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.

Visit LBDA or Joy in Caregiving for more information.

Written by Joy Walker
I started my journey as a caregiver advocate ten years ago, when I made the difficult decision to move in with my father to be his part-time caregiver. At the time, we thought he was suffering from Alzheimer's disease, but it never quite seemed to fit the symptoms and behaviors he was showing. Ultimately, we would receive a diagnosis of Lewy Body Dementia, which was where my interest in the disease began. I am a hospice worker, bereavement counselor, caregiver advocate, LBD support counselor, and caremanager for my father. I am also a writer, whose main focus is writing about caregiving, dementia, aging, and end of life issues. In 2011, I published a memoir about my experiences with Dad; I maintain an award-winning blog; I have published essays in two anthologies; and have written articles for other websites. My hopes for this site are to bring together all the elements of my work and vocation in one place. I strive to provide the most comprehensive and up-to-date resources and information, and the most helpful support and empathy to caregivers and people living with dementia. I invite you to investigate my site, check out the links, and read my award-winning blog, in order to find exactly the resource you are looking for.

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2 Comments

  1. I just lost my Mom last Friday. I have no idea, not a clue, where to go from here….I don’t know how not to.have a Mom. I lived with her, and I would like to think I did her proud by caring for her. I am lost.

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  2. How many of you are, or have been caregivers, looking after an elderly parent or a loved one with end stage disease ? This is probably one of the most difficult things that you have ever had to or will cope with in your lifetime. Caring for someone you love and watching them fade away a little more each day is an emotional nightmare. Our focus has to be on the people we are looking after, it is their wants and their needs that have to be met at a crucial time in their life, in a most caring and compassionate way. Yet, looking after someone’s emotional, physical and medical needs on a daily basis is a tall order and not for the faint of heart. Occasionally, one might receive a day or an afternoon of respite, and that is wonderful, but as the person responsible, the one who is there day in and day out, the one for whom there is no escape, being a caregiver can be overwhelming. Caregivers truly are the hidden victims. Many look after their loved ones everyday while balancing work, children and home responsibilities. Trying to maintain this balancing act can initiate stress and illness in the caregiver. Speaking from experience, it can be very difficult trying to keep everyone happy. I looked after my own dear Mom who suffered with end stage lung disease, and I tried to provide her with all the love and support I possibly could. She had been on oxygen for 13 years and faced her illness very bravely. I fought hard to be positive for both of us, to calm her worries and I would gladly do it all over again in a heartbeat. I suffer with an autoimmune disease, Rheumatoid Arthritis, and there were times I felt like my body was letting both of us down. In the later stages of Mom’s illness (Lupus and Progressive Sjogrens of the lung) it was a tumultuous roller coaster ride. We had some better days, and we celebrated those days together, and not so good days, that left me in anguish, in panic and an inner turmoil that I find hard to describe. My heart would not accept what my mind already knew. There were days I felt like running away from the heartbreak I knew was coming but I had to face it, I had to pretend that everything was going to be ok, I was the caregiver.

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