Alzheimer's: The importance of caregiver support groups and people who 'get it'
One of the greatest comforts I found along my mom’s Alzheimer’s journey was finding other people who “got it.” Over time I found my group, people who understood what I was going through because they had been through it or were going through it themselves. There is so much about dementia that can be hard to translate for the uninitiated.
I was extremely lucky that early on a kind co-worker connected me with Dementia Alliance of NC (at that time known as Alzheimer’s NC). I found resources and lovely professionals who could hold my hand as I started walking the tenuous path of supporting my Mom and Dad, keeping myself together, and helping my daughter grow a connection with her grandparents during a difficult transition.
As time went on, I found people. I had a couple of co-workers whose parents were at different stages of dementia. We compared notes and cheered each other on. One co-worker I had helped with resources for her mother in the early stages ended up including me in an online group for children of parents with dementia. That proved invaluable. If I needed to share something tough, I could post in our private group.
I reconnected with two high school classmates. When we moved Mom into memory care, a woman I had not seen in over 30 years made me immediately feel “ok” simply because she was a familiar face in a sea of unfamiliar-ness. Her Dad lived in Mom’s facility, so my dad and I bonded with her family. Another high school friend reached out after his mother’s diagnosis. We instantly became a key lifeline for each other. I could call him and ask questions I would not ask anyone else, about Mom’s eating or behavior, and he felt safe to share the same back to me because we had known and loved each other’s mom back in our school days.
Alicia found those same comforts as well. She found friends at school, and then teachers, who had a loved one who either had dementia or was in some kind of assisted living facility. When Alicia struggled to decide about seeing Mom in our family’s private open casket viewing, a beloved teacher who had lost both grandmothers to dementia helped her talk through it. That teacher’s understanding was invaluable to her.
One of the most important groups came at a most crucial time for me.
When Mom moved into memory care, her facility had a support group my dad and I attended together. I jokingly, but reverently, referred to one member as The PTA President. A staff member had the same first name, so it helped us differentiate about whom I was talking, but it was true. During lockdown she had started coordinating snacks and “thank yous” for the staff at the facility. This woman was the wonderful helper that my mom had been as PTA President at my and my brother’s schools.
I learned from Mom the importance of getting involved, people will want to help you if they know you and know you care and are willing to help, so I dove in headfirst at her memory care facility. It was fun because everyone we met in her Cottage was in our same boat. That Caregiver Support Group became a lifeline for me and Dad.
We also held hands with several of our caregiver friends as they lost their loved ones, and they in turn held ours when Mom passed. We have a bond with these people for whom I am so thankful and to whom I am so indebted.
I’m so grateful for the people along Mom’s journey, and those we continue to embrace as they embrace us. I’m glad to have people who can meet you where you are. We don’t even have to talk about Alzheimer’s. Just being in the presence of someone who understands can be so helpful.
Helpful Resources:
Andrea Osborne is Capitol Broadcasting Company’s director of content. She has daughter in high school and recently lost her mother who had been diagnosed with Alzheimer’s. She will be sharing her family’s journey here on WRAL’s family section.
