Since 2015, I’ve been caring for my husband with vascular dementia. Yesterday morning, a wave of despair hit me, as happens sometimes. This particular drenching’s theme was my lack of freedom of movement. I haven’t been anywhere by myself since December 2019, when my husband’s son took him camping for a few days. That’s a year and a half, right?
So I began wandering mentally, testing the possibilities. What if, after we’re both vaccinated, I could find a reliable companion to give me a few hours’ respite each week? What if the social worker at the gerontologist’s office could link me up with a certified aide who would stay in our house for a week or so while I went away? By myself.
You see, traveling with my husband is no small undertaking. The flights and car rental are peanuts compared to the packing, the organizing of medication, and the actual keeping track of him in unfamiliar, crowded locations like airports. He is slow to grasp directions and to respond quickly when something needs to happen.
Plus, in public places, he tends to disappear without telling me. Usually, he’s heading for the public toilet, but he may decide to buy a candy bar or some hot tea. I turn around and he’s gone. Panic.
He wants to be in charge of his passport, debit card, cash. OK. But he can’t operate the gas pump anymore. How much autonomy is safe?
Do I even remember what it felt like to be alone in the house? To make choices without the parameters of his needs? To relax in my own company without the time constraints of medications and mealtimes?
My freedom is more restricted by having a reconstructed family. My kids aren’t his kids, so they can’t be expected to feel the same responsibility toward him that they might have toward me or their father. If we weren’t reblended by divorces, I might feel justified in saying, “It’s your turn to take care of your father. I need a break.” But I don’t.
This is just one of my early morning rants. If you’re a caregiver, you’ll get it. That’s why I look forward to my twice-a-month caregivers’ Zoom group. They get it. They have solutions I haven’t thought of.
And—several caregivers in the group are worse off than I am, taking care of someone who is belligerent or incontinent or suicidal. It puts my self-pity in perspective and helps me back to grace and gratitude.
A good resource is www.alz.org