This, this, this, and... THAT!
Updated: Oct 14, 2022
Now that Wine, Women, and Dementia is "in the can" and the frantic flurry of filmmaking activity is subsiding I've been looking 'round to see if I have anything of a caregiving nature to share with you all. Turns out, I do.
THIS! Reluctant Carer Blog
I've started and stopped about 10 different posts in the last month, all abandoned after some form of "Well, that's not very interesting/relevant/worthwhile" bleats in my brain.
Maybe I've blown my wad on the documentary, pouring the remainder of my caregiving prowess into the film, leaving no stories that I deem worthy enough of your precious time to relay.
Well, if I'm stymied pulling it together for you prize fighters still punching dementia in the face every day, I found somebody who isn't. The Reluctant Carer blog has the same wry sense of tragicomedy, the same honesty about this crazy caregiver lifestyle, and (I'm surmising here) the same need to throw down words in an effort to cope with the daily throw down in caregiving.
"...my father’s ability to generate and contract fresh ailments and conditions is an act of such sustained creativity that in any other walk of life (if we can speak of dying that way) his work would be in a museum." ~ Post: "The War on Drugs," Reluctant Carer
HAHAHAHAHAHA! ~ Lickety Glitz reading the above whilst thinking "My, that's clever!"
Unlike me, the author of the Reluctant Carer Blog is male, caring for both his elderly parents (neither of which have dementia, although suspicion abounds in the case of his mum), and keeps his family's identity anonymous. Whereas I am all broad, had only one geriatric to corral, and brazenly blast images and videos of Mom out to the far corners of the interwebs every chance I get.
While his wordsmith'ing conveys a penetrating irony of this caregiver lifestyle, I also deeply feel his affection for his parents as he navigates the morass of elderly, uh... social graces?
"Mum’s relationship to ironing could be the subject of a separate essay, but the essence of today’s dispute concerns Dad (who I have never seen iron) asserting that some trousers she has ironed for him (in which he will go nowhere, see no one but her or me, and do nothing but sit down) should have a crease in them. Mum says this cannot be, “you cannot have a crease in cotton trousers.” My father’s answer, which comes at a special volume, several notches higher than the one necessary to get my mum to hear you at all, peels through the house – “I CREATE ONE!” ~ Post: "Crease Up and Get Down," Reluctant Carer
Uh, yeah, I love this dude.
He's also turned the blog into a book, but I shall continue with the free option for the small price of page scrolling.
THIS! Dementia Tip-Share
This is smart - a dementia tip website created for dementia folks to share what's working for them as they move through their progression. Designed "From people with dementia, for people with dementia," the site encompasses a multitude of topics for day-to-day living, i.e. Connecting and Communicating, Money and Legal Matters, Life At Home, Life Outside Home, etc.:
Life at home / Getting dressed
I always get my clothes out and put them on my chair ready, in the order they will go on. Alexa reminds me.
Emotional and family life / Your partner and family
Being around each other all the time can get frustrating. Make your own space. I go off on my laptop, and also go out with a carer once a week for a few hours, while my wife meets up with her friends.
Health issues and symptoms / Incontinence
Do not be embarrassed to wear incontinence pads / incontinence knickers. It is more embarrassing if you wet yourself!
The website is designed with our favorite forgetfuls in mind: a big navigation bar, easy to increase text size, and each page has a "Listen" button at the top, so if reading has become a challenge for your dementia person they can relax and be entertained by the nice AI lady's voice as she recites the entire page.
It also includes a "Share a Tip" section, giving your loved one the opportunity to help others. And an "Ask for a Tip" if there is a burning question they'd rather query their peers about than you. Both of which provide a level of usefulness and autonomy that's a win-win all around!
It's a great resource for us caregivers too; getting the inside scoop on what's working from other people living with dementia is a super way to discover new strategies for our own households.
THIS and THAT! Rebel Girl
Then there's THIS... I am still struggling. It's so annoying to wake up every day and be like, "Ugh. It's me again." I'm mired in an ennui that I can not shake. More often than not my life feels empty, purposeless. This from a girl who should be all kinds of excited to share her documentary with the world. I should be brimming with motivation and lust for life! I'm not and I don't know why.
I make no sense to me anymore.
Am I ground zero for a twisted bout of Stockholm Syndrome? Now that I'm free from the relentless focus of dementia is my psychological response to fall to pieces if I'm no longer its captive? Did I need that unforgiving disease and its ferocious demands to feel useful, worthwhile, of value to Mom, myself, and others? In the last five years did I inadvertently cement my existence to the sole identity of dementia family caregiver?
Or is it a grief I have not acknowledged that has me cloaking myself in isolation? Preferring the company of a pack of smokes, a bottle of wine, a stupid game on my phone to human interaction where the potential to disappoint, to fail, to fall flat in the eyes of others has me receding from the world.
Or is it both? Is anyone in having similar issues? Is this a common part of big life changes?
In an effort to overcome all of THAT, I've been pushing myself to be more social, more nights out, more friend times.
That strategy hasn't made things worse, but doesn't exactly have me farting butterflies while skipping through fields of happiness either.
It's not everyday that I'm mired in melancholy, but def more days than not, so I've finally turned this mess over to a professional. She believes she can help me get to the bottom of this malaise, and in the meantime I'm staying away from bridges.
Kidding! I'm totally scoping out all the bridges.
KIDDING! FOR REALS THIS TIME!
Oh well, at least my "Bobs are big!" (A direct quote from a long-ago missive, sent to me by an admirer who lacked some basic spelling skills.)
Rebel Girl having a forced night out...thank you, Bikini Kill, for a crazy awesome show!
Stay sane, safe, and sparkly everybody. I'll be working the same angles on my end.
P.S. Mr. Bones has been having a hard time too with his front legs going wonky on us. At least he's looking oh-so-cool while getting laser treatments in his PT session.