a philosophical moment with my father during his "dementia years", plus solving the hypoglycemia problem by taking away sugar

"Contemplating the Big Life Issues"

Lise Winne writing the post today:

There was a remarkable experience I had with my father during the years when he had dementia. It was as though his dementia disappeared for awhile, and in its disappearance, there was a deep conversation that took place. 

He actually realized he had dementia, and he did not like that he couldn't remember things from moment-to-moment, but in many other ways, he did not seem like someone with dementia at all. In fact, he was teaching me French in the last four months of his life, and retained a remarkable vocabulary, and could even rattle off names of artists who were influencing how he looked at landscapes or street scenes as we took drives here and there.

Anyway, he came to stay with us for a long period of time, just him, by himself. 

In the first few days, my thoughts were very much focused on how to keep him safe, and that meant cutting back on anything that could be confusing or where he could get lost. In fact, a "dementia episode" happened in Portland, Oregon where he went to go for a walk, but then forgot where he was or how to get back. He was then picked up by police. The police called me first, as my number was found at the top of a list located in his wallet. He was rescued by the people he was staying with, but I wanted to make sure it didn't happen again, especially under my watch.

So, I kept away from turnpikes where the bathrooms had too many stalls, and there were too many cars to choose from in the parking lot. I always traveled back roads with him, and never once did he panic at not knowing where he was or where to go. I tried to make traveling and our times together in my home as stress-free as possible.

I had read somewhere that some new research had uncovered that simple carbohydrates and sugars had a lot to do with dementia. He had a terrible time with hypoglycemia, fainting or feeling faint on walks, usually starting in mid-morning, around 10:00. So, I had a sixth-sense that the hypoglycemia was connected to the dementia somehow, even though I did not thoroughly research it at the time. 

His doctors in his own home town had suggested he carry around candy lozenges and granola bars to use when he felt faint. These are loaded with sugar, of course, good for an emergency. The problem with this approach, as I saw it, was that the whole day, then, would be full of, what he termed as sugar-lows. Every two hours, like clock-work, the sugar-lows would reappear, and there would be another crisis, where he would have to sit down or lean on me until his lozenges or candy bar would revive him again. 

Sugar-lows were greatly debilitating. He had tingling in his hands and feet, blurry vision, feelings that he was sleep-walking, slurred speech, looking dazed and confused, feeling weak, being barely awake for lunch, and a host of other problems. In other words, he was clear in the morning, but by mid morning and the rest of the day, his mind, memories and speech seemed to suffer. He would also take huge naps in the afternoon. With the exception of his professorial intelligence, it was like taking care of a toddler in that he needed a big nap in the afternoon, and everywhere I went, I had to take snacks, and be fine tuned to how he was feeling at all times. 

So, I tried a different approach. I took his lozenges and all of his pick-me-ups out of his luggage when he would arrive for his visits. I cleared my home of fruit juices, honey, chocolate, raisins, boxed cereals, ice cream, anything that resembled franken-food (like chips, a simple carbohydrate, though there was never much of that anyway), indeed every kind of sugar-laden thing except fresh fruit (whole and fresh like oranges, grapes, blueberries, strawberries and the like). In the morning I fixed oatmeal and eggs. He as sure wanted sugar with these meals, but I didn't give it to him, and explained that I was trying an experiment to see if it made a difference in terms of his sugar-lows. 

I can tell you that it made a huge difference. While I did carry around his lozenges in his snack pack for the first few days of this experiment, I eventually saw that I didn't need to, that I could carry around nuts, or crackers and cheese, or crackers and unsweetened nut butters, with water. In general, except for the whole wheat crackers, I kept carbohydrates to a minimum. In the evening I sometimes made pasta with a lot of vegetables or fixed a potato, but primarily most meals were soups, salads, meat, fish, lentils, split peas, eggs, dairy, stews, avocadoes, sometimes with or without a small portion of wild rice or brown rice. For dessert, I would hand him a banana.

