The balance: the benefit vs. the burden

These are tough times: the 100,000 mark this week for known COVID deaths in the US, the racial tensions spewing forth first in Minneapolis/St. Paul (I know those neighborhoods well!) Used to shop at an earlier version of the Target. The lack of leadership in the White House. The locusts in East Africa. I could go on. . .

My mom and sister are both safely buttoned up in an Assisted Living and Nursing Home in Ohio. They are healthy and I am appreciative for the safety conscious facility, but . . . You knew there was a but coming. While deaths have been rampant in other less cautious facilities, and I am sure their are legal concerns in our litigious society, I am beginning to ask myself: Burden vs. benefit. Is this quality of life when . . .

Both celebrated their birthdays this month 90 and 58 respectively. We did our best to make it special for both. Sent gifts, flowers and cards. We ordered a special dinner and found someone who was "legal" to share it with my mom, someone whose company she would enjoy. We sent cupcakes to my sister. We Skyped and sang . . . did the best we could considering. Fran and I Skyped my Mom, but our Skype appointment was too early--the only one available on the day--and Fran kept falling asleep and Mom struggles with the Skype technology. I joked my way through asking Fran's helper to tickle her so she could stay awake.

For her own birthday, Fran wondered why she didn't get a birthday cake. I tried to explain: "The cupcakes are little birthday cakes." For those who don't know Fran, she was child #5 for my parents and #2 born with Down Syndrome. Her older brother died at age 6 and my parents went on to have child #6 who is a doctor in California. Fran's mind just couldn't quite grasp that cupcakes were indeed her birthday cake. Her big heart and guileless love keep her upbeat and a source of light and joy to her caregivers, but her life is pretty dull. When I ask her what she's up to when I talk with her on the phone almost daily, she says, "Relaxing and taking it easy." A nice way of saying she's bored beyond tears. She can't yet go out to her three times a week Adult day activities program and the NH isn't holding group activities--so no Bingo which she likes a lot. Staff do their best and one of her sisters Skypes with her everyday, Monday through Friday. But still, the two months + is getting very long. We kept her at the NH after she graduated from hospice so she could be close to my parents.

Mom's wing is opening up June 1st, but Fran's is still closed. Open for Mom means visitors, no more than 2 at at time, can call for an appointment to meet her on the patio for 30 minutes on Monday thorough Friday between 8 and 5. Of course the visitors need temperature checks at the check-in desk and must bring masks and observe social distancing. I get that staff are too stretched to manage it on the weekend, but what about family who have to work during the week?

Mom wants to get her hair cut, has been wanting to for a month. She read the letter as an okay to do that. "Not yet," I told her. Disappointment on her end and my sisters and I began strategizing how we might bring the hair cutter to her--can you cut hair and still be 6-feet away?

But the nurse who trims her toes can now set up an appointment--we hope. Pat will need to skip the foot soak so she doesn't have to lug water and she will somehow need to forecast the weather, no roof to shelter from the sun or rain. Of course, Pat was all set to trim mom's toenails a month ago--she's a nurse the facility should let Pat in, others had, but Mom's wouldn't.

Now I'm not advocating doing what some governor's have done--opening up with little regard to protecting the health of the public, especially the most vulnerable. And I am furious about the lack of modeling of appropriate mask wearing with the man in Washington. I don't support forcing North Carolina to hold the Republican convention this summer. I'm appalled at the lack of uptake in some areas regarding masks and social distancing. I could go on.

I have listened to the weekly COVID call for providers at the Department of Health here in Rhode Island. The thoughtful leadership on the part of the governor and health department here, balancing the challenges are impressive and she gained notice from George Will. That said, the perspective of my Mom's "foot nurse," Pat, gave me pause:

This whole situation is so hard on many of my clients, especially in senior housing where the managers set the rules and make residents stay in their small apartments. "Quarantine is when you restrict the movement of sick people, Tyranny is when you restrict the movement of well people". . . Common sense is no longer common. I lost a dear friend at Hospice. Their rules only allowed one visitor a day. Her son saw her in the afternoon, therefore the husband could not see her that evening. She died the same evening. Where is the comfort/compassion in such a case!

With this crisis we all struggle to find the balance, the right answers to the evolving tough questions that are not as black and white as we wish. Where is the balance between protection and harm. Is it quality of life to sit alone in your room, eat alone in your room, and talk with loved ones only the phone, or try to use Skype week after week? When is the burden too great? What is the benefit of a rule if one can't say goodbye to those you love in the final hours, my heartaches for her husband -- Pat's example above. There are no easy answers here. Every rose has its thorns.

With crisis the weak links in the infrastructure or lack of infrastructure are exposed. And as either Churchill or Rahn Emanuel said, don't waste a good crisis There are opportunities. I hope and pray that we can seize these opportunities to move forward. And as we muddle forward may we weigh carefully the burden and the benefit and continue to seek the right balance.