By Bethmarie Fahey
A little over a year ago I sat in my car staring at the raindrops hitting my windshield. I was trying to convince myself to get out, walk into the building and attend my first support group meeting for Alzheimer’s caregivers. It seemed easier, safer, to just turn around and go back home. I had been caring for my mother for the past 10 years or so. It’s hard to say when her journey away from us began. Probably long before any of us were willing to admit. But during the past five years it had progressed to the point where she needed daily care. In all that time, I had been the primary caregiver. I was finally ready to admit to myself, if not to others, that I needed help. I needed support.
I was raised to be independent. I had survived divorce, career changes and moves to the four corners of the U.S. I was known as the capable one in the family. The one ready and able to tackle any challenge and prevail, but I was drowning now. The amount of care my mom needed was overwhelming. I was uncertain what to do or say when she slipped into one of her delusional episodes. I was exhausted by the impact of sundowners and her aimless wanderings at night. I vented my anger, confusion, frustrations, tears and fears in the essays I wrote, but that I never sent anywhere. I needed more, but was this the right answer? I wouldn’t know until I stepped inside and tried.
There were about ten people in the room as I entered. I filled out the attendance sheet with my name and contact information, and then wrote my name in big letters on a paper name tent. Taking a seat, I looked around at the other attendees. There was a mix. It was mostly women, but there were a few men as well. Most were around my age or older. The group’s leader greeted me with a smile and welcomed me to the group. She announced that we’d get started shortly once a few more members arrived. Eventually we had about 15 or so people all seated around an open square. Many greeted each other as old friends, chatting away, giving short updates on how they were doing.
As the clock struck the hour, Alice, the group’s leader, suggested we get started. She announced that we had a new member participating and welcomed me again. There were genuine smiles and greetings from the various members as they turned to look at me. I froze, afraid that they would ask me to speak. Fortunately, Alice continued with a few announcements of upcoming events sponsored by the Alzheimer’s Association and passed around a series of articles on caring for someone with Alzheimer’s. Then she turned to the person next to her and asked him to update us all on how he was doing and if anything was new with his loved one.
I wondered what kind of information everyone would share. How open and honest would they be about the challenges of caring for a loved one with Alzheimer’s? Would they judge me as a bad daughter if I talked about how frustrated I was, and how at times, I wished Mom wasn’t home with me but somewhere else? Or that I longed for it to be someone else’s responsibility to get up in the middle of the night to coax her back to bed, or someone else fighting back the tears when she lashed out to hit me as I tried to help her? The woman I cared for daily was so far from the mother I cherished and loved to spend time with that she might as well have been a stranger. Would they understand me if I talked about my terror when one night she did fall and break a hip as she pulled on the locked front door, desperate to escape the man she insisted was there to kill us? Would they know what I should say when she demanded to be taken home, that this wasn’t her home and she needed to get home to cook dinner for the children. Or the devastating sadness when she looked right at me and asked where her daughter was. If I tried to tell her I was her daughter she would yell, “Liar!”
I listened as, one-by-one, each person told their story. Each was at a different place in the journey that is called Alzheimer’s. Some had partners who could still function in many ways. They were capable of going to adult day care centers for socialization. They talked about how that time, a few days a week, gave them, the caregiver, a small break to run errands, go for a walk, visit a friend or just sit in peace for a little while. Others had their loved ones in full-time care and only saw them on daily visits. They talked about the heartbreak of having to re-introduce themselves each time, and how they savored the moments when they were greeted with a smile and recognition. They shared new medications that seemed to offer some calm, or names of resources that provided a variety of services to support both the patient and the caregiver.
I became aware of two facts. One was that there was a commonality to all the stories and concerns expressed by the other caregivers. We were all on a similar path, just standing in different places at the moment. We each recognized either a place we once stood or discovered a new spot that we would soon travel to as well. The second fact was that there was no judgement, no critique of the caregiver’s actions or feelings. We all understood the rollercoaster of emotions we were experiencing on a daily, if not hourly, basis. This was a safe place to share, to lay out our fears, to seek support. Even though we knew there were no magic answers that would wipe all this misery away, we knew we weren’t alone. We weren’t adrift, we had each other to hold on to and together we formed a solid link to reality and safety.
