes forgets what he intended to say and frequently struggles with how to express it. A conversation with him includes many pauses and sighs. When he does connect his thoughts, he can contribute, but what he says may contain gaps in logic or reality. However, he can still insert a joke or wry comment with surprisingly on-point comedic timing. In a social situation such as a crowded restaurant, he usually shuts down; too much stimulation seems to overwhelm his thinking. 

MEMORY: This is one area that keeps changing, but the changes don’t always make sense. He can still (usually) prepare his own coffee, but sometimes he forgets what he is doing while making it, and later, I find his open mug and creamer on the counter. At other times, he remembers a scheduled event or something someone said that I didn’t expect him to recall. It’s as though his brain is a sieve, and I never know which thoughts it will catch.  

PERSONAL CARE: He can still take his own shower, shave, brush his teeth, and so forth, but I have to remind him about all of these, and he doesn’t handle them as well as in the past. We have grab bars in our shower, and he has used these on occasion to keep from falling. He shaves only about every three or four days, and we have scheduled him for more frequent dental cleanings to make up for what he can no longer do well. He now likes to keep his hair very short, which is good because styling it is too difficult for him. 

EYESIGHT: Tom has always had near-perfect vision and still only needs reading glasses to help with small print. But his field of vision is getting smaller as the dementia progresses. He often misses items that he should be able to see with no trouble, which makes sense, since dementia expert Teepa Snow says vision even in mid-stage dementia is a circle only twelve inches in diameter (In this video, she does a wonderful job of explaining vision changes associated with dementia.) 

EMOTIONS: As his dementia progresses, his emotions are less and less stable. Not long ago, I sat at my computer crying over a difficult family happening, and although he was in the next room, he never asked what was wrong. Yet he often cries over an emotional scene in a television show, something that would never have bothered him in the past.  

SLEEP: Life is harder when your brain doesn’t work well, and Tom requires more sleep than he used to, sometimes taking a nap as early as 8 or 9 a.m. after having nine or ten hours of sleep the night before. He is sleeping better than a few months ago when I wrote about being tired because of his irregular sleeping habits, but I know that this is one of the areas that will keep changing because it already has—multiple times.  

RELATIONSHIPS: Because he can only keep so many people in his memory, he tends to focus, even obsess, on certain ones, although he can still talk in a group setting when he chooses to do so. He will spend extra time and energy talking to one of his special friends. He will also ignore our grandsons, our children, or me if he’s busy with a game on his iPad—without any realization of what he’s doing. As a family, we are both pleased and surprised when he does take time to engage with us—something that never would have been an issue pre-dementia. 

When I look at all these changes, I feel sad, realizing how much I miss the Tom who was. But at the same time, I feel grateful: grateful things have not progressed even more rapidly than they have; grateful we have medication and a good health care team to help with some of the more serious issues; and grateful we have a widespread community of faithful friends and family who are praying for us as we walk this unwelcome road and deal with its ch-ch-ch-ch-changes. 

If you or someone you know is living with dementia, what changes has it brought into your life? How has the disease progressed over time, and what are some of the ways you cope with the ever-changing “normal”?  

Feel free to share your responses in the comments below or on social media. Our story matters—and so does yours.