All meals were also alcohol-free (alcohol turns to sugar in the body).

I ate this way right along with him.

How did it make a difference? Well, first off, he no longer felt faint at all, and I mean not at all. He did not even need his afternoon nap. In fact, not once on these solo trips did he even suggest that he needed a nap. While he still had dementia, it seemed to cut the symptoms in half. He was as clear in the morning as he was in the afternoon. It cut way, way back on his confusion, the disorientation episodes, the tingling sensations, feeling weak and unable to continue with an activity. He could still have issues with short term memory, but even that seemed "better." 

The lesson here is perhaps that if you are feeling physically well, your mind responds better too?

I tried to tell some of my other family members about my experiments with his diet, but I was not taken seriously ("You are not a doctor", I was told, among other things). So, when he was not at my home, he was back to his old diet and his old ways, and there was not much I could do about it.

If you are reading this, and have an open mind, try this experiment out yourself if you have a loved one who has dementia and/or hypoglycemia. It may bring your loved one back to life, or at least reverse the effects of dementia somewhat.

Anyway, my times with him in the "dementia years" were mostly about activities, taking long walks, going to art museums, taking pictures together, playing music, listening to music, gong to parties, and so on. I actually did not engage in many full discussions with him, especially emotional ones, because I did not know how to proceed into these subjects when dementia was part of the picture. So, I would often end these discussions with suggestions like "Would you like to pick flowers today? Look at how sunny it is!" often hugging him from behind. I felt optimism, light, nature and fun might be a good antidote to dementia, and hypoglycemia, and past experiences he might dwell on where he had experienced too much depression and PTSD.

But, I realized I was too quick to judge his capacity for deep thought and conversation. The whole way driving him home, the conversation between us got deep and philosophical, and I was floored by his ability to have such a discussion. 

It went something like this, though obviously this is the shortened version:

As I was driving, a car came into my lane and my father yelled "Watch it!" The other driver managed to swerve back into his own lane just in time. The road at that point was carved out of a cliff. On my side, there was a steep drop. The other lane had a steep rock bank. In other words, we were trapped in narrow confines, with nowhere to go should the driver have not realized what he was doing in the nick of time. 

It was pure luck that we managed to avoid a car accident. 

He seemed a bit shaken up after wards, and I said that I was sorry, that the type of road it was had not given me many choices. And then I said that it was perhaps a matter of being lucky, and that perhaps he, my father, was my "lucky star" because he had managed to be the only one of his troop in WWII who was not killed or injured, and that maybe he was carrying his star in the car with him at the time (I admit that sometimes I talked to him as though he was a child).

His response was something like this:

Well, maybe I do have a bit of luck. I've never thought of myself as lucky, but perhaps, in the end, that is what life is about more than our plans, or our abilities, who we marry or don't marry, who our kids are and what they become or don't become, who we meet or don't meet, or even whether I can control what happens to me in a car on the way home. 

And I'm not even wanting to control this car. I know somehow, that I have lost my ability to drive effectively, with my memory and all. 

I notice that a lot of old folks, when they lose control, can't stand the idea, and try to overcompensate by trying to control more in their lives, rather than less. I think that is foolish. I think at some point, you have to realize that life is very much about going with the flow, accepting fate, and people for who they are, and things that happen. It is a kind of surrender.

The life of surrendering my goals and my control is a good experience, I feel. It comes with a kind of beauty and peace. It is like looking at a field of flowers, say, and instead of picking flowers to take home with you, the flowers are already picked, but with your eyes, instead of your hands. You surrender to leaving them where they are. 

Even if you don't have flowers at home, memory is like a flower. Do you see what I'm saying? 

You open your memories like a flower opens to the sun. And mind goes to the memory of the field of flowers instead of concentrating on a lack of flowers at home. When you realize this, a lot of peace fills your life and even your body. 