When it was my turn to speak, I started out calmly giving my name and outlining my mother’s now 10-year decline into the depths of this horrid disease. I talked about how she used to be a vibrant, fun-loving person, fully engaged in a myriad of volunteer and social activities. How together we had traveled through Europe and around the U.S. visiting relatives, and just absorbing new sights and adventures. Tears started to flow silently down my face as I talked about the shell of a woman she was now. Confused about where she was and always looking for people long gone. I talked about dreading sundown when the night terrors would start and she’d sit yelling at the imagined people outside the window or frantically wandering the house trying to open the locked door because we had to get out, to escape. As everyone listened, the woman next to me quietly handed me a tissue from the box on the table and patted my shoulder. When I stopped there were tears in the eyes of several others around the table. Alice spoke gently, telling me that I was in the right place, and that she was so grateful that I had found them. “We are all here to support each other.”
I left after two hours of listening, sometimes laughing and occasionally sharing, feeling lightheaded. On the way out, many members patted my shoulder and encouraged me to come again next month. Alice, our intrepid leader, also said how she looked forward to seeing me again. I sat in the car trying to focus enough to safely drive home. For the first time in a very long time, I felt fully acknowledged and understood. Friends and family members were all very supportive and praised my devotion to caring for my mom, but with the exception of one aunt whose husband (my mother’s brother) also had Alzheimer’s, no one really knew the day-to-day, night-to-night, struggle of the disease. Mom and I had moved in with my brother and his wife when her care needs had increased, but they both worked full time and didn’t bear the same 24/7 burden I carried.
I returned the next month and the month after that, and onward to today. Each month I felt the almost tangible uplifting that the group provided. I heard more about everyone else’s trials and tribulations. I recognized some of the issues and could provide some insights into what was going on and what I had found helpful for coping. I learned new strategies for dealing with certain aspects of the disease from others who had already explored that part of the journey. I found solace in knowing I wasn’t alone and there were others on the same path – some in better condition, some not. I tried to provide comfort when someone was having a particularly bad month or had to make an extremely difficult decision such as deciding it was time to put their loved one in the hands of a competent care facility. These people became my friends. We didn’t see each other outside of the monthly group meeting, but when together, we shared a bond that transcended age, gender and economic status. We gave each other what few others could – the strength to go back home and continue to provide the best possible care for our loved ones while maintaining our own self-worth and sanity. Not an easy task in this situation.
Many months after joining, my mother passed away. She died peacefully at home. She’d had an opportunity to spend time during her last month with her remaining sibling, nieces and nephews, and her grandson and his wife. My brother, sister-in-law and I were at her side around the clock, holding her hand and telling her she was loved, but that we knew it was her time to go.
That next month I once again went to the group meeting. Again, I cried silent tears as I told everyone about her death. The room sat in silence as I read the eulogy I had prepared for her memorial, many with tears in their own eyes. They asked how they could help. What could they do for me? It was hard to find the words to tell them that they had already given me the best possible gift by being there in the past several months as her decline deepened. They had been the lighthouse on the hill that shone each night, letting me know that there was safety ahead. I could reach the shore and go on.
It’s been a few months and I continue to go to the monthly meetings, now held virtually because of COVID-19. I’m invested in the outcomes of their journeys, and hope that even though mine is complete, I can be a guide to those still traveling. Looking back, part of me wishes I had found them much sooner, when the dark days had started. Maybe I needed to experience those days to fully appreciate the power of a group like this to give strength when needed, a sympathetic ear to listen, and a voice of hard-earned wisdom to provide insight and ideas. There is so much power in a shared experience; if nothing else, to know you are not alone and there are others who understand that Alzheimer’s impacts far more than just the person diagnosed with the disease. I hope my experience encourages others to reach out, because there are hands that will reach back and bring you into the warmth of the group.
Support Groups are a great way to connect with those experiencing similar situations surrounding Alzheimer’s and dementia. Alzheimer’s Association support group meetings are free and open to unpaid caregivers, family members and individuals experiencing mild memory loss. Most of our in-person support groups are currently meeting virtually or over the phone, visit our website to learn more.