Until Alzheimers is Cured, Let’s Do This

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.

Alzheimers Advocacy

(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?

Alzheimers Advocacy

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).

Alzheimers Advocacy

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…

Alzheimers Advocacy

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. 

My Caregiver Wish List

This year, my children’s Christmas lists were, like my children, very different from each other. My daughter’s list was detailed, with a key explaining which items needed to be ordered online and which could be purchased in town. She started the list with a lovely statement about her gratitude to us as parents and helpfully provided direct links to products to save me time (and make sure I ordered the right thing).

My son? I’m still waiting for any kind of list. There have been a few verbal requests, and he has put two items in my Amazon cart, but that’s it.

Caregiving Challenges

Me? If I were to get an opportunity to tell Santa what I really want, my request would probably focus on what I really need as a caregiver:

A Game Plan

When dad moved in with us at the end of May 2014, everything happened rapidly. He had been living by himself (with significant help from us in the form of multiple visits daily to ensure medication compliance, etc.), he sustained a subdural hematoma from a fall and Wayne felt it was critical for him to live with us. He threatened to sign himself out of the rehab hospital, and next thing we knew it he was living with us.

Santa, it’s a little late for us, but if you run across any families who may be on the verge of taking on the task of caregiving, tell them to pour some hot cocoa and get on the same page. They won’t regret it. Caregiving works best when it is a joint family decision, not a situation you back into by necessity.

A Housekeeper

As I have written about here, and as anyone who steps foot in my house knows, housekeeping is not my forte. I am not proud of this, and am always trying to improve, but it doesn’t get any easier when you add the component of an elderly relative with self care challenges. In addition, we are almost always home; the wear and tear on the house is brutal.

If you really want to delight me, Santa, tuck a housekeeper or two in that sleigh and deploy them weekly (or even monthly), at least to the one bathroom in the house none of us can bear to go into anymore.

An Elf Who Specializes in Home Mobility Adaptations

There are so many of our home components that need to be adapted for Dad to be safer (and us to have more peace of mind): the toilet seat needs to be raised, the throw rugs need to be removed (because they are tripping hazards), there need to be grab bars multiple places in the bathroom. We need a shower chair. Some of these things are easy to do (and affordable enough). Some are “bigger” modifications. But they all take time and planning.

Santa, a grab bar may not be very festive but the prospect of peace of mind from less worry of falls is pretty darn merry.

A Train of Thought

While a trip on the Polar Express sounds charming, what I really need this year is for my own personal train of thought to make it from the home station to the destination depot without multiple unplanned detours along the way. Without a sprint to the bathroom when I hear the sounds I’ve come to know as impending instability. Without a request to turn the tv up (again).

Santa, all I want for Christmas is to to be able to remember where I put the ………

The Ability to Go to the Bathroom Worry-Free

You know how infants always seem to get fussy when you sit down to eat? There’s a similar principle with the elderly: close the bathroom door to do your business and the “get up too fast/get dizzy/find yourself at risk of falling” cycle activates. It’s UNCANNY. I’m not sure what the cumulative effects are of always being worried, but I know they aren’t health boosters.

Four minutes, Santa. Four. Worry. Free. Minutes so I don’t have to ho ho hold it.

Infinite Copies of the Meds List

I have written the Dad’s meds list by hand approximately 2,435 times in 2.5 years. Okay, maybe not that many but it feels like it! I do know that there are apps for this kind of thing, but I haven’t started using one yet. You would think, in this era of Electronic Health Information, that this would all be in the cloud. Right? I can attest that the last thing on your mind when you arrive at the ER after a fall is having a hard copy of the meds list.

In addition to these infinite meds list copies, Santa, they need to magically revise themselves when something changes. While we’re at it, this magical nothing-critical-is-ever-forgotten world will also make his insurance cards, social security card, and ID card magically appear when needed, rather than being at home where they are not helping anyone.

A Visit by the Mobile DMV

Spoiler: There isn’t a mobile DMV. But this is my list and Santa’s my benevolent all-giving fantasy guy right now so let me go with it. It didn’t seem like a big deal when Dad’s driver’s license expired, but then there was the document we needed to have notarized, with an ID for proof of identity, there was voting (he voted absentee but in general, it could have been requested at the polls), and there will be other life events.

