Adventures in caregiving

Family caregiving is tough work, and caring for someone with dementia involves its own special frustrations.

Too often, people with dementia spend their waking hours in a passive fog; too often, the caregiver is overworked and frustrated. For both the person with dementia and the caregiver, life can become deeply discouraging.

I know from trying to engage my mother and keep her active as her Alzheimer’s worsened how difficult it can be to find alternatives to passivity, stupor and a kind of restless fretting. Often, watching television becomes the easiest choice for what to do all day, though much of the time it merely masks the blankness of dementia.

There’s a tremendous amount of work involved in caregiving, and a lot of love. No two cases are exactly the same, of course, but family members caring for people with dementia can end up taking on a long list of responsibilities, from household chores, shopping and transportation to managing finances, supervising medications, helping move from room to room or from chair to standing, and managing all daily tasks like bathing, dressing, grooming, feeding and toileting.

My time spent with other family caregivers, especially my time listening to their caregiving stories, has been more rewarding than I ever would have imagined. I have been inspired by their quiet heroism, their loving dedication and their creative daily struggles to adapt to changing and unpredictable circumstances and to even find humor in them.

One woman, for example, is, like many of the caregivers I know, the sole caregiver for her spouse, so she’s with him nearly all the time, day and night. The nights are sometimes as challenging as the days: her husband resists her efforts to get him into bed, wears his shoes and jacket and even his sunglasses when he does go, gets up at night to urinate, waking her, and then sometimes uses the bathroom wastebasket instead of the commode. Some nights he refuses to get into bed and sleeps upright in a recliner she’s put by her bed; once, in the middle of the night, he ended up with the recliner on top of him and she had to call two people to get it off of him.

She has to dress him and wash him, sometimes more than once a day when he’s had problems with incontinence.

Off and on, he’s been surly and uncooperative with her, refuses to take medicines from her, has wandered at times, and lives in a fantasy world: “I was with 30 women last night,” he triumphantly announced one day. She has good days and bad days, has tried this and tried that, learning and adapting, and still manages to love him and to persevere philosophically. Despite her hard times and challenges, her warmth and laughter light up a room.

A man I know is the full-time caregiver for his wife; they are in their 70s. Once a woman who ran a business and kept her house meticulous, now she is completely passive and helpless, speaking hardly at all and only to parrot the words just said to her. Without complaint, he gets her out of bed, bathes her, dresses her, cooks for her and feeds her, like one would a small child. He takes her with him shopping — she’s agreeable and always does as he asks — and to meetings and to visit friends.

When she fell and hurt herself back before the holidays and was in rehab for months, his only wish was for things to return to normal, to have her home so he could take care of her 24/7 again.

My experiences over the past year working for Aging Together taught me how crucial it is that we develop new programs to support family caregivers like these. The Alzheimer’s Association estimates that there are 130,000 people with Alzheimer’s disease in Virginia, up from 100,000 in 2000, and projects that because of our aging population there will be 160,000 cases in 2015.

Having the chance to know caregivers like these makes my new job very rewarding. Connections, a free new program I’m delighted to be a part of, is designed to help family caregivers engage their loved ones in meaningful, satisfying activities.

The Adminstration on Aging, the Alzheimer’s Association Central and Western Virginia Chapter, the University of Virginia, the Rappahannock-Rapidan Community Services Board-Area Agency on Aging (RRCSB-AAA) and Aging Together have brought the Connections model, an innovative evidence-informed intervention, to individuals with Alzheimer’s disease and related disorders and their family caregivers in rural central Virginia. Connections is funded by a grant from the Department of Aging and administered by the RRCSB-AAA.

People with any level of dementia can participate; no formal diagnosis of dementia is necessary.

The small Connections team tasked with carrying this free program throughout Rappahannock, Fauquier, Culpeper, Madison and Orange counties hopes to reach 250 families over the next year and a half.

Having the Connections program available to local caregivers is exciting to me because it is both creative and commonsensical in its dedication to supporting caregivers in developing satisfying and therapeutic activities for their loved ones with dementia.

