Dementia: What Are My Options Going Forward? By Wally Klatch

By Wally Klatch

For many people, death, dementia, and suicide are taboo topics. I am thinking about all three of these, and I feel that not being open about dealing with them would make all three even harder and more painful for me. In the bizarre world I’m living in now, they are my worst enemies and also my best friends: they are literally destroying my life, and at the same time, talking about them is a mission I’ve set for myself that is part of what is keeping me alive. It’s clear from speaking with other people in similar situations that, at the same time that these topics are taboo, there is a large desire, even a large need, to talk openly about them. My purpose here is exactly this: for me to be completely open about how these topics have come into my life and how I’m relating to them, and so to help other people feel that they can be open about them as well. By “Dementia,” I mean any type of dementia, such as Alzheimer’s and Lewy Body, among others. I do not in any way advocate for, or object to, any specific actions in connection with any of the three topics I describe in this article. I am only addressing suicide because it is one alternative to further development of my dementia condition; if I did not have dementia, I would not think of suicide. If you or someone you know is in crisis or considering suicide, you should immediately call the Suicide and Crisis Lifeline at 988.

Some of the material in this article is described in more detail at www.TheAlzheimersConversation.com, which became my online “journal” along this journey. This article is about what has happened along the journey that led to how I relate to life, death, dementia, and suicide. The reality of my situation fell on me very hard. I found out that I had Early-Stage Dementia as a result of a visit to a park. I really enjoyed the park, so I called my son to tell him about it, and he responded that we had been there together two weeks earlier. He described our visit, and I had no recollection of it; it was completely blank. This was alarming enough that I went to a neurologist, and neurological testing led to the diagnosis of Early-Stage Dementia. This was very difficult to hear and took time to absorb, but my reality was clear: I have Early-Stage Dementia. This was for me a fact, and from this harsh introduction, I already knew that no amount of wondering, denying, hoping, avoiding, ignoring, or minimizing would do me any good, and in fact, they would distract me and harm me. I have Early-Stage Dementia; go from here.  As devastating as it was to have that boulder fall on my head, it got me to face my reality much quicker and cleaner than slow realization and acceptance would have done.

There I was, but where was I? At first, there was only one word in my head: dementia. Many horrid images and feelings came along with the word — a slobbering madman, an out-of-control freak, a sub-human locked away in inhumane conditions, a life that had no resemblance to what I had known life to be up to then.

Then something happened that would happen to me over and over again: wherever I was, I would continue to transform and find myself in a completely different and unexpected place. In this case, as I thought that I was drowning in black turmoil, one day a simple realization came to me: I’m still alive. The reality of my dementia/dying is still as horrible, but something else has been added to it: living. With this realization, the world I was in changed, from dying to dying and also living. And another change: “realization” was different than it had ever been in my life. Things were coming to me as feelings in my guts as much as thoughts in my head. I had a new set of sensors for myself and my world. Perhaps my head/thinking working less because of my dementia opened up space for my guts/feeling to be more present.

Feelings flowed and led me to realize my next reality, that dying and living weren’t present in me separately, but that they were connected; they were dancing together. This feeling led to a phrase that has been very present for me since then: “When Living and Dying Dance a Duet, What Music Will You Play?” What on earth am I to make of this unreal world I’m now having to adjust to living in – I am now watching Living and Dying dance in my life, and I’m playing the music they’re dancing to. As happens from time to time in this process, a bit of black humor popped up: Dementia is enough to make you crazy. And far blacker humor also pops up: Dementia is a no-brainer. Adding a Yiddish element to the word means it takes away personhood: de-MENSCH-ia. There is even a fashion aspect — a T-shirt I made says, “I’m Dying – You Oughta Try It Some Time.”

