“Nobody wants to be a dementia caregiver when they grow up,” says Kitty Norton in her new feature length documentary, Wine, Women, and Dementia, airing now on PBS. Many of us are thrust into the role of dementia caregiver, and similar to many things, there is no road map. The film sheds light on the emotional, physical, and financial toll of caregiving, offering a window into the lives of over 16 million unpaid family caregivers across the U.S.
Wine, Women, and Dementia explores the entire dementia journey, from diagnosis to the end-of-life, from the eyes of full-time caregivers. This film captures the unique perspective of those who are living with the heartbreak and stress, as well as the love and laughter of being there night and day for a loved one with dementia.
“Until There’s a Cure, There’s Community”
Kitty’s mom, Gloria, was diagnosed with vascular dementia in 2010. While her father vowed to keep her mother at home and take care of her until the day she died, he passed away suddenly of pancreatic cancer himself in 2016. Kitty and her sister took over their mom’s care, keeping her in her own home until the day she died. Kitty describes the experience as the toughest thing she had to endure with many fails and some successes along the way.
In a system that she believes offers few resources or support, Kitty describes how essential it is to find a dementia caregiving community, and to champion each other and learn from each other’s experiences. She sees connecting with others in similar situations and building community as something that is absolutely essential to her survival. In an effort to seek healing and comfort among other dementia caregivers, the film features Kitty swapping caregiver stories of love, humor, and devotion with other family caregivers who share a similar journey.
Kitty found that making connections and experiencing camaraderie with other dementia caregivers was what kept her going through it all, as there would be “no surviving the long journey if isolation, despair, and sorrow were the go-to emotions.” In the film, Kitty and other dementia caregivers came together virtually in their shared quest for strategies for themselves and their loved ones with dementia. According to Kitty, “(i)t’s a roadtrip connecting the disconnected – because until there’s a cure, there’s community.”
Kitty Decides to Meet Her “Caregiving Warriors” in Person
After her mother died in 2021, Kitty was so inspired by her experiences with the other dementia caregivers, that she decided to go on the road and meet them in person. Her goal was to film their collective “tales from the trenches” and capture their first-hand accounts of the laughter, despair, joy, and devotion. Kitty learned a lot from this journey, including that:
- There is an “indomitable spirit of human nature,” for both the caregiver and their loved one with dementia, that emerges throughout the caregiving journey.
- There is LIFE to be lived on the way to death. Though the stigma/fear of the dementia journey is typically centered around unrelenting pain and loss, there is some joy to be found in the experience.
- Alzheimer’s is such a sad subject, and yet there are moments that are pretty funny. Kitty describes how her mom would say and do things that were hilarious, and how she would share them with others who appreciated the stories.
- Connecting is so important for dementia caregivers, and it actually is vital, as Kitty describes it.
- Nearly 60 percent of caregivers rate the emotional stress of caregiving as high or very high.
- As many as 40 percent report symptoms of depression.
- Social isolation can lead to depression, memory and attention problems, heart disease, high blood pressure, and stroke.
- Social isolation was associated with about a 50 percent increased risk of dementia.
- Be gentle and compassionate with yourself. Find others to talk to regularly, who can provide support, educate you about the illness, and coach you on how to cope as it progresses.
- Be sure to pace yourself and rest when you can. Be sure to still make time for yourself.
- Sharing experiences can be a benefit to yourself and vital support for others on the same journey. In fact, significant quality of life improvements were found for caregivers who found camaraderie with others by telling their stories in support programs, with the rate of clinical depression also significantly lower.
With all that dementia caregiving took from Kitty, it also gave her the courage to lead the storytelling. That’s why she had a goal to make an entertaining and engaging film about dementia family caregiving and to share her story and the stories of others. She hopes to continue telling dementia tales until audiences have more compassion, less fear, and greater acceptance and support for the caregivers and those with dementia who may come into their lives. She also hopes that her fellow family caregivers everywhere “finally feel seen, heard, and celebrated.” Besides the film, Kitty also shares stories, experiences, and advice on her blog, “Stumped Town Dementia.”
