It was a beautiful day. Gorgeous, if a bit hot out in direct sunlight. I arrived at my parent’s condo around noon after a visit to the CSA to pick up the week’s veggies and fruit that I split with my sister. Despite the promise of such a lovely day, my parents were strangely inert. Dad was reading, or attempting to read, a National Geographic, and my mom was sitting in a chair in the dining room area. Neither speaking or moving around at all.

Dad really, really, can’t read small print anymore. His macular degeneration won’t let him focus on anything that small. I suggested large print magazines or books. Libraries often carry both. He rejected this out of hand because the main library branch moved to a busy area downtown where you have to pay for parking. He was affronted by the very idea. I said “but there are branch libraries.” He had no idea there was such a thing. Of course now in the midst of coronavirus you can’t just go into the library and browse around until something catches your eye, but you can place a hold online for curbside delivery. Then there was the excuse that his library card had expired. I suggested that he could renew online. I suggested books or magazines that can be downloaded on a tablet and the text size adjusted. Or audiobooks. He said he doesn’t drive around that much anymore to listen to a whole book. I said I never listen to audiobooks while driving, but listen while cleaning the house, working in the garden, or cooking dinner. 

I couldn’t make any headway with him, he’s stuck in his groove, and it made me realize just how small his world has become, aside from Covid-19 which has curtailed everyone’s world. Or anyone with sense, anyway. Of course some of it is mom, but it’s his own physical frailties that are holding him back too. He has pulmonary arterial hypertension which he is fortunate enough to have treated by meds without the oxygen. At least not yet. He tires more easily and naps a lot. The heat affects him more than he’ll admit, and so does the cold. It seems like his comfort zone is about 73 to 80 degrees. He’s in remission from lymphoma and we can only hope another form of cancer doesn’t make an appearance. 

This is all very hard for him and his first impulse is to blame my mother, as if she can control her condition. I know he resents it and deep down I feel like he resents me and my sisters for not doing enough. As if I don’t feel guilty enough. At 83 his mindset is the good old days of the post-WW II era when housewives stayed home and were the caretakers. Caretakers of growing families and aging parents. Then again, in 1962 life expectancy wasn’t 82. It averaged about 72 so there wasn’t a lot of caretaking of elders.

This logic has always been ironic to me. My mom went back to work full time when I was 12 and my sisters 8 and 6 respectively. She worked the second shift as a nurse’s aid at that time so started at 3:00 p.m. and it was my responsibility to look after my sisters after school before dad came home as close to 5:30 p.m. as he could. I’m pleased to report there were no major incidents in my tenure as caretaker. No broken limbs. No fires. Although the dog we had at the time was a biter and that caused some incident when he chased the kid across the street and bit him in the leg. 

Still, the point here is that my mom went to work when I was young and my sisters younger still. There was a definite expectation that as soon as we turned 16, we would be gainfully employed after school and/or on weekends, which my sisters and I accepted as a matter of course. We’ve always worked. So I guess I can’t reconcile myself to the notion that we would or could abandon our work and take care of my mother full time. 

This is not at all an unusual scenario, i.e., someone, often a daughter, quits work and caretakes a family member. That’s crazy, and not realistic in the long run. A person can’t take their most productive, probably most high earning time in their working life, to caretake a relative and not have health insurance, contribute to social security, or sock money away for the future.

So, you are stuck between a rock and a hard place. If the person needing care doesn’t have much in the way of financial resources, who can or will provide care? When is the decision made to bring a caregiver into the home, even part-time? How will this caretaker be paid? In the days of Covid-19, do you WANT anyone coming into the home from outside? Then there is the spouse of the person needing care. They need resources to live on if their spouse with ALZ dies before they do so they can’t be bled dry paying for care either.

Honestly, I can’t afford to not work. I don’t live in a fancy-pantsy house, believe you me. It’s a modest framed house built in 1900 or so that now needs some major overhauls because it’s 120 years old. What can you expect? We all need an overhaul now and then. My sibs also can’t afford not to work, so we work.

We work and feel guilty about not being able to do more.