Confined within the Mind

Thanksgiving has been quite the double-edged sword this year. It has, unfortunately, kept me away from the computer for over a week, what with all the prep and cleanup. This was the first year we had the holiday at my house, and it turns out a lot is involved… However, this little break has also forced me to think about a lot of things, including the swirling, conflicted emotions and thoughts I have about one of my uncles. He has Alzheimer’s Disease, and the more time I spend with him and help to take care of him, the more I can’t help but question his thoughts, feelings, and actions.

My uncle worries me these days. I usually see him at least once a week, and he seems to be in more of a fog than he used to be; more confused and unable to make decisions. When we lapse into silence while out together, I wonder where he goes and what he thinks about. I wonder if he thinks about anything at all, or if his mind is as blank as his expression. Does he forget who I am and where we are—And does he have the ability to care that I’ve brought him someplace ‘strange’ or ‘new’?

My uncle is a man in his eighties who now relies on his wife and others for almost everything. The Alzheimer’s has been showing through outward signs and symptoms for at least the past six-and-a-half years. I didn’t notice at first, because I was away at school and only saw him for visits and holidays, but as the years marched on, I could indeed tell something was off about his actions and moods. I didn’t know exactly what was going on until my parents fully explained it all to me my first year home, which was two-and-a-half years ago. At that point in time, though, I was working a twelve-hour-a-day job and could not see him nor my aunt very often.

Now that I work from home, my time is my own. I hang out with him once a week. I usually drive by my aunt’s house and pick him up in my car. We go for a meal or coffee and then it’s off to my house for him to play with one of my small dogs, Tyler.

Back when I first began to watch him so that my aunt could get some work done—she is a bit younger than him, in her fifties—he would make some of his own choices. My aunt would tell me what things he liked and disliked and I would give him choices from the “like” list.

“Do you want a chocolate chip cookie or ice cream?”

Because I used two things he loves, it was an easy question—either one was correct. He couldn’t go wrong.

“Do you want a small or medium soda?”

A question of size was a little trickier. I would then have to qualify the words “small” and “medium” by asking how hungry he was feeling.

Lately, things have gotten to the point where he is unsure if he is hungry or not. Instead of asking, I just get him the smaller size and then order more if he wants it. When we go out for a snack or a meal, I opt for places where he can visually see the food. Bakeries are great: they have prepared and wrapped sandwiches, usually cut down the middle, so he can see what is on the inside. Then I’ll ask if it’s too dry—or just show him a packet of mustard or mayonnaise—and see if he wants more.

My uncle is a very tactile person. For a while I wondered if maybe he couldn’t use silverware anymore, but I don’t think that’s the case. There are some foods he uses a fork and knife for, while others he prefers to eat with his hands.

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Us at my aunt’s favorite Chinese buffet a few months ago.

For gooey cookies and hot drinks, he likes a spoon. He doesn’t want to touch the sticky chocolate or whipped cream. He hates to have messy hands and goes through several napkins if I let him. But during the same day, he may pick up a drier piece of meat or a cold cookie with his hands. On Thanksgiving, he held his pumpkin pie while he ate it, keeping his hand on just the dry crust. There was a problem when he got to the end and made a bit of a mess with the last few bites, but I just cleaned him up and it wasn’t an issue. He even thanked me for helping him get the tacky pumpkin mousse off his hands—And it’s that act of thanking that leads me to believe he knew that pumpkin shouldn’t be there, but the pie was otherwise alright to hold.

I have also seen my uncle display signs of OCD that involve the sense of touch. He likes to trace knots of wood, pet animals and even stuffed animals, hug me, and touch the ruddy handle of his cane if I place it within his reach. A more worrisome habit is the one where he likes to pat strangers’ children on the head. It’s not really okay to be touching or fussing with others’ children and I get embarrassed and concerned that he may someday bother the wrong people. Though when it comes down to it, he probably just likes the human contact.

He also adores animal contact. My uncle and my dog Tyler have truly bonded. They say that animals are very good for the elderly and sick, and Tyler makes a big difference in my uncle’s demeanor. The second my uncle sees little Tyler standing at the side door, alert and keenly observing the car, his eyes light up. He moves much faster and with more assurance when he knows that little Ty is within his reach. Even on his worse days, my little Tyler can catalyze a change in my uncle’s attitude. He softens a bit and mellows towards the rest of us.

My uncle rarely knows who I am. I admit that I have physically changed a lot because of my FTM transition, and that my name is different, but he doesn’t know my brother either. He does seem to recognize me as some guy he sees regularly, though. He often protests that he wants to stay at home with his wife, but he has never denounced me in public or questioned my intentions. When I order us food and we practice having him pay, he is always willing to shell out the money and take my help in counting out the right amount. When I tell him to get into my car, he does so right away. I think I’m lucky; I’ve heard of cases where the person will be unwilling to go with “strange” people or forget them halfway through an outing. He always seems to know that I care about him, and that’s the most important part. I want him to feel loved and respected as a person, even if I’m a stranger.

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Who wouldn’t love this little shit?

