Dementia Update

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As some of you know or have noticed over the years, I am unable to post on a consistent regular basis as I once did my first decade on WordPress. My commenting and participation on other blogs I enjoy following, sadly has become very limited as well. If you are fairly new to my blog, visiting, or browsing WP, the reason there are much fewer posts is due to my Mom’s Stage 5 Dementia, which is really now well into early symptoms of Stage 6 with fewer mixes now or crossover with Stage 5.

In my December 2021 post about her cognitive decline I listed and briefly explained all the various stages. As of 2022, it seems the general consensus of all the seven stages are known and what the adult children of parents with dementia, or early onset Alzheimer’s Disease, can expect. Here is Stage 6 according to Dementia.org:

Stage 6: Moderately Severe to Severe Dementia

“When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:

  • Delusional behavior
  • Obsessive behavior and symptoms
  • Anxiety, aggression, and agitation
  • Loss of willpower

Patients may begin to wander, have difficulty sleeping, and in some cases will experience hallucinations.”

Mom shows all of those four bullet-points now, although three of the four on some days and then perhaps two of the four other days. But there is always at least two of four every single day. She definitely needs supervision at minimum 12-16 hours per day with some of that time (1-hr at most) a “check-in” or Q&A time sporadically with her throughout the day to gauge how she’s getting along.

Friends and neighbors sometimes ask me how I am doing, how I’m managing my own health and social needs. Apparently, Caretakers of elderly parents with dementia or Alzheimer’s are often overwhelmed in a period time if they receive no relief, no break for themselves and don’t become well-informed of the two diseases. Another thing I’ve heard from the support-group I attend once a month is that the role of caretaker is usually a thankless job/role. Since late-stage dementia is basically early Alzheimer’s Disease, Alz.org lists Ten Symptoms of Caregiver Stress. I currently tick 9 out of 10 symptoms. The biggest reason why? I’ve been going non-stop, no break, every single day and night as her full-time, live-in caretaker since mid-August 2021, or over 47-weeks straight with no respite.

Back in late April of this year I was supposed to get a much needed 6-day, 5-night vacation up in Dallas, my hometown where all my good friends still live. We had several plans made and fun, exciting things to do, dancing, umm… and maybe some drinking included! 😉 But here’s what happened that week/weekend that changed everything: In Memoriam to My Brother. Hence, no real vacation for me at all. I spent the vast majority of my time at the hospital sitting with James, followed by waiting (alone) in my hotel room some 4-5 days and nights for decisions and details about his funeral. I had no motivation to go out alone or with friends; I wasn’t great company then anyway.

So yeah, over 47-weeks now and still counting.

Meanwhile, Mom and I march on, day-in and night-out, fighting a cognitive disease that takes a little more brain-space from her than we can actually replace or take back. But we do have our victories here and there. That’s when Mom wants to celebrate big with either glasses of her Pinot Grigio or I make a pitcher of my world famous El Presidente margaritas, which have a good patada de toro to the ass or head, whichever it reaches first. Hah! 🍸🥳 These are our cherished good times and there will come a day when they aren’t possible. And so we enjoy them thoroughly, when we can, and at length for sure. “Do you know what I mean?” 😍

Live Well – Love Much – Laugh Often – Learn Always

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31 thoughts on “Dementia Update”

  1. Hello Dwain. Damn friend I wish I had some words that would matter. All I can say is that if I was close enough, I would sit and spell you for whatever hours you needed that I could. I am in Florida. I am not much help for you. You need relief from the hours of basically babysitting for an adult, which is what you are doing. What a great and grand son you are and have been to give up so much of your life for your mother in her decline. If there is something I can do, even if it is financial, please let me know, if I can I will help you as much as possible. You are a great person I admire so much. Best wishes and so many loving hugs. Scottie

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    • You are awesome Scottie! Thank you very much my Friend. ❤️ All that means a lot and I will certainly keep your sentiments and offers close at heart. 🙂 Yes, at some point the break, the sufficient time away MUST happen. My years working in the Psych/A&D rehab field taught me at least one HUGE lesson:

      If you are an exceptional, compassionate, hardworking, reliable Psych/A&D worker and truly love what you do… then it is imperative (to put it mildly) that you have regular sufficient time-off, time away from the craziness and stress. If not, you do witness some workers who burnout and sort of snap.

      I know when that snapping point is near Scottie, so that will be the time when my (unreliable) 46+ year addict-recovering sister will have to take over and manage. Back in late April, early May when I was gone to Dallas… she failed. Ugh. Then soon relapsed, again. 🙄😔

      Maybe next time she will be/do better.

