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The Power of Support Groups for Dementia

Please welcome guest blogger Bethmarie Fahey, a dementia caregiving survivor. She shares with us the importance of support groups for dementia and Alzheimer’s.

A little over a year ago I sat in my car staring at the raindrops hitting my windshield. I tried to convince myself to walk into the building and attend my first support group meeting for Alzheimer’s caregivers. I’d 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’ve been the primary caregiver. I was finally ready to admit to myself that I needed help. I needed support.

An Unexpected Journey

I was raised to be independent, 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. Exhausted by the impact of sundowners and her aimless wanderings at night, I vented my anger, confusion, frustrations, tears and fears in essays. Essays I never sent anywhere. I needed more, but was this the right answer?  I wouldn’t know until I stepped inside and tried.

Meeting the Group

There were about ten people in the room as I entered. Taking a seat, I looked around at the other attendees. 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. Eventually about 15 or so people were seated around an open square. Many greeted each other as old friends, chatting away casually.

When 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. She passed around several articles on caring for someone with Alzheimer’s. Then she turned to the person next to her. She asked him to update us all on how he was doing and if anything was new with his loved one.

Do I Fit In?

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? 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 that she might as well have been a stranger. Would they understand if I talked about my terror when one night she fell and broke a hip when 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’d look right at me and asked where her daughter was. If I tried to tell her I was her daughter she would yell, “Liar!”

The Moment of Truth

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.

Support Groups for Dementia Prove We Are Not Alone

I became aware of two facts. One was that there was a commonality to all the stories. We were all on a similar path, just standing in different places at the moment. The second 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.

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 absorbing new sights and adventures.

Where Support Groups for Dementia Help

Tears flowed silently when 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 escape. 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. 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 no one really knew the day-to-day, night-to-night, struggle of the disease. Mom and I moved in with my brother and his wife when her care needs increased, but they both worked full time and didn’t bear the same 24/7 burden I carried.

Learning New Skills

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. Listening to 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 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 don’t see each other outside of the monthly group meeting, but when together, we share 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.

The Last Step in the Support Groups for Dementia Journey

Many months after joining, my mother passed away. She died peacefully at home.

That next month I once again went to the group meeting. Again, I cried silent tears when I told everyone about her death. The room sat in silence when I read the eulogy I 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.

Looking back, part of me wishes I had found them much sooner, when the dark days started. Maybe I needed to experience those days to fully appreciate the power of a group like this. A group 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. 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. There are hands that will reach back and bring you into the warmth of the group.

For more support information, check out my resources page or reach out to the Alzheimer’s Association for more information on support groups for dementia.

About Bethmarie Fahey

For ten plus years I served as the primary caregiver for my mother as she slipped further into the depths of Alzheimer’s. I watched as she went from a vibrant retiree enjoying life and involved in local philanthropic activities, including serving as a board member and then president of local charity providing assistance to women and children, running the charity’s thrift shop and advocating on their behalf with local business leaders.

Over the years she required more and more hands-on care while I also juggled a full-time job. Fortunately, I worked from home. I had some flexibility to take her to doctors, oversee therapies, and just hold her hand when the darkness poured in. I learned first-hand that the journey of an Alzheimer’s patient is paved in anger, despair, frustration and occasional glimpses of awareness and joy. After her death I decided to share some of my experiences to hopefully provide some guidance to the many who are currently on this same path. Or at least let you know you are not alone. Someone understands.