Online Groups Where You Can Tell Your Story and Connect with Others
As of 2023, 1 in 5 American adults were providing care to a loved one with dementia, and similar to those in Kitty’s documentary, most feel a need for advice, support, and empathy. The following caregiver support groups are a great place to start if you’re new to caregiving, or if you’ve been providing care for a long time and need encouragement and connection:
- Daughterhood Circles. With almost a decade of personal interactions with family caregivers, Daughterhood Circles understands every step of caregiving and all of the emotions that come with it. They offer “circles” to connect with others that are free, virtual, and easily accessible.
- Memory People. Memory People is a private Facebook group that was created by Alzheimer’s patient Rick Phelps as a way for dementia patients and caregivers to share their stories and find understanding.
- Laugh, Cry, Scream, Rant, and Rave, but Never Give Up.This dementia caregivers support group is another private Facebook group that also supports caregivers of those affected by Alzheimer’s and dementia. It seeks “to stimulate conversation and ensure all members a safe haven in posting personal feelings.”
- Alzheimer’s and Dementia Caregivers Support Chat Group.This chat group supports friends, family, and caregivers of Alzheimer’s and dementia patients, where the members value brutal honesty and occasional humor during discussions.
- Dementia Caregivers Support Group. A dementia patient’s daughter-in-law, who also served as primary caregiver, created this dementia caregiver support group. Caregivers in this group — which now has almost 80,000 members — support each other by posting caregiving suggestions, ways to de-stress, and new discoveries in dementia treatments and preventions.
- Caring for Spouse with Dementia. This is a growing and helpful resource for those who are caregiving and also coming to terms with their spouse’s condition.
- Caregiver Support Community. Caregiver Support Community is a welcoming and supportive group intended for family caregivers. Before you join, the group asks you to share your caregiving story.
- Caring for Elderly Parents. The organizers of this group recognize that caring for your loved one with dementia may be one of the hardest situations you’ve ever faced. To ease this stress, the group gives members a place to ask questions, vent, or simply be heard.
- Working Daughter. Working Daughter is a space for “sandwich generation” women struggling to balance caregiving with a career and raising children. With more than 10,000 members, this group provides resources for women “searching for real world, practical answers” about juggling all of life’s responsibilities.
- Caregivers of Narcissistic Family Members. This support group is a safe place for caregivers to freely discuss the challenges of caring for a narcissistic family member. Group members provide suggestions and helpful tips to improve the health of both the caregiver as well as the senior loved one.
- Family Caregiver Alliance (FCA). FCA’s online caregiver support group focuses on family caregivers for patients with both physical and cognitive disorders such as Alzheimer’s, stroke, Parkinson’s, and brain injuries. It also offers forums for LGBTQ+ caregivers and young adult caregivers. According to the description, this group offers “a safe place to discuss the stresses, challenges, and rewards of providing care for a loved one.”
- Caregivers Connect. Caregivers Connect allows the voices of family caregivers to be heard. This support group aims to inspire caregivers and provide helpful resources to better care for senior loved ones. It welcomes new people and encourages members to invite anyone who may benefit from these discussions.
These are just a few of the caregiver support groups around the country. You can contact any major association such as the Alzheimer’s Association or the Parkinson’s Foundation or your local hospital system or even your personal physician to find additional support groups in your area,
People with Alzheimer’s and other forms of dementia and their families face special legal and financial needs. If you or a loved one have been diagnosed with dementia, it is prudent to start your planning as soon as possible. If you have not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past three to five years), now is a good time to plan and get prepared! Please contact us to make an appointment whenever you are ready:
Northern Virginia Elder Law Attorney: 703-691-1888
Fredericksburg, VA Estate Planning Attorney: 540-479-1435
Rockville, MD Alzheimer’s Planning Attorney: 301-519-8041
Annapolis, MD Elder Care Attorney: 410-372-4444
Washington, DC Medicaid Asset Protection Attorney: 202-587-2797
About Evan H Farr, CELA, CAP