At the same time, all of these new and strange feelings have been happening, I became grounded enough to try to find out as much as I could about what dementia is and what it does. I volunteered at an elder care center, joined support groups and organizations for dementia patients and for dementia caregivers, wrote a weekly post of how dementia is expressed in each week’s Torah portion (it is and sometimes quite strongly, and I still write the weekly post), and this connection with dementia reached the point where I started to speak and write about my experiences with dementia. All of this was accompanied by the harsh reality of how dementia affects my life more and more, which was very apparent from things I was feeling day-to-day and from the neurologists’ explanations of the results of the testing they frequently sent me to.

This harsh reality also affected the music I decided to play as Living~Dying danced their duet in my life. I found that there weren’t words for things I was feeling, so I created a “Vocabulary” for them. For example, it didn’t feel right to me that the world labelled me “impaired” as in the phrase Mild Cognitive Impairment (MCI), so I labelled myself “enhanced” by creating the phrase Mild Emotional Enhancement (MEE) and presenting myself with this label. We have rituals for events and transitions that occur in life, so like the ritual of Bar Mitzvah marks the transition from Youth to Adulthood, I created the ritual of Bar Matzevah to mark the transition from Adulthood to Aging. I felt the changes I was going through were releasing me from parts of my past, and made that feeling of release part of how I led my life with this condition. I needed help and stopped hesitating to ask for it — I can’t handle too much input, so when somebody is speaking with me, I frequently hold up my hand for them to stop for a moment while I absorb what they’ve said. I often can’t remember people’s names/faces/connection to me, so when somebody starts talking with me, I ask them who they are and how I know them. These and many more new and different things were happening to me, and were putting me in a different world than I had known.

And as had happened before, all of this together took me to a new and unexpected place. It was a place in which a set of new feelings were coming together: that this is my life, that feeling is very important to me, that old rules can be exchanged for different rules, that I can go through processes that I couldn’t have even imagined before, that dementia is taking me to a horrible place that will also affect my family dreadfully, and many other aspects of this new landscape that now surrounded me.

Within all this, I was not just flowing with whatever happened, but my feelings and thoughts became more active in exploring and pursuing other directions. Two of these directions had particular effects on what was to follow.

The first direction was a feeling that came from my gut and not from my head. The first time I felt this particular feeling, I couldn’t make any sense of it – the message was clear, but I didn’t know how to relate to it. The next day, the same feeling happened again, so it was clear: don’t think about it too much, just feel it and follow it. So that’s what I did. You can read more about the realization and process of creating my tombstone from an earlier post I published on agebuzz.

The feelings that came from my gut have now provided me with a whole different foundation and flow for looking at my life. Based on this, I was able to turn to the big topic of my life – my dementia and what I should do in light of its continuing development. I now had a new lens for looking at my completion of life and death. With this, the second major direction came into my life.

“Create Your Tombstone” showed me what my life was planned to look like for as long as I was functional. It would be fulfilling to feel situations I’m in, and to bring my energies to make the situations richer for the people they touch, for as long as I was able. This is what I can bring into the world now, and how the world is different because I am here. That is my life. But as dementia develops, at a certain point, it stops my ability to do that. Dementia will also have other effects on me and on my family. Dementia changes you and even destroys you. Dementia affects the patient mentally, physically, emotionally, socially, financially, and in other ways, and often destroys the caregiving family in these ways and even more. As difficult as it is for a person to have dementia, I came to feel that dementia is harder for the family than it is for the patient.

