Memory Week

 

The first week in March was Memory Week for the Alzheimer’s Association. Typically, we celebrate one day, Memory Day, and hundreds of Alzheimer’s advocates don purple sashes and share personal stories, Alzheimer’s facts and figures, and the legislation that we support.

Due to COVID-19 concerns, we did not make our in-person visits this year. On behalf of the 120,000 Missourians who are living with Alzheimer’s and their 319,000 caregivers, we asked our state senators and representatives for support of the following legislative issues:  

 1) Fund Alzheimer’s Grants for Respite: We asked them to support House Bill 10 (Department of Health and Senior Services) to maintain $450,000 for respite and care-related products. Ninety-nine percent of persons who receive respite care keep their loved ones at home longer. A two-month delay in placement could save the state more than $2 million in Medicaid nursing home care.

 2) Secure Initial Funding for the Structured Family Caregiver Waiver: Funding for this program is also included in House Bill 10 (Department of Health and Senior Services in the Division of Senior and Disabilities Budget.) Signed into law by Governor Mike Parson in 2019, the Structured Family Caregiver Act is an agency-directed model to ensure availability of cost effective choices for persons with dementia. The waiver was approved in February 2020 for an initial cap of 300 participants.

 3) Missouri Alzheimer’s State Plan Taskforce: The Taskforce will assess the challenges of Alzheimer’s disease and related dementia within the state and maintain an integrated state plan to overcome Alzheimer’s. HB 989 will update the 2010 plan through input from Missouri residents, integrated with latest research and best practices from other states. The Lt. Governor will chair the taskforce and deliver their report to the Governor and General Assembly no later than June 1, 2022.

 4) Transparency of Pandemic Reporting: In May 2020, the Alzheimer’s Association released a set of recommendations on improving the state and federal response to COVID-19 in long-term care facilities. Four specific items were recommended: (1) testing, (2) reporting, (3) surge activation, and (4) support. All cases of COVID-19 in these settings need to be reported immediately, accurately, and with transparency.

When Jim developed dementia, I was working full-time, and family caregivers, including his mother, watched him while I was at work. His caregiving became too difficult for his mother, and I hired professional caregivers to supplement family caregivers.

The only financial help I received when Jim was at home was respite funds through the Alzheimer’s Association. Home health care is expensive and although respite funds were limited, it was helpful. I would have loved to find quality day care for Jim. I found a place that watched him for a while, but when he took off for home with his guitar over his shoulder, they refused to take responsibility for him. Although I had to work through several issues with home health care workers, I was able to keep Jim at home for about six months longer.

Placing a loved one in long-term care has to be one of the most difficult decisions a caregiver and family have to make. When I made the heart-wrenching decision to put Jim in long-term care, my mind told me it was the best way to keep him safe, but my heart argued that I had failed.

Too often loved ones with Alzheimer’s outlive the primary caregiver. It is nearly impossible for one person to provide the level of care necessary for a person in the late stages of dementia without sacrificing the care partner’s health. I know now failure would have been to keep Jim at home after exhaustion and burnout kept me from being the best caregiver I could be. By putting Jim in long-term care, I had chosen the option that was best for him and for me.

Copyright © March 2021 by L.S. Fisher

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