Barbara Beckwith, age 87
We’ve always done things together, my husband and I. We fell in love in college, married and raised two sons, biked and hiked, cooked and danced, shared our disparate views and careers, he as a scientist, I as a writer. We learned together how to argue successfully, how to be okay with each other’s backseat driving, from shouts of “slow down, it’s icy!” to “watch out! – the truck on your left is cutting you off!”
Our togetherness has changed since Alzheimer’s entered our lives. From the time we were told he had “mild cognitive impairment,” and even when it shifted to “early Alzheimer’s,” we remained a team.
For more than a year, we together managed his meds, paid our bills, struggled to complete our taxes. We made socializing with friends a joint challenge: he’d start a story, and I’d supply the name of a French town, favorite film, old friend, justice issue, book title, historical fact.
As his condition changed, I resorted more and more to “20 Questions” guessing, as we both struggled to find the word he was searching for, what story from our joint past “we” could tell.
During the three years that my husband remained at home, “we” shifted to those of us who cared for him. Family members who took over the finances. Friends who offered soups and casseroles, when shopping with him became too difficult for me. Hired “companions” who I greeted with tears, grateful for the caregiving time off they gave me. Neighborhood pre-teens who listened and responded with respect when he talked to them – about what, they could not discern.
Before my husband had to move to a memory care facility, we “care partners” had to confer with each other behind closed doors over how to deal with multiplying crises, which in turn created new problems. He noticed and grew suspicious, accusing us of not telling him what was going on.
And he was right: we were not telling him what was going on. As we were becoming close as a team, my husband seemed to me to be drifting away from his former self.
At each neurology appointment, when asked how he felt, he’d say he felt fine. Then I’d be pulled aside and asked – how is he really? And how was I? Was I safe?
Was I safe? Depends on your definition. He often became frustrated. He thought I’d hidden his wallet, his hat, his glasses. He would imagine projects that didn’t exist and accuse me of not helping him achieve them. He would throw around papers or books, and bang on the table or wall in anger.
Even though I knew it was the disease that was making him angry, I initially over-reacted. I found myself responding as if to a domineering man. If he yelled, I would shut myself off in another room and shout: “Don’t you get violent, or I will call the police!”
My threats didn’t work, and anyway, he didn’t hit me. What calmed him would be an apology from me for hiding his hat, taking his wallet, or blocking his project – whatever he thought I’d done. I could then shift from being his adversary to being his collaborator: “Let’s look together– I’m sure we can find it.”
My friends told me I was doing a great job taking care of him. But my need to be constantly on alert, ready to respond to confusions, accusations and outbursts – plus the lying I had to do, got to me. I resorted to pacing our apartment or roaming the neighborhood streets, babbling, “I’m a good person, I’m a good person.” I started seeing a therapist to better understand what was happening, and to keep myself under control.
Now, four years later, I regularly spend time with my husband in his memory care place; it’s within walking distance of where we lived together for 50 years. In his new home, we don’t need to argue over where he misplaced something. He can tell me which staff or residents he likes and which he imagines have taken his belongings, or are trying to kill him. I now know to respond with a sympathetic “hmm.”
We go to live jazz performances, join in on folk song singalongs. We look at photo albums, listen to music, hold hands, dance a bit, embrace a lot.
We’re together again.