Posted 11/11/22 (This date’s sequence brings me joy. 11+11=22)
“Everything that I command you, you shall be careful to do. You shall not add to it or take from it.” -Deut 12:32
Hi all! Happy Friday to each and every one of you! This month is flying by again! Next Tuesday is already Support Group Day! 🙂 Zoom and In-Person, back-to-back. I wish I had more time to do support groups! There is soooooooooooooooooooo much need. This was an early and often opinion in the Missouri Alzheimer’s Task Force meeting we were involved in this week. The common refrain:
- It is hard to always know where to find information.
- It is hard to ask questions.
- It is hard to find resources.
I completely get it. I was there myself not even a decade ago. I will try to more formally make this soon that I can print and mail out, but allow me to connect a few dots for you. 🙂
Information on the disease: 1-800-272-3900 is the Alzheimer’s Association 24/7 helpline. It is staffed my master’s level experts who will get you the info you need.
$700 (this year, Missouri) Respite Fund– Either call your local Alzheimer’s Association office or call the Help Line and they can transfer you to your care consultant to help.
Services and Information about general services to help– 24/7 Help Line AND your local Area Agency on Aging. Here is the link to find yours: LINK The Area Agencies on Aging can assist with filing taxes, navigating Medicare’s waters (in an unbiased, non-sales way), Medicaid, and much more.
Research information: The Science Hub app is a very good one. Android LINK or Apple LINK Also, any of the research facilities known as ADRCs: LINK There are other facilities that are good too, but I feel very good about this group!
Clinical Trials: Trial Match and the list of ADRCs. Trial match is like a dating site for finding a research study to partner with. 🙂 It will find the right one for you. I am coming up on 20 studies completed. 🙂 Most if not all were found through Trial Match.
Advocacy opportunities: Want to help educate our lawmakers about just how challenging this disease is? AIM is the Alzheimer’s Association’s advocacy wing. They are excellent!
Legal issues– Basic end-of-life, estate, power of attorney stuff the Toll Free Support line and the Area Agencies on Aging can certainly help. Beyond this, PLEASE contact a lawyer THAT SPECIALIZES IN ELDER LAW!. Sorry for the shouting. For one, they can help in preserving money from nursing home expenses. Second, and related: Medicaid-Approved Promissory Note and/or Medicaid-Approved Annuities. These two devices are practically unknown…and can save mountains of money.
Ramps– Sometimes people use the Missouri $700 care grant to help with these. If you are in Missouri, check with the Alzheimer’s Association care team. Some Area Agencies on Aging can help with this. Some Centers for Independent Living can help with this as well. (LINK)
Caregiving tips: Teepa Snow’s Positive Approach to Care: LINK Teepa is EXCELLENT and provides many, many free videos and some paid trainings too. Excellent.
Please put in the comments any other requests and I can add them to this page. 🙂
1+1=2. We are better off together sharing resources, friends. Please pass them on to me. 🙂
Update: Mom is about the same although hospice came by to reassess whether she qualified…. and was not feeling great about how she is. She is indeed doing worse since her bout with TIAs/seizures. But she is fighting. 🙂 I will keep fighting and I suspect you will as well. She is a wonderful lady, even now. I wish you could know her if you don’t…