Tag Archives: parent with dementia

Course correction

15 Aug

3:47

Course correction? Um, that would mean, me not worrying anymore about whether I post (regularly) to this blog. I thought quite a bit about this over the past few months, and I’ve concluded: this blog is more for me than for my readers, so I don’t have to “please” anyone per se (with the quantity or quality of my posts).

That being said, at this point in my life–and this blog’s life–it’s still nice to reconnect, to stop by the old ‘hood once in a while and say hi to friends and strangers. Hi, friends. Hi, strangers. How’s life?

My life has been a lot of work. Ongoing work. I feel fortunate that I work in one of those professions that was enhanced/improved by the pandemic–in fact, in my professional world, the rest of my coworkers have finally caught up to my reality of working from home (for the past near-decade)! But, yeah, I have a job and I just took another one; I don’t mind, as I know it’s not forever and it’s a means to a financial end. It’s a grind, though, and I’ve suffered from pretty bad RSI in my right wrist these past few weeks to a month, so it’s been hard to do any writing outside of weekday work.

On a different note, after almost a full year since all the craziness with my dad began–it was last August that my brothers and I started to notice just how off-the-wall my dad’s behavior had become; one night, at about dusk, he called me from a field…where, um, he ended up wandering around until 4 the next morning because he essentially got lost–we got him placed into a community-based residential facility, and he moves in tomorrow. It’s like a dorm for people with dementia and Alzheimer’s disease. We shall see how he handles it.

I don’t expect his trying to leave 24/7 to stop, but I hope it dies down a little bit. He’s actually successfully managed to almost “escape” (as he calls it) the nursing home a few times, getting as far as the highway and trying to hitchhike home. The other weekend, a couple of his farmer friends (who are clueless as to what dementia entails) took him out to some sort of event, and that ended up riling him up for days afterward, which culminated in my dad trying to leave the nursing home by stealing an ambulance! All I know is that, the cops were called and my dad didn’t even remember the incident days later.

Of course, nothing is wrong with him and he plans to get a car and commute back and forth to our/his farm. This past Friday night, after my brother had spent the entire day making his dorm room a home, we talked to Dad, and he was like, yeah, when your step-mom comes to pick me up on Monday to take me to the new place, I’m not going, I’ll have her drop me off at home instead–yup, OK, sure.

This has all been quite the trip. I’m just glad it’s over, to the extent that, we did what we needed to do to get him somewhere permanent, safe, and that can actually help his state of mind. Looking at the pictures that my brother sent of his new “home,” I couldn’t help but feel dread more than sadness: so, THIS is where a man of his intellect (he went to one of the military academies) ends up, a small room with a twin bed and a few pictures of the highlights of his life (which he can’t remember anyway), hanging on the walls. GREAT.

It’s hard not to take his deterioration to heart. It’s really brought home the question, what is the point? Literally. Like, if you can’t remember any of it anyway, WHY live a life in which you don’t like your job, you don’t like your moments? It’s been rattling around in my head as I work all these jobs that leave me going, wow, I really did not have ANY fun today except that one hour walking the dogs, or those two hours of jogging along the beach. Sure, I know I am fortunate and have privilege; at the same time, this question bounces along like a tumbleweed being blown down the center line.

Anyway, I hope all are well. We’ve got a tropical storm passing over our island today, which means a lot of rain (nothing more serious; it’s just a storm, not a hurricane). I’m taking advantage of a rare day of downtime–to write, to take stock, to zone out…

Life, in a few words

13 Apr

5:19 pm

It’s mid-working day on a Tuesday, and all I have to say is, I am tired. Like, I know I work from home, but…I feel kind of burnt out. To be sure, I am grateful, which is why and how I keep going, day in and day out; but I’m tired, too. It’s made keeping up with this blog difficult, actually, even though all I need to do is take 20 minutes and jot a post. So, I am finally doing that now…

In a nutshell, my dad was officially diagnosed with mild-to-moderate dementia/Alzheimer’s disease–and um, yeah, if you’re sort of going, well, what does that mean, I am rolling my eyes and thinking the same thing. Life! Why can’t you be who I want you to be! Haha.

The truth is, that’s about as close as we’re going to get, in terms of closure to our questions about the why and how of his recent descent into bizarre thinking and behaving. (And, it’s about the same with getting any definite answers when it comes to menopause: well, your serum levels say this, but…you might feel this, or that; this drug may, or may not, take away some, or all, of your symptoms to some, uh, variable degree…) Insert head-crashing-on-table emoji!

