2017.07.25

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.

2017.07.13

But it isn't always intolerable cruelty. In fairness, MW's flurries of rage only take up around 15-20% of our time together. Understand, however, that would be significantly more if I wasn't completely servile and voiceless. It is a tenuous balance. Many times MW's anger will be sparked by my silence being perceived as neglect, whereas I'm actually holding my tongue out of fear. I've learned that any fire started by recalcitrance burns shorter and cooler than the furnace-blast generated by misspoken or misunderstood words. To that end, I communicate mostly through grunts and non-committal stammering. It works most of the time; MW just keeps on talking.

I credit this for keeping the peace. Mostly keeping the peace.

What about the other 80%?

Half and half: 40% complaining about things; 40% worrying about cancer.

So, really, the bulk of my time isn't cowering in fear, but nodding along with whatever perceived injustice MW is suffering or repeating the mantra - "I'm sure it's not... I'm sure it's not... I'm sure it's not cancer."

Tolerable, I suppose. Sad, but manageable.

However, every so often there's a small moment of grief that is almost impossible to overcome. Not like the ear-drum piercing shouts or narrowly avoided acts of violence; but something so subtle, it quietly breaks you.

The other day, MW was rambling on - I can't remember about what - but she was talking, talking, talking. In the middle of it, she realizes she has to go take a shower, so, still talking, goes to the bathroom, undresses, and turns on the water. Then immediately comes back out to continue the "conversation" - nude, with the water running.

She talks and talks and talks. Minutes pass. Ten, fifteen....

For me, this is one of those hard-learned judgement calls. I could politely interrupt and tell her to go turn off the water, or I could rise out of the chair and turn it off myself. Either of these two actions, however, could start a tirade. I might be accused of not paying attention to her and get screamed at. So I do nothing but sit and nod and mutter "uh huh".

Fifteen, twenty...

Eventually MW stops, looks around confused, and says "What am I doing? Why am I standing here naked?" And shuffles off to the shower which by now, I'm sure, is cold.

Just that expression....

Confusion. It's worse than when the hideous contortions of rage twist her pretty face.

***

From the misery/company corner: a FB post about how HD is like a body snatcher. It takes a person away and leaves behind something else.

Yeah. That's pretty good. Expand it to the caregivers, too. HD has stripped me to nothing and tacked up a thin, paper mask as a replacement.

Indeed, many people are changed through hardships - some forged into stronger mettle; other's collapsed into waste. But my experience with HD is different. Hardship, sure; but so relentlessly hopeless and isolated.... Take the social media postings: I check them to connect, but I can never post anything. Inside my house, I canonize myself a saint, but I'm not so far gone to realize that I would be seen as a monster to anyone else. Especially in the HD community. They would recognize my behavior as negligent, dangerous, maybe even mocking.

I'm alone here. No family; no friends; just a bogus account on social media platforms crammed with suffering. Not stronger; no weaker. Just gone.

There's nothing left of who I used to be. My job is mostly done on computers - very little human interaction. I don't talk at home. Sometimes, when I do open my mouth to speak, what comes out is raspy and broken. A stranger's voice. I have to clear my throat multiple times just to form words.

The "person" I talk to most is my dog. He's cool, but....

I've been removed from family; society.... humanity. I've been removed from myself.

Goddamn this disease.

***

Which brings up another, interesting thought.

A cure. What if they did find a cure?

Well, it depends, doesn't it? Could the cure reverse the damage done? Not only halt the onset, but restore the brain to healthy?

If not; if the cure only prevented further degeneration; it would leave us stuck in this... living hell where MW can't really function without help and is prone to anger, depression and confusion.

But if a cure could restore the victim?

I wonder if MW, once cured, would even recognize me anymore. I can't image her caring for the person I've become. I certainly don't like him much.

So if MW were to become healthy again, could I recover too? Or would is it just too late for us anyway?

2017.07.07

I joined a support group today. Yup, I've become one of those people. Enfeebled.

To be fair, it isn't a real group - "HDSA Caregiver Support Group". Just an on-line thing. And, oddly, they only allow so many accounts to sign into their sessions and all the spots are currently full, so I won't be able to attend any meetings. 

Still. I have a support group. 

What a joke.

***

Recently, MW has suffixed her bouts of enraged aggression with timid niceties. She'll attack me with all the fervor of a Templar, turn around, and then start some banal chit-chat without even acknowledging that'd she'd just called for my head on a pike. 

I wonder how much of this is early on-set and how much is self-preservation. I've timed it: if MW is not otherwise occupied with something like a TV show or a phone call; two minutes will not pass without her calling upon me for some service or with a question - usually about her health ("Cancer? Is this cancer?"). 

If I'm in the house, she is incapable of being by herself. She needs me around her constantly.

And yet, everything I do infuriates her beyond reason. Or everything I don't do. It doesn't really matter. In the past week she's reamed me for stopping at yellow stoplights; driving too fast to make it through a yellow light: putting too much water in her bottle; not putting enough water in her bottle: waking her up when she'd asked to be woken up; not waking her... You get it. Oh, and the things I have no control over; like when the computer doesn't work or the TV goes out - that's my ass right there. 

I take it - I have to - but these recent turnarounds rile me. Is this next level shit? Is she sliding into the next phase of dementia where she can no longer conceptualize her own behavior? I'm used to her getting and keeping a mad on for hours if not days - that, at lease, seems natural once you get past the point that it isn't justified - but these sudden reversals are confusing.

Unless it is self-preservation; where she realizes she can't both destroy and use me at the same time.

Well, this is something I can ask my support group about.

***

Saint or Monster?

Based on MW's comments last month - when she said she never wanted to know - I have been strutting around the place with my halo cocked at a jaunty angle. Only room upon this cross for the chosen, you know. A few days ago, however, something happened that gave me pause.

A small thing.

After MW had finished writing down her daily reminder notes, sticking them all over the walls with masking tape, she spent a few awkward moments trying to fit the cap back on the Sharpie - getting her thumb good and inked in the process.

I went to take the pen and cap from her, but then stopped and thought; "No, let her do this herself."

Followed immediately by another thought; "Why? Degenerative means this won't get better. So what if MW gets the cap on today? What about tomorrow? Next week? Next month? Holy shit, next year? What difference will it make if I take it away from her now?"

By then it was moot - she'd managed the cap.

And just like that, I'm back to being a monster.