The Caregiver Trifecta: Empower Your Family
One of the things we know is that we don’t have a cure for Alzheimer’s and dementia, but we do have a cure for the loneliness that may come from a diagnosis, says Katie Brandt, MM, founder and CEO of Katie Brandt Advocacy, LLC. “I often have the opportunity to present to medical professionals, and one of the things I always tell them is that when you deliver a diagnosis of Alzheimer’s or a related dementia you are actually handing out two diagnoses. Being a caregiver of a loved one living with dementia is actually a threat to your physical, emotional and financial well-being.”
Few people have experienced this as acutely as Brandt did. Following numerous instances of unexplainable behavior, her 29-year-old husband was diagnosed with behavioral variant frontotemporal dementia (FTD). Four days later, her mother died unexpectedly of a heart attack in her sleep; and 17 days after that, her father was diagnosed with Alzheimer’s. She was 29. With an infant son.
Now, 15 years later, Brandt is the director of caregiver support services and public relations at Massachusetts General Hospital Frontotemporal Disorder Institute. The challenging journey of those in between years steered her from being a happily married wife and mother with a career in child welfare to this new role.
“I often say it wasn’t a job description but a love story that started me on my path toward this community and this very special work. I found myself at the age of 29 in charge of two adult men with progressive neurological disorders.”
She made the choice to leave her career.
“I had no predetermined date to return to work because I didn’t know what was ahead of me. Before Mike was diagnosed, I did not know that young people could get dementia.”
She lost her house to foreclosure, “spent every dime of my retirement savings” and ended up with benefits from local services, including food assistance, Social Security and Medicaid.
“It’s important to think of all the things that caregivers juggle. One of the things we know is that there are significant financial consequences to receiving a diagnosis of Alzheimer’s or related dementias and that financial consequences are even more significant for individuals who are living with a young-onset diagnosis because they’re at the prime of life, working fulltime, paying toward a home, and raising minor children. These are all things that when they’re disrupted have significant consequences that have future impact for the rest of people’s lives.”
Reaching out for help was essential. She created her own “Care Plan Trifecta” of support from the medical community, home community and patient advocacy community.
“How can you make a plan that keeps you and your loved ones at the center that focuses on your culture, your values, your goals of care, that keeps the person’s needs and dignity at the center of everything so you can maximize your quality of life and have new memories of joy?”
Her plan was threefold:
• The medical community: “It’s critically important that if your loved ones are experiencing cognitive changes, changes in behavior and personality that you find out what is causing those changes — dramatic brain injury? Alzheimer’s? Frontotemporal dementia? It will tell you how best to treat it. You want to find out what are the treatments and research options available and make sure all of your health care providers are connected.”
• The home community: This involves meeting with legal and financial planners, using local resources and turning to family and friends. “The home community is the most important because all the care doesn’t happen in the clinic.”
Every community in the country has an Area Agency on Aging offering service providers not only to the aged but to anyone diagnosed with dementia. “Call and ask for an evaluation. They will come to your home, evaluate what you and your loved one are eligible for, let you know how much it will cost — it’s often on a sliding scale — and then you can choose which supports you want. Everybody should have an evaluation and become connected with their local service agencies.”
For people without a loved one to care for them, Brandt recommends contacting the Aging Lifecare Association. “You can meet with a lifecare manager who can help you set up a person-centered care plan.”
• Patient advocacy community: “The Alzheimer’s Foundation of America is one of the organizations dedicated to providing education, resources and connections with families, so you don’t have to walk the journey of living with dementia alone. You get trusted information. I beg you, please do not partake in the midnight Google.”
Brandt recommends a book that resonated with her in her darkest days: Supersurvivors: The Surprising Link Between Suffering and Success by David B. Feldman, Ph.D., and Lee Daniel Kravetz.
She learned to look for and create small moments of happiness.
“Just because dementia has come into your life doesn’t mean that joy has to go out. I think a lot about how my expectations changed over time about what would be meaningful.”
Little things like visiting Mike in his skilled care facility with Noah and the three of them going for a walk and having a snack became special time and spending time in nature because “memory is not required when you’re in front of something awesome.
“I’d like to plant the seed that even though life may not look like what you think it’s going to look like, there’s still opportunity for love, connection, joy and happiness at every stage.”
“Just because dementia has come into your life doesn’t mean that joy has to go out. I think a lot about how my expectations changed over time about what would be meaningful.”
ADDITIONAL SOURCES
• National Academy of Elder Law Attorneys naela.org
• Area Agency on Aging eldercare.acl.gov
• National Hospice & Palliative Care Organization nhpco.org
Adapted from the AFA webinar “The Caregiver Trifecta: Empowering Families to Plan for Personhood, Dignity and Connection at Every Stage of Care.”