Villainy is afoot.
While Stage 7 dementia has its benefits and its misfortunes, I am saddened by the recent downturn my caregiving proficiency has taken. A decline so gradual it took me awhile to perceive.
I suspect I've inched down the path of Indifference for emotional protection. And I've discovered that when I'm not wielding indifference, I'm unsheathing Impatience to rain down on Mom's head.
On the rare occasion when I can conjure good cheer towards my mother it is not often heartfelt; a song and dance lacking sincerity, dishonest in its cheapened grin.
My hands-on Mom days are now mostly hands-off. I begin by staying in bed listening to her shuffle here and there while I avoid committing to the day for as long as possible - if I don't get up I don't have to deal with her, with dementia.
I eventually rise knowing dementia will punish me mightily if toileting does not commence.
I get her tea and oatmeal, her pills for the day tucked in raspberries, buried in the pasty grains slathered with maple syrup. During feeding I coax first when she nods off, then snap when I have deemed the process is taking too long.
When she is fed and dressed and I'm fairly certain no pooping is imminent, I disappear into the basement to escape, shower, steel myself against the day. I dawdle, delay my ascension up the staircase, back to two people I don't enjoy very much - Mom and myself.
We go for drives in the afternoon. She is most content when moving - staring straight ahead or napping as we traverse the countryside. On good days we visit family/friends, the oppressive silence of Mom broken by the cheerful cacophony of relations.
I always receive kudos for The Other Girl and I during these driveway visits. They know this is wearing on us and are grateful (and based on our track record as daughters, quite surprised!) that we have kept Mom a top priority in our lives. But I feel like this empress has no clothes.
Once home she doesn't want to get out of the van, doesn't want to go in the house. While I still empathize (I know she feels trapped within the walls of her own home), I now dismiss this as nonsense, no longer compelled to spend 10 minutes in the driveway trying to make it safe for her.
I bark commands until she complies, her expression sullen, mine clouded with thunder.
I enjoy cooking dinner, a bright spot in the day for me. Mom's ability to help moved squarely into the hinder column a couple of years ago. Yet, the last few months I've had a slight reprieve as she began napping around that time of day. But now she has scaled to new heights of obstruction; molesting raw meats and veggies, reaching for hot skillets, pawing at burner flames - mere inches from my person at all times, bumped into, stumbled over, stepped upon.
I redirect, provide diversions, but by the end of preparations I'm fed up, snapping rudely at her, ruing the fact that the hospice bed did not come with restraints.
I get through the dispensing of night pills. I observe her movements, waiting for the most opportune time to toilet, get her in pajamas, brush her teeth, wash her face and hands, with the least resistance.
Then it is time to wait for her to wind down, to gradually cease her endless shuffling - my cue that she is finally ready to sleep, to be off my plate, out of my hair for the night. I tuck her in, kiss her good night, tell her I love her which is an unquestionable fact but many a night the words ring hollow, lacking the intonation of devotion she deserves.
I often wonder what she thinks. Does she ask herself who is this churlish, indifferent companion she's been saddled with? When's the fun one going to come back?
After four years of family caregiving I know I am drained. My cloak of compassion is ragged, thread-bare. I now view Mom more as a job I need to endure versus a heroine's adventure to walk her to death's door. Instead, I am villainess, looking for a tower to lock her up in so I may pursue my own pleasures unhampered.
I ask myself, "How much longer will I be chained to dementia?"
And that is the crux of the problem.
In a tale of kings and queens, scary forests and fiends the characters do not know their fate, do not foresee the happily-ever-after that's coming - instead they stumble and lurch through their plot lines with no end of conflict in sight.
But we, the readers of these tales, know the end is near as chapters dwindle to final pages. We know a resolution is on the horizon. We are not left writhing in years of suspense.
In dementia you are.
If I could check Mom's backside for a barcode and an expiration date I would be able to fortify my resolve, banish my indifference, shore up depleted repositories of empathy, compassion, patience for another 6-months, a year...
And if it were known that dementia is going to take Mom the maximum distance of another 5 - 10 years then I could soul-search to determine if bending that much of my life to my mother's death is really in everyone's best interest.
Instead my current coping mechanism is to court indifference, give fruition to my frustrations, torment tenderness into a corner, bully benevolence out of my way. I have little interest in any of them anymore.
So I drink myself to sleep at night to lessen the blow, because when I am soberly self-reflecting my dereliction of duties weighs heavy on me.
I know I have not completely lost my caregiving acumen every hour of every day - at dinner last night something in our conversation whacked Mom hard on her funny bone, and I was awash in mirth at her few minutes of self-generated happiness.
I need to do a hard stop on the twin transgressions of Indifference and Impatience, and finish this journey with some virtue still intact.
Caregiver Fail: Me, pulling everyone into bed so I don't have to get out of it.
"Compassion fatigue." Wow, what a perfect was to say it, rsk. In my experience compassion fatigue has come and gone and come and gone several times for me, and probably will continue this cycle. I hope it dissipates for you soon so you can build up your strength for the next onslaught - that's the only strategy I've been able to execute.
I wish you a good caregiver day tomorrow. And if it can't be good, I hope it's at least better than the day before.
I so appreciate you sharing this. Compassion fatigue is a struggle for me as well. I'm just numb my ost of the time. I don't lose patience (yet?)and haven't snapped at her. I'm just numb and dull.
Ohhhhh lady ... I feel for you. You must not beat yourself up. Read that again. Now turn it into a mantra: I WILL NOT BEAT MYSELF UP!!!! You've done a heroine's work already. And the uncertainty of when the journey officially ends is both a blessing and a curse. I love that you find vestiges of mirth. Grab them. Hold tight. Make them unable to be pried from the firmest of clenched hands -- and then slip them into your warrior's quiver. These will be your salvation later in the journey. And, inasmuch as you will hold those mirthful memories like a vise grip, just as easily LET GO of the nagging feelings of impatience and indifference. They are…
Dee, I am sorry to hear about your mom. Even though I too would feel the blessing of her passing, I'm guessing losing her still provides plenty of heartache to not feel grateful about.
And I thank you for your advice. I don't consider it abrasive at all as you know the journey we are on and are offering a recommendation for a different path from the perspective of having been through it. However, I'm not there yet, and neither is The Other Girl although it came up briefly a couple of bottles into a wine night a few weeks ago! But once sober, we agreed we're not moving in that direction just yet.
You pop by to check up…
There is a point at which there is no point in you continuing as the caregiver. The employees at the facility didn't do things as well as you do, but from what I remember about what you wrote at the time, your Mom was more aware of herself and her surroundings back then. Now it sounds like she is just as indifferent to you being her caregiver as you are frustrated at being her caregiver. Your life matters too, you know. Here's some (admittedly unsolicited) advice: I think you should give yourself permission to change the situation so you can participate in your own life (and in your OWN goals) again. Enough. She might like the hiking opportunities better …