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        • My therapist right after my Dad’s suicide (in 1990) diagnosed me pretty quickly because of what I was suddenly forced into handling for my mother and sister… was Codependency. HAH! 😄 I said, “Well YEAH! What choice do I now I have?” But she helped me immeasurably and tremendously with MANAGING that disorder—my father instilled in me so much self-reliance, selflessness, and to eagerly volunteer to take the lead in projects, efforts, organizing groups, etc, that before you know it, the responsibility, the accountability, and the stressors that come with that role make you Codependent! I had never thought of the disorder that way, but she was right. I must now keep vigilant check on how much I metaphorically and literally… “GIVE” and to let others help or delegate. 😧

          Again Scottie, many kinds thanks my Friend. ❤️

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  2. Oh, Professor. My heart aches for you but I also have great admiration for you. You have got to be one in a million. Scottie articulated (eloquently) my thoughts, as well. So hoping you will soon get some respite.

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  4. HAH! You nailed it Tildeb. I am. If I’m brutally honest, it’s now at least one (small tumbler) cocktail per night or 2-3 glasses of Malbec per night. Pffffft, and when Mom wants to celebrate? Ummm… let’s not go there. 🤫🤪

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  5. My heart goes out to you, Prof, and like Scottie … were it physically possible, I’d love to come and spell you for a bit, maybe even bring a nice big bottle of wine and a deck of cards! Your mom is one very lucky lady … and no doubt a very special lady to have such a caring, giving son. Take care of yourself, too, Prof … the world needs you and your valuable thoughts. Hugs

    Liked by 1 person

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    • Eh, Jill… that’s the modern age of the techy 21st-century—everyone is as connected (literally?) around the globe in make-believe cyberspace at astronomical distances, as they are locally in their small time grocer. Hahaha. It’s a VIRTUAL existence these days! 😉

      No worries. I’d SO enjoy all of my WordPress friends together, in a lounge room with high-back Victorian chairs, in a big circle facing a massive cocktail-coffee table in front of us all, chit-chatting and satirical about our nation’s and world’s goings on! WOW, what an image, huh? 😁

      Thank you so much Jill for your kind words and sentiment Ma’am. 😁

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      • Many times I have said that my blogging family is every bit as close to my heart as my biological family! I sometimes forget that I have never “met” you guys in person!

        Oh yeah … that would be such grand fun!!!

        Take care, Prof. We, your blogging family, love you!

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  6. Both of Mike’s parents had dementia. His father had Alzheimer’s and his mother who spent the last year of her life living with us had vascular dementia. So, welcome to the club! 🙂 It’s tough as nails but we come out of it with a different, better sense of what being human is all about. I wish you strength.

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  7. My previous worst-case-scenario was being installed in a mental institution and having to prove I was sane to get out (a la “One Flew Over the Cuckoo’s Nest”). I have decided that this is worse, having my brain just up and quit on me and becoming a burden to my loved ones, and not having the mental acuity to kill myself. Who needs an institution if your own skull can lock you away for good.

    Obviously, it is important for care givers to take care of themselves (You can’t give what you don’t have” is some of the wisest advice I was ever given.), so take care of yourself Prof.

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    • I’m trying to Steve, promise. I wish Mom and Dad had had one or two more children, then I wouldn’t be doing this essentially all by myself. But hey, they say “what doesn’t kill ya…” something happens after? 😄

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  8. My grandma, who was more like my momma, had dementia and Alzheimer’s disease, and it was a rough transformation when it finally took over her mind. I definitely feel for you, and I am sending love and light your way. It’s hard to handle all of the demands of that disease. Big hugs, Prof.

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  9. Dammit man. I feel for ya.

    My own mother sits in a nursing home with the 1000 yard stare. For all intents and purposes the person I know as my mother is already gone.

    I have an old friend up around Peoria, going through the same thing you are right now. It’s a damnable experience. He seems to be dealing with it well, but I know it has to be tough.

    Good vibes sent. Let me know when they get there. 🙂

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  11. I am sorry to see what you and your mum are going through. I hope you get some time away to recuperate and to keep writing your comments because they are always very knowledgeable and interesting and I guess it will take your mind to another space for a short time. All the best wishes to you and your mother.

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    • Ahh, “time away. ” What a dream come true that would be! 😏 That very rarely happens I’m afraid. No one else—super reliable enough or free enough to give the Caretaker respite—is around. My sister helps out when she can, but it is never more than 1-2 hours at the most about once every 2-3 weeks. And with dementia long-term care health insurance denies claims until she is essentially into Alzheimer’s Disease, which honestly by that time she’d be in a full-time, 24/7 elderly home… of which she’d recognize NOBODY and definitely be miserable and belligerent. 🤦‍♂️

      So we/I soldier on… (slight modifications are mine)

      “Forward, we Light Brigade!”
      Was there a man dismayed?
      Not though the soldier knew
      Someone had blundered.
      Theirs not to make reply,
      Theirs not to reason why,
      Theirs but to do and die.
      Into the valley of Death
      Rode the Mum and son.
      — Alfred Lord Tennyson

      🙂

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