Earlier this sumer my dad found himself in the hospital for five days after suffering what was eventually diagnosed as a (thankfully) minor stroke. Being in the hospital meant that I had the honor of spending five days and four nights with my mother, who is in the middle stages of Alzheimer’s Disease. It was the most uninterrupted time I’ve spent alone with my mother since childhood. I found it a fascinating opportunity to observe her life at this point in her journey through dementia, and to interact with her in her daily realities.
Let me begin by confessing that I am no expert in Alzheimers. Our daughter, Taylor, has had far more experience with, and education in, the tragic disease. I am, however, deeply versed in life with my mother. I began noticing the changes long before her diagnosis. Conversations with her, which have always been pleasant, meandering journeys slowly became stilted and repetitious. I began to realize that there were certain subjects that she clung to like a child hanging safely on to homebase in a neighborhood game. In retrospect, I wish I had forced the issue with her and our family long before it all came to light, as we learned that medications can successfully slow the disease’s progression. C’est la vie.
I also know that Alzheimer’s and Dementia experiences can vary widely depending the patient and his or her own unique circumstances. I am in no way implying that my observations are somehow applicable to every person who suffers from these terrible diseases. For what it is worth, I am merely recording some of the observations and lessons that came from my personal time with my own mother in her current stage of this tragic disease.
First, a few general observations about my mother’s current waypoint in the descent to the cognitive darkness of Alzheimer’s. She has yet to forget any of our family members, though the names and faces of life-long friends have begun to escape her. When talking to me, she now refers to my father as “my husband” as though her relationship with him and her relationship with me have been separated from the mental compartment of “family” into separately labled relationship compartments in her brain. Nevertheless, I am still able to enjoy her recognizing me when she sees me. She has yet to fail in greeting me with the pet name she’s had for me since childhood (“Hello, Tommy Jameses“) and extending her arms for an embrace.
I have heard it said that those with ALZ can sometimes become more childlike, and many become bitter, angry and even violent. Mom has occasionally had momentary flashes of uncharacteristic anger, though more often I’ve experienced that she now lets fly with a blunt honesty about people and things that she’s never exhibited before. To be honest, I tend to find it refreshing. I am thankful that she has mostly exhibited a sweet, childlike humor I’d never seen in her before.
Watching mom now often feels like peering into the little girl she must have been. She is playful and joyous in an almost exhibitionistic way. The woman who who raised me and my siblings was sweet and fun-loving, but she carefully guarded herself, her looks, her words, and her actions. For most of my childhood she wore a partial set of dentures. I can remember her never wanting anyone, even her children, seeing her without her partial in her mouth. The mom I spent five days with this summer could not only care less, but I expect she’d be happy to pull out her dentures and make a funny face to make me laugh. My mother has always been apropriately reserved and “mature” around a camera. Now if I pull out my phone to take a picture she starts hamming it up and making faces. A part of me asks, “Who is this woman who looks like my mother?” Then I realize that I’m probably seeing an entire side of my mother that has always been there. I just never saw it.
I spent my time with mom in quiet observation. Our days together had a certain cadence. We would rise and have breakfast together. We would ready ourselves and drive to the hospital where we sat with dad in his hospital room. Each day I would take mom out for lunch before returning to the hospital to spend the afternoon with dad. In the late afternoon we would return to their apartment at the retirement community, enjoy a bite together, and spend the evening watching television until mom was ready to retire.
I made a conscious effort not to intervene with mom in the time I spent with her. I’ve observed that her flashes of temper often come when she feels as though someone is telling her what to do or treating her like she’s incompetent. It’s much like a child who barks at a nagging parent and exclaims, “I can do it myself!” So, I never told her what to do or tried to control her in any way. I just let her do her thing and quietly paid close attention. I was pleasantly surprised to find that it was only occasionally necessary to “suggest” that she might want to see if she’d taken her pills or double-check this-or-that. As long as I kept my voice tone pleasant and helpful, she always responded positively.
I discovered that she had a very specific routine each morning:
- Turn on the coffee pot. This is always prepared before bed the night before, another part of her daily ritual.
- Sit on the couch and turn on the television. Any morning news channel will do. It seemed to be randomly different each morning.
- Drink one cup of coffee while watching television. She doesn’t really watch television or take anything in, but she likes to have it on. I think it allows her the illusion (for others) that she’s doing something while her mind struggles to make sense of her moment. Interestingly, when she watched baseball with me she would regularly comment on things that happened in the moment (e.g. “Boy, hit that ball a long way.”) which is something she didn’t really do with any other kind of program. One night I took her to Buffalo Wild Wings for dinner. Surprisingly, she wanted to sit at the bar. She actually found all the television screens interesting. There was so much to look at and steal her attention.
