This isn’t a rant or a complaint, just information to help people understand one of the many challenges of full time caregiving.
My aunt has lived with us for almost three years. That first summer was physically, emotionally and logistically demanding. I was constantly exhausted and stressed.
The hardest thing at the beginning was not knowing what to expect and learning how to navigate changes that I couldn’t predict.
One change was the increased traffic of well-intentioned visitors. Except for my closest family members (brothers and cousins), visitors added to the chaos those first few months. Once I identified it as a stressor, I was able to set some boundaries. Most people respect them and are very understanding but we’ll still get the occassional surprise visitor. Who does that?
If you’re reading this and know someone caring for a loved one, please don’t drop in unexpectedly, it’s rude, inappropriate and disruptive.
I’m lucky that my aunt doesn’t have demanding medical or physical needs.
The hardest thing about being a caregiver now is the constant accountability and having to make detailed arrangement for anything that takes me away from the house. I can’t run to the grocery store if someone isn’t here with her. Weddings, funerals and every family event are tricky to attend because all my back-ups are usually attending those, too.
People don’t realize that every event and activity requires planning and arranging for someone to be with her, prepare her meals, help her in the bathroom, keep her on her schedule, let alone coordinating my own family members. I can’t tell you how often I thought I told my kids about a funeral or an invitation/event and they never heard about it. Blank stare.
It’s a chore to enjoy normal family things. I tend to opt out of movies, get-togethers with friends and family, dinner out or the occassional sporting event because it’s just easier than scrambling to arrange one or more caregivers.
Any solution is temporary. It’s great when people offer to help but it’s always only temporary. My daughters were just getting comfortable taking responsibility for 24 hour care to allow me to be away overnight but my aunt’s physical and mental abilities have declined so quickly that none of us are comfortable with that.
My mom and I will try to share caregiving as long as possible. My aunt will spend a couple of months at each of our homes to give the other a break. It’s much easier than trying to manage her care in a nursing home, for now.