A Mindful Approach to Dementia & Psychedelics: Our Shared Journey Series - First Signs of Dementia - Your Gut Knows Something Is Wrong

It is with deep heartbreak that one of my dearest friends, a sister to me really, shares a few more details of things she first started noticing in her husband’s behavior around two years ago. Except this time, it seems more pronounced, more frequent, and more obvious. He is following a similar but different trajectory than my husband. One of the main differences is that my husband is now 78, and my sister-friend’s husband is in his mid-60s. Could it be Early-Onset Alzheimer’s? It is commonly defined as a form of Alzheimer’s diagnosed before age 65. One of my husband’s neurologists explained that she understands Early-Onset Alzheimer’s as a different disease from Alzheimer’s, a disease she has been medically treating throughout her professional career, which spans more than 40 years. There is much research, and so much will be learned, but for now, here we are….

It is the first time I now see part of my friendship as one of caregiver support to my sister-friend in her emerging understanding that she is already becoming a caregiver to her husband of 40+ years, who may be showing signs of dementia. I know it was and continues to be extremely helpful to me to have support from a dear friend who has tread this path before me. So here I am, letting my sister-friend know she always has me by her side and can call me at any time.

One of the reasons I offer this unconditional support is because those early years were so very lonely. They were also years of confusion. There are so many examples I could share, but here are a few that may resonate with others. One time, Henry spent an inordinate amount of time screwing a household item into the wall, and the result was that it was upside down, even though he said the task was completed and successful. Then there was the time he exposed one of our bank accounts by not taking certain security precautions. The most confusing was when we were involved in a major renovation that, theoretically, Henry wanted and was in charge of, and he just walked away during an important conversation with the contractor. I continued on as if nothing had happened (and from then on was in charge of the project, much to my dismay).

Then there were the years of social interaction: at dinner parties, with tennis friends, or visitors at our home. Henry would say awkward, unrelated, or just downright incorrect or illogical things. I would cover up, or with my sixth sense, I could tell he was veering off, so I would redirect the conversation. These were all ways of protecting “the truth.” Little did I know that at the same time, I was in a deep state of loneliness, trying to understand what was happening but knowing in my gut something was wrong.

I often asked myself during this time, “Why can’t I accept my husband with kindness, as he is, no matter what he says or does?” This was a big mindful contemplation in my daily mindfulness practice. As I sat with eyes closed, watching the breath, calming my mind, and getting to a deeper place of well-being, I knew I had it in me to be kind and caring. Yet… and yet… the frustration overtook me in what, at the time, was a solo journey in utter confusion.

I have reflected and talked to Henry about my behavior and reactions during this decade-long confusion. I’ll get to that in other posts, because confusion wrought many other behaviors… a loss of trust, being more argumentative when counteracting some of the information Henry shared or the way he described an event (inaccurately). That, and so many other things, can erode a marriage, sometimes to irreparable damage. Luckily, it did not do that to ours, but it did change the nature of our marriage. For me, it is the subtle but obvious shift from spouse to caregiver. There’s a lot to unpack around these issues in future posts, but today, I wanted to focus on the loneliness that may come from that initial knowing in your gut something is wrong.

So I review with my sister-friend if she is noting down the things she notices. Yes, she has been doing that now for some time. That was an important piece of advice someone gave me. It is usually hard for the person exhibiting the symptoms to recognize what is happening. Agreeing to get an MRI (and nowadays a simple blood test, PrecivityAD2, for Alzheimer’s), even just for a baseline, can take months if not years. It can be a long road, and this initial part of the journey is usually a lonely one.

I recently heard a minister at a Unitarian Church speak of the caregiver as part of the picture and decision-making. I totally agree. What affects one person affects the other—especially if it is a partnership, but also if it is children noticing these changes in one or both of their parents or an elder. It affects all involved. So, as a spouse now also caregiver, I have this lens, and so I advocate for everyone affected that your rights are 50% of the equation. For my sister-friend, I advocate that she avoid loneliness. I advocate that she can and should make requests—like the need for a diagnosis. It is respectful for her to know what the situation is. I advocate that they, as a couple, make decisions as a partnership. I advocate that they make informed choices if this is dementia. Certainly, knowing if this is dementia affects bucket lists, insurance or disability benefits, POAs, housing choices, and so many more considerations to figure out now for the future.

Mindfulness is a practice that, subtly over the years, turns the course of, in my case, a very reactive person, into one that can create space to ponder mindful contemplations. So rather than being reactive, there is a proactive nature to how I interact with the way things unfold. Perhaps this has been a central support in my journey as a spouse and caregiver to a husband with Alzheimer’s. One of the proactive choices I advocate for is to find support during what can be deep loneliness, especially in this initial (but often lengthy) phase of figuring it all out. I hope this blog can serve as a place for such support.

- Lauren Alderfer, PhD.