As Connections resource specialists, my colleagues and I will be visiting local caregiving families once a week for eight weeks. What we’ll do first is get to know the person with dementia and learn, especially, about their interests before they developed Alzheimer’s or other dementia. What did they most enjoy doing? What were their hobbies? What did they do for work and what interested them most about that?

We’ll also be evaluating their cognitive abilities. Then we’ll work with the family to plan activities based on those interests, activities the person with dementia can engage in and enjoy, given the necessary support.

It’s a wonderful opportunity to meet a lot of amazing, wonderful people — both caregivers and those with dementia — and help them make their lives a bit easier, more stress-free and, I hope, more satisfying. When my colleagues and I finish our eight-week program, families will carry on, using the Connections “toolkit” manual to continue adapting activities for their family member.

Connections was developed by Ellen Phipps, a certified therapeutic recreation specialist with the Alzheimer’s Association. A few years ago, she helped train UVA nursing students in supporting families facing dementia, and the students reported back on how critical a need they found among caregivers for ideas about what to do all day, day after day, with the people they cared for.

As she says, “Caregivers with the best intentions were often at a loss for how to interact with the person who was once completely independent . . . Time and again the results pointed to the same need across all families regardless of socio-economic status: How to engage persons with the diagnosis in meaningful activities.”

Phipps worked with Barbara Braddock of the Curry School of Education at the University of Virginia, who had become interested in educating caregivers coping with someone’s memory loss. The set of ideas they developed became the basis for a pilot program that sent UVA communication students into homes where families were caring for dementia victims.

Three fields of practice contribute to the Connections approach to creating positive, enriching experiences for those with dementia: therapeutic recreation, Montessori-based dementia programming and cognitive intervention. These are combined into a step-by-step curriculum that focuses on an individual’s past interests and current strengths and which uses Montessori-like activity centers to facilitate engagement. The goal is to improve quality of life for everyone.

Jane Dalton is the Connections project manager. After a career in the U.S. Navy, she and her husband retired and moved full-time to Madison County in 2008. As the project manager, she has an opportunity to work in an entirely different field, but one in which she has held a long-term interest, as her father was diagnosed with Alzheimer’s disease in his early 60s and died of the disease about 10 years later.

Nancy Soule and Valarie Diamond, my fellow Connections resource specialists, have decades of combined experience in nursing, home health, and hospice care. Nancy worked as a registered nurse in hospitals, nursing homes, and on private duty for 15 years and then for Family Care Home Health & Hospice for another 14 years. Valarie trained at a geriatric/psychiatric hospital and became an LPN in 1969; after earning a degree in business administration and marketing, she returned to medicine as a marketing and admissions administrator at Culpeper Baptist Retirement Community and then worked in marketing for Hospice of the Rapidan and HomeInstead before coming to Connections.

For myself, I come to Connections after moving from schoolteacher to family caregiver, hospice volunteer and then Aging Together resource specialist in Rappahannock and Fauquier. Following some training from the Alzheimer’s Association, I also help run a family caregivers support group in Sperryville, an all-volunteer local effort that also provides respite care during meeting times.

My colleagues and I are looking forward to visiting the homes and making the acquaintances of many more family caregivers, taking the time and opportunity to get to know them, hear their stories, and help them create new, satisfying activities for their loved ones. Heaven knows, they deserve all the help they can get, and help is usually in short supply. Many of these people are on their own to a degree few of us can imagine.

I hope no family misses out who needs our help; I know there are lots of families out there who do, on quiet farms on back roads in Rappahannock and Madison and Orange or in downtown apartment complexes in Culpeper and Warrenton. If you know someone caring for someone with dementia, please tell them about this free new program, show them this article, and encourage them to call the Community Services Board.

Larry Stillwell is a resource specialist with Connections, a project of the Rappahannock-Rapidan Community Services Board. RRCSB is a regional organization offering a comprehensive array of behavioral health, intellectual disability, substance use disorder and aging services in Rappahannock and nearby counties to improve the quality of life of local citizens. Visit rrcsb.org for more information. For more on the Connections project, call Jane Dalton at 540-825-3100, extension 3476.