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It’s tough. We tried at first to have my parents live with her, so they lived with her for about three months, but they couldn’t handle the stress either. They wanted to let her to live in her own house, but we couldn’t afford to have someone come in, and deal with the stress of having to have her on a baby monitor and listening to her and having her get up in the middle of the night, and if she’s up and she falls, then you have to take care [of her] or if she’s in the bathroom and she falls, you have to take care of her.

And there’s always that fear that you know, you’re going to miss something — you’re always on edge. And then when she gets violent and angry, that can get really, really taxing really, really fast, and it can lead to some serious resentment on the side of the caregiverand that’s just tough. So in addition to that, it has brought us together in terms of deciding how to take care of her and things like that, but it’s really bizarre from my standpoint, because she’s not the same person.

 

I don’t know how much she pretends, but she pretends to recognize me and know who I am. When I was talking to her on the phone about a year ago, she could remember — I mean, she pretended to know that I was in Florida … but by the end of the conversation, I could tell that she was just pretending to follow what I was saying, because the way she reacted indicated that she didn’t hear what I had just said a couple sentences before

…I imagine that a lot of the time, she didn’t know who I was but she just kind of pretended, and we pretended with her to make her feel better, and tried to put in cues to conversations to remind her who we are … It doesn’t seem like an ignoring, just a making do with what we have, because at the end of the day, we’re still family. And we still have connections on some level that isn’t verbal, and no matter how we voice it, we just have to rearrange the words around how our bodies feel.


Are there any memories you would like to erase?

Embarrassing moments — I’ve actually already erased a couple. From time to time, my mind will wander to a moment in my past. I’ll feel incredibly guilty and embarrassed, and my thoughts will abruptly turn away and just skim the memory over and over until I’ve forgotten it. These memories I forcibly forget are moments when I’ve inadvertently said something mean or offensive about someone.

Describe a memory you perceive differently now than you did when it occurred.

I was sent to Australia and New Zealand by my family in middle school. The mother of a friend of mine asked if I could send him a present while I was there. By the end of the trip, I had very little money. I ended up buying myself food on my last day (as opposed to buying and sending my friend the letter). I explained it as lost mail, but the truth was, I was hungry. When I got home, I felt guilty. However, I kept asking if the letter had arrived.

My hope was that the guilt would pass from me to someone else. It [the letter] obviously never arrived. I no longer speak with this person, but it isn’t about the note. But I always remember to keep promises now, be they little or small. I wish I could get back to Australia simply to pick up something for him.

It's as if the memories exist inside other rooms, but the doors are locked. The memory is still there, but because the door is locked, you can no longer visit it.

They’ve noticed a decrease in the incontinence issues. Some residents can be wandering down a hallway and see obscure items that you or I would not think would trigger that behavior, and urinating in very unusual places. But it’s not a purposeful act they think they’re doing the right thing. We’ve seen some improvement with that. We’ve had a few residents exit-seeking in the unit. They’d see a particular door with exit signs, and they would pull on the handle. For fire code reasons, if you pull on the handle and apply pressure to the door, it will unlock … we had an artist come in and paint a mural … on the back of the door. It was extremely successful in deterring exit seekers. There are many other doors down the hallway, it’s just when you have that one door, and it’s painted a very different color than all the other doors, they were drawn to that door. Once it was painted as a mural, we didn’t have that problem.

Sometimes you need to be insistent, but the best thing you can do and — some people don’t understand this, they think it can be somewhat cruel, but it is absolutely not — you have to play into their fantasy, for lack of a better word. Maybe you have a resident who’s looking for their mother, and they’re very concerned because they can’t find their mother, and they’re getting very insistent. They’re at the point where they’re almost in tears. Maybe they are in tears. They’re starting to get very agitated.

You have to play into that fantasy because at that point, you cannot reason with them to say, “No, no, they’re not here. Your mom is gone.” All that’s going to do is further upset them, and you do not want to cause further hurt or emotional discomfort and distress for the resident. In a situation like that, I might say, “Your mom called. She’ll be here in a little while.” It kind of depends what they’re telling you, [and] you can cater your response to [the situation]. But the best thing is to play into whatever they feel is real then.

