When we prepared Wayne’s dad’s obituary, we designated Big Bend Hospice for donations. BBH definitely deserved this prominent place, and has earned any and all donations people choose to give.
However, another cause that merits attention is Alzheimers Disease. Although Dad didn’t technically have Alzheimers, his short-term memory and cognition were sufficiently impaired that he qualified for the services of our local (and awesome!) Alzheimers Project here in Tallahassee.
Our Experience
Because Dad had experienced several mini-strokes in 2012, his short-term memory was affected. (Note: This dry sentence doesn’t really begin to address what that meant in reality, as it played out in our day-to-day lives.)
This is a bit of a layperson explanation, but he had difficulty remembering events or details that had just transpired, while it was often easier to recall long-term memories. He would ask, for example, if something we were watching (that was obviously (to us anyway) a film) was occurring live. He asked my husband Wayne if he was married (sigh….).
Things changed about the way he processed the world. He didn’t care about personal hygiene. His laugh wasn’t a humorous laugh — it was a haunting expression that always unnerved me — and I could never just put it in some category of “that’s because of his condition.” I am sorry to say that almost to the very end I was sniping back “that’s not funny” and slamming doors (often over the all-too-frequent cat escapes that he facilitated).
Most importantly (and this is a mixed bag), his memory deficits prevented him (I think) from really comprehending how sick he was. Melanie, our incredible social worker, said “that’s probably a blessing” and she was right, to a degree, but I always felt it must be scary as he** for him to see all of us buzzing around, acquiring equipment, administering medication, transforming his room with a hospital bed, for reasons he couldn’t figure out.
Alzheimer’s and dementia are different for everyone, but the challenges are numerous and share common threads, both for the patient who doesn’t fully comprehend the path their life has taken and for the caregiver trying to be compassionate without losing their own mind.
The Alzheimers Project has many services (free), including support groups, respite services, counseling and more. I tell everyone to go to support groups (although (cough cough) I never made it to one. But we did get so much benefit out of the respite care, where an Americorps volunteer comes to the home to care for the patient for a few hours each week. Thanks to respite care, I was able to work, nap, and run errands (and Dad was able to interact with someone new). They were godsends. Here is Alex, who was with us almost until he passed away.
(Note, to read more about the role of Fordham Afghan pictured here in our lives, please click this link.)
Ways To Support Alzheimers Efforts
Like I said in the beginning of this post, it is important to me that the world know how much benefit we received from our local Alzheimer’s Project, and how much we want other families with Alzheimers (and similar issues) to receive support, along with our hope that research will eliminate this terrible disease. If you are a family dealing with Alzheimers, call their hotline 24/7 at 1.800.272.3900 or visit their website by clicking here.
If you aren’t currently personally dealing with Alzheimers, but still want to help
Buy a Rivet Revolution Product
Rivet Revolution sells beautiful handcrafted jewelry and donates $10 from each purchase to three Alzheimers-related causes: Part the Cloud, Hilarity for Charity, and The Women’s Alzheimer’s Movement. Here is mine; isn’t it beautiful?
Rivet Revolution notes these facts among the reasons why they feel so strongly about ending Alzheimers (besides the fact that each of the three founders has a personal connection to the disease).
- One in 10 people age 65 and older (10 percent) has Alzheimer’s dementia
- Almost two-thirds of Americans with Alzheimer’s are women
- Alzheimer’s Disease is the 6th leading cause of death in the United States
- Every 66 seconds someone in the United States develops the disease
- More than 44 million people worldwide suffer from Alzheimer’s
Do Charity Miles for the Alzheimers Association
Did you know you can walk, run or bike and help the Alzheimers Association earn funding just by using the Charity Miles app?
Here’s a memory from some Charity Miles I did last year (which seems like a lifetime ago for many reasons).
If You’re in Tallahassee, PARTY!
Seriously, if you’ve never been to Parrothead Phrenzy (it’s coming up on August 26!) or Purple Craze (This year’s has already happened but I imagine there will be a 2018 event), you’re missing out! These events help the Alzheimers Project and show you a great time while you’re at it!
Donate
There’s always the option of straightforward donations! To donate to the Tallahassee Alzheimers Project, click here (a donation as small as $2.50 can provide a replacement band for a Project Lifesaver bracelet). On a more national level, you can donate to the Alzheimers Association here.
Think About Your Words
Although I have my definite (and many, and very strongly held) opinions about our current president, it unnerves me to hear people diagnosing him on the basis of his tweets and behaviors. To me, it dilutes the specificity with which we need to address Alzheimers and related dementia conditions. Let’s be deliberate with the words we use; actual patients are paying a price every day for something that didn’t get diagnosed by strangers second-guessing.
Lastly, a word from Maria Shriver…
Note: I was provided a complimentary Rivet Revolution bracelet.All opinions, though are my own and I will be at the absolute front of the line to do be a part of eradicating Alzheimer’s.
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.
Sharing had to share here first how grateful I am you’ve written this post.
Thanks, Carla. I don’t think any of us are untouched by Alzheimers and dementia.
Good on You! It is a horrible disease to outlive our minds.
It is. I really didn’t have room in one blog to go into all of it, but our situation was truly “mild” compared to others I have known.
You know whereof you speak. Thanks for such a heartfelt post that gives practice advice on how we all can help. Few of us have been–or will remain–untouched by Alzheimer’s disease/dementia.
I do. It’s hard not to throw out cliches but despite how difficult it was in many ways, I do recognize that I had a privilege in helping someone else through that period of his life ……
I have a small business where I help people and I have interacted with several clients with Alzheimers. It’s a terrible disease. My role varies depending on the severity of my client’s illness. One lady thought I was there to let the dog out….I went along with that. A gentleman in his mid 50s had early onset (particularly aggressive ALZ) and my primary role was to prevent him from wandering, exhausting. The important thing is to meet the person wherever they are at and take it from there. It is scary for the patient at times and you need to remind them of what you are doing as you are doing it so they keep getting reminded. I’m going to brush your hair now, I’m brushing your hair now, almost finished brushing your hair, you have to be very specific and repetitive to try to lesson the patient’s fear. I am sorry for your loss. Sadly this disease will likely impact all of us at some point.
I am sure you have seen a lot in working with all of those people. You are right about trying to be specific with them about what is going on. Thank you for playing a part in their lives.