Susan Desmarais recently retired as a Vineyard outreach worker. As a social worker, she is cognizant of privacy issues regarding confidentiality of her clients. What follows are her views on Alzheimer’s disease.

Ms. Desmarais began her career as an intern with the Island Counseling Center at Martha’s Vineyard Community Services and gained experience with Alzheimer’s caregiver support, working with elders and their families. College course work in the psychology of aging and family dynamics paid off in hands-on situations of real life on the Vineyard.

Her work focused on recently-diagnosed Alzheimer’s patients, early-stage candidates. The initial reaction of the client upon learning of an Alzheimer’s diagnosis was painful. “Most people know exactly what’s going to happen to them,” Ms. Desmarais said. Client concerns center on fear of becoming a burden on their family. “There is no way anyone with Alzheimer’s does not become a burden,” she said. “It is a long, lonely road.”

Anxiety and grief are challenges. “Try to imagine your own demise,” said Ms. Desmarais. “It takes great courage and bravery to face a terminal disease. Alzheimer’s robs a person of who they are — their mind.”

She has seen family members in her support network share their innermost thoughts and fears. “When the veils comes down, and you realize time is finite, sometimes there is clarity on what’s important. If you as a caregiver can be present with it, there can be very sweet moments.” But they are mere moments, she cautions, and short-lived.

One client struggled with sundown syndrome, in the late afternoon, when the family was busy with dinner. By chance, a family member gave her towels fresh from the dryer to fold. The client held a warm towel to her face, comforted by the fresh feel and smell, and it calmed her. Every afternoon afterwards, she was handed towels and it eased her agitation as the sun set.

Clients enjoy comfort in familiar tasks. One woman held a book, albeit upside down, in a familiar pose, a smile on her face, turning pages, at ease with the world for the moment. Often caregivers are so overwhelmed with providing care that it is difficult to cherish small moments of calm in their loved ones.

Ms. Desmarais wants to see more money spent to support caregivers. Alzheimer’s Services of Cape Cod and the Islands, a clearinghouse for information and resources on the disease, offers workshops for family members on stages of the disease, methods for coping and comfort.

Alzheimer’s can disrupt family dynamics. Ms. Desmarais witnessed a widowed Vineyarder with adult children off-Island. It had been a family tradition to vacation together for a week in the summer. When the client was diagnosed with Alzheimer’s, yet still at home with support, her children spread out their vacation time so someone would be with the woman for an extended time. This provided more family interaction with the client but broke up the routine of a traditional family vacation. The burden was shared, but family members lost their annual touchstone of being together.

No one wants to be a burden. Bathroom care is devastating. The loss of independence is hard. Hal Tilghman of Chappaquiddick, in a support group, shared his emotional bond with his wife and maintained an incredible presence throughout the disease process. He recognized the challenge was to meet his loved one where she was. Mr. Tilghman said: “Caring for someone with Alzheimer’s is like being nibbled to death by ducks.”

The danger of violence to oneself or others can lead to institutionalization. Caregivers may feel that marks failure; they wait to place the patient in a facility until exhaustion sets in. And without preplanning, institutionalization may be off-Island.

Elder Services and councils on aging work with clients with Alzheimer’s and their families, providing case management, advocacy and counseling. Caregiver support groups meet twice a month at Martha’s Vineyard Community Services. “The wonderful thing of living in a small community is people know each other,” Ms. Desmarais said. If someone acts inappropriately, a neighbor reaches out to Vineyard Nursing Association or Elder Services.

Family members should seek help before they think they need it. Giving care is tiring and lonely. A family member may be devastated when a loved one says, “Who are you?” Or, “You’re not my husband (wife).” “When it happens, it’s a sucker punch,” Ms. Desmaris said. This doesn’t mean your loved one doesn’t know or love you, only that they have lost the connection.

Alzheimer’s Services reports that most of their clients learn about their services through word of mouth. Services include a telephone support line, respite grants, community education programs and training for caregivers.

Stress can lead to health issues for the caregiver, who may feel overwhelmed by requests to update a health care proxy, obtain a living will or ascertain assets. Elder law advocates can offer advice on paperwork to assemble and a schedule of needs.

Caregiving is heroic. Give yourself the gift of a few minutes of quiet space, reading, walking, meditating or a cup of tea to center yourself. Caregivers tend not to ask for help, but friends love to be asked. If someone offers, accept. If you know a caregiver, give the gift of time. Nurture the caregiver.

The annual Miles of Memories Walk for Alzheimer’s Services is this Sunday, May 15. It steps off at noon from Ocean Park in Oak Bluffs, and runs down to Little Bridge and back, 2.7 miles. Registration is at 11 a.m. The goal of the walk is to raise awareness and funds for programs.

Join a Vineyard team online at or call 508-775-5656. Your participation is appreciated.

Gazette contributor Thomas Dresser lives in Oak Bluffs.