Caring for sick loved one despite the isolation, heartache

Sandy Butler, University of Maine and Luisa Deprez, University of Southern Maine

Originally published in the Bangor Daily News on May 30, 2014.

Editor’s Note: In this monthly series, the authors introduce you to people who are apt to be your neighbors, are struggling to make ends meet and have been affected by specific state policies. To share your story, write to or call 581-2382.

Maureen Walsh of Bangor is a family caregiver — one of more than 42 million family caregivers in the country, two-thirds of whom are women. The AARP Public Policy Institute estimates the value of the unpaid work done by family caregivers at about $450 billion per year, accounting for more than 80 percent of the care received by community-dwelling older adults needing long-term care.

Maureen is also among the one in six Americans who not only take care of a loved one but also hold down a paying job. Many must make difficult decisions to balance caregiving and working: They may reduce work hours, take unpaid leave or retire early. Many others experience tremendous isolation and stress as they take on the role of caring for loved ones, helping them remain at home as long as possible.

Maureen’s story illustrates both the loneliness and resiliency that are frequently components of a caregiver’s life.

Maureen lives with her husband, Richard. They had been married only six years when his behavior started to become erratic. Richard, in his early 70s, had already retired when the symptoms started — mood swings, agitation and difficulty remembering words.

Maureen recalled, “At first, I just thought he was being a jerk.” But it was the problems with speaking that alerted her. “My father had died of a brain tumor and had aphasia, so I assumed Richard had a brain tumor.”

Getting a diagnosis for Richard, who has frontotemporal degeneration — a disease process that affects the frontal and temporal lobes of the brain — was not easy. Maureen recalled that Richard would rally when he went to see health care providers, and because the disease is not well known, she was accused of exaggerating his symptoms.

“They told me it was ‘pseudo’ and that it was my fault. I really had a hard time getting any kind of help. I think the medical system failed me like 100 percent.” She has since learned that this is not uncommon with this disease and that spouses are often told by health professionals they are the problem until there is an actual diagnosis.

Richard finally received a diagnosis and currently works with a geriatric psychiatrist in Bangor. While very satisfied with the doctor, Maureen’s experience with months of poor treatment and shaming left her wary of the medical establishment.

Maureen is connected with the national organization Association for Frontotemporal Degeneration, which has a toll-free helpline and sponsors support groups around the country, including one in Bangor at Acadia Hospital that Maureen attends and finds helpful. She also receives financial assistance for respite services through the federal Older Americans Act, administered by Area Agencies on Aging. Her respite worker connects well with Richard, allowing Maureen to continue to work 12 hours per week and take breaks from her caregiving role.

Maureen, not unlike many caregivers, finds her role as a caregiver both unexpected and difficult.

She said, “I really never thought about being a caregiver. I raised my son alone, but that is a totally different dynamic. You watch little things drop away, and it is very stressful because I am not a spring chicken anymore, and you get tired. And the isolation is punishing. And people don’t want to be around illness. No one has called in a long time or been to see him. When I took on this role of caregiver, I was not prepared for the loneliness and for the people you’ve known to suddenly disappear.”

Richard had a long career as a drug and alcohol counselor and helped many people in the community, Maureen says. But none of his old friends come to see him now. Richard had a twin brother, an important support to her and Richard, but he recently died. Maureen does receive support from telephone communication with one of her sisters who lives out of state. Richard’s daughter also lives out of state. And while Maureen receives considerable emotional support from her son who lives in North Carolina, his military career often finds him deployed outside the country.

She has found support in unexpected places. The young restaurant employees at Ruby Tuesdays have been very kind on the Thursday evenings they go there for dinner. She also feels supported in her quiet neighborhood where Richard can go out walking by himself: “The neighbors are very good to him. They always tell me they saw him out walking.”

But in general, Maureen feels very alone. She continues to work at Community Health and Counseling Services as a way to get out of the house and interact with people. Sometimes after Richard has gone to bed, she said she will go out to buy groceries, and while driving around she’ll look at people in restaurants and think, “Wow, I’d just like to go out to eat with a friend. But I don’t think I have any friends left. I have isolated myself.”

Both Maureen and Richard receive Social Security and Medicare, and Richard receives help through Maine’s Medicare Savings Program. Until this past January, the program paid his Medicare premiums, deductibles and co-pays, but recent cuts to that program have greatly reduced the assistance he receives. Maureen said that paying for health care has become much more difficult since that change.

She said, “It is very, very expensive when somebody is ill. There are always expenses that I don’t anticipate.”

She speaks with concern that people are not aware of these costs. “All the baby boomers just assume Medicare will pay for long-term care,” something that is not true. One only receives assistance with long-term care if one is very low-income and with minimal assets and thus eligible for Medicaid (MaineCare in Maine). Hesitant to spend down all her assets in order to become eligible for MaineCare, she said, “If you are not really wealthy or destitute, you are sort of in no man’s land, because there is no help available.”

Despite the isolation, the worry about health expenses and the frustration with the medical system, Maureen does all she can to bring fulfillment to her and her husband’s lives. She knows Richard enjoys being outside and watching nature. There is a bird feeder outside of the window next to the chair where he spends most of his days. They take long “nature drives” to visit lakes and parks. Maureen reads, watches movies and writes poetry, all of which help her to keep going.

As isolated as she feels, she admits that caring for her husband does give her life purpose. She said, “A lot of people, when they get to a certain age, feel invisible and like they don’t have a purpose. But [when you are a caregiver] you feel like you are doing something worthwhile. You might not like it, but you are doing something good. You have to keep going — sort of like raising a child.”

Sandy Butler is professor of social work and is the graduate program coordinator in the School of Social Work at the University of Maine. Luisa Deprez is professor and department chair of sociology and women and gender studies at the University of Southern Maine. They are members of the Maine Regional Network, part of the Scholars Strategy Network, which brings together scholars across the country to address public challenges and their policy implications.

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