When I became a caregiver for my father in 2003, I was only 33 years old.
I was the only caregiver I knew. My father had been diagnosed with Alzheimer’s, so I looked up my local chapter of the Alzheimer’s Association to see if they had a support group I could attend. I think I went one time but didn’t find much benefit in it, largely everyone was older than I was and couldn’t share quite the same experience that I was having.
A few years ago, my father was diagnosed more accurately with Lewy Body Dementia, which made more sense considering his symptoms and disease progression. While doing research on the disease, I found the Lewy Body Dementia Association, which is currently the largest organization focusing on LBD. It is devoted to providing information and support to the sufferers of LBD and their caregivers.
Inspired by the idea of helping other caregivers, I became one of the LBDA’s call counselors, speaking to caregivers across the country who had questions or concerns or who just needed a shoulder to cry on.
I also decided to start a support group for LBD caregivers in Seattle, and another in Everett, about forty minutes north of the city. I wanted to share my experiences, the tools and tricks I had learned during ten years of caregiving, and I wanted to foster fellowship among the people who need it the most – who are often isolated, stressed, and experiencing tough struggles.
It has been an amazing experience and I’ve learned a lot about what other caregivers deal with and about the strength and compassion that exists within most caregivers. My groups are mostly made up of wives of husbands with dementia, but there are a few adult children, as well.
With honesty and grace, my members share their stories and experiences, laying their struggles out in front of others.
I have been amazed at the similarities in people’s stories and needs. One thing that I have seen with my members is how important it is for them to be with other LBD caregivers. LBD is a unique form of dementia that can cause more behavioral issues than Alzheimer’s, as well as hallucinations, delusions, and aggression. I have watched how hearing similar stories from other LBD caregivers has helped my members release some of their grief, fear, stress, and confusion.
We also have some members whose loved ones have passed on, and I think it helps members to see that there is a light at the end of the tunnel – that there is an end to this long journey. Hearing their experiences as people who have already gone through the whole process is so helpful as well as aids current caregivers in avoiding the pitfalls and poor decisions that former caregivers made.
I am still the youngest caregiver I know but it comforts me to hear the stories of other caregivers who share my experiences, even though they are older. I think being in a support group is essential for caregivers and have witnessed the relief and ease of new group members at being around people who understand. I encourage all caregivers to find a group near them, or if there isn’t one, start one! You will be amazed at the friendship, fellowship, and comfort to be found.