Every time I read these stories, the pain of grief seeps out of my heart all over again. I know our story is more than illness, surgery, disease, hospice, and death. It is a soul-binding love through 45 years, being best friends, voracious lovers, readers, travelers…so much more with each other now lost to the void. The two of us created our third entity.
Underneath all this last decade is the reality of health care in America. Our story isn’t unique, although it may seem that way as you are living it day to day. It’s tragic for so many and not just in this country. All over the country families and loved ones discover systems that do not get you timely appointments, misses diagnoses, and doesn’t let you live and die on your own terms. Quality of life suffers with us and our loved ones. All we are left with are questions.
Why is it so hard to get answers from either a medical system or a for-profit insurance company?
Why do we have to wait weeks or months to see a doctor? How do we get more young people into medicine by changing the health-care system and relieving them of monstrous debt?
Why do we spend so much money covering our insurance costs, co-pays, and medical treatments that we go into debt?
These are the big questions we faced for the last decade. We don’t have the answers, but I would venture to say some bright young medical students could remake a broken system that puts the patient first.`
We learn lessons throughout the heart-wrenching times: how to ask for help, how to advocate for your loved one, how to plan times together so they will be even more meaningful to all family and friends.
We learn to talk heart to heart, to appreciate every new day from sunrise to sunset, to relive the funny times and the vacation times, and to laugh at mistakes we made. If you are at all like us, there were many mistakes…like trying to find our Nova in a large parking garage in Laurel, Maryland, ready to report it stolen, when we walked by (for the third time) our station wagon and realized we had been looking for the wrong car.
I stumbled onto a mistake trying to change our screen saver on our computer. Best mistake ever. Somehow I set the photos to rotate though all 7000-plus pictures over two decades – our artwork, our travels, our marbling efforts, our friends. We had endless memories to review and laugh about. There were fire ants on our quilt in our hidden spot and endless cactus that never bored us. Point Loma was our first stop every time we went to San Diego. We were giddy to see dandelions and grass at a rest stop the first time we went east after 16 years as desert dwellers. That one slip on the keyboard gave us memories we had forgotten and could easily revisit whenever we wanted. That mistake was a huge gift.
Our purpose with these stories is to give hope and strategies for navigating the unwieldy reality of health care, as well as suggestions for an end of life that allows you peace. I was a strong advocate for Dean, and I encourage you to arrange with someone you trust to advocate for you and your loved ones. The pandemic showed us just how overwhelmed our health care professionals are and how fragile our health system is. Learn everything you can and advocate for change when and where you are able. We were very lucky in our advocacy and in our financial assistance to supplement our health insurance. Leave no stone unturned.
If you are reaching the end of life, check on hospice and palliative care services in your county or state. They are amazing people and want whatever you need to live your remaining days as comfortably as possible. They are the Angels who walk among us.
With love, compassion, and comfort,
Linda and Dean Moran
2021-2023