Dementia: My Personal Story

I knew I had a problem but dementia didn’t occur to me.

Life was fairly idyllic in Beit Zayit, a small communal village down the hill from Jerusalem. Our folk dancing sessions were in a room with a window that looked out at Yad Vashem, Israel’s Holocaust Memorial Museum, where we literally danced in the shadow of death. My daily walks past the olive groves were constant reminders of the special beauty of the place.

The lapses in my memory that were happening at that time were easy to chalk up to age. They weren’t particularly serious memory problems and mostly related to people’s names and faces and details of events.

“Dad, we were there together two weeks ago.” I was dumbfounded. When he described our trip to Caesarea it was completely black for me. I had no memory of it at all.

That changed with a visit to the National Park in Caesarea. I was excited by my experience and called my son to tell him about it. “Dad, we were there together two weeks ago.” I was dumbfounded. When he described our trip to Caesarea it was completely black for me. I had no memory of it at all.

Something was wrong.

The neurologist gave me a MoCA test, commonly used to assess cognitive impairment, and ordered an MRI of my brain.

When I returned to the neurologist to get the test results he told me I have “MCI” – a term I never heard of. It means mild cognitive impairment. By the time I left his office I was in complete shock. I couldn’t even start to grasp this news.

I didn’t get over that shock. In fact, after that biggest-of-all-shocks there came more shocks from various things that happened. Over time I have found ways to deal with this condition that sits in a range of various shades of gray and black. How do you react to learning how dementia leads to the disintegration of a person to the point where there is no connection between who the person was and who they are now? How can you possibly relate to the unimaginable suffering that the family goes through as they become the person’s caregivers, who have their loved one bring them to the edge and beyond of their capability to cope with their new situation physically, emotionally, morally, socially, financially, legally, and in other ways?

All of this along with complete uncertainty as to what the future will bring – how fast will I decline, what tricky situations and moral dilemmas will arise, and how this will affect the family and surroundings?

Options

There are options on how to relate to the onset of dementia. One way is to not know what is really happening; only after his death did the family of Robin Williams find that he suffered from a severe case of Lewy Body Dementia.

Another method is denial and attributing what’s happening to regular aging or to the stupidity of people who try to say something is happening. Another option is to know in the back of your mind that something is wrong but hide from it. Fear, rejection, and loss of security are very powerful forces that have to be faced when confronting dementia. In looking back on my own situation, I have wondered whether my dementia – my declining ability to think – was already developed before I came to realize that I have this condition.

In addition to sharply reduced memory I feel that my brain is disintegrating, that with time my thinking is slower, that there are disruptive physical results of my brain changes, and that I’m moving closer to what I call the “Black Line” between being a whole person and losing my personhood in many ways.

Thinking Less, Feeling More

My professional background is as a Management Consultant, establishing structure and procedures in Organization and Operations in large manufacturing companies. As incredibly bizarre as it sounds, my dementia has changed me into a different person – a person who I like being better than the person I was before. One of the strongest and most impactful things that has happened to me is that I’m thinking less and feeling more. There is one word that keeps popping into my gut: “release”. As my thinking was going down it opened up space for my feelings to go up.

I realized that it was difficult to relate to because there are no words in the English language for what I was feeling. So thanks to the power of release I started to make up words. The first was a counterpart to MCI (Mild Cognitive Impairment). Yes, I was definitely feeling that my Cognitive ability was Impaired, but I was also very much feeling that my Emotion was Enhanced. So I created the term MEE – Mild Emotional Enhancement. I don’t have to be defined by how the world or the English language defines me; I can be defined by how I define me. I have MEE – Mild Emotional Enhancement.

And once the word-genie was released from the bottle it was clear that many words and concepts were missing from our language and awareness. Why do we have “Mindfulness” but not “Feelingfulness”? Feelingfulness has led me to cry frequently, but I don’t feel like I’m crying out of sadness or pain, but rather from the feeling of connection between my guts and something outside of me. So instead of “crying” I invented “gutweep”.

An activity that I found particularly fulfilling is thinking about what I want written on my tombstone. It has made me think about who I am and what I have brought into the world.

While dementia is opening up the emotional part of me, it is taking away from the thinking side of me. I’m very aware that the release I’m feeling is for a very limited time, until my dementia develops further and I get yet closer to the Black Line. While the neurologists do their best to determine where I’m at, I’ve learned that sensing and observing myself is the best way for me to know where I stand. I watch for signs of decline and I see that they are happening. My physical control of my body has declined such that for the first time people are starting to ask me, “Can I help you with that?” when I’m trying to do something physical. Shaking has become continuous. Issues of balance and walking have come up. It was very scary for me when I started to tell someone about one of my sons and I couldn’t remember his name. I’ve learned that with dementia things that start out small develop into much larger things. There is much I do not look forward to.

With this awareness I started to feel about my death and beyond. An activity that I found particularly fulfilling is thinking about what I want written on my tombstone. It has made me think about who I am and what I have brought into the world.

Part of my mission now is to raise awareness and conversation about dementia. My dying is deeply impacting my living, and my living is providing me with a deep feeling of calmness and fullness, of release, in my dying.

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