- Set the table for breakfast. This included placemats, spoons, and plates. The east and south sides of the table were where the settings went. This seemed important. If I was working on my laptop where the placemat was supposed to be set then I could tell this threw her off a wee bit, but didn’t rattle her.
- Eat one yogurt with her second cup of coffee at the table. In the evening her meal was a Boost protein drink and another yogurt.
- Wash her cup and spoon along with the coffee maker.
- Go into the master bedroom/bathroom to get ready. Putting on make-up and “fixing herself” in front of the mirror is one of the things she gets lost in. One morning I finally had to “suggest” that we get going to the hospital in order to get her out of being lost in her endless loop of putting on and fixing her make-up.
I was pleased to observe that there were things that her routine helped her to remember and how much she still did without me prompting her. I watched her, at times, silently straining her mind to organize her world even if she quickly got lost in the process. If dad’s doctor started to give instructions she would get out a pen and note pad. She knew that she was supposed to do that. She might even pretend to pay attention and write “Dean’s Instructions” at the top of the page. Nothing else would be written as she would then get lost in another moment.
Much of my time spent with mom was me experimenting with, and even catering to, this playful, child-like spirit that has emerged in her as the Alzheimer’s has progressed.
Take chocolate malts for example. Mom’s appetite at this point is almost non-existent. A year-or-so ago her doctor said that she was, medically, at the point of starvation. Her weight was just under 90 lbs. Props to my dad and sister who have worked tirelessly to get her to eat. She’s gained weight and has been doing much better. Nevertheless, she is never hungry and will, like a child, refuse to eat almost anything you put in front of her. The one exception is chocolate malts.
Mom has developed an insatiable appetite for chocolate malts. When I asked her, “What sounds good to you?” it was the only answer she ever gave and she gave it every time. And, if I got her one she would actually eat the whole thing. So, I joyfully indulged her appetite. I mean, the woman’s almost starving and, in the near future, she’s going to forget the joy of tasting anything! Good nutrition, be damned! I decided that I would buy her chocolate malts as often as she’ll eat them. I soon learned that three chocolate malts a day was perfect.
Three times a day I would ask her “How about a chocolate malt?”
Every time I asked she’d look at me wide-eyed like a little little girl and responded, excitedly, “Oh, that sounds good!”
I started going to different places (DQ, Culvers, Bauders, Smokey Row, etc.) to see if she liked certain chocolate malts better than others. Smokey Row was clearly the winner, so that became our usual stop. It was during our thrice daily chocolate malt runs that I had another epiphany.
Mom’s ALZ has a certain repetition to it, but there’s also a routine to the repetition. Driving down I-235 always brought about the observation “I wouldn’t want to live in any of these houses along here.” Driving through the neighborhood around the hospital always brought out the comment, “I just love these big, old houses.” Pulling into a restaurant’s parking lot always brought out the comment, “Oh, I haven’t been to this place in a long time!” This statement was made the first time we pulled into the drive-through at Smokey Row even though I knew my mother had never been there before. And, it came out again four hours later when we returned for the chocolate malt she loved so well.
Two, make that three, observations sitting in the drive-through with mom at Smokey Row.
First, we often wax poetic in our culture about living in the moment:
- “Forget the past.”
- “Tomorrow is never promised.”
- “Enjoy the moment.”
But, I find that we rarely do any of these things. We allow ourselves to be haunted by the past or refuse to deal with resentments, injuries, and relational baggage. We worry incessantly about tomorrow. We crank through our days with little or no introspection, observation, or enjoyment.
For my mother, the present moment is her only constant reality. The past is a fog. The future is cognitively unreachable. There is only this moment. Certain stimuli bring out the same reaction time and time again. I can’t will my mother to remember. I can’t correct her brainwaves to help her conceive of the future. I can only be her companion right now, in this very moment. My brain is the one that functions “normally.” When my mother’s “moment” repeats itself in intervals of five minutes or five hours I am the one who must compassionately choose to forget the last time it happened, let go of the annoyance I feel in the knowledge it will happen again (and again, and again, and again…), and simply be fully present with her in this moment.
There is also, I realized, compassion to be had for my father who is my mother’s constant companion on this journey. That was my second take-away from the moment.