Through a lot of sweat and tears (and PTSD-like anticipatory dread of his phone calls to us and our ever-repetitive answers back to him), we’ve somehow managed (all remotely, with the help of our soon-to-be ex-step-mom and the nursing staff) to get him to stay at the nursing home since December; and get him back and forth for an MRI and then, to see a neurologist, who did an EEG and came back with an official diagnosis (they found evidence of dementia on the scan, which puts *us* at ease, mostly; I think my dad has already forgotten about the entire appointment).

What else? Well, we’ve gotten him through a messy divorce involving cleaning up his dumpster fire of a financial life and applying for Medicaid. One day soon, we’ll have to go back to our home town to “transfer” him (kicking and screaming, I’m sure) to a new facility that takes Medicaid as well as clean out his (our) farm house in order to list it for sale sometime in the late summer or early fall. He’s lived there since 1979, and it’s where I grew up; needless to say, it’s the end of an era, *his* era, but he won’t be around to see what happens to the place that he loved so fiercely that he never left. (My mom bolted us out of there in 1988 after she divorced him; and we only went back to the farm to visit him, once in a while, over the years.)

What have I taken away from this experience? Hmm. Well, I can say for sure that neither my brothers nor myself is in any way interested in buying the farm (he cannot gift it to us on Medicaid) for any kind of old time’s or sentimental sake. Going through this process has made me glad I don’t have kids of my own and clued me in further as to why I never did. And, I am seriously thinking of hitting up a lawyer and having some sort of living will written that explicitly instructs my partner on what to do if I develop dementia.

I’m not sure if I care enough about my dad to look on the bright side; he wasn’t a good father, he didn’t care about his kids when we got older (he cared about himself), and I’ve literally spent my entire adult life trying to build my own wealth because he one, never cared to do so for us when he was younger and two, spent (like, beyond spent) any and all retirement savings he had doing stupid shit. We aren’t jones’ing to visit him in the nursing home; the only time I’ve seen him is on a video doctor’s appointment a few months ago, and he treated me like I was a “little woman.”

I feel bad for him, I do; I feel guilty about not caring that much, even guiltier about letting it go and living my life. But, I have to; my brothers and I have to let go and live our lives. We get to be happy…even though what he’s going through really sucks. No one can live it for him, unfortunately.

That’s mainly what’s been happening here. I am still cranking out 1.5 jobs, wrangling two new mutts (the one needs some serious training–we seem to have finally housetrained her; now we’re working on getting her to not go cray-cray pulling and barking when she sees another dog or human on the walk–and they both need to be treated for heartworm, which the one is getting and the other will get in a few weeks), and managing my post-menopausal stuff (things have gotten better, but it’s up and down; I think that being athletic and sober has really helped my symptoms not be all that bad, relatively speaking). I am still really happy and grateful…and looking forward to life post-vaccine (gulp: we got the Janssen jab a week ago, so…haha, I am just waiting for that two-week mark to come and go without um, a blood clot!?).

On that note, I am being eaten alive and sweating to death; seems the weather has turned to zero breeze and 90% humidity overnight, and the mossies are out in full force, nibbling at my ankles and feet. Hope all are well and I write more soon!

Stay strong, and stay sober. You got this.

And…2021? What?

2 Jan

11:59 am

I remember when it was Y2K! Haha. Remember that? Y2K. Remember when that was a thing–I mean, almost as “big” of a thing as Covid? Ahh, to think that we were worried about that, when THIS was what was in store for us, 21 years later.

Jesus, 21 years?

Um, 21 years is sounding like a LONG time to me, at this very moment. Of course, lately, since my dad has been having dementia-related memory problems–and as we (meaning, my brothers and myself) learn how to talk to him in a way that is helpful and constructive–it’s got me thinking a lot about time, aging, and the reliability and (d)evolution of our memories as we get older. Sometimes I wonder if I have some form of early-onset dementia–organizing and cataloguing my thoughts just makes me feel irritated, and I definitely have had moments lately where I’m like, wait, why don’t I remember every gory detail anymore of what happened when?

