CLEVELAND -- It was around 1981 when my mother first started showing changes in her behavior. At the time, we didn’t understand why she was acting differently. It was a full eight years later before she was diagnosed with Alzheimer’s disease.
Navigating health care for a loved one with Alzheimer’s was incredibly challenging back then. Sadly, decades later, not much has changed in how care is being delivered and how difficult it is to manage on behalf of someone you love.
During the last few decades, the number of people living with Alzheimer’s — and therefore, the number of loved ones who have struggled to navigate the system — has sharply increased. In Ohio alone, 442,000 caregivers provided nearly 600 million hours of unpaid care last year, as reported by the Alzheimer’s Association.
When I think about my time as a caregiver for my mother, it can largely be described as a long and challenging journey. My sister and I didn’t have anyone to help us create a plan of care or tell us about the possible treatments or support for our mother. Like so many others without any training, I had to become a stand-in social worker for her. I did research into her care, took her to an untold number of appointments and visited various nursing homes, because everything that I read told me that was where she would eventually end up.
My mother was a very strong and independent woman, and it was challenging to see her go through this. She was no longer taking care of her children; we were taking care of her. This transition was very emotional for us and for her, and we ended up making a lot of tough decisions on her behalf. Once the progression of the disease became too difficult for my sister and me to manage alone, we had to supplement her care through nursing homes for 11 years until she passed away.
This is my story, but I know there are millions of caregivers who face the same challenges that I did. Today, I volunteer to help other families dealing with Alzheimer’s disease by giving them support and guidance, including helping them navigate a loved one’s care. After all this time, there is still so much work that needs to be done to support loved ones who take on the responsibility of such complicated caregiving.
We are at a point today where dementia care can — and must — be improved. A new policy known as the Comprehensive Care for Alzheimer’s Act (S.1125/H.R.2517) can help.
This bipartisan legislation, endorsed by the Alzheimer’s Association, would address shortcomings in the way dementia care is delivered, reducing the burden on both caregivers and our health care system. This bill would do so by asking the Center for Medicare and Medicaid Innovation to implement a dementia care management model to test comprehensive care services, which would include a dementia care plan, care coordination and navigation, caregiver education and support, and access to an interdisciplinary team of providers. Legislation like this would have made a world of a difference in my life and will bring much-needed relief to today’s caregivers.
On behalf of the hundreds of thousands of Ohioans serving as caregivers in this moment — and the millions of us who have come before them — please join me in asking Sen. Sherrod Brown to support this transformative bill and make a difference in the lives of everyone affected by Alzheimer’s.
Deborah Cloud is a resident of Cleveland and a volunteer for the Cleveland Area Chapter of the Alzheimer’s Association - in conjunction with Olivet Institutional Baptist Church - in loving memory of her mother, Delia Mitchell, whom she lost in 2000 to the disease.
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December 26, 2021 at 05:18PM
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Sen. Brown, please support bipartisan reforms in how dementia care is delivered: Deborah Cloud - cleveland.com
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