By Deb Wells, Volunteer and Statistics Coordinator, Alzheimer’s Association of Colorado
Okay, I admit it. I was a support group junkie! When your loved one, at age 58, is diagnosed with a mysterious (to us) terminal, dementing illness, more information is better – and offers a bit of an emotional outlet. I attended three main support groups. Each had a different impact on me and my husband, as well as how we moved through the “journey” of Lewy Body Dementia.
Our first encounter with a support group came about six weeks after his diagnosis. I was desperate to find a place where John could connect with someone else going through the same thing. He was a different kind of male – quite unguarded, inclined to share his feelings, and open to learning from others. He so needed to talk with someone else who was in his situation. I reached out to the Alzheimer’s Association and learned there was a support group that met just a mile or so from us. I contacted the name on the listing and explained that I wanted my husband to meet others who were recently diagnosed. She arranged to have one of the other caregivers in the group bring her husband so John could chat with him.* We arrived and all was going as expected. Prior to the official start of the meeting John and his new compadre compared notes and had a nice chat. (*There are currently Alzheimer’s Association Early Stage support groups and social engagement activities that address the connection I was striving for with John.)
A Unique, But Scary Meeting
Then the meeting began with each person describing their current status: anything new, any questions or concerns. Other group members chimed in with their thoughts on situations or issues. Another new group member began by describing his wife’s illness. She had had a stroke, which was followed by a decline in cognitive abilities, along with new paranoia and violent tendencies. She was awake all night, suffering from delusions and acting out in new and surprising ways. He described a situation where he awoke and she wasn’t in bed. He went from room to room searching for her to no avail. As he moved into the bathroom, she leaped from behind the slightly closed door with a butcher knife in her hand, poised to attack him! He was able to get the weapon from her and calm her down, but not without great effort.
John and I both were affected by this story! I had no idea that dementia could manifest in this type of behavior, and John internalized the details so much that he talked about it for months afterward. He apologized repeatedly for anything he might do in the course of the disease. After learning more about symptoms and behaviors, I reassured him that this was a very rare situation, and that he might never display anything close to this type of behavior. As it turned out, in John’s 12 years of dealing with his illness, his behavior was just the opposite. He was kind, cooperative, collaborative and very appreciative of my care. Perhaps this incident imprinted on him in some way.
So, what did I learn from this episode? After attending more groups with this facilitator, it was clear that what we heard in that first meeting was an anomaly. In fact, I was associated with that group for 14 years (eventually as co-facilitator) and never heard another situation quite like that one. That extreme description of behavior could have put me off from ever attending another support group. Fortunately, the next day the facilitator called me to chat about the meeting, and assured me this was not the norm. Thankfully, I kept attending and learned more than I could have ever expected. Everyone’s situation was unique. I took the approach that I could learn something from every story. Some folks talked about caregiving needs and asked about resources that I could also immediately put into place. Others talked about their loved ones being placed in a care community (“would we ever need to do that?”). It was as if I was in an “Alzheimer’s 101” course and an advanced graduate seminar at the same time. Apply what is needed today and tuck away the nuggets of experience you’ll need for later on, I decided.
Early Onset Caregivers
A few years later a new type of group was introduced at the Alzheimer’s Association: Early Onset couples were screened and invited to begin attending a monthly meeting in the evening at the Association offices. The large group of caregivers and people with the diagnosis would initially meet in one group and go through introductions and receive updates on classes, events, etc. Then the caregivers and those diagnosed would separate to adjacent rooms for their support group meetings.**
(**This format has now been replaced by more targeted Early Stage support groups, followed by structured social engagement opportunities.)
Often we would hear peals of laughter coming from the next room – and sometimes from ours, as well! Groups help “normalize” those situations that we think are totally unique. I found great comfort in knowing that I’d have a bunch of eager listeners to my latest tale of absurdity, as did my peers.
John also got a great deal out of the group. He formed friendships with some of the others with a diagnosis. Most of the time the caregiver group was comprised mostly of women, probably due to their desire to reach out for resources for care, and a tendency toward “joining.”
I learned that we all needed to be attentive to everyone in the group. This format, unlike my first experience, was free-form. Participants shared randomly, rather than going person to person. As we neared the end of one of our meetings, the quietest person in the group that evening erupted in tears and was visibly distraught. We then decided that we should begin the meeting by asking if anyone had an urgent situation that needed to be discussed immediately.
Of course, over time people came and went. But there was a core group who bonded and formed great friendships. Some traveled together – so convenient to have a male caregiver with another caregiver’s husband who had the disease in situations like restroom visits, and likewise with the women. Many were at the ready if someone needed a substitute caregiver due to an appointment or after surgery. In my hubby’s final days in a residential assisted living home, five or six of my group members stopped by to be with me at such a tough time.
Lewy Body Support Group
The third group we attended was a Lewy Body Dementia support group. The Mayo Clinic confirmed my thoughts that John probably had this type of dementia, which has unique symptoms that really hit the mark for John. A new group was being formed in northern Colorado, and we were one of the first couples to join.
Caregivers and people diagnosed with Lewy Body Dementia were both included. Initially, it was planned that we would meet in separate rooms, but as the meetings progressed it seemed that everyone was comfortable with caregivers and those with a diagnosis meeting together. That didn’t stymie the conversation a bit. Over the years we talked about everything and anything – death, autopsies, driving, relationships…
A great deal of respect was shown among the participants, many of whom were early onset. We learned many new aspects of John’s probable future situation, including physical limitations from Parkinsonian symptoms.
As time went on, and complicated by a steep cognitive decline following surgery (although all precautions were made to avoid sedating substances), John ended up in a wheelchair. I left my career and spent many hours a day at the rehab facility. In fact, his decline was so severe, he was on hospice for a short time. Eventually, we turned things around and he looked forward to getting out to the support groups.
So, my key learnings about support groups are:
- If you attend one and don’t like it, try again. Try the same group the next month, or try another group.
- You’ll be asked to share to your comfort level. You won’t need to “be prepared.” This meeting is for you.
- Feel free to ask direct questions — if you need information, this is an opportunity to get the benefit of others’ experiences and resource ideas.
- If possible, include the person you’re caring for. It was one of the positive things in dealing with this disease for my loved one.
- It’s OK to laugh! You’ll find your unusual story will prompt the sharing of others, and this makes everyone more comfortable.