 

… you have to have the capacity to be very compassionate and understanding and willing to listen. But that can come back to being patient. You have to be able to be willing to listen, and you cannot rush a resident. Recent examples — as the body ages, the mind ages, and your motor skills slow down a little bit. It doesn’t mean you’re not as sharp, you’re just not able to deliver your thoughts as quickly.

So if I have a resident in the office and I’m trying to explain a statement to them, or maybe they brought me their mail … I can look at them in two seconds and say, “This is it. That’s what it is.” Could I easily interrupt the resident? I know where they’re going to end. And [I could] say, “This is what it is.” … [But then] the resident feels like they’re not being heard. You would be surprised, if you just sit and listen, how many situations can be diffused, and you can cut out a whole lot of extra frustration just by being patient and listen.


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

We do so many functions by habit rather than by conscious thought, I would be disconcerted but likely not too upset if I forgot how to operate an ATM or where to store coffee grounds. It’s a bit like driving down a certain street on a weekend, and turning at the corner that takes you to work rather than to the place you really want to be. It’s simply relying on habit, not thought…

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

Over the past year or so, I’ve begun to realize that I drink too much … I can never remember the exact day of my mom’s birthday [because of this] … There was one time recently where I couldn’t remember the middle digits of my social security number. A couple months back, I misspelled the word “niece” in a handwritten note, and I literally hated myself looking at it on paper. There have been times when I ask for cash back at the grocery store, and the cashier looks at me confused as I walk away … I don’t know how to cope, really, beside take action and stop this addiction…

One of the things that surprises you is that they have music memories from way, way back. They have four music therapists on staff. When they sing, it’s amazing how many of the guys can sing along. He doesn’t know all the words, but when I went to the Christmas party, this pianist guy was playing “Silver Bells,” and I started singing and Dad was singing along with me. Singing the words, and he knew most of them … We have a group of men who visit the shut-ins, and they sing to them and talk to them. They haven’t got a nickel’s worth of talent honestly, but they love the people they go to see. It’s very evident that they care and the people care back. … One of the guys was down on his knees holding my dad’s hand, singing “Amazing Grace.” So that’s been surprising.

 

Describe a time you and a family member argued about the truth of a memory

I really don’t remember any family arguments about a memory. In general, when someone I trust
has a differing opinion about a memory, I would probably doubt my own memory more. I’m a firm believer in the idea that people can view or hear the same situation and come away from it with different views.

Then he started to have more care, and my mother quit eating — that’s very common — and he wanted to feed her. When we had to say, “Daddy, you can’t feed Mom any more, it makes her choke,” that was very, very hard for him. He couldn’t understand it. He was very angry for awhile. I’ll give you an example — my dentist recommended he have some work done on his mouth, and I had mentioned it, and he said, “Don’t – don’t do anything.” You gotta know my dad. My dad never raised his voice, never said a cuss word. He’s a very kind, soft-spoken, Christian man – deacon in the church – and he got very angry, and he said, “Just let me die. Do not do anything to my mouth. Let me alone.” I was like, “OK.” So we didn’t. We didn’t do anything.

 

I said, “Do you say what’s wrong? Do you tell a person, ‘Well, you have Alzheimer’s?” They said unless they ask you a direct question, you don’t say that. You kind of skirt around it because they know at first they’re having trouble rememberingthey write themselves notes because they can’t find things, or they start having trouble doing the bills. But honestly, it’s been my experience that most of them aren’t aware.

When my dad went through the stage when he had the paranoia and the fearfulness, I remember the director … she said, “This is a really hard stage of the disease right now because he knows there’s something wrong. But he doesn’t really know what it is. He just feels there’s something wrong.” And she said, “It’s harder almost on him than it is on you.” But she said, “In a little while, it’ll be harder on you, because he won’t know. He won’t remember. He won’t realize there’s anything wrong. But he’ll be a lot worse and you’ll see it.”


Not all facilities are equal … he kind of got overlooked. He had a severe incontinence problem where he forgot where it was appropriate to go to the bathroom. He would go in the closet, he would go on the floor, he would go in the trashcan. He just didn’t know where he was supposed to go, and so his room started to smell like a barn and they could not … they offered me no solutions, and it just got the the point where I was angry all the time. He wasn’t eating much. He would sit down at the table to eat, and he would think he’d already finished … or he would just get up and leave the table and no one would bring him back.

 

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