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My dad had been my mom’s caregiver, and we didn’t realize how much he was doing. People with Alzheimer’s are very good at disguising. They know something is wrong and they cover for each other. He would call home, and he would say, “Oh, we’re great! Everything’s good. We’re just fine,” and what he really meant by that was, “Your mother hasn’t fallen down, so everything’s good.” She got to the point where she lived in her chair. She slept in her chair...

Looking back now, I can’t believe I didn’t realize. She quit wearing makeup. She quit dressing in regular clothes — she wore a housecoat every day. I figured it was because physically she was somewhat disabled … she had lupus, she had fibromyalgia … she had lots of things wrong with her and the older she got the more feeble she got. She didn’t take really good care of herself. I think she thought she did.


Describe a memory that defines part of your identity.

After someone flipped the light switch off, the room went dark and the red-orange cherry beckoned from the green ash tray where the man had attempted to snub it out. In this memory, the emerald color of the ashtray looks like a nest of green-blue glass holding a cinder egg. I could not resist touching the orange pulsing there in the darkness. I see the thumb and forefinger of my right hand extending toward the ashtray, and a rush floods me as the small hand approaches the object of my desire.

The longing is shattered. A spike of intense pain and a yowl overtakes me as the cigarette cherry burns the finger tips. Finger tips under a layer of water. The watery vision tasting like salt. And then my mother’s alarmed face, and her arms and chest around me. This memory houses, for me, the notion that the pleasure we experience with intense desire is often accompanied with pain. I have thought of it during heartache or heartbreak.

Describe a memory that defines part of your identity.

My grandfather died when I was 13. He had Alzheimer’s disease, but he ultimately passed because of complications with pneumonia. I still think back to how he always had a five o’clock shadow and the roughest, stubbly facial hair. Like sandpaper. He always called me “my boy” because I carried his name as my middle name. I was the only grandkid who had the honor of doing so. I keep that memory close to heart because occasionally I have recurring dreams with him in it, or I will wake up some days and feel like he is with me, telling me today will be alright … I miss him very much and on days when I have to shave, I think about how that rough stubble face has translated to my own face after all these years. He’s forever inside me somehow.

She began having [physical] therapy, but she fell again, and that was just the beginning of the end. We got to the point where they had gotten to the point where they weren’t going to be able to take care of her any more. Alzheimer’s patients have difficulty swallowing, and they can aspirate, and they can get silent aspirations … I remember she was so sick and so sad. It was hard to know, because she was very uncommunicative, it was hard to know if she knew what was wrong with her, but I remember thinking to myself, “I will never do this again. I will never put her back in the hospital,” so after that we called in hospice and she was able to stay with my dad.

It was very hard for Daddy to understand, and this is what you have to understand about him. He cared for my mother. He got down to 125 pounds. My dad is 5’8”, he’s not very big, but he was so frail-looking, and it was from taking care of her and not realizing. They were sharing a meal … like one meal. And he didn’t realize he wasn’t eating enough, and she didn’t realize. When we went through all their things, we realized all his clothes were worn out because my mother hadn’t been shopping. My dad was doing the laundry, and I was thinking he could take care of himself while she was in the nursing home. That was our plan – that he could stay at home, and I said something about doing the laundry … I said, “Dad, you’ve been doing laundry for years.” He said, “I just do what she tells me. I don’t know how to do it.” He didn’t even know how to put the soap and water in, and when you have Alzheimer’s you can’t really learn new things, so I couldn’t show him because he couldn’t remember.


My grandfather had dementia and my grandmother had Alzheimer’s. With dementia, from what I understand from my cousin who works with people who have dementia, it happens to everyone eventually. You have sundowning,* where later in the day you can’t remember stuff as well as your memory and your cognition kind of deteriorates. So with my grandfather, it just seemed like a natural progression. It was really noticeable not last summer but the summer before last. I went to live with them after he had a stroke, and I saw him at night a lot and you could see, seeing him day in and day out, over the course the day, the deterioration of the mind.

*sundowning — the increased cognitive difficulty a dementia patient experiences toward the end of each day


My grandmother, though, a little different … She was found to have water in the brain and she’s been significantly declining. When my grandfather passed, she really started going downhill really fast. He seemed to be her anchor, and he, you know took care of her every day, but that was even a struggle for him.

