Joanna Baker knows firsthand what it’s like to serve as caregiver to both of her aging parents, Dorthie, an 84-year-old mother with Alzheimer’s disease, and Ed, her 92-year old father.
As an only child, she bears all the responsibility for the care of her parents. She worked to relocate them from Florida five years ago after monitoring their bank and credit card activity from afar only discover that her parents were only eating one meal per day at a restaurant. She also received reports from visitors and family friends that a power outage her mother ascribed to a storm was actually the result of non-payment of a utility bill.
Joanna is fortunate that as her role shifted from daughter to caregiver, she was fully retired from the corporate world and had time to learn about the disease and its progression. She researched and toured a variety of long-term living facilities near her home to understand all the local options. She had the means to travel to Florida during the transition to work with local geriatricians and her parents’ primary care physicians who had missed her mother’s worsening condition. And, she helped pack up their belongings to prepare for their move.
But, she’s also been forced to make difficult decisions that no daughter wishes to make. Working long-distance with her parents’ physicians and the assistance of a Geriatric Care Manager to have her parents’ drivers’ licenses revoked and eventually she had to separate them to different care facilities because her mother needed more care and supervision than her father. She describes her parents’ love for one another like a scene out of the film, “The Notebook”, where they could be found lying in bed, giggling and answering each other’s nonsensical questions. She knows that they miss waking up beside one another each day.
“It’s a profound responsibility to choose what will and what will not be done for someone you love,” says Joanna. “I remind myself that I am doing the best I can, and that my mom had trusted me to make decisions on her behalf in the event she could no longer speak for herself.”
Though Joanna never formally had The Conversation with her mother about her end-of-life care wishes, she looks for signals and clues from her mom while tapping into what she knows about her values. Dorothie doesn’t like the sensation of having the blood pressure cuff close around her arm. She didn’t enjoy getting the flu shot last year, and for a time she resisted taking showers. To Joanna, they are signs that less invasive care is what her mom wants and needs at this point in her life.
“My mom has always been really clear about who she is and what her boundaries are,” says Joanna. “She’s not to be messed with, and I have to respect that.”
But for families without this level of closeness and insight, caregivers and decision makers can feel isolated, guilty, and uncertain about the decisions they are making on their loved one’s behalf.
Alleviating some of this burden is the goal of The Conversation Project. After its flagship resource, the Conversation Starter Kit, became widely used by health care professionals and families, nonprofit officials began receiving requests for a guide specifically designed to help those affected by Alzheimer’s disease and other forms of dementia.
“We responded eagerly because we, too, have had personal experiences caring for family members with Alzheimer’s disease,” says Ellen Goodman, Pulitzer Prize-winning journalist and founder of The Conversation Project. “We appreciate the difficulty and the importance of having these conversations and collaborated with caregivers, social workers, geriatricians, and experts to bring forth a guide to help ease families into this topic. We hope this new resource helps caregivers begin these talks in the early stages of decline. It’s always too soon — until it’s too late.”
Families caring for loved ones with cognitive impairments face special challenges as they are left to make critical decisions on their own, as the person with Alzheimer’s or dementia declines and are no longer able to speak for themselves. The Starter Kit, Alzheimer’s disease and other forms of dementia, is the first of its kind and available for download on the organization’s website. It provides questions that can help caregivers navigate the approach to the conversation based on the cognitive level of the impaired person and can also guide decision making even if the illness is so advanced that the loved one has lost the ability to communicate.
“Ultimately, the conversation has to start with families because medical professionals are overwhelmed and are programmed to routines,” says Joanna. “But it can’t be routine when it comes to your family. In my experience, medical providers appreciate the family being prepared and knowing what their loved one wants. Helping my parents live well to the end is a gift for all of us.”
Please share this story with loved ones, colleagues and friends who could benefit from the Alzheimer’s disease and other forms of Dementia Starter Kit. Have something to add? Have a question about getting started? Please comment below – we’d love to hear from you.
I use so many of your tools when speaking to people about the importance of Advance Care Planning Directives and POSLT in my hospice work. There is so much need, for those impacted by Dementia, for information, any information. I am grateful for having this to now share. My own mother died with Alzheimer’s. I remember how helpless that can feel to a caregiver. Thank you for these wonderful resources.
Jill