Part Three: Connecting
In Part Two, Marie had an appointment with a neurologist, who gave her a diagnosis of dementia, most likely Alzheimer’s Disease. Marie was totally unfazed by it. I wish I could say the same for myself.
After the appointment ended, the doctor indicated that she wanted to see Marie again in about three months. After we selected a date for her next appointment and checked out, the staffer provided us with an envelope of materials about Alzheimer’s Disease, which included information about the Alzheimer’s Association and how to contact them. All the way home from the appointment, I kept repeating to myself, “what do we do now?,” “what do we do now?” I always depended on Marie to help with important decisions, such as this, and now I could no longer have her input. To her, nothing was wrong.
Alzheimer’s Disease was not totally unknown to me. My mother had had it. But since I had left my home town many years ago, my younger sister, who still lived there, looked after her. My role then was to visit as often as I could, and to provide my sister with as much support as she needed (usually via telephone calls when she hit the wall or needed help with a decision). This time, I was the primary caregiver. I will admit to you that I didn’t even begin to know where to start. It was a scary position to be in. I have no medical background or knowledge, no family close by, and the wide circle of friends that Marie and I accumulated in the DC area, many of whom were several years older than we were; had, over the years; relocated to accept jobs elsewhere; retired and moved to Florida, Arizona, or Rehoboth; and, sadly, a few had died. So, here we were, at a time when we needed support more than ever before, and we found ourselves nearly alone. And, unbeknownst to us at the time, we were about to be isolated even further as a result of COVID-19 and the restrictions put into place to stop its spread.
So, it was out of sheer desperation that I began devoting a good portion of my free time, what little there was of it, to reading the materials that had been given to us by the staff at the neurologist’s office. I must admit that I felt somewhat cast adrift. We would not see the neurologist again for three months. What if something happened in the meantime. What would I do? Who would I call? Fortunately, the neurologist’s staff had given me access to Marie’s patient portal account, where I could send messages and ask questions, if needed. That access was a comfort and proved most helpful later on, as I will discuss in the next part.
Essentially, during this phase of Marie’s illness (and that of your loved one), it’s important to learn as much as possible about the disease, who to reach out to for assistance, and to begin building a team to assist both your loved one and yourself as the disease progresses and more skilled help is needed. The first thing that I did was to access the Alzheimer’s Association’s website (alz.org) and immediately found and called their 24/7 helpline (800-272-3900). The woman who answered my call was very knowledgeable and helpful in getting me started in the right direction.
At the beginning, I reviewed the information on the Alzheimer’s Association’s website. Under the “Help and Support” section, there are e-learning workshops, a virtual library, and a section on LGBTQ community resources for dementia. The “Caregiving” section provides information on “Stages and Behaviors” and “Care Options.” And, under the Local Resources section I was able to find a support group that was only seven miles from my home. I contacted the group immediately and found that their next meeting was three weeks away (an eternity, but nonetheless, I found a group that was close by), and anxiously looked forward to attending their meetings, which were in-person at that time.
On the day of my first caregivers’ support group meeting, I arrived a bit early and took a seat in the circle of chairs that had been arranged in the meeting room. As the meeting began, there were around eight of us in attendance and we were asked to begin by introducing ourselves and telling the group a little about our caregiving situation. As I suspect is the case with most caregivers’ meetings, most of those present were either taking care of a parent or a spouse, and I was the only one from the LGBTQ community. When it came my turn to speak, I decided that honesty was the best policy. I gave them my real name (forgive me, I had considered not doing so), let them know that my spouse was a woman who had recently been diagnosed with Alzheimer’s Disease, and told them that until recently, I had known next to nothing about the disease, let alone caring for someone who had it, and was looking forward to learning a great deal from them. To my great delight, no one freaked out or left the room. In fact, they were very kind and welcoming.
Although our next caregivers’ meeting was scheduled to occur in a month’s time, within a few weeks of my first meeting, COVID-19 had reached a point where restrictions on meetings became necessary, and our next meeting was cancelled while the hosts determined options on how to move forward. The next month, we were sent an email with a link for a remote meeting and we continued meeting remotely thereafter. During that time, there was a core group of from six-to-eight members, who attended every month, four-to-six members, who attended periodically, as well as a one or two new individuals, who joined us each month. I learned quite a lot from this group of caregivers. Essentially, I learned (and was told by many individuals over time): “Everyone’s situation is different.” Though, I also noted that much of the journey that we travel is also the same, both from the perspective of the journey our loved ones are traveling and what we, their caregivers, are experiencing.
From what I have read and been told by the experts, most Alzheimer’s patients in the U.S. are diagnosed at about stage five of the seven stage course of the disease. At stage five and during later stages, our loved ones become increasingly more impaired. How we choose to care for them, is one of the most important and most difficult decisions a caregiver must make. In the next part, “Going it Alone,” I will describe the path that Marie and I followed, how it progressed, and, eventually, how it changed.
About this Story
This is the third part of our story intended to reach out to members of the LGBTQ community of Washington, DC and its suburbs. We want you to know that you are not alone, and that you and your loved ones are welcome here at Insight.
Activities & Engagement
"I like that IMCC focuses on dementia-related problems and provides a focal point for families to network and socially interact in coping with dementia. It provides a community that helps us in our struggle."