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. 

One Afghan, Many Roles

Ever since I worked at Fordham University, I have aced any trivia question that involves the word “sesquicentennial.” I was fortunate enough to be a Fordham employee when the university celebrated its 150th birthday in 1991. As part of the celebration, we were given commemorative blankets depicting the university.

I wonder who was the first person to touch the threads that became part of these blankets, who wove them into finished products, how many people were part of their journey to the Bronx and into my hands.

I loved my Fordham blanket. It followed me back to Tallahassee after Wayne and I got married and had a prominent place in our living room. It wasn’t just decorative, though; it comforted me through many naps and illnesses.

The Blanket and Dad

At some point during Wayne’s dad’s stay with us over the past three years, the Fordham blanket became his go-to covering as he sat in his chair and watched tv. I can’t say I was especially happy about this turn of events. The latter years for Dad were signified by a serious decline in his personal hygiene habits; at some point the blanket developed a hole in it. I, again, was not happy about this but put the blanket’s downfall into the “it is what it is” category. We had too many other things going on to fret about it.

In the couple of weeks prior to Dad’s move to Hospice House, he started carrying blankets with him from the chair to his bed, security-blanket style. Anything near was fair game. The Fordham blanket especially, but if there was another blanket around, it went too.

About ten days before his move to Hospice House, on a Saturday, Dad sat for lengthy periods of time, pulling individual threads of the Fordham blanket out, obsessively. I’m sure this was a signal of his cognitive decline. The Hospice nurses helped us adjust his anti-anxiety medications, which helped with the obsessiveness a bit, but the blanket was none the better for this episode.

A Final Comfort

When Dad’s condition declined so much (and space available in Hospice House allowed), he was moved there (on June 27). I wasn’t home, but I understand the nurse and social worker encouraged us to send the Fordham blanket with Dad to provide continued security.

Although I didn’t really plan to circulate them, I did take pictures each of the five nights I visited Dad before he passed away, mainly in case family members wanted to see them, as difficult as they were to view.

The Fordham blanket was always front and center, providing comfort. This is an edited picture of my last visit, hours before he passed away.

Life Reflections

I *may* have asked Wayne (husband) more than once to double check that the Fordham blanket made it back to us from Hospice House after Dad died. (We still have a pair of “inherited” sweatpants that came home with Dad after his respite stay there in April — dear family out there looking for the tan sweatpants — we’ll hang onto them for you!)

Earlier in Kiger Family History

As I have been going through old pictures looking for photos of Dad, I ran across a picture from twenty years ago, a different time in the Fordham blanket’s lifecycle with us. It was a time of new beginnings, before Tenley (now 21) was six months old.

Life Reflections

(Oh, the cuteness!)

At six months, Tenley was already going to my in-laws every day. They took care of her until she was two years old. She was thriving. She was loved. My father-in-law and I had relatively diametrically opposed ideas about child care, but at no point was she not cared for with love by two people who were also helping us avoid the financial drain of child care.

Thanks, Jesuits (and Ignatians) for Cura Personalis

As I was looking up a few details about Fordham and the Sesquicentennial Celebration for this post, I ran across the concept of “cura personalis” on the university website.

This is an excerpt of what IgnatianSpiritality.com has to say (but I encourage you to read the entire post):

Little is written about the Ignatian-Jesuit characteristic of cura personalis, which is Latin for “care for the whole person.” Cura personalis comes down to the respect for all that makes up each individual. As St. Paul reminds us, “the body is one and has many members, and all the members of the body, though many, are one body…” (1 Corinthians 12:12)

I can’t say I ever heard the term “cura personalis” during my time at Fordham. (I also must admit I was quite focused on the thrills of Manhattan and the Bronx — I did do my job as Internship Coordinator to the best of my ability and fell in love with Fordham while developing a deeper respect for the Jesuit approach …. but NYC held much of my focus!).

