Maryland Aging in Community

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Caregiver Wisdom: Mindful in the Midst of a Tender Process

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Boats x rainbowsI strongly believe it is in sharing our stories that we build community, our stories can help guide others through rough waters. Families and loved ones face many lessons providing care, it is profoundly deep heart work. Caregiving is a critical part of aging in community. Noelle a colleague from Montgomery county who led the Commission on Aging study on Caregiving this summer  agreed to share a personal story about her caregiving with her parents who are aging in community.

He donated the sailboat. He did not sell it. He donated it to the local fire department.

 He loved that boat. WE, all my siblings, our spouses, our kids, our friends—we LOVED that boat with him as the Captain. So many amazing memories tied up (no pun intended) in that 22 foot vessel. He asked each of us if we wanted the boat. Some of us thought he was joking around. Others simply were not able to take on the responsibility of a boat 12 hours and 14 states north. Nothing more was said. He just donated the boat.

 Always the student, an avid reader and traveller he spent years reading about historic figures traveling the seas, venturing to new and never before seen lands experiencing exotic peoples, plants and spices. When he retired he decided it was his turn for (more) adventure. Learning to sail became his newest passion.

 Sailing lessons became a year ‘round activity on the Bay, on the river, in harbors and finally on the ocean. Certified by the U.S. Coast Guard as an official “sailor” he purchased his sailboat and christened it “Andiamo”, Italian for “Let’s go!!!”— his modus operandi. He was always on the move.

 An avid outdoorsman, he knew how to navigate by the stars on land. Navigating by the stars on a sailboat required focus and skill. He spent years learning the night sky from a new place on the planet and tested himself and any one around him until we all knew the constellations from up north. Then came the nautical maps—learning about the unseen world beneath the boat: the craters, boulders, ledges, bouys. The deep water in front of the house was always a glorious gorgeous source of solace and pleasure. Learning a new landscape without actually seeing it, using new tools to safely navigate, avoiding potential danger (and lobster pots) became a new challenge.

Boats I will never forget my first time out with him, the maps and the depth finder. The day was gloriously clear with moderate winds and we tacked our way out to the ocean. On the way back we came around a small island surprisingly populated by 30-40 sunning seals. They took our breath away. We watched, we listened, we didn’t move. But the boat kept moving. At the tiller, I refocused after a minute or so. I saw birds on or in the water a few hundred feet ahead sitting in a straight line. Not moving. “DAD—those birds, they’re in a line. They’re standing on a ledge!!!” I won’t share the choice language and chaos of the next 90 seconds. Let’s just say we learned a lot about rapid-fire navigation and piloting a sailboat in short order.

 We all learned how to tie nautical knots (“each has its own purpose”). Pieces of rope were in baskets wherever he happened to be. He would spend hours practicing tying those knots. Some were so beautiful one could forget their strength and purpose. He found the process meditative and relaxing. Over and over he practiced. He can tie any knot in his sleep. So can we.

The big adventure of the season was sailing to a neighboring harbor, tying up and heading into town for an ice cream cone or lunch with the Captain leading the charge. Always leading, always teaching, always in charge.

N HouseThey planned a marvelous adventure for the family in celebration of their 50th wedding anniversary. The entire extended family gathered at a summer camp at one of those ubiquitous small New England towns not far from their home. A family reunion, a wonderful gift of an entire week together swimming, sailing, eating, running, golfing and playing charades late into the evenings. Unbeknown to us he had spent a year carving small wooden clocks out of gorgeous walnut, cherry and zebra wood for each of us (and we are many). He wrote a poem about the wonder of life, how it brought the two of them together and to this place surrounded by their children and grandchildren.   A magical week made more poignant because he was scheduled to begin treatment for a sarcoma (bone cancer) in his neck identified by accident during a physical exam—an amazing piece of good luck, if you can call it that.

Surgery, radiation, painful recovery made easier for him by thoughts of times spent on that sailboat, the nautical maps, the knots.

I was caring for my youngest daughter who was pregnant and, at that time hospitalized with a devastating illness. I left her in the good care of the doctors. I left my husband to his own devices. I left my work, but was glued to my blackberry and phone in between crises that followed.

She doesn’t drive. Her eyes do not cooperate and, without the benefit of formal driving lessons, driving frightens her. She would not leave his side   I arranged for and stayed with her in the hotel and brought her back and forth to the hospital where she spent the days in a chair facing his bed, worrying for him and about him. “He’s falling apart”, she said. “Bit by bit he’s falling apart” she said, her eyes wide with panic and recognition of unwanted change. I spent the days in a chair in a waiting room so they could have their privacy.

They relied on me to navigate the healthcare system and conversations with the various doctors, nurses and technicians. I advocated for pain meds, clean sheets, food, a bath, milk of magnesia, physical therapy. I got him out of bed for a walk after the doctor said he had to move. He leaned on me. He leaned on me and we walked round and round the nurses’ station. They relied on me for discharge and transition planning and all related communications, for groceries, for medications, visiting nurses, physical therapy.

 I did not let them see my fear, my worry, my stress. I did not tell them about my daughter, their granddaughter. I did not share the overwhelming weight of worry, the crushing sense of responsibility, the agony of fear or, the craziness at work with my husband. I did what I needed to do when I needed to do it.

The thought of asking for help never occurred to me. I do help others navigate similar nightmares for a living. Somehow, when it happened to me everything was different. The thought that I might need help worried me. If I felt so overwhelmed, exhausted and fearful I must be doing something wrong I am strong, organized, capable, reliable, trustworthy. I am the oldest daughter of an immigrant family. I am chosen. I am responsible. I will do what I have to do.

N parents I took a basket of ropes to the hospital. He started tying knots. They began talking about next steps: radiation, transportation. They were stronger, more confident. They worked the details out between them. They did not need me to drive them to the medical center for treatments. They needed my presence every day so they could report in and check to make sure they were on the right path. They needed me to present options and advice when asked. They needed me to step back and let them walk together toward whatever the future held.

 In the intervening years they took turns, as they say. She has an incurable lung disease. The medications used to tamp down the infection cause hearing loss and blindness, both of which are evident. He now has lung cancer and survived a nasty battle with a bone eating bacteria in his spine. They are more confident in their ability to address each issue as it presents itself.

 Their color is good, their eyes are bright. They choose to deal with their challenges through humor. They get out for coffee every day and sometimes they head out to dim sum for lunch. They are living and enjoying every second of their lives as best they can. They “have things in order”, as they say. Everything: finances, burial, anything and everything is organized and ready for when the time comes. And we talk openly about that time, death, dying. We are lucky to trust each other to engage and participate in such rich though emotionally challenging conversations—another topic for another day.

 He’s still tying knots. And I understand now why he donated the boat.

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