You'll get to this place too, one day. So, just remember what I'm saying. We all get to the inevitable, but this intermediary phase is worth experiencing in all of its glory, without struggling against it. If you struggle against it, you won't truly experience what it is, and you won't see the beauty in it. There is a lot to be said for bringing your mind into a state of feeling fearless in the face of death, and that is what this is. 

My initial reaction to that car was a knee-jerk reaction of fear, of course, but the fear is not long lasting and does not make me want to struggle with it and hold onto it. I let it go, and the trust returns. 

That is the thing about all of us animals. All animals have to travel somewhere. We are not always safe, but we count on the herd, more or less, to keep us safe. 

Some animals drive the pack. 

Some animals get swept up in the herd, going forward. If you don't follow, you get stampeded. That's where I am. 

The contentment that comes at the end of life is well earned. It's a very different life than when you are a young buck and you are trying to get your career going, and a family started and all of the responsibility that comes with it. And when you are at that point, you think it will last forever. You realize you could have something come up that could end it all, but for the most part, you are trying to sustain that day to day. You don't have any concept of living in the state I am in now. I'm sure that it doesn't cross most young minds. But I can tell you that from this vantage point there is a kind of claustrophobia about the day-to-day striving, carrying a mortgage, worrying how whether you are treating your kids and wife the best way you can treat them so that you don't do any damage to them, how to be the best teacher you can be, how to play an instrument expertly and with feeling, how to keep the weeds out of the garden, how to make the perfect architectural drawing that will change your life, how to treat your colleagues in meetings where there are a lot of different perspectives and sometimes very opposing perspectives, and being able to afford the next new car -- all of those things. And it really isn't what life is all about; it is only a part of what life is about. And maybe it is much smaller than the allotment we give to it. It certainly seems to be too much of what life is about early on, so that you miss a lot of experience of just enjoying your relationships, and your children, and your home. 

I like getting up in the morning, going downstairs into the dining room, and looking out at the bird feeder, and enjoying the potted plants in the windowsill, and seeing the place mats all in a row on the table. You miss so many of these simple things running here and running there, and trying to keep so many things together. 

It is like this great whirring machine slows down, and goes quiet, and you finally understand what real peace and joy is: it is just in these simple things around your home and your garden. It is just where you are at any given moment, even if it is just closing your eyes in bed. When I close my eyes I sometimes remember the bad things that happened to me, but mostly these days I remember the good things. I think a lot about the past. For instance, I might think about how my grandfather carried me on his shoulders when I was a tot, and how much I felt lucky to be his grandson and to be loved by such a great man. I might think about how one of my army buddies came to comfort me after a big battle, which can mean the world when you are frightened out of your wits. I might think about Ken Webb and his grand visions. It is all of these things, reliving them with a different perspective. And sometimes I am not in bed with the lights out when I think about these things. Sometimes I am thinking about these things while enjoying watching some squirrel trying to get at the seed in the bird feeder. 

It is enlightening to come to this point. If I am intentional about it, it seems to stoke the enlightenment about it even more. I just notice so many more things now, without feeling I have to be an active participant. 

After this conversation, and letting him out of the car, I drove home with tears in my eyes, realizing that he was one of the most beautiful evolved souls I had ever known, or indeed ever had significant time with during my lifetime, and that I might lose him and his perspectives some day. 

I would think a person would have to be evolved to think in this manner in the first place, but with dementia it seemed incredible.

There were times I wondered if he had dementia at all (he was actually diagnosed with Alzheimer's -- but based on memory tests alone), but at these times I had my doubts. I could call him up on the phone and he might re-tell the same story over and over and over again, seem confused about nearly everything and be slurring his words. And then there were times like this, where he was so clear as to seem misdiagnosed. 

In fact, I sometimes wondered if the hypoglycemia was driving the bus, rather than some kind of brain defect.  

Writing this down is a way to always remember the things he said. I also share it with family, and with others who happen to find this page, about one way to live in the world, especially when you are old. 

  Robert F. Winne as an old man

(photo taken in a small food market)