It’s been saddening, shocking, and angering–yup; this feels like grief, as in, all of the sudden, you’re angry at the thing before you melt into tears (on the inside)–to watch my dad’s mind stop working. And, as a life scientist, I do wonder what is happening up there, with all those neurons. His thought patterns remind me a lot of someone in a blackout; he does not remember minute to minute, sometimes second to second, yet, he is present, conversing, and remembering other things. I noticed that his sense of sequential time is all mixed up, too; sometimes, he’ll recycle the same words or conversations that we have had more than once, months ago, as if he is still there, in that moment. Maybe he is? The other night–he was tired, and I’ve read that people with dementia “sun down” and get looser and more confused at nighttime–he kept saying the same thing, in response to anything I asked him; and, it was totally unrelated to anything. He has been fixated on a couple of things–getting out, and getting to the cordless phone at the nursing station so that he can call strangers to get him out–since Thanksgiving, when he was in the first ER/hospital. He was uber-combative then. Now, he seems to just have accepted what is, or, he has more awareness and/memory around why he is inside to begin with (I guess?).

It’s all really, really hard to understand, what’s going on in his brain. We are doing our best, trying to get him from point a to b to c–some days, I feel really deflated, like someone stunned me (the same feeling I had after the hurricanes ripped through our area and tore many a house down). Some days, like tonight, I rally, do what I am supposed to, and stay on track (tonight, I had to start looking at community-based residential facilities, which is just SO, so sad; with my dad, it’s definitely going to be like putting a rare creature who is used to running on the African savannah into a cage in a zoo). Fortunately, I have my brothers to lean on…

Otherwise, yeah, 2021 feels…a bit quiet so far. It was a busy holiday season, actually, since we did almost everything we usually do as well as I had this whole Dad situation to think about. We had a nice dinner at a friend’s place, went sailing on a catamaran (well, the captain motored us around!), and managed to get to three beaches (it’s been like, hurricane-windy here for the past week, which does not make for great beach days). Many days last week, I vowed to give up writing; most nights, I remembered how grateful I am to have a (writing) job to go back to come Monday (my contract was extended). I watched a movie and started watching “Long Strange Trip”–I can’t believe how young Jerry Garcia was when he died!

I managed to patch up a rough spot with a friend of mine, love more on our neighbor dog–we have a special connection since she was my Best Girl’s “angel”–and just lounge around with our new pup on my lap (he is quite the needy boy!). I’ve been running, too, but the hills are not easy on the knees and uh, I have some residual joint pain from the estrogen patch (sure of this; I have no clue why estrogen replacement therapy would cause your body to react as if its joints were arthritic, and I have honestly stopped wondering–see, is this dementia? I am just too tired to care anymore; I am not dying, so all is well, right?).

We actually masked up and went out for sushi on New Year’s Eve; it was quiet around town, and we were home and in our jammies by 10:30. LOL. I really Could Not Even with this year’s New Year’s Eve; I mean, everything was messed up, tossed around, twisted into a new shape during 2020, so, “celebrating” NYE took on a different meaning for me this year, as in, who really cares? Haha.

I haven’t felt much like dwelling on the literal lately, as I said–and so, it’s been hard to come up with some sort of “yearly word.” At first, I was like, God, I’m too tired to care. However, the more I journaled today, the more I felt something brewing…

This year might just be about finally letting go of my expectations, my past projects and goals and dreams–and setting new ones that I want to do, that fit, that feel right. And, if they stop feeling right, move on. It’s like, I don’t have the energy to hang onto my old self and old dreams anymore, you know? Maybe because my heart feels crushed by watching my dad lose his mind?

One of my fondest memories of my dad keeps coming back to this (and, it makes me want to cry every night, because I look up at the sky every night): because he was a trained merchant marine (a sailor), he knew the night sky very well. He knew a lot of things very well, and he could entertain people endlessly with his facts and figures. Anyway, whenever we’d be outside on a summer night on the farm, looking up at the stars–so many, so bright–he’d point and say, Look, that’s Sirius. There, that’s Benetnash and Mizar; there’s Alioth, Megrez, Phad, Merak, Dubhe–all the stars in the Big Dipper. It was ridiculous because, well, most people never even heard of these stars let alone could point them out in the night sky.

Maybe that’s why I go out now, and look up; I want to remember him.

And, I want him to remember, too. I want him to look up, to see the night sky, to remember pointing up, There, that’s Benetnash and Mizar; there’s Alioth, Megrez, Phad

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