Dealing with heartbreak over a parent’s illness

Aisha Sultan, Tribune News Service

For the better part of this year my brain rejected that my father could not get the care he needed at home. He has advanced Parkinson’s, and it took a turn for the worse early this spring. My siblings and I were convinced this flareup would be treated like the others in the recent past — a short hospital stay, a stint in rehab to regain his strength and then back at home with my mom, assisted by a health aide.

He never regained his strength. His cognition declined. Believe me, I could not have imagined in a million years that my father would be in this situation. I knew my parents would age and face the declines that come for most people. But I did not fathom a world in which my father was in a skilled nursing facility, stripped of his independence and the comforts of home.

For the first several months, I walked around with what felt like a heavy immovable rock on my chest. I’m sure a therapist would have diagnosed that rock as a combination of anxiety and guilt. If someone asked about my dad, I could easily start crying. Once or twice, I called my mom, who was going through her own intense grief, crying. I’m not proud of that.

Three things made that rock lighter: I visit my parents in Texas frequently. By the grace of God, my father has always recognised me and been happy to spend time with me. Over the course of eight months, I began to accept that even if he wasn’t going to be who he was before, we could still share meaningful moments. I also started writing columns about the challenges and heartache over watching this slow, painful decline. I was taken aback by how many people wrote to me with advice and shared their own stories about taking care of their loved ones with neurodegenerative diseases.

I start crying just thinking about how much those notes meant to me. I felt so lost, and those words were an anchor. Other people had been through this — and far worse — they felt the same helplessness and grief. There was a common theme: you’ll never regret a minute you spend with him during this time in his life. So many others confirmed what I was slow to realise because it hadn’t directly impacted us before: our country does a poor job caring for its elderly. The vast majority of us can’t afford round-the-clock care at home. Even good nursing facilities are understaffed, and aide workers underpaid.

My father is an immigrant who became a naturalised citizen decades ago. Many of those who care for him are on that same journey. Immigrants comprise about 28% of the overall direct long-term care workforce, including nursing assistants, personal care aides and home health aides, according to data from the Kaiser Family Foundation. About one in three home health aides are foreign-born.

The government crackdown on immigrants that has ensnared so many legal residents creates a climate of fear and worsens existing staff shortages in this critically important industry. I wish the people cheering these ICE raids could see how many immigrants care for our elderly parents in the most vulnerable situations.

Maybe it would soften some hearts. The last thing that has eased my sadness and anxiety about my dad’s situation is meeting other people who have a parent with Parkinson’s. When I meet someone who shares this information, I see a knowing look in their eyes that I instantly recognize. I want to hear about all their struggles, about what their parent was like before they got sick, about how everyone is managing.

It makes me feel less alone. I’ve spent much of childhood and adult life trying to solve problems for my parents. This year I came up against a problem I could not begin to solve, at least not the way I wish I could. To be perfectly honest, it made me feel like a failure as a daughter.

A friend recently told me that I needed to believe I was still a good daughter. I physically recoiled from her words, like she had slapped me. How could I think of myself that way when I was so far away, when I was doing so little? You’re trying your best given the circumstances you’re in, she said. I keep thinking about her words as I get ready to spend the holidays with my family in Texas. We have several traditions that the whole Sultan clan gets together for — brunch at my brother’s home on Christmas Day, a game night, barbecue and brisket day. The rock returns when I prepare myself for what I already know: this will be the first time my father won’t be at home for these moments. I’ll look for a way to create memories where he is.