I'd been floating along in a tolerably smooth slipstream for so long, this recent patch of turbulence has me unsettled and sour. We're back to the terrible sleeping issues. MW cannot stay in rooms where she's seen a tree roach; nor can she sleep on beds that are too high (risk of falling off). However, if the bed isn't high enough off the ground, well, the tree roaches can get at her.
So there isn't a bed in the house upon which she's comfortable. And for the past few nights, in vain efforts to accommodate her dementia, we've spent hours hauling blankets, pillow, cushions, setting lights; removing lights, hanging shades; removing shades.... It doesn't end.
MW is also a few weeks away from losing her job when they force her to go full time. She's been trying to find another part-time job but, surprise, she hasn't been able to get past the interview process.
And she fell again the other night; hurt her back. Her foot still aches. She also has a mysterious pain behind one ear she's sure is cancer.
MW is tired, worried, and angry. I'm exhausted.
And I have a project at work that demands a lot of time these next few weeks. It never ends.
Four years. I've been holding onto this secret for four years.
I cannot see the end. That terrifies me because I can't continue like this.
It has to end.
***
I come home to a disaster and clean and clean and clean some more; all while attending to MW who inevitably needs help with the computer or television, whatever. Eventually, things settle and I'm able to prepare food for myself.
And while I'm spooning sauce on a tortilla, the salsa accidentally plops on the counter.
Another mess; made by my own hand this time.
Such a small thing. Only one swipe of the sponge....
But it turns me inside out. My eyes catch fire, threaten to spill over. It is the last, the very last, straw. I see myself ending this; I can picture my limbs moving; legs taking me to the bathroom, hands turning on the water. I see myself in the mirror. What have I become?
I could end it there and then. I want to end it.
But I turn and get the sponge.
Maybe tomorrow.
***
Here's something from a Huntington's website:
Access to care early on is critical to managing Huntington’s disease
Yeah, okay. What about it?
As patients with HD become symptomatic, it is key that those individuals have access to comprehensive care with doctors who are knowledgeable in HD.
Uh huh.
HD patients in early to middle stages of the disease need coordinated multidisciplinary healthcare services, including assessment of cognitive function and counselling by (neuro) psychologists, rehabilitation programmes, active physiotherapeutic interventions, speech therapist training and occupational therapy.
Jesus, look at that list!
Lack of access to care for families with HD means unmanaged or poorly managed symptoms, higher rates of caregiver burnout, potential unnecessary hospitalisations and early entry into long-term care facilities.
Caregiver burnout. Too fooking right! And all the rest.
So, monster then. I'm back to being a monster.
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