Posted 3-5-20
Yesterday marked the second time I have been blessed to attend Memory Day at our state’s capital in Jefferson City. I love to go to this event and hope to continue going yearly as long as they will have me. Not only is it a unique opportunity to try to share our stories with legislators, it is an excellent time to rub elbows with folks who know much more than I do about the disease. You see, I research like crazy, but I am still something of an arrow without the feathers sometimes. In my later years I have gotten better at restraint than I used to be, but there is still work to be done. 😉 In addition, I am a fixer at heart. I can’t “fix” mom in person, but, since I know my stepdad goes three times a day, I know she is cared for and this fact gives me some freedom to attack the problem from many angles. Advocacy is one of the many angles from which I approach this problem.
Our advocacy agenda was threefold:
- Respite: The request is to maintain the $450,000 figure this year to fund respite. For you that are unfamiliar, the word respite comes from the “Middle English from Old French respit, from Latin respectus (meaning) ‘refuge, consideration’. Deeper definitions include:
- A short period of rest or relief from something difficult or unpleasant.‘the refugee encampments will provide some respite from the suffering’in singular‘a brief respite from a dire food shortage’
- archaic Grant a delay or extension of time to; reprieve from death or execution.‘some poor criminal … from the gibbet or the wheel, respited for a day’
In our world, respite means having a little time off from the 36 hour day loving gibbet of full-time care for your loved one. $450,000 sounds like a huge number to us plebeians, but it really could easily use an extra couple zeroes given the costs of respite workers needed and the huge financial and human benefit of giving these unpaid family caregivers a break, but we are happy to have it and make excellent use of every cent.
- House Bill 1683: State plan task force. This would reconvene the task force to update legislators (and the public as a whole) as to the current state/scope of the problem and work to find solutions to the many-tentacled beast for our sufferers. The small, but extremely helpful task force would be diversely composed to include a wide range of professionals and leaders in the fight, but also include a family caregiver and a victim of early-onset dementia. Mutual understanding is critical in solutions and this task force will help. A provision that was added last night to the House bill that requires every county to have a support group as well. There are many places with no support group, which is quite sad. If you have time and a heart for this mess of a disease, go to volunteer.alz.org and create a profile there. At this site you will be able to see volunteer opportunities in your local chapter and many other useful items of interest.
- House Bill 2481 This bill mandates dementia-specific training for dementia/memory care workers. That mandate word is a sticker for some, but it shouldn’t be in this case. (BTW…I get it. I hate many mandates in governmental circles, and I really hated them when I was in business. However, sometimes they are absolutely necessary). The problem, in my mind as an observer, is nursing homes and skilled nursing facilities need very good employees…and often don’t have them/keep them. There is a core of amazing folks working at these places, doing 90% of the work while the rest come and go in a revolving door. Training will help that. Many, many of those leaving want to stay, but the stress of helping those with dementia while untrained in their special needs, make working in a different place very attractive. Turnover is expensive. Training can cost too, I won’t lie. However, if we really want the best care, train and keep these soldiers!
It was a great day. I met a few members of congress in person and talked to many wonderful, attentive legislative aids. Representative Stephens and Senator Crawford (covering my district in Polk County…see pictures below) were very nice to spend a little time with us and hear our concerns in between many appointments and floor sessions. They both appreciate and are super empathetic to our causes.
It will be interesting to see how these bills move forward over the next days and weeks.
The day concluded with wonderful speeches from Lieutenant Governor Mike Kehoe and from Linda Fisher, a wonderful advocate, Walk to End Alzheimer’s team leader, blogger and friend. Click on her name to read her blog, or you can find it in the Helpful Resources section of digitalcornbread.com .
What a day! Now back to the regular fight. 😉
#EndALZ
Update: All is still OK in mom’s situation. I will swing by and see her in a few hours.