We didn’t know how much of a struggle until my parents and I lived with her shortly after he passed to take care of her because she couldn’t live on her own. Some days she was better than others, and some days she couldn’t get out of bed. There were bouts of anger, which is a common part of having Alzheimer’s, and not being the same person anymore. She’s still alive, she now lives in a home, but it’s not my grandmother anymore. She’s someone who’s very, very confused, and she has to relive my grandfather’s death every day because she doesn’t remember that he’s passed. Now we have a rule with my family that if she asks, we don’t tell her that he’s dead so she doesn’t have to go through that over and over again.


They charge by how much they do, so my mother’s cost was really going up. My dad hardly needed any help … And then my mom got quite ill, and they figured out he was giving her his medicine, because she was sick and he thought what was wrong with her was the same thing that was wrong with him … They had already put him on one of these drugs that can be used to treat Alzheimer’s — they slow the progress down slightly. But Alzheimer’s is like a staircase. It goes down, and then it can level off, and then it goes down, but it’s always down, it’s never up. So it can go along this way for awhile, but then it will drop. And any time there’s a major change, like when we moved them, that putting them in an unfamiliar environment makes it worse. Evening makes it worse. Cloudy days make it worse.


… we decided we had to take everything away. He couldn’t have hair scissors, he couldn’t have cuticle scissors, he couldn’t have anything but like a toothbrush. He lost his glasses a year ago or more. We never found them. They can throw things away, or they can get mixed up, or somebody can come in their room and take them just because – you know. They didn’t ever turn up. He wore a bridge in his mouth that had a missing tooth, and one day he told me, ‘I’ve lost a tooth,’ and I looked and it was because he didn’t have his bridge. But he didn’t remember that he had a bridge. … She [the nurse] said one day she came in and he was washing his bridge in the toilet, and she said, “That’s so dirty!” and he said, “No, it’s not. I flushed it.” You just have to go with it because they make no sense. It makes sense to them, but it makes no sense.


Alzheimer’s is like a staircase that only goes down.

She was hilarious. I mean, it was a little like — one of my go-to memories of her is when I was eight or something. My cousin and I had a game called “upside-down world.” We always told my cousin’s sister, “If you go to this closet and you count to this number, you go to this world that’s the negative of what it is.” And so we’d be nice, she’d go in the closet, she’d come out, we’d be mean. And so we got my grandmother to play along with us, because she didn’t really believe us, she thought we were making it up. And so she played along and was as mean as she could be in a pretending sort of way.


She hated water. They had a pool in their backyard, but she hated to swim. But you know, [she] still went to the beach a lot and put up with all of us swimming in the pool all the time and actually loved it a lot that we all swam in the pool.

My grandfather adored her. Their relationship was so nice… very supportive of each other, no matter what happened. They were very strong together… Even when she was going for the Alzheimer’s, and he had the dementia. He had like six heart attacks and one stroke before he passed. So we were confronted with mortality multiple times with him. Towards the end, she would always joke, “You know, when you go, I’m just going to have to get a boyfriend.”

It’s especially hard for my dad. My mom just tried to hold on when it got really tough. But I think that the decline of my grandmother has been so slow. I mean, it’s been quick, but we knew what was going on, and she’s still there, so it’s not like a sudden death. It’s a slow death. But even though she’s not there any more, she’s still physically there. So it’s an elongated mourning process.


Three years. It was manageable until my grandfather passed away last year – about a year ago. I think that shock and that lack of consistency of having him there pushed her over the edge, and then she started like really rapidly declining.

 

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

I’ve had quite a few important people in my life who have passed away. I currently feel that they live on in my memory. If I began losing those memories, it would be like losing them all over again, but this time it would be forever. As an introvert, I probably wouldn’t tell anyone at first.

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

If things became worse, I would tell those close friends that I know, as they would be more accepting and supportive. Hopefully they would help me cope, and if the worst happened, they would contact my family.

I honestly don’t know how I would cope. The loss of a friend devastated me. If I was aware that my memories of those who I lost were slowly being lost, I would hope that I would have enough support to show me that I still had people who cared about me. If I began to forget about them? I simply don’t know.

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