Posted the last day of 2019
Thank you for another couple holidays away from writing. 🙂 I absolutely love to write, but I dislike writing in a time that is crazy busy, as in holidays, because I have much higher standards for myself than it would appear by the deliverable. 😉 The next two days will be rough, but I have a lot to say, so expect some monsters Thursday and Friday.
I just wanted to reflect on what all happened in 2019. This should make a “good jumping off” point if: 1. You haven’t caught up on your digitalcornbread.com and/or seek to hop in mid-event. –OR– 2. If you are in a great mood and optimistic about the new year and want a big fat downer post. 😉 . Well, with that in mind, off we go!
Beginning of 2019:
- We entered 2019 with mom exiting geriatric behavioral health hospital in-patient care. When she returned to the nursing home, it was to the lock-down unit. Her meds were better than before, if imperfect.
- Her health status: She was mid- to late-stage mixed dementia and was struggling wrapping her failing mind around the tremendous struggle it was to understand and process just what all is/was going on.
- Her anxiety was still a solid 7 /10 although that was far better than the 9.9/10 she was experiencing in the 4th quarter of 2018 when we first placed her in the dementia ward of our local nursing home.
- She could still speak sentences although they were confusing at best and gibberish at worst. She seemed to understand spoken communication, but lost her train of thought quickly.
- She was the Birdwoman of Alzcatraz, although slowly becoming less so. Here is my favorite post about that.
- She played the piano remarkably well considering her predicament. Sure it wasn’t what it was a few years ago, but it was impressive nevertheless. Here are a few posts that show her playing: Link Link Link Link . There are more… just search on the search box on the right side under “video” or “piano”.
- She could remember my step-dad’s name. My name had already been gone for months and months, but no worries…I remember her name just fine.
- The Sweet 17, her original band of 17 sisters in the memory unit, were, for the most part, still faring reasonably well. She lost a couple in the first couple months she was there, but it tapered off until the year dragged on.
End of 2019:
- She left the lock-down unit in the fall of 2019 because she was deemed to be no longer a flight risk.
- She was placed on hospice care in the fall, a huge blessing for our care team. They (Compassus) have been outstanding for her care! She comes up for renewal soon and we pray she keeps them. (Note: please read that link about hospice. Hospice works differently in memory care. While they are only approved if the prognosis looks rough, many patients outlive their 6-month end prediction…and mom will be counted among those.
- Mom cannot stand, nor walk, not really do much of anything physically. My step-dad feeds her (I get a turn occasionally, but he is there too).
- The piano has only had its keys tickled a few times in the last 6 months mainly due to the frustration she feels.
- Nearly all of the original Sweet 17 passed away. If my count is correct, about 5 are still with us. The rest are in their eternal homes minus this hot mess…
- HOWEVER, mom’s anxiety is a 1/10 and her pain seems to be nearly 0. She is happy and content and in routine. I feel like she is at peace and comfortable most days, so things could, and will eventually, get worse.
So, now that things are tapering off stress-wise for her and she is in a good place, we have stepped up the service piece of the little community. Here is how:
- I would love to know that you have read the previous 377 posts about her for a full picture. It shows the ups and downs, the full moons, the jail breaks and the falls, warts and all.
- There are now roughly 6,000 subscribers to the website and 600+ Facebook page-like subscribers.
- We have launched our support group which meets on the 3rd Tuesday evening of the month and I expect great things from it.
- We had a successful Walk to End Alzheimer’s in Springfield and I am asked to help plan to grow the one in my current hometown of Bolivar. These will be big this coming year!
- I was fortunate to be on the radio three times, on TV twice and in the newspaper a couple more times. While I don’t “show well”, our story still needs to be heard and reheard.
- I was fortunate to meet multiple political figures including, recently, U.S. Representative Billy Long. More is planned this year through AIM. Several wonderful victories have been won through this group’s help. Consider giving to Alz.org and to AIM with your year-end gifts. 🙂
- SeniorAge Area Agency on Aging, my non-profit employer even before mom got symptomatic, scored a victory when it passed its Growth and Development Bill, but is still greatly underfunded and susceptible to cuts. We have waiting lists on services even being leaner than a Dollar Tree steak. (This means we keep expenses EXTREMELY low and are a great place to make a tax-deductible, year-end gift.)
- I have worked within a few clinical studies and resources/websites to help where I can. I am trying to get placed in clinical trials with minimal luck. My higher-than-it-should-be blood pressure is causing me challenges getting in. 🙁
AND, the last little gem of recap:
Still no cure.
Still no viable, life-extending treatments.
and the numbers are increasing, big time…
So, what will 2020 hold? A cure? Treatments? Me in some clinical trials (I have a family history)? Will there be TV, radio, print advocacy again? Who knows… What I really want is a cure and to get my mom back. Heck…let’s slaughter this disease with a blitz of cures such that this blog is rendered obsolete. I will write about senior issues, baseball, or The Mandalorian.
However, as I am wont to say/encourage, until we get there, we learn, we fight, we advocate, we serve, we pray (!!!!), we love and we strive to #EndALZ.
Thanks all for a encouraged 2019! I look forward to seeing the miracles that 2020 will bring!
Update: Great, but short visit with mom this morning! 🙂 I caught her about to nap, but all is well. 🙂 I even got to deliver a new stuffed kitty and some more Christmas cards. Thank you Teej, Ben, and Starr for the soft stuffed kitty and the 110+ who sent cards! You made our Christmas!!