Posts Tagged "personal stories"

Every Caregiver’s Challenge is Unique

Caregivers for loved ones with dementia experience their duties in ways that are unique to the individuals they’re caring for.

Some wrestle with the behavioral issues of the people in their care, while others must balance caregiving and work or struggle to navigate the Medicaid system, line up day care, or track down a reliable in-home professional.

“There is no one way to care for a loved one who has dementia,” says Amy Goyer, caregiver and author of “Juggling Life, Work and Caregiving.”

Goyer feels that every caregiver’s perspective could be useful to someone else going through the same thing. She recently hosted a webinar that opened a window on the lives of three Pennsylvania caregivers – one for a father, one for a husband, and one for a partner’s mother.

The three women had a couple things in common, including the stress of shouldering the burden and the strain on their finances of paying for the all-day care that family members required, especially in the later stages of dementia.

But the similarities ended there. To understand the variety and depth of each person’s experience, there is no substitute for hearing directly from them in this webinar, which was sponsored by AARP, the Alzheimer’s Association, and the Pennsylvania Association of Area Agencies on Aging.

Here are snippets of their stories:

Robin Madison and her son, Morgan Madison

Robin Madison and her son, Morgan Madison.

Robin Madison’s husband had Lewy body dementia, and Madison had four jobs: wife, mother, breadwinner, and caregiver. Her husband was 18 years older, and she was fully aware that she might one day have to take care of him. On the good days, he could be entertained by playing music on his tablet or watching television for hours. But he was often ill-tempered and difficult to manage.

Madison described her seven years of caregiving as a “battle” – a battle to get a diagnosis, to work at home while her husband roamed the house, and to secure consistent end-of-life caregivers for her husband, who died last year.

In the final months of his life, he was receiving in-home hospice, which proposed sending him to a facility close to home – for $10,000 a month. Should Madison pay that bill or pay for college for her son, Morgan? “I had to choose my son and his future,” she said. The pair shared caregiving duties.

Madison stressed that it was important to get something positive out of a very difficult time. Her son decided they should donate his father’s brain to science “to help somebody else,” she said. Madison is grateful to have emerged from the experience with a stronger bond with her son. “All we had was each other,” she said. Turns out that was a lot to have.

Diane Powell’s family could not afford professional care for her mother and father either. But one of the hardest things for Powell and her sister, who shared caregiving duties, came early in their father’s dementia, when they were “trying to figure out what is wrong.” Something was clearly amiss when her father, who owned a trucking company, would get lost on the road and couldn’t remember how to get home. A family member would figure out where he was and drive there to guide him home. …Learn More