The curtain has gone down, the screen has gone black... in more ways than one.
Damn you, Dementia.
We didn't get much of an Oscar season this year. Oh sure, in my life-long career at being my mother's favorite irritant I didn't hesitate to drag her out and about for the 2020 Best Picture nominees, but I had to concede defeat early in the process when I could not keep her seated for the entirety of Little Women. I plied her with sweets at the first sign of the fidgets. I held her hand and snuggled my head on her shoulder to stifle the stirrings. I even resorted to holding up the ottoman section of her reclining seat by propping it up underneath with my foot while she struggled to push it down with her legs in an effort to extricate herself from the contraption.
All to no avail.
So, I watched most of the nominated films at home, unable to persuade Mom to sit down and join me, she being much more vested in her nightly routine of ricocheting around the house placing any odds and ends that aren't bolted down in even odder and endlessly stupefying places. (How does putting a dining chair upside down on her bed make sense to her? And how the hell did she manage it?)
It's not just movie-going that is falling by the wayside; dining out, plays, concerts, dance performances, all are vanishing into the past.
While I don't mind that Mom is no longer able to keep still for any length of time (and I've found the general public to be very empathetic to Mom's dementia quirks), it's too stressful on me to continue these activities thinking we may be interfering with others enjoyment. So, if it's not fast food, we don't go out to eat. If it's not a children's film or arts performance with a built in audience of equally distracting delinquents, we don't attend.
The deluge of event opportunities we once took full advantage of to engage Mom in the wider world are narrowing to a trickle. We've become too dementia for a lot of things.
We've adapted and made different choices. We still avail ourselves of the hospitality of relatives. They are happy to see Mom and don't much mind if she spends the hour going from door to door to door looking for a way out. And a new strategy for eating out is to take our drive-thru burgers and milkshakes to the airport for some illegal parking at an excellent vantage point to chow down while watching planes take off and land.
Last month a handsome, young policeman lectured us on life after 9-1-1 then told us to "Get going" with only a warning. This interaction thrilled Mom so much we will def be illegally parking there more often.
But as dementia progresses our lives are getting smaller, the isolation winding ever tighter around us.
I expected it to go in this direction, but now that we're here I feel the constraints, the squeeze of the rope as it contracts, shackling a day's pleasant possibilities to forlorn futility. I find it an an odd thing for me to rue, but as my caregiver life stretches seemingly endless before me, losing little pleasures is having a big impact.
On me.
Mom seems to have adapted just fine to fewer enjoyments. I, on the other hand, am losing my lust for life. (Sorry, Iggy.)
I have chosen to accompany my mother on this lethargic shuffle towards her ever waning light, the tunnel we traverse slowly narrowing until I'm doubled over in the effort to move her forward, to see her through until her flame's final flicker into darkness. I knew it wasn't going to be easy. I know now it's even harder than I initially imagined, but that hasn't changed my dedication to accompany her to the end.
Yet I feel bereft of my own spark now.
I soldier on, unsure of what to do to silence this low-grade drone of despair within me. And I'm not sure there is anything to do about it - this is death, after all, a journey that is not known for its overabundance of frivolity. So, I will stay the course, make the most of the happy moments (those have not yet deserted us), continue to monitor and seek solutions to my own malaise, and hope that I myself am not too dementia to survive this.
P.S. The only movie Mom did sit through in its entirety is 1917 - so by default that's her pick for Best Picture. It is also projected by many to be the winner, so regardless of my gloom, Mom may have just nailed it this year.
Our previous Oscar adventures...
Yeah, I'm there a lot myself, Pamela. I have found a low-dose anti-depressant to help smooth me out a bit. It doesn't cure the caregiver blues, but it helps them be less debilitating. I keep making resolutions to start doing meditation too, but then I eat a box of Cheez-Its and the meditation gets lost in the cheesiness.
Hang in there! I will do so on my end too.
harrier, I've been participating in an online caregiver group and this week some of the other CGs were talking about that exact same thing - they're dementia person sans the congeniality filter pissing off everyone around them with their remarks. Mom was kind of like that at the beginning of the diagnosis (historically, she saved that sweetly-snide side just for us... her daughters!), but her verbal skills skipped out early on in dementia so I guess that's a bit of a tarnished silver lining for us!
Have you found strangers to be pretty understanding, empathetic? I've been super impressed that most people just go with the flow of my craziest crazy ladies. Has that been your experience?
Thanks for a great article. I too am feeling like i am following him down this dementia road. Or i am just depressed, of both. I felt so much better when i am not the only one out there not being as strong as i hoped i could be!
The ability to go out was one of the first things to go with my Mom. Her stunning lack of empathy and verbal filter led to some very uncomfortable events in restaurants. What used to be one of her favorite activities was an event of fidgeting, wanting everything her way and saying hurtful things about people around us in a stage whisper. So I sympathize as always. Your posts read like what I would write if I wasn’t so busy trying to fight off going into my own catatonia, thank you.