By Ian Denchasy
In November of 2013, we made the decision to bring Alicia’s mother home from convalescent care to live on Our Urban Farm. Our main motivation was her doctor’s diagnosis that Anita (her real name) was losing her battle with the triple-headed monster of Parkinson’s, Alzheimer’s, and dementia and would soon (within a few months time) turn for the worse and end her stay in this life.
We did not – and do not – want her spending her final days wasting away in bed, lonely and abandoned, by the family to whom she’d dedicated so much of her time, love, money, and support for so many years. She may no longer recognize any of us, but we’ll be damned if we’re going to let her die without some decent attempt at giving her a dignified exit. So, with no shortage of trepidation, we informed her care facility that she’d be returning home to live with us and moved her in two weeks later.
Like most people, we’ve never received any training in senior care and had to rely on our experiences raising our son from infancy (a period which shares many of the same tasks and difficulties), books, and YouTube. Anita can no longer walk without assistance, nor communicate beyond the occasional yes or no mixed in with unintelligible babble; this means she can’t enunciate when she needs to use the restroom and can’t be trusted to hold her urges without an adult diaper on at all times. Likewise, if we do manage to get her to the toilet to do her business, we must not only wipe her, but help her back up and into a fresh diaper and clean pair of pants. Obviously, with no clue as to who we are, she panics most of the time and becomes extremely agitated, struggling to resist us as we go through the process day in and day out. That said, for the first three months, the bathroom routine aside, Anita managed to crack a smile most of the time and oftentimes we felt she was following along in our conversations, even if she couldn’t take part or respond directly. She even improved her dexterity over the first few weeks in our home, managing to step up and down the stairs at the local school, walk to the corner and back, and even blurt out intelligible sentences now and again. We were filled with a sense of hope that if she could maintain this progress (or at least halt in her regression), we might enjoy a few extra months of quality time with Mom before she checked out.
As we approach the latter portion of March, however, it’s becoming apparent that Mom is beginning to turn toward what we jokingly refer to as “the dark side,” whereby her eyes widen at the sight of our presence and she retreats into full-blown paranoia, attempting to hit, kick, and generally resist us as we attempt even the simplest tasks (changing her shirt, for example). We’ve always known the dopamine medications can exacerbate emotional swings and with her dementia/Alzheimer’s progressing, her bouts with madness are getting more frequent while at the same time her ability to control her movements are diminishing despite her meds. A nasty bed sore has opened a one inch hole in her back which requires daily treatments of antibiotics and dressing changes. Our trips to the emergency room now number three in just the past two weeks and a brutal seven day stretch was capped off with Anita vaulting herself out of her wheelchair while out for a walk and hitting her head on the concrete in our driveway (producing a two inch gash above her forehead). With bad days now outnumbering good (read: bearable), we are forced to seriously consider moving toward hospice, stopping all non pain related medications, and allowing nature to take its course. This is a discussion left ultimately to Alicia, with me offering support to whatever she wishes.
The one monkey wrench in this entire scenario is that Alicia was offered – and accepted – a job with our local Whole Foods Market. Though part time, the hours skew closer to full-time than the other direction, meaning large blocks of time where I am Anita’s sole caregiver. Though I am north of 200 pounds and can overpower Anita’s slight frame, it’s still difficult to maneuver her into the bathroom to change her diaper, bathe her, and attempt to get her to eat when she’s resisting me as though I’m a serial rapist attempting to violate her. And this doesn’t take into account the blow to my psyche having to witness her in this horrible state day after day. Depression sometimes creeps in despite my normally optimistic disposition and knowing Alicia must be experiencing even worse emotions around her mother’s deteriorating state of mind is doubly crushing. Intimacy is now almost impossible as our minds are preoccupied with getting Mom through another day. I get angry when Anita doesn’t cooperate and have to repeat to myself that none of this is her fault and restrain my own urges to hit back. There are also times I fantasize of putting a pillow over her head to end her suffering once and for all, but alas I lack the courage and wherewithal to do so. Am I a bad person to think this way?
Despite the challenges, I still believe bringing Anita home was the right decision; the fact our son gets to see her life play out is justification alone, and every now and then she’ll smile or laugh when she overhears us talking to remind us who she once was. I realize that her diseases will never be cured and her lifespan is now a matter of months whether we continue our present course or decide to shift toward hospice care. It’s just so unfair that this wonderful woman who granted me my most precious possession in life – her daughter – should have to spend her remaining days – literally – in living hell.