Dementia is a Two-Headed Snake

"Tell me about the time you saw the two-headed snake," I begged my grandmother.

Snuggling together on my double bed, grandmother would tell stories at night until I could no longer keep my eyes open. She told me about growing up on the plains of Kansas, her father’s general store, her courtship with my grandfather, becoming a farmer’s wife, and life on the farm.

But my favorite story was when she was exploring the nearby creek alone and spied a two-headed snake sunning itself on a rock. She was six-years-old and the year was 1915. Her siblings didn’t believe there was any such thing, and blamed the heat for her wild tale. I was intrigued, and could clearly picture that bicephalic serpent in my imagination.

When I was eight, my grandfather died; she stayed alone on the farm for a couple of years until the house was damaged by fire. After that, we helped her move into an apartment in nearby Williamsburg, Iowa. From then on, she would take turns spending a few weeks with each of her two daughters' families. I loved it when it was our turn, because then I had my storytelling nights with her.

During one of her visits she left our stove on, and my mother was very upset when she came home to discover this. I recall my grandmother banging her forehead with her hand and cursing her forgetful brain. She also could not remember if she had taken her medicine, so we got her a pill box set, her daily medications arranged into seven little compartments. Eventually these didn’t work because she could no longer recall the day of the week. To cope, she wrote down reminders, but got confused by all the contradictory notes she left to herself. After staying with us so she could avoid the Iowa winter, it became apparent that her memory difficulties were not ordinary age-related cognitive decline.

Unknown to us, my grandmother had Alzheimer's.

Brain cells — called neurons — have a cell body and a long thin extension coming out of it — the axon — with small little branched dentrite fingers at its end. The axon and dentrites allow the cell to touch and communicate with other cells. Like Grandma’s two-headed snake, there are two types of abnormalities, which are seen in brain cells when Alzheimer's is present, according to the Mayo Clinic. These are referred to as plaques and tangles. The plaques are clumps of beta-amyloid proteins, which seem to destroy brain cells. The neuron is nourished by a long internal protein called tau; in Alzheimer's the tau protein twists into abnormal tangles and no longer feeds the cell. Once a person is diagnosed with Alzheimer’s, the person typically lives another four to 20 years, with seven to eight being the average; during much of that time they require a caregiver.

A 2009 study by the National Alliance for Caregiving in collaboration with AARP found that 55 percent of caregivers feel caregiving is a physical strain, while 75 percent find it an emotional strain. Not surprisingly, Alzheimer's type dementia causes the most emotional strain.  

One of the frustrations of family caregiving is that you are rarely off duty. On top of that, as a caregiver, there is a huge learning curve. It requires learning about the diseases or conditions your loved one has, coordinating medical appointments and transportation, regular communication with health professionals, finding out how to adapt the home to make caregiving easier, learning how to operate equipment such as oxygen tanks, wheelchairs and glucose monitors, not to mention the ends and outs of insurance paperwork.

It is well known that caregivers are subject to burnout and depression, especially when watching your own parent decline. I was fortunate to intern at Coastside Adult Day Health Center (CADHC) a few years ago under Dawn Wolf, LMFT, Social Services Director. She understands this problem and offers free monthly family caregiver support groups as part of the Family Caregiver Support Program. The groups are open to all family caregivers.

"The caregivers are a great source of understanding and support to each other. They have taught me about the ‘profound loneliness,’ as one spouse put it, of losing a lifetime partner as they disappear behind some veil, and the ongoing challenges of taking over for a parent who is gradually declining. It is invaluable to sit in a room with other people who share a similar journey," says Wolf.

CADHC provides needed respite for caregivers as well as wonderful stimulation for the senior. Services include transportation, a hot lunch, medical monitoring by a RN, and a wide variety of activities that include current events discussions, art and music, and games.  Also included are physical, occupational and speech therapy, and an Alzheimer's program. 

The Family Caregiver Alliance states that caregivers are at increased risk for depression, chronic illness and a possible decline in quality of life. Caregivers report sleep deprivation, not eating well, and not exercising regularly; they also don't stay in bed when they are ill and fail to make medical appointments to tend to their own health. 

So what's the best thing a family caregiver can do to prevent burnout? Get others to share the burden — take time off. Respite from caregiving duties allows the caregiver to recharge. It is important to schedule some respite every week, even for a few hours. Time with friends, a hair appointment or manicure, taking a walk, and scheduling a massage are all ways for a caregiver to rejuvenate. If the person receiving care can have an outing with another person, the caregiver can enjoy time alone at home without the responsibility of caregiving on their shoulders. The trick is for caregivers to learn how to ask for and receive help.

I remember my mother and her sister often crying over my grandmother and worrying about how to handle the situation with its myriad of complications, from selling the farm, budgeting her money, taking over financial and medical decision-making to eventually realizing they could no longer handle her care, and placing her in a facility. In the 20 years my grandmother lived with Alzheimer's, she forgot our names and even how to talk. As the plaques and tangles continued their destruction at the end, her brain could no longer prompt her heart to continue beating.  

As we think about our own aging, we need to remember that being kind to our children will teach them to be kind to others, and to treat us with love and kindness when they care for us in return. As Garrison Keillor said, “Nothing you do for children is ever wasted.”

My grandmother eventually forgot about the two-headed snake and being hurt by her brothers and sisters who didn't believe her story. Five years after her death, National Geographic published an article about two-headed snakes. Though my grandmother was gone, I felt vindicated on her behalf reading it. And although snakes are not my favorite creatures, there was a sweetness in remembering that two-headed snake a Kansas girl once saw.  

Laura C. Strom, MS, LMFT, Licensed Marriage and Family Therapist MFC 49174, can be reached at 650-720-0912 or http://LauraCStrom.com