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I’m not sure the memory is still there. Occasionally I would bring Mom up, and one of the things you do with people who have Alzheimer’s is you cue them, you give them, for instance, when I go to see him I always call him Daddy or Dad, and if I mention [his son], I’ll say, “Your handsome son, [Joseph], is coming.” … I would always tell him who people are, and I would do that with my mother, if I would mention my mother.

This is maybe a year or two after she died because at first it just seemed to upset him, but he would say, “She was a beautiful woman. And he has pictures of her in his room, but I don’t really think he realizes — maybe way down inside he knows. And I know he knows I’m somebody important to him, but I’m not always sure he knows who I am. Probably me more than anyone else. He has glimmers where he’s a little more cognizant. There’s about seven stages to Alzheimer’s, and Dad is probably in stage seven.

 

He looked pretty good to be as old as he is, and he could still smile then. Now he’s heavier because he has lost the ability, mostly, to walk … He has trouble sitting up straight now. He’s very physically active; even after they moved up here, Daddy would still jog down the halls. They would be like, “Don’t do that, you’re going to run into someone!” And now he’s to the point [where] he’s in a wheelchair most of the time. He can’t get around much anymore. Sometimes I show him a picture, and he can’t quite figure out who it is … he’s just gone down some. … You can tell just he’s gone downhill.

 

Then when my mother died, when she was dying, I told Daddy, “If you have anything you want to say to Mom before she dies, because she’s not going to get well, she’s going to die soon, and if there’s anything you want to tell her, then you need to tell her. Oh my gosh — so sweet. But once he did that, once he kind of told her goodbye and she was gone, he does not speak her name, he doesn’t ever mention her. I think he’s forgotten her.

Sorry … it’s really hard when your dad, who has loved your mother since she was 16 — he couldn’t remember her. He barely remembers me now, and I see him every couple days. But my mother’s been gone and when he sees pictures, and I knew it was painful for him, so I would mention her occasionally, but what happened was when I would mention Mom, he thought I was talking about his mother, because their memories – they lose the most recent memories first, so they go back in time.

 

When someone loses their memory, the memories aren’t truly gone. The memories still exist within the brain, but they’re no longer retrievable. It’s as if the “lost” memories are books in a library where your card no longer works. They still exist, but you can’t necessarily retrieve them.

Are there any memories you would like to erase?

I don’t think I would like to erase anything. However, there are things I typically don’t think about or dwell on. During my career, my job forced me to witness many scenes of abuse or injuries that would make most people sick. Those events have helped me have the strength to carry on through adversity …

On the importance of long-term memories

Because nostalgia leans on schemes from movies, books, and songs, it distorts, or washes away the negative feelings you felt in the moment. And, knowing this, over the years I have come to distrust placing too much value on warm feelings I find in memory. Instead, I look to the past to understand origins, to see how my ideations, attitudes, beliefs and behaviors solidified and changed over time. The past gives us clues about the present; the danger is looking to the past to give a sentimental salve for the burn inflicted on us from the present. To look to the past to soothe us is just self-medicating.

Imagine experiencing early signs of memory loss. How would you react?

If I do not repeat something new often, then it does not go from short-term memory to long-term memory. Also, at 61, I forget things and have set up routines to make sure I do things I have to do, like take my medicine correctly. Honestly, it scares the crap out of me that this is happening. If I do not write some things down, like a birthday party for a friend, there is a chance I will forget it. I can tell when I do forget something they are hurt, even though they try and hide it. Since I know I am forgetting things, it makes me wonder what I have forgotten and might not ever get back.

Imagine experiencing early signs of memory loss. How would you react?

Once or twice a week, I forget a title, or a poet, novelist, director or actor’s name in conversation. Frustrated, I usually tell the person I’m talking with, “It will come to me in a second,” and circumvent the lost name by listing the work she or he has done until one of us recollects it. If this happened with larger things — graduation year, a neighbor’s dog, my daughter’s name or important details, etc. — I would feel like I had lost logos, which is the mind’s compass, you know? I would feel marooned on the island of the self.

The residents come to us in their seventies, eighties, nineties, and we have the opportunity to develop a relationship with them for a couple of years, and it’s easier. It’s easier for us to walk in and be able to make the harder decisions and recommend the tough calls to the families. We can take an outside, global perspective to situations, because when you’re a family member and you’re in the thick of it, your emotions are playing a very big part most of the time … but it’s a lot easier sometimes for our clinicians and even our administrative staff to look at a situation and say,Stop the suffering. Stop the suffering. Call hospice. Let them provide comfort and dignityand let the residents be at peace.

If you have a resident who’s at the end stages of dementia, you could continue life prolonging. You could do that … Sometimes families are inside of that because they’re emotionally attached and they don’t want to let go. I can’t imagine doing that [making the decision] with my own parents. I can’t imagine what they’re going through. Sometimes we have to step in and say those things, and it’s easier for us.

 

I think it’s really important to get help. Get help. And do not deal with things on your own. As a caregiver … it takes an extreme toll to be able to take care of your loved one that way, even if it’s not a dignity issue. As the caregiver, you need to care for yourself. I can’t stress that enough — you need to get help. Don’t try to deal with things on your own. I’ve seen spouses deteriorate rapidly because they’re willing to go to the ends of the Earth for their loved one, and they feel like that’s the right way and that’s the right thing to do.

But the person they’re taking care of , they loved them, too, and they don’t want that to happen. That’s not what they want to do. So caregivers need to take care of themselves and get help … believe me, we want business, but we don’t want to take care of the caregiver because now they’re in that situation [of declining health because] they put themselves there.


Usually it’s just kind of in reference to, “Oh, my mind isn’t like it used to be,” when she does refer to it. I don’t think I’ve ever heard her refer to Alzheimer’s specifically, and I don’t know if anyone has even told her specifically if she has Alzheimer’s. I know they were searching for a cure at the beginning, but at this point they haven’t found one. I don’t honestly think there’s a cure to Alzheimer’s at all in any case, but I guess to the extent that it was degenerative for her...

 

She knows that she’s not the way she was before, and she kind of mourns that. But I don’t think it’s a clear connection for her.

 

Her personality is completely different. She’s not consistent in the things she says. Her personality can be harsh sometimes, or other times just listless and sad. She still loves Blue Bloods, though. It’s this TV show she used to always watch with my grandfather, and she watches it all the time at the facility she’s at now, and she’ll watch the same episode just over and over again, but somehow it’s just going back to that sense memory, I guess, associated with TV show.

When she was living at her house, she always cleaned. She loved cleaning and I guess having some sense of control over her surroundings, even when she could barely stand up, because she has kind of an inner ear issue with the water in the brain. She always tried to clean surfaces as best she could…At this point, it’s hard to know where she is because first of all she’s on the other side of the country from me, and I can’t talk to her on the phone anymore, because I can’t understand her verbally. She blurs so much that I can’t understand her at all.

 

At first, I was scared because I didn’t know what it was. I didn’t know the difference between dementia and Alzheimer’s. I didn’t know – I didn’t know anything. Now that I know that the mood swings are normal, that helps. I try to not fear too much about the fact that it runs in the family. Because Alzheimer’s does run in families.

Part of me wonders if the fact that my memory isn’t working as well as it used to, if that’s a sign that I may have Alzheimer’s one day … I go to worst-case scenario mode. At the back of my mind, I have that fear, where I’m like, “I will have Alzheimer’s some day,” especially since I relate to my grandmother so well, even though I didn’t know her that well before she got sick. It makes me rethink how to handle life thinking that that might be something that’s in the future… if I get Alzheimer’s by the time I’m 70, I want to fully enjoy what I have now.

 

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