Somehow, though, the idea of cura personalis is a fit for the journey the Fordham blanket has taken, from the time I acquired it in 1991, through my marriage, to the time it lay under my infant, to the time it comforted my father-in-law as he passed from his earthly life.

Where will the blanket end up?

I don’t know where the blanket itself will be 150 years from now. Maybe my great grandchildren will transfer it from home to home, use it for various purposes, reflect back on how “this once belonged to great-grandma Paula.”

My hopes are that, if it survives, it will never be a “hands-off” showpiece, something people don’t touch, but rather something that brings comfort, security, and joy.

Something that does what cura personalis envisions: serving not just the intellect, but the heart, body, and whole person.

Life Reflections

Editor’s note: Yes, I titled this “afghan” and then referred to the item as a blanket throughout. Choose a preference; hopefully the sentiment makes sense either way!

Raindrops on Roses and Music from Elders

Is it possible to discuss “favorite things” without having visions of raindrops on roses and whiskers on kittens?

It’s a challenge but I’m going to try to branch out from those whiskers on kittens, thanks to a Mama’s Losin’ It writing prompt: list your five most recent favorite things.

Favorite Things

Here are mine:

Music Therapy

Specifically, the music therapist from Big Bend Hospice who has visited my father-in-law twice. Although I am grateful for the many services provided by Big Bend Hospice, I have jokingly referred to this process as “the revolving door of people who are ‘here to help you,'” inferring that it is an additional chore for me to coordinate them all.

I had put the music therapist pretty far down the “necessary” list, under the nurse (definitely, for health reasons), shower aide (definitely, because Wayne and I can’t do it at this point), social worker ( sanity, please), and incredible volunteer Jim who told him, “yeah, I have a DNR (do not resuscitate) form too,” a perfect response to divert my FIL’s attention from the always-present reminder that this is a very final process.

I had definitely put our music therapist, Marisa (sp?) into the “nice but not necessary” bucket …….. until I heard my FIL, always a man of few words and subdued emotions, SINGING ALONG WITH HER. It really is true about music … it can unlock a person’s heart in a way nothing else can. (Music therapy is especially effective because it doesn’t demand cognitive functioning to succeed. More here via the Alzheimer’s Foundation of America.)

Side note: the music therapist uses a little tripod stool like hunters use in the woods (sample here) … and says she can only find ones with camo designs. Anyone know someone who makes little stool covers with music notes (or other non-camo designs)? There has to be a way.

My New Part-Time Job

When I wrote about trying to sharpen my memory recently by using Lumosity, I didn’t know that something else was going to come along that would challenge my brain and shape up my life in other ways.

While I love my contractor work for Weaving Influence, I am also happy to have taken on additional work that adds to our family bottom line, provides needed structure to my days, and challenges me every single time (even though I have had to part ways with my beloved Oxford comma in the process).

In my independent contractor work for a digital B2B company, my duties so far include searching for news items related to certain terms, summarizing news stories into concise (yet informative!) two-sentence summaries, and contributing to the curation of industry-specific newsletters.

Observations along the way:

  • It’s humbling for an editor to be edited
  • Having to be “on duty” at a specific time (7 am) is the best thing in the world to keep me from a slow, easily-distracted slide into the work of the day. Having to report in to someone, and knowing others down the line are waiting on me, is BIG
  • I should have gone to AP Style boot camp at some point in the past; I definitely feel l like I’m doing catch-up on that front
  • It’s humbling to be at square one with a job again. ALL THE QUESTIONS
  • This arrangement was the kick in the butt I needed to file for my LLC
  • It’s so funny to me to be full-circle back at supporting myself by summarizing the news (one of the ways I supported myself during my New York years was by working at a place where we typed summaries of the news FROM VHS TAPES (yes, I’m that old))
  • I’ve been sufficiently a part of the gig economy long enough now that this doesn’t surprise me anymore, but it’s still so interesting to be working for and with people who you aren’t going to run into at the water cooler or trade funny quips with (yet)

All that said, I’m so fortunate to have the challenge of being an independent contractor for Smartbrief. Check out their website and choose a newsletter that fits for you — here has to be something among all the options, ranging from leadership (my fave!) to supply chain. For career opportunities, click here (but leave your oxford comma at the door.)