I believe that my father’s Dutch sensibility long-ago convinced him that there is a black-and-white, right-and-wrong aspect to everything in life. Add to this a touch of perfectionism and he’s always been a bit OCD, and vocal, about the correct way to approach everything. My dad was a great accountant. The books always balanced perfectly. He was also a master craftsman with anything he built or made by hand.
Of course, living with a person who forgets almost everything means you’re living with a person who gets almost everything wrong. My father’s compulsion for everything to be right means that whatever is wrong must be corrected just like an incorrect number on the spreadsheet. Alas, correcting a person with ALZ is a fruitless, even counter-productive, exercise. Here I cross-reference the culturally popular definition of crazy: Doing the same thing over and over and expecting a different result. You can correct my mother all you want, she’s going to make the same mistake when she repeats herself in five minutes. I’ve watched my dad struggle to adapt to these difficult new realities. He’s done remarkably well, considering.
Once again, I found child-like-ness to be a good vehicle to understand that I needed to surrender any compulsion I felt to correct my mother. Life for her, much like a child, is a never-ending game of pretend. Sometimes she doesn’t remember and I watch her make up an answer just like our daughters did when they were toddlers and you asked them a question that was just beyond their comprehension. Sometimes her brain is permanently confused about a fact or a memory, and nothing is going to change that.
Because she can’t remember the past, however, I began to notice that each moment can be a bit of an adventure, a new revelation, and an exploration. When I decided to play pretend with her and to even encourage it, I suddenly found it easier to give up any need I felt for anything she did or said to be right. It’s not about right or wrong. It’s a game, and I am simply playing along. And, I sometimes found it to actually be fun.
Btw, our daughter Taylor wrote a great piece in which she observed that a conversation with a person who has dementia is a lot like a playful theatre exercise. I highly recommend it. It’s a quick read: https://storiicare.com/blog/carer-amusement-absurd-conversations/
Which brings me to my third observation sitting in the Smokey Row drive-through. During our first visit that day I noticed a cemetery across the street. Mom was, as usual, staring out the passenger window trying to make sense of her moment.
“Look at that cemetery over there,” I said.
“Yeah,” she answered as she looked to where I pointed.
“They say people are just dying to get in there,” I dead-panned.
She laughed, and laughed, and laughed. “Oh, Tommy Jameses, you’re so funny!” she giggled.
When we returned a few hours later for her third chocolate malt of the day she experienced her routine “I haven’t been here for a long time” moment. It was then that I realized: If she forgot that she’d been there a few hours ago, then she also forgot my joke. So, like a stand-up comedian working a different audience at a different club on a different night, I used my cemetery joke again just as I had before. She thought it was hilarious again! She thought it was hilarious every time I used it (and, I used it a lot).
Yes, the repetition of my mother’s dementia can be really, really annoying, but it also affords me the opportunity of repeatedly giving her a laugh or a happy moment over and over again with minimal effort. As the old saying goes, “If you can’t beat ’em, join ’em.”
As I began to embrace the fun of playing with my mom in her moments, I had other discoveries. I’d read that the Church of England has started to conduct services in which they’ve consciously returned to the hymns and liturgy of 60-80 years ago. They did this because church members with dementia remember and connect with the hymns and ritual in the compartments of long-term memory they could still access. This gave me an idea.
I know some of my mother’s favorite songs from her childhood. She used to tell me stories about playing the song Sh’ Boom by the Crew Cuts so many times that her father yelled at her. So, as we left the apartment to head to the hospital I pulled up Spotify and played Sh’ Boom. My mother came to life. She knew almost every word to the song and began dancing in her seat. I then queued up Frank Sinatra, Nat King Cole, and Doris Day. We sang together and danced in our seats together all the way to the hospital.
Then, we did it again the next day and the day after that. The moment was new to her every morning, and I had the joy of singing and dancing and sharing a special moment with my mother each time. I realized that these moments are all I have left with her in this life. Alzheimer’s will eventually steal them, too.
My father and my sister are my mother’s constant care-givers. I recognize that my time with mom is grossly minimal in comparison, and I honor their love and perseverance.
“Thank you for helping take care of me,” my mom, nevertheless, said repeatedly to me in the days I spent with her.
Each time she said it I repeated the same answer. “Are you kidding me? Mom, you gave me life. You and dad have given me so much over the years. Helping you out right now doesn’t even compare. I am so deep in your debt.”
Repeating that answer was somehow therapeutic for me, as was the realization that doing so brought to mind. I’d learned some important life lessons in those five days that I will always carry with me. I also enjoyed some precious moments of laughter and joy with my mother that I will always cherish. Even with Alzheimer’s, she was still giving.
The debt can never be repaid.