Posted 3/13/24
He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. Ecc. 3:11
Although I will never need access to a dating app as I am uber-happily married and have been, as of earlier last week, for a third of a century (33.333333 years), I get a kick out of the Hinge app commercials. For some reason probably unknown beyond psychology circles, I relate to the furry little guy. Here is one such commercial:
Its slogan: Hinge…the dating app designed to be deleted.
That is my hope for this piece. I hope it will be deleted and never used for dementia other than reading it. However, if it is needed, it is my gift.
If I ever develop dementia, this is what I want:
- To be treated as normally as possible even when situations and realities don’t dictate.
- To be cared for in home as long as it can be done and be safe and not a burden. If I develop a potty mouth or get violent or the like, placement earlier is a great plan.
- To be lied to as needed to not make me re-grieve things that are long since passed. (Example: My mom asked how her folks were doing probably 25 times in early- to mid-stage dementia. They had been dead for a decade.) Lying to deceive is different than lying to prevent pain. I, and the Lord, understand the difference…Him much better.
- I don’t break it out super often as I read well, but playing the Bible and other Christian Audiobooks would be pleasing.
- Visit me in the facility but don’t let not visiting “enough” make you feel guilty.
- Know that you did your best.
- Pray for me early and often.
- Organ donation is on my MoDL. However, I will have to decide before I make this a legal document which research facility gets my brain. 🙂 Several want it…who knew?!?! 😉
The following I DO NOT want:
- I do not want to be an endless burden by fighting too hard to keep me at my house. As long as I am around family, I am Home.
- ….to have to be bathed by family. When that becomes an issue, place me.
- See above regarding toileting.
- Funeral: cremation is fine with me. If the Lord can find people at the bottom of the ocean, He will be fine with me being dust. Bury me wherever we decide, most likely at Blades Chapel. No expensive service, but a fun get-together celebrating the end of the journey and the joy of our family. I have attended a few funerals this month and have 2 more this week and I am especially blessed and strengthened when I attend a Christian celebration of life.
- To live on life support brain dead. Heroic measures are fine for now, but later we can tweak that…
I may come back to this and tweak it and I will certainly soon do it legally with a lawyer as well. I only do this because in this format as a thank you to my mom who made most all of this stuff very clear to me and my siblings. It has been a blessing to know well what her wishes are/were. A tremendous blessing. Soooo many people are navigating these waters with now guidance. Others leave it to a attorneys and judges.
Death, friends, is NOT natural. I know it is a natural thing to happen…I get that…but even as a believer, I grieve and am sad when a loved one dies. It feels like it shouldn’t have to happen because, according to my faith, had it not been for the fall of Adam (and our inheriting Adam’s nature), it wouldn’t have.
So my encouragement to you, regardless of your faith or lack thereof…share this kind of information informally and formally/legally with family. Dementia is terrible. We need nothing else that could be fixed to make it even more terrible. 🙂
Shifting gears, just a head’s up. My intention is to slay this dragon long before I and my peers as well as those younger have to face it. 🙂 The above will just have to apply to some other stinky illness that inevitably zap me. If you are concerned that I am depressed or worse just because I write this, please know that I am not. I mean it when I say that this can he treated like the furry Hinge critter as far as dementia goes. Nothing to worry about here. Pre-grief/anticipatory grief is very real and I do have blue days, but my intent above is only for future joy, not a warning in any way 🙂 (Thank you to my friends who are sensitive to checking…we should all be careful that way. )
Update on mom: She has been better the last week. Her eyes have been open for the most part and she is eating well enough to hopefully break even her next weigh-in. My fear of her stopping eating looms, but all in all, things have been scarier than now. I look forward to taking her outside for fresh air today when I visit. There is something extremely life-giving about the sun and fresh air, even with some pollen here and there. 🙂
Alz activity Update: I was on KY3 (local NBC affiliate) Sunday: https://www.ky3.com/2024/03/11/fda-rolls-back-new-alzheimers-drug/ and if you need help pronouncing the drug, here is a video I made to help: https://youtube.com/shorts/BOZLtRr94DY?feature=shared
I will be going to DC for the Alz Forum the 2nd week of April. I will also be going to Atlanta for a research road trip in May. I am still prepping for my Longest Day event this June in which I will walk the Frisco Highline Trail Monday through Friday. 🙂 37 miles x5 will be a hoot. 🙂 Here is my fundraiser for it should you want to donate or if you know anyone who would be interested in sponsoring some of the cost of T-Shirts or similar. 🙂 We are just over $500 in donations so far. 🙂 Woot!!!
https://act.alz.org/site/TR?pg=personal&px=14575499&fr_id=17194
I am working on adding another support group for Christian County Mo. Locations have been a challenge, but I will figure it out. 🙂
Keep fighting, friends, to #EndALZ . We are getting there…
Glad your mom is having a good week. I have so much admiration for your courage to keep up this fight. It’s the hardest hard.
Thank you so much Vicki. You would love my mom…she is and was a great lady.
My mother has completed the journey of living with dementia. Heaven won, as the angels escorted her to see Jesus.
She’s no longer frail and confused.
I pray your mom receives the same token of grace.
I rejoice with you that her trek to heaven is complete. 🙂 Thank you very much for the kind words.