Santa, if there isn’t a mobile DMV, can you and the elves come over and help with the arduous process of getting him dressed, to the car safely, out of the car at the DMV, tolerating the line, understanding the instructions he is being given in order to have a valid State of Florida ID. Please?

Unlimited Legal Assistance

Growing old, even if your life is relatively uncomplicated, brings with it the need to get legal affairs in order. Power of attorney, a medical representative, DNR orders (if you choose to have a DNR order), a will, and a host of other legal matters that need to be put in place. That doesn’t happen for free, and it is not always straightforward.

Santa, I imagine in today’s litigious society your attorneys may be busy putting warning labels on toys and all, but aren’t they free about ten months out of the year? Could they help a caregiver out? (And while we’re at it, an accountant as a stocking stuffer would be a plus.)

More Health Professionals Who Care About The Family

As I mentioned in this post, Dr. Daniel Bower, an oral surgeon who saw dad when he had a dental emergency, is the only dentist, doctor, nurse, or other health professional in the past 2.5 years who has looked at Wayne and me and said, “and how are you doing?” It’s not that we would have flooded him with the whole story or a litany of our challenges, but honestly the fact that he acknowledged that caregiving is hard on the family was big. 

While I could cite statistic after statistic confirming that caregivers experience stress, I know you have toys to make and flight plans to file, Santa. Just remind medical professionals to take a moment for empathy with caregiving families, okay?

Agencies and People Who Tell it Like it Is

One of the biggest frustrations of caregiving is the fact that well-meaning people tell you things that end up not being true or relevant to your situation. Relatively early on, someone with a home health care agency recommended another agency that, according to them, “will help you fill out the Aid in Attendance paperwork and file it — it’s just something they do.”

While the agency did help us with the paper work (which was denied after a months-long wait), when we eventually ended up at the Leon County Veterans’ Affairs Office, they said “why didn’t you come to us first?” We didn’t know to do that. The original agency we were referred to does help families fill out the paperwork, but judging by all the emails we still get from them offering to “manage our wealth,” it’s clear they had an ulterior motive.

I could give other examples but they are all the same essential model: someone tells you something they think will be helpful and you end up chasing your tail.

It also takes a lot of digging to find some incredible (and often free or low-cost) resources. We finally got hooked up with the free in-home respite from the Alzheimers Project here in Tallahassee, which uses Americorps volunteers.

Okay Santa, this is a lot to ask but we could sure use more “nice” information givers (who give the right info) than “naughty” (who mean well but send us down the wrong path). Our family’s bottom line and peace of mind are riding on this.

Patience

Dad’s cognitive issues are minor in comparison to others I’ve heard about. I know I have high expectations of myself, but I am saddened, often, about the fact that I find patience in short supply. It’s not his fault I didn’t plan ahead to be prepared to leave for a doctor’s appointment, not his fault that whatever happened in his brain stole his empathy, that it doesn’t do any good to say, “If I could just send out these four tweets, I can answer your question.”

I want patience, Santa, and I want it now! 

Grace for the Big Moments

The last 2.5 years have had their hurdles: the dental emergency, the head and neck cancer diagnosis with the related 35 radiation visits, 53 hours without electricity (or tv, his one constant) during the Hurricane Hermine aftermath.

The medical parts of Dad’s situation have compromised his privacy and eroded his dignity. More than the physical procedures, I will come away from this period of caregiving with a few significant moments embedded in my brain. I’m grateful for medical professionals who undoubtedly studied for years and learned complicated math, science, and anatomy, but for whom the real test is looking someone in the eyes who may or may not completely understand and saying, “this may be cancer. This could be very threatening to your survival.” Dr. Philip Sharp and Dr. Joseph Soto have both passed that test with flying colors.

I know you can’t take away those life altering moments, Santa, and I know that it is a privilege and duty curated out of love to be present for them. While hoping for a season of magic for children worldwide, I also ask for an extra helping of grace to be the caregiver Dad deserves.

Caregiving Challenges