Writing

Maybe writing isn’t a “thing” like a smartphone, key chain, or cronut, but it’s a perennial favorite with me. Since I’m not running (for now), it has taken on even more of a role as my outlet.

When I write for myself, I process my thoughts. When I write to try to convey a message to others, I am forced to see multiple sides of the issue, and that is not a bad thing.

People Who Give Me Tools to Advocate Effectively

When I wrote my #One20Today-inspired post in advance of Inauguration Day, I committed to various acts of advocacy in the face of an administration headed by someone who did not receive my vote, and whose administration’s choices threaten the rights and peace of mind of many of my fellow Americans (and me).

The challenge is: the craziness, threats, and insults to the integrity of our democracy are coming so fast and furious, it’s easy to be overwhelmed and get paralyzed by indecision (and, frankly, fear of speaking out).

One incredibly bright and insightful friend I met via Shot at Life has created a periodic (at least weekly, sometimes more) list of 4 action items (something to read, a concept to understand, an action to do, a donation to consider) that can help us break out of the paralysis and do something.

As she said, “We don’t get to reimagine history to make ourselves better. We get to be loud right now or we’re not better.”

Here are four of my favorite examples, taken from the action emails:

Read every executive order President Trump has signed so far

Understand why the United States’ signature on the 1951 Refugee Convention and the 1967 Refugee Protocol impacted (prior to the stay of the Executive Order) choices by government entities to try to revoke peoples’ ability to board planes and to keep them from setting foot in the US

Do pick something you care deeply about and write a letter to the editor (LTE) of your local newspaper. Here’s a guide and here’s an example. Side note: it’s always a good idea to be aware of your newspaper’s guidelines for an LTE. Increase your chances of getting published by adhering to those rules to the extent possible (i.e., if the limit is 200 words, don’t send 325 and make it harder for them to use your piece). Also, it is a good idea to have civil and friendly relationships with your local journalists. No one likes always being asked for something — it’s totally acceptable to chat with them about the weather or praise their cute puppy pictures if you happen to be involved in their social media streams. AND — not everything you submit will get accepted. Don’t take it personally. (Sometimes if I don’t get something accepted, I run it on my blog. Medium is another choice. Your thoughts/opinions still matter.)

Donate to the International Refugee Assistance Project

If you would like to be on the list, let me know and I’ll put you in touch with my friend!

Naps

When our incredible hospice volunteer, Jim, arrived recently,  I said, “I’ll be working on something in the bedroom.” Do you think every hospice volunteer knows “working on something in the bedroom” means “napping”?

One of the huge benefits of working from home is that it is so much easier to customize my life around my energy needs and fit in a 15-minute power nap around 3 pm. As this article states, power naps are beneficial for alertness and motor learning skills. I am not sure if “and making Paula a lot less irritable” is documented anywhere but I tell you, it’s a thing.

If/when I ever return to the traditional office-based workforce, I can only hope I find someplace with nap pods.Google says “no workplace is complete without a nap pod.” That’s what I’m talking about! Maybe Google will open a Tallahassee branch in the future!

FOR FUN

I asked my Facebook friends what they thought I would say. Although they didn’t hit on the five things I listed above, they were all spot-on (good job, friends!). Here are their answers:

  • Green pens (yes!)
  • Audiobooks (oh yes yes yes)
  • Hidden Figures (yes!)
  • Global vaccinations (for sure)
  • Exchanging pleasant conversation over a good meal (the best thing ever)
  • Disney
  • Wine (for sure)

Good job, friends — you get me, you really get me.

Several people also shared THEIR favorite things, which was fun to see! Also a great segue to the end of this post.

What are your current faves?

Favorite Things