This enormously tough situation is very real for me, and I first tried to lay out my choices of what I could do. One choice is quite common, that I simply avoid considering or planning for any particular action and leave it up to my family to take care of the situation when I’m not able. Another possibility was to lay out and explore the possible courses of action – care by my family at home, care by a support person at home, at home with care from a combination of family and support person, care at a care facility appropriate for my condition, ending my life by passive techniques such as VSED (Voluntarily Stopping Eating and Drinking), going to Switzerland to go through the medical aid in dying process available there, or actively ending my own life (suicide) using one of the methods for which information is readily available. I did this to see what information and experiences are available on each, with the goal of choosing the most appropriate path of action for me. During this process, I paid special attention to the approaches expressed in Jewish sources. Most of the Jewish sources state that Judaism is unequivocally opposed to suicide, but do not cite a direct statement of this among the 613 commandments of the Torah. Rather, these sources bring interpretations of things that are said in various verses, in particular “therefore choose life”  in Deuteronomy 30:19. I read this verse and for myself I came to the exact opposite conclusion: “I call heaven and earth to witness against you this day, that I have set before thee life and death, the blessing and the curse; therefore choose life, that thou mayest live, thou and thy seed.” This is not describing a simple black-and-white situation of don’t-kill-yourself, but rather takes into account considerations on the scope of heaven and earth, that my life and death are set as my choice, and that my choice should be that which leads to the most life among myself and my children. My understanding of this verse is that within the choice, if I end my own life and I feel this allows my children more life, or if I remain living and I feel this drastically lowers the lives of my children, that “therefore choose life” means to choose the first option, which results in more life.

I explored the options until I felt I had a good understanding of what each option meant and what the implications of each option were. This involved getting information from organizations in this area, conversations with people with expertise or experience, participating in groups or meetings on this topic, reading through some of the large amount of information on the internet, visits to care facilities and to funeral homes, and other sources that I felt may help me in making the choice that is most appropriate for me.  “Appropriate for me” very much took into account the whole process that I had been through since my initial encounter with dementia, and very much all the things/thoughts/feelings that happened during the “Create Your Tombstone” process. As I was making this decision, I very much felt that there is no right or wrong decision but rather the decision that I felt best fulfilled all of the considerations I had, and also that, even though I will have conversations with a wide variety of people, this decision is absolutely mine alone. Related to the decision being mine alone, although I may speak with many people, the decision as to how I will prepare, announce, and carry out my decision will be mine alone. As with many parts of my dementia, I feel and understand the world and myself differently from many other people, so I don’t expect them to relate to my situation in the same way that I do.

As of now, the choice I have made is to actively end my own life at some future time, based on considerations described above and others. Again, for me, “considerations” are within my balance of mind/thinking and guts/feeling, in which my feeling includes that I have passed the “golden moment” that dementia provided and my life is now moving toward the gray-black period of dementia, the impact that my living or dying will have on my family, my feeling that I’ve lived a wonderful life for which I feel very fulfilled, the great joy I have in seeing each of my children building their own life in the direction each wants, the many joys I will miss out on by ending my life relatively soon versus the terrible price there will be for waiting too long and not be capable of ending my life, and other feelings that I was glad to let rise and join in the flow of making this decision. Let me be clear: I also do not feel “locked in” to this decision and am open to changing it if I feel so. For example, I very much take to heart the situation that occurred in which a person had chosen to end his own life and was lying on the bed with the family all around, and the person only had to make one more movement with his hand to end his life. At that moment, the person said that no, he couldn’t go through with it, and at that literally “last moment,” the process was stopped, and the person did not end his own life.

Dementia – the choice that a person has in dealing with dementia is between difficult and horrible. What a person with dementia can do is talk about it, listen, think about it, feel about it, connect about it – face this challenge openly rather than being alone in this battle.

Wally Klatch, 71, was diagnosed with Early-Stage Dementia in October 2022. He received his undergraduate degree from Indiana University and his Master’s Degree in Management from Purdue University. He worked as a Management Consultant to large and mid-sized companies in the areas of Organization and Operations, and spent thirty years living in Israel. Since being diagnosed, his condition has been connected by several neurologists to different brain conditions, including Parkinson’s Disease and brain spikes, among others. While his thought functionality is declining, his emotional awareness has increased, and he maintains functionality even while his relationship to himself and to his world is shifting. If you have any questions or comments for Wally, please feel free to reach out to him through agebuzz editor Connie Zuckerman at [email protected].