Tyler is a unique case. My uncle always seems to recognize Tyler, even if he can’t remember who I am. As I mentioned, he lights up when he sees his little doggy body come into view, and Tyler sits by him most of the time he’s in my house. Even during Thanksgiving, when there were so many people that Ty likes, he spent the whole day in my uncle’s lap or next to him. It made me really happy because my uncle was so clearly delighted. It was also nice I didn’t have to worry about Tyler being stepped on! Before my aunt and uncle arrived, he was constantly under my husband’s and my feet. My husband even konked him in the head with the oven drawer because he was dashed in front of it, hurrying out of the path of another person. The minute my aunt and uncle pulled up, however, I told him, “Uncle’s here! He’s here! Let’s go see him!” And the dog followed me right to the door to say “hi”.

I don’t know why he always recognizes Tyler, but he does. My aunt keeps pictures of my uncle, Tyler, and I sitting together hanging in his office so he can look at us whenever he wants. They’re also helpful so that he knows he sees us often. Now that he can’t read much anymore, pictures have become essential to his schedule. Last week, I came up with a plan and told my aunt.

In a series I read, With the Light, there is a child with Autism. He couldn’t read words for a long time, and so his mom developed a picture schedule. Because I have never had experience caring for someone intelligent who couldn’t read, the situations seemed similar in my head. I told my aunt that we should take pictures of his day—things like his usual breakfast, lunch, dinner, myself and Tyler, the gym or pool, and his other caregivers. Then we could print and back them, line the backs with Velcro. If we put a long strip of Velcro on the cabinet above where he keeps his old planner, when he went to check the planner, she could easily point to the more intuitive pictures. I told her that if he could see his schedule, it might make him more willing to follow it. The way things are now, he tells her that the upcoming events aren’t in the planner because he can’t read them. He used to be much more agreeable when he knew what was coming, and I think this could be a practical solution.

I once asked my mom how long my uncle has. She told me that most people live about four to seven years after being diagnosed with Alzheimer’s Disease. I have done a lot of research myself, and it corroborated my mom’s answer that four to seven years is the average. Some can live ten or more years, but that is usually when they’re diagnosed younger—in their sixties or very early seventies. He was diagnosed in his mid-seventies, so I wonder what will happen and how much longer I have to laugh and play around with him. I wonder what my days will look like afterwards. I know Tyler will also wonder where he went and he will leave a huge, gaping hole in our lives.

And believe me; I have my regrets. I have been angry with myself for a while now that I never got to know him better all those years I was growing up. My brother and I would always visit and do things with my aunt. My uncle was a mere background player. He worked often, and I just didn’t make the effort to hang out with him, even when I stayed over. He had his own interests and my aunt was more amiable… So I stuck with her. But the more I learn about my uncle’s past—about how he was in the marines for several years, how he was a telephone engineer—I want to know more of the person I’ve missed out on. I only knew him as the man who corrected my grammar and told me not to come stomping down the stairs. I can only answer so many of his questions because I never asked about his past. I have to do math to figure out simple things like when he graduated high school or entered the marines. These are things I should know, as a member of his family. I should’ve cared more; I should’ve been the one to initiate the conversation.

We didn’t interact much at all until my last year of high school. When my dad’s whole side of the family went out together, I would sit down the end of the table, either next to or across from my uncle and we would talk about my life. He would try to help me deal with and navigate my relationships with my dad and brother. They’re difficult people, and my uncle could tell I was having trouble, especially during my last year at home. I hate it when people tell me he started to care and help me because he was losing his edge. That repulses me, to think that we only opened up to each other because he was starting to get sick and lose it. It infuriates me to think that I wouldn’t have gotten to know him at all if he lived a nice, long, fully aware life. It makes me hurt and rage inside.

All I can do now is make his quality of life the best it can be. We all help him get things done, as well as provide companionship and love. His attention may wander, but we always bring him back from the assumed blankness of his thoughts. He may be trapped in a fugue, but I’ll bring him out of it as many times as I can. We will all stay by his side and let him live life to its fullest, without the shackles of doubt and indecision. He may have to live with Alzheimer’s, but he also fights against it. We chat about his past and try to remember important events—at what age he entered the marines; how many kids he has; past pets; his family. I will arm him with all the information and love I can to make him want to stay here with us and have so many more happy, secure years.

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My most recent picture, from a good day a few weeks ago.

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All pictures are from my uncle’s good days. I try to take at least one every time he remembers either me or my dog so I can document the better times. I like seeing that clarity in his eyes.

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16 thoughts on “Confined within the Mind

  1. I particularly love the last pic!

    I’ve worked as a carer for people with Alzheimer’s, it can bounce between being the most rewarding and most thankless job out there, especially if you know the person personally. Props to you for your weekly trips, it’s so easy to run away from something so scary to see

    Liked by 1 person

    • Thank you!! Yeah… Sometimes at first I would cancel pretty often, but now that I’ve gotten into the routine, it’s a lot easier! He attitude usually turns up a bit when I take him out, and skyrockets when he sees my dog, so I’m very lucky that it’s not too hard.

      That’s amazing, that you do that. It must be very, very hard… Not just to do, but also to see these people you get to know and love keep progressing. It’s so sad that there isn’t anything to reverse it, and the medications to stop it don’t always work.

      Thanks for your kind words and I wish you the best of luck with your clients. 🙂

      Liked by 1 person

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