Posted 10-16-19
I had a really nice visit recently with a friend who was just diagnosed with a form of dementia. I was able to recall some an article I wrote some time ago about the topic in the conversation, but I would like to touch on the topic again today for him and for you. First, here was the article posted 2 months ago:
Here are some added thoughts about the article and other ideas:
- Just a note of reminder: Second opinions are still never a bad idea even if you have a great doctor. Lots of issues look like dementia (see the August article above)
- SeniorAge and perhaps other Area Agencies on Aging throughout the country often offer stress management courses for caregivers. The early stage may not highlight the need for this as much as later stages, but it is best to get ready while things are comparably easier. SeniorAge used a wonderful program called Stress Busting for caregivers. These are free and very helpful.
- Spend some time studying Teepa Snow’s care giving tips. Here is her YouTube channel. She has a very positive strategy in care giving and her videos are very useful to many, many people.
- As much as it is useful to study the disease online, know that every case is different. Manage the disease, but don’t dwell on it. (I know…Easier said than done, blog boy.) Live and enjoy life. As I mentioned before, document everything. Mark pictures. Jot down account numbers, insurance info, etc…that will be important for loved ones/POA’s to have access to.
- Talk to family. Have a huge family meeting/reunion that focuses on the past and present. Continue the legacy of love that you have had for a lifetime.
- Consider the Alzheimer’s Association’s Trial Match program. This tremendous program matches patients with clinical trials. These may be regarding medicines in the trial stage, strategies for care, longitudinal studies (to document progression for future studies) and a host of other studies. This program is the ultimate of making lemonade out of lemons.
- Keep advocating. People need to see and hear your story.
I really wish I could take away this diagnosis from your life! It is like few others in the human experience, yet nearly 6 million in the United States face it. Know that you are not alone and you are loved. Also know that some of the finest minds on Earth are working long hours to find better treatments and ultimately a cure. It will happen! And, to my friend, thank you for never giving up! Your example encourages me more than you know!
Update: Mom had another good day yesterday. I had to miss swinging by there, but I will see her today for a while. Her recent good streak continues! 🙂
#EndALZ
