Snapshots of Dementia: Inside Edition

Posted by Marti on June 10, 2022 in Alzheimer's Disease, Dementia | 7 comments

Although I shared a guest post last week, most of the snapshots of dementia so far come from me. Today, I wanted you to hear from someone else—someone who’s been present throughout our dementia journey. That person is my husband of almost 39 years, who has been living with dementia for at least the past five years and probably much longer.  

As Tom’s symptoms progress, he has increasing trouble focusing on more than the simplest information. Always a creative who loved to share ideas and information, he used to say he didn’t think outside the box—he couldn’t even find it. Today, his cognitive box is small—and it shrinks a little more every day. 

I conducted the following “inside edition” interview one evening this week—not the best time for him because of the sundowning I mention in this post. Despite my editorial distaste for ellipses, I’ve used them here to indicate pauses—sometimes long ones. I consider this a true snapshot of dementia: Tom’s perspective in his own words, even when his answer doesn’t match my question. 

MP: So if you were going to tell someone what it’s like to have a young-onset dementia like this, what would you say?  

TP: It is just deceptive. One point, you can be clear-headed. . . and putting footstep after footstep, and then other times, you. . . it’s. . . You know that I. . . I try to. . . try to keep a good. . . attitude and. . . it’s frustrating to me that like, when I have sundowner’s, because it just. . . it’s just like Let’s Make a Deal. You open it and suddenly you’re just there. You can’t change your emotions. . . Your continued encouragement and taking care of me and setting up stuff for me. . . it’s so encouraging. Sometimes you have pulled me off the cliff … and I feel encouraged and loved and cared for. . . . I never in any of my dreams ever thought that this is where I would be now (tears).     

MP: What do you think is the hardest thing for you about having this disease? 

TP: One thing would be. . . there are times when I can walk, and. . . I try. . . I try to keep reading because I don’t want to be locked in on word games and my golf game [both games he plays on his iPad]. . . . There’s not very many times that it happens, but sometimes you are wanting to do something or wanting to go someplace. . . and I’m trying to. . . I always love going someplace with you, which is not to say that I don’t love being with you right now. . . . It’s almost just. . . like one day you wake up and you can walk 10,000 miles, 10,000 steps I mean, and then another day. . . . I would be scared to go any place without my walker.  

MP: You know, so far, we haven’t used your walker. {He’s had a walker for about three weeks but has so far avoided using it.] So are you saying you’d just stay at home rather than use it right now? Is that just more comfortable for you?   

TP: I really don’t know, I just. . . and then I’ve quit practicing [trumpet]. . . so (heavy sighs). [See “The Day the Music Died” for more details.] 

MP: I think I shared this with you before, that one of the dementia experts teaches that people living with dementia are “still themselves, they’re just different now.” Do you agree with that? 

TP: Yes. 

MP: How do you think you’re different now?  

TP: . . . I don’t know; it’s just weird. I could wake up tomorrow morning and put my shoes on and start doing laps in the morning, going up to the top of the hill. . . . And I would be fine and strong. (And I think, just as an aside, I would like to get up and get dressed and go up to the top of the hill first instead of waiting for later, especially when it gets, it’s going to get warmer later.)  

 MP: You just had that sleeping problem the last few days, so we haven’t been doing that [walking early in the morning]. I was asking you about how you’re different. Have you noticed that you’re different, let’s say when you play your [iPad] games or anything like that, or do you think things are pretty much the same?   

TP: I think it’s basically the same. 

MP: I know you get frustrated with your golf game. 

 TP: Well, but like today, I was playing somebody and. . . sometimes I try. . . I try to hurry. . . and I was making very short, very non-accurate shots. And so then, it was a par four, and I hit the third shot of the par four, and I was right there. And then …. and then sunk it. . . . I have. . . I have a love for the game for sure. . . . It’s, it’s a real highlight of. . .  I like to go through the games, the word games, but then I want. . . with my. . . my golf game. . . I enjoy it a lot (tears). 

MP: I know you do. You’ve also had faith for a long time, and you’ve had a relationship with Jesus. Anyone would say what you’re facing now is not an easy thing. How do you think your faith helps you—or does it help you?  

TP: (Heavy sighs, extended pause, tears) … Remember we did that song in church, “When He returns, or calls me home” [This is a line from “In Christ Alone” by Keith Getty] (more sighs, tears, long pause) …  I told David that I wanted him to do my funeral. [David, his longtime best friend, is a pastor in Virginia] 

MP: Poor baby. I knew that, though. You’ve said that for a long time. Are you saying that you have the hope of heaven, even though this is hard? Is that what you mean? 

TP: (Silence) 

MP: If someone were here who had just been given a diagnosis of some type of dementia—I know that you’ve always been a very encouraging person and even now, you work really hard to encourage people in stores, people that we meet, when we go to the nursing home—you work really hard to speak words of encouragement. How would you encourage someone else who has a diagnosis like yours? 

TP: I think I would tell them that nobody. . . nobody knows, and you can’t predict it. . . . (more sighs). 

MP: That’s fine. Is there anything else you want to say? There are usually several hundred people who read this on a regular basis. And a lot of them don’t know you, but a lot of them are people you’ve known. Is there anything that I haven’t asked that you would like to tell them or say about living with dementia? 

TP: (sigh) I don’t think I have anything for that. I would say that if they know anybody who has that [dementia], they should be on the front line of cheerleaders. 

MP: You have a few of those, don’t you? 

TP: I do.