Caregiver Chronicles VIII: ODTAA
ODTAA. One Damn Thing After Another, as Douglas used to say.
Today, I received a letter from the insurance company informing me that as of June 1, my auto insurance will be canceled. In three years, I have three times backed into another car while getting out of a parking space, totally my fault, which I dutifully claimed in order to reimburse the owner of the other car for damages.
Could those fender benders have been the result of the stress I carry as caregiver to an increasingly confused and fractious husband? Sure, but the insurance company doesn’t need to know about that. Everyone has heard the same warning: caregiver burnout is a serious, documentable threat to anyone caring for an adult who can’t take care of himself. Think of the distracted man running out to get medication for his incapacitated wife who, not paying attention to his surroundings, gets hit by a car while crossing the street to the pharmacy. Think of the healthy woman who has a stroke while trying to manage her husband’s dementia. Think of my fender benders. Everyone has a story like this.
I work at keeping myself in a safe place. First, I realized after a couple of years that Douglas and I would not thrive if I were to be his only caregiver, diapering, dressing, feeding, and being a companion to someone so frustrated with his condition that every single interaction involved high-decibel resistance and extended negotiation. Luckily, I had the financial resources to hire help and luckily, I found Amy, someone more experienced with caregiving than I will ever be, and that has made a huge difference. Learning to do the things Douglas used to do — managing the bills, the taxes, the lawn maintenance, the plumber, the man who came in to fix the roof leak — required an additional learning curve, something I could figure out by looking back at the battered rolodex and drawers of records he has meticulously kept over the years.
On the advice of informed friends, I found a therapist whose specialty is caring for caregivers. Another resource is the caregiver’s support group I have found through my church. These kind people meet every two weeks, sharing stories and caring for each other. Then there are my daughters and my friends, who check in regularly. There are many good willed people out there who recognize that we who live with a person suffering from dementia are living in crisis. I am grateful for the kindness of family and friends and strangers who have become friends.
Still, the daily rollercoaster of crisis and peace, good and bad behavior, agitation, delusion and unaccountably sunny good humor, are stressful, if not disorienting. For example, my college roommate, out of the kindness of her heart, took me in for three days at her rented condo in Florida. Before I left for that retreat, Douglas had decided that I was a treacherous, lying crook, and gave full vent to his opinions of me during his “sundowner” times in the evening. I went gratefully for Florida, leaving Douglas with Amy and a nighttime caregiver, Rosa, not certain how I would be received three days later when I returned.
While I was gone, all hell broke loose. Douglas, having determined that I had left him — permanently — took after the ladies caring for him, pulling Rosa’s hair, kicking her and brandishing his walker menacingly at both women. In the evening, it took two of them, and a sedative, to get him to bed. By the time I came home, Amy and Rosa were at war, each blaming the other for mistreatment of “the patient,” and each with her own version of the week’s events. The stress must have been terrible for them as well.
Douglas, on the other hand, was overjoyed to see me. He asked me if I had a new husband, and when I told him he was still my husband, and I his wife, until death us do part, he seemed overwhelmed with relief, hugging me and holding on to my sweater. Later, sitting on his commode while I sat next to him on the bed, he took my hand and told me how much he loved me, and I thought, “Okay, I can do this.”
I was back on the enemy’s list a day or two later, because I would not entertain getting on a plane to go to our imaginary “other house” in Florida to collect our belongings. To add fuel to his fire, Douglas has gone on a pill strike, and I was caught trying to sneak a heart pill, crushed, into his applesauce. He’s still on strike, so has had no calming, behavior modifying medications for several days. He’s been as calm and docile as a lamb for three days. Go figure.
Is it me that’s crazy? Did I make it all up? Am I an oversensitive princess and he’s just a fragile old man who needs a little help? It’s so hard to hold on to reality when reality changes so radically from day to day.
I’ll wait to see where we go from here.
