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Our Family’s Reality During COVID-19

by | Jul 16, 2020 | Article, Stories | 3 comments

A fall in February meant an ambulance ride to the hospital for my Mom with fear of a fractured hip. Thankfully, x-rays showed there was no fracture, but extreme pain warranted a hospital stay. After many tests, pokes and prods, a pacemaker was recommended. Low pulse rates often cause dizziness and even passing out. Was this the cause of my Mom’s fall? After discussion with my two brothers and Mom, we agreed to the pacemaker. Rehab at a local Nursing Home was recommended after surgery to manage pain and gain strength. Made sense. The day after being admitted into rehab, I was notified that Mom was in A-fib, which means her heart rates were irregular and fast. The next day, my brother Dean and I took Mom back to the hospital for a procedure call a TEE Cardioversion. Basically, the procedure shocks her heart back into rhythm. The next day, March 6th was Mom’s 95th birthday.

Lynn & Mom in the livingroomMy two brothers from out of state came for Mom’s big birthday. This was a special day she looked forward to and wanted family with her to celebrate, along with a couple glasses of wine. After all, how often do you make it to 95, she would tell all who listened. The plan was to take Mom to the restaurant on the campus, with birthday cake, presents and yes – a glass of wine or two. When I arrived at the Rebab unit, Mom was in a wheelchair with her back to me. I moved in front of her and said, “Happy birthday Mom!” She looked up at me and mumbled “Huh?” I repeated myself and could tell something was not right. The Doctor on site evaluated Mom. It appeared that right before I arrived, Mom had a stroke. The Doctor suggested we continue as planned; go to lunch and see how Mom did. She started out OK and then I had to feed her. We thought we were witnessing another stroke. My brothers took Mom back to her room and talked to the Doctor. We had limited time to get Mom to the hospital for help if we so choose.

The back room at the restaurant where we were celebrating Mom’s birthday, afforded the family time to talk privately. What should we do? After conversation, I found myself asking my family, “what are our goals”? “What would Mom want?” I teach about this all the time, but never thought I’d be leading my family in this very important discussion. Mom’s voice was the loudest voice in the room, even though she was not physically with us. We decided – no more hospitals, no more procedures, no more pokes, no more prods. We only wanted Mom comfortable. She’s had a good life, she knows where she’s headed and wouldn’t want extraordinary measures to keep her alive just to add days. She’d want to allow for a natural death.

Then COVID-19 hit. Until a week ago, I hadn’t seen my Mom in person since her birthday due to COVID restrictions. Mom was moved to a Nursing Home because her home at the Assisted Living facility could no longer meet her needs. The contents of her 1-bedroom apartment is still fully furnished because we, as a family, can not go in her apartment to move her belongings out. Mom does not understand why we can’t visit, why she only sees family on an iPad via Zoom, why we had to meet for the first time outside the Nursing Home facility with face masks and 6 feet apart. She wanted to hold my hand. She wanted a hug from my husband and me.

Nothing about getting older, having a stroke, memory loss, and this COVID-19 thing is easy. Having tough conversations with family is hard; but once again, I am reminded why I do the work I do, because IT MATTERS. Advance Care Planning should happen during all continuums of life. Our lives are on a trajectory that starts with a beginning and stops with an ending.

July 16 marks our “new” National Health Care Decisions day due to COVID-19. I encourage all of you to plan. My Mom has both a Health Care Directive and a POLST (Providers Orders for Life Sustaining Treatment). She has a plan. As a family, we know what that plan is – we have a roadmap. We also know what “living well” looks like to Mom. It’s still hard. It’s still tough. But what would it have looked like without Mom planning in advance, having that important conversation and the family not being in support of one another? Thankfully, we’ll never know that option. What a blessing we can give Mom in supporting her and honoring her health care wishes. What a gift of love she has given our family by planning and having the conversation before she no longer could.

I beg of you – treasure your loved ones today – none of us know what tomorrow will bring.

Our main events were a Lunch & Learn series where we explored a variety of familiar and new topics. We started with an introduction of our new Executive Director, Heather Thonvold, who shared about their visions for Honoring Choices into the future. This includes a much-anticipated rollout, soon to come, of the new Honoring Choices long form health care directive, revised for the first time since 2014. Other organizational goals include building a stronger presence across the state and increasing access to advance care planning resources for Minnesotans of all identities and needs.

Next up, Lynn MacKenzie, our Community Engagement Specialist, presented a play she wrote and produced to help inspire creative and open conversations around advance care planning: An Almost Murder Mystery. As one participant noted, “through the theatrical portrayal of informing the public about the need to complete advance directives, I learned to think outside the box about the many other ways to discuss the topic with patients and families.” Let us know if you’d like to bring An Almost Murder Mystery to your community!

Lynn also presented an ACP 101 presentation – a great introduction to advance care planning, health care directives, choosing a health care agent, having the conversation, and more. This presentation is available to be tailored to your organization – reach out if you’re in need of one of our speakers to bring this valuable information to your community or workplace.

Lastly, we brought in two of our National Network member organizations to speak about the kind of ACP work they are doing in their home states and the value of this national partnership group, which provides member organizations the ability to connect on national/universal issues and bring the knowledge back to respond appropriately to state specific needs. Eleanor Jones of Honoring Choices Virginia shared about their innovative work in creating and supporting intersectional mental health advance care planning resources from the grassroots to the systems and state level. Ellen DiPaola of Honoring Choices Massachusetts shared about the tools they have developed to promote and support individuals and care providers in continuous and effective advance care planning throughout the lifespan. Both Eleanor and Ellen welcome connections from those interested in learning more about their work, adapting their tools, and collaborating. Please reach out – and if you are from a state that is not yet part of the network, be in touch! We want to work with you.

We are grateful for your participation this month – and for all you do to promote advance care planning in your world. Lunch & Learn presenter Eleanor Jones may have put it best when she said, “There’s a huge gap between what folks can do and what they understand they can do, which is why we all exist as Honoring Choices in our states: to close these gaps.” Honoring Choices is dedicated to helping you understand how you can become an active participant in your own health care, throughout your life – and know what resources are available for you to do that well.

If this information impacted you this month, or you have ever found use of Honoring Choices’ tools, documents, or presentations – please consider making a donation so that we can continue doing this important work. You can also support us by joining us on Saturday, May 19 from 12-5 at Fat Pants Brewing in Edina, MN, where $1 from every pint sold will go to support Honoring Choices. See you there!

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