The Dilemma of Dementia Caring for the Caregivers: There Is Something You Can Do

  • Post published:June 5, 2024

Story by Cynthia Wall, LCSW

for Friends of Health on the Northern Mendocino Coast

In September 2023, Friends of Health sponsored a training designed by the Roslyn Carter Dementia Caregiver Foundation. We were flooded with fifty attendees, including both informal: i.e., family and friends, and formal caregivers, including fiduciaries, medical and psychotherapy personnel, and various agencies. At least that many more were asking to participate. The meeting shone a light on the crucial needs of caregivers, revealing both the devastating lack of services and useful information about the programs and in-home care that are available. The problem is immense and growing every year. People are hungry for information about connecting to existing services and are in need of an up-to-date list of relevant resources. One solution came from an attendee, a family member facing down this tunnel herself, who stepped forward to start an in-person self-help caregiver support group that meets twice a month in Mendocino. There are Zoom support groups sponsored by other organizations for those who cannot leave their loved ones, but nothing can substitute for a solid in-person support system.
“Loneliness” has gotten a lot of press since Covid hit our shores. It affects all ages and issues, but perhaps no one is as intensely affected by isolation and lack of support as people who are caring for loved ones at home, especially those whose charges have been brought to their knees by dementia, “the other epidemic.” Social and government services are not keeping up with the number of families experiencing this calamity, leaving individual caregivers to face the endless work with no scaffolding to support them. Families are far-flung and once-close circles dwindle when friends lose their ability to relate and remember. Visitors’ own fears of losing judgment and memory tend to keep them away. This kind of loneliness needs a special name.
Those who are committed to caring for someone with dementia find that they become increasingly trapped in a shrinking life—one in which they cannot safely leave their once highly capable loved ones alone for even an hour. Caregivers are losing a companion—be it a parent, partner, or good friend—as the dementia triggers anger, helplessness, and paranoia.This eliminates cooperation and meaningful conversation at a time when decisions critical to the survival of both parties must be made. Anxious and depressed, caregivers become exhausted, unable to socialize, go for a walk, or even leave home to work. It’s so stressful that nearly fifty percent of caregivers become seriously ill or die before the “real patient” passes on.
When considering hypothetical needs for dementia care, people have vague concepts of “moving into assisted living,” having a caregiver staying in the guest room to help with chores and respite, and ultimately, placement in a nursing home. This is not adequate long-term planning because the reality of these options is very often emotionally or financially unworkable. Many people in their sixties and seventies are now expected to care for elderly parents, siblings, their partner, or a friend. You probably know of someone in your circle who has been hit by it. It often begins with aging parents, close by or far away, who are no longer able to drive. They begin having physical problems that require treatment with hard-to-schedule specialists. When cognitive decline is added in, loved ones are suddenly not safe living on their own, and the situation too quickly devolves into twenty-four-hour vigilance for the caregiver.
It is a heartbreaking decision to move someone out of their home and it can drain retirement savings, forcing many to sell their homes in order to afford long-term care. I am not the only spouse who was advised to consider divorcing my husband of forty years when he began to show signs of dementia. A similar suggestion is to transfer ownership of a home to trusted relatives to save it for the surviving partner or children, in order to get limited government assistance. Otherwise, the spouse may need to drain precious retirement funds. Even presented gently, logically, and with compassion, it is a harsh statement to receive, and more legally complicated than most of us can imagine.
In-home support programs like Meals on Wheels, Friendly Visitors and Senior Peer Counseling, and part-time Alzheimer programs are lifelines in our community, thanks to the Redwood Coast Senior Center. But people in far flung areas cannot easily access them. Respite care, where someone who is trained and vetted comes into your home, is expensive ($25 to $45 per hour). Emergency respite, whether paid or performed by volunteers, doesn’t exist on the coast at all. In California, few counties can provide the range of resources we older folks grew up with. Public health nurses, social workers, and home care staff have been slashed due to the expenses of benefits/retirement funding. Especially missing is a dedicated “case management crew,” with sufficient Adult Protective Services staff who can refer to in-home medical and chore services, connect families to existing agencies, and maintain up-to-date lists of relevant resources.
Hospice Medicare Benefit services, where medical staff and social workers come to the home, can provide real help, and maybe a few volunteer hours for respite. BUT dementia alone doesn’t qualify someone for services: Patients must be diagnosed as “terminal” (with an additional disease), and two doctors have to assert that they have less than six months to live. The ultimate choice, the one we hear people insistently cite when they hear stories of others facing this dilemma, is “I won’t let that happen. I refuse to live that way.” But taking one’s own life, especially once confusion becomes a constant, isn’t easy, nor is it legally supported for those with dementia. It is shocking for many to learn that the End-of-Life or Aid-in-Dying Law (California implemented this in 2016) doesn’t apply to those with early cognitive problems. In all these ways, dementia becomes a life sentence for both patients and caregivers. We know, and perhaps have experienced ourselves, stories of years of diminishing function, during which a vibrant, capable adult slowly disappears, leaving caregivers in a state of burn-out, with no option but to give their own life and health over to this task of love.
I know this is a sad and frightening subject. But please don’t look away. Here is something you can do that will make a big difference: If you have a friend or family member who is experiencing this loss, remember that an occasional break and someone to listen can lighten this load. Be brave, call them, and ask if you can take a two-hour shift, even once a month. Go visit, bring lunch, offer a walk. It is relaxing and joyful for patients to see the ocean, walk in nature, or see children playing. Face your own fears while you are giving the caregiver a chance to see a friend, take a hike, get a haircut—the smallest respite from constant responsibility can make her or his day…or week. In the sad absence of other types of formal assistance, maybe you can be the one to bring in others who can offer this love in action. When we are seen, and a hand is reached out to help, we are not so alone.
For more information:
Email foh@mcn.org to learn more about the caregiver support group. It’s open to anyone who cares for someone with dementia. FOH sponsors and pays rent for this group two afternoons a month in Mendocino. Redwood Caregivers has Zoom support groups for those who cannot leave their loved ones.
Our next step? FOH appealed to the Community Foundation of Mendocino County for a grant to offer more networking and education about this topic, hopefully to encourage agencies and government to develop needed resources. We are planning a one-day forum on “The Dilemma of Dementia” on July 18 at the Caspar Community Center. It is open for sign-ups for community and professional caregivers to gather and learn from each other, paid for by a grant from the Jack and Chatter Bishoff funds. Sign up for our newsletter to keep informed: www.friendsofhealthmendocino.org

Other useful links:
Redwood Coast Senior Center https://www.rcscenter.org
Redwood Caregiver Resources Center https://www.redwoodcrc.org
Friends of Health on the Northern Mendocino Coast is an all volunteer service board, begun as Friends of Hospice in 1988. We are: Ann Conner, treasurer; Bruce Philp, family rep; Cynthia Wall, LCSW; Ellen Campbell, LVN; Emily Inwood, Fiduciary; Gin Kremen, DDS; Mary Flannery-Kraut, RN; Nancy Gardner-Gmeiner, volunteer. REM