Sunday, March 3, 2019

Memory Day 2019

The typical Missouri weather forecast called for a possibility of ice on Memory Day. The night before, Jessica and I held a text discussion trying to decide how early we had to leave to make it to the Capitol on time. To complicate things, the Capitol Building was undergoing renovations and only one entrance was open.

My husband watched me busily texting, as I told him the various times under consideration. “Well, we decided to leave at 8:00,” I said.

After I put the phone down, he asked, “Where are you meeting?”

“Well, since we didn’t decide anything different, I assume we will meet at the same place we meet every year.”

About that time, Jessica sent another message. “We didn’t decide where we were meeting.”

After all our weather worries, the ice stayed away, and we had an uneventful trip to the Capitol. Soon we met with other purple clad advocates. We made new friends and reunited with advocates we had met previously. Several hugs later, we split up into teams to visit our senators and representatives. Jessica, Mark, Samantha, and I donned our purple sashes, put on our figurative advocacy hats, and set off to keep our appointments.

We had two asks this year: Fund Alzheimer’s Grants for Respite and Pass the Structured Family Caregiver Act. It was easy for me to support both bills wholeheartedly.

Every caregiver needs time away to refresh and rejuvenate. The state of Missouri has awarded $450,000 in Alzheimer’s Grants for respite for several years in the past, and we asked for the same amount again. Of the Missourians receiving respite funds, 99% report they can keep their loved one at home longer. By delaying nursing home placement by a mere two months, the state could save $2 million in Medicaid costs. What a deal!

We also asked our legislators to pass the Structured Family Caregiver Act. This pilot program offers a new option under Medicaid for full-time caregivers. The caregiver would have the support of an in-home agency that would provide professional support. The family would receive care planning, training, remote monitoring, and monthly visits. The caregiver would receive a daily stipend to help relieve financial hardship. The goal of this program is to keep persons with Alzheimer’s and related dementia at home rather than in nursing homes. The cost to the state would be about half the cost of a long-term care facility.

Alzheimer’s is the most expensive disease in America for both the government and the families who care for loved ones with the disease. The cost of incontinent supplies alone would strain the budget of a Medicaid eligible household. Imagine the plight of a low-income family dealing with a high cost disease.

At the end of our visits, we attended the Memory Day Ceremony in the Rotunda. Governor Parson talked about his personal experience with Alzheimer’s and pledged his support. Advocate Terri Walker spoke about receiving her diagnosis on her grandson’s birthday. Her well-spoken words had the power to touch our hearts. Her youth, sparkling eyes, fabulous haircut, and lovely purple dress served well to strip away any preconceived stereotypes of the face of Alzheimer’s.  

Families dealing with Alzheimer’s need our support, our hugs, and our advocacy. Until we find a cure for Alzheimer’s, I will continue to join other committed advocates at the Missouri Capitol and on Capitol Hill in Washington, D.C.

Copyright © March 2019 by L.S. Fisher

1 comment:

Keith Moreland said...

We are going to our state house (South Carolina) on 4/10/19. I was diagnosed with Early Onset last June, so all of this is new to me. I've tried to be an advocate by speaking to audiences when i get the chance and I write my own blog about my journey. We will also be asking for our legislators to provide more funding for caregivers. I'm lucky that I don't need constant care yet so it allows my wife to continue to run her consignment business, which is her passion. Thanks for writing about your experience with your visit. They have provided us with a video and printed material to review to be ready for our visit. The more we can tell people, the more they will know. I'm sure there are more people like me out there somewhere, I just have to find them. We have a great connections group with our local alz chapter that provides activities several times a month, so it gives me the chance to have fun with others locally who are going through the same things. I wish you all the best in your blog.