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Agency

When Dorothy Salisbury Davis turned eighty, I flew to New York for her birthday. She wasn’t feeling well, and during the three days I spent with her she finally admitted to some bleeding and a low-grade fever. I urged her to let me take her to her doctor but she was adamantly opposed. In retrospect, I suppose she was afraid of hospitalization instead of the festive dinner she’d been planning. At any rate, I respected her wishes, we had dinner. The next day I urged her again, but she remained resolute — or perhaps obdurate, and I returned to Chicago.

Two days later a good friend found her passed out on her living room floor. She was rushed to an ER where they diagnosed a kidney infection, eminently treatable. She was resilient as well as obdurate and was soon back in top form.

Dorothy lived to 98 in pretty good health except for her last few years, but the question of when she needed care and what kind continued to be a struggle. The friend who got her to the ER was also resolute and pushed Dorothy far harder than I ever could have or would have.

I’ve been thinking about that recently, thinking about agency. My husband has COPD and it is worsening. He doesn’t want to go to a pulmonologist; he doesn’t want oxygen. I think I have a right to insist he uses his inhalers, but I think he has a right to decide how much additional treatment he wants.

I’m torn on this question of agency. If he were younger, if he were as mentally sharp as he was at 75 (he’s 94 now), maybe he’d make the decision to go to oxygen or other treatments, but he might not. He needs me to administer any therapies he receives and he has never liked being dependent. He’s always been the caregiver, not the care receiver, and I imagine myself in his head, thinking, “I won’t be that helpless person.”

I was in my twenties when a beloved friend succombed to a particularly lethal form of lupus; I was with her when she died. The night before, she pulled all the treatment lines out of her body. She’d had enough in her twenty-five short years. When I was 25, I couldn’t bear the decision she made but I understand it better now — I was clinging to her in my own neediness, not letting her go where she needed to be.  As Stewart Alsop put it so poignantly, A dying person needs to die just as a sleepy person needs to sleep, and there comes a time when it is wrong to resist.

 

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  • Yaffa Weisman

    My heart goes out to you as I and my extended family had to deal with painful and heart wrenching decisions about continuing – or not – to provide support as well as medical care to an elderly family member as he goes in and out of full awareness. But it’s not just about the elderly, as was the case with the friend of your youth. The fine line between taking responsibility and taking over, be it advising, cajoling or begging our loved one to continue the fight, gets blurrier as their suffering increases. In short, I don’t know that there is one answer that fits all. All I can wish you and your husband is Refu’ah Shelemah – a complete healing of body and soul.

  • RachelK

    Are you using, or have you considered, hospice care? I kept my husband “in treatment” so he could continue going to physical therapy as long as he could, but when that became too difficult we discontinued treatment and began hospice care for the last 2-1/2 months of his life. In the last week or so, as he moved into coma, our nurse suggested an oxygen cannula to spare him physical distress (and, I realize just now, to spare me emotional distress). Because he was bedridden we did not need tanks but used a (very noisy) machine that concentrated oxygen out of the air, so the only “therapy” was keeping the nasal cannula in place.
    If it truly is time to cease resistance, hospice can provide measures for the patient’s comfort that are not intended to prolong life (although palliative care seems to prolong life better than radical treatment, at least with late-stage cancers). Their guidance can help protect his agency, and your sanity. The battle against helplessness is perhaps the last battle we fight as we die, but it is necessarily a losing battle. The skills and services of a good hospice team can help with that and other transitions along the way.
    I offer blessings and prayers as you negotiate the last stages of your journey together. There are no “right” choices, in my experience. You can only do your best in each moment, and trust your loved one to forgive any shortcomings.

  • Gail

    For any of us as we get older, admitting we need help is difficult. I empathize so much, Sara…our men are so used to being able to make decisions and to take action. My dear husband of 57 years died nearly 2 years ago. I had to begin to do more and more, and I was a fierce advocate when he was unable (or didn’t realize he was unable). Perhaps if there were a consult, and your dear one could hear a range of options (and there may be some that don’t include oxygen…or that present it as limited use), he might relent? Occasionally, it is necessary for the stronger spouse to push a bit. Sending you my best wishes for patience and persistence. Get enough rest, yourself!

  • Nel Breet

    I hope when the time comes, I can end my life in dignity and in a way I can chose to go! When I’m not able to do it myself I will go somewhere where people help me to!

  • The Bag Lady

    Sara, I send you love and empathy, but really feel unable to provide meaningful advice. This is yet another stage of life most of us will deal with eventually. I know you will make all the right decisions out of love and respect for Courtenay.

  • Angela S (Angela Joan on FB)

    Oh, Sara! What pain for you both. What brave and adamant faces you must both put on for one another – he as a resolute and stubborn patient seeking to not ‘make you’ live a life focused upon him, you as a loving spouse mindful of his brilliant and loving persona that seems to, as a light, grow dimmer and thus cause you grief in decisions of how to help. — I’ve been there, with parents and friends. I’m crying from finishing your post at this moment: a friend of mine who has had a torturous time with dialysis was just told her kidney donor is not a match (the medical folks had already set a transplant date!) and is now struggling to find a reason not to stop dialysis and go into hospice. — I know from experience (and I’m soooo not in your league, but this area experience is a guide) the best you can do is valiantly consider the factors with love and logic, respecting the other’s desires. That won’t be easy here … and then it may get either tougher or easier, as stages of things progress. I’m not sure it’s your cup of tea or Courtenay’s, but I’ll be praying for you nonetheless. And when you follow that path of making the best informed decision you can (ex: with love, logic, and medical options) – sleep in peace at night and filled with the love of Courtenay, knowing he could ask for no more. Hugs, Sara, and thank you for ALLLLLLLLLLL you do – for him, for the public, and no doubt for Chiara and many, many more. Much love and prayers for you both to be at peace, to share some more laughs, and to feel the good of your souls’ contributions/touch in one another’s lives.

  • Susan Oleksiw

    I’ve learned the hard way over the years that each person makes their own decision, and my role is to help, not hinder. My mother survived a crisis that her doctor thought was miraculous. When the second one approached, she made up her mind that she would go into the operating room and not come back. I’ve visited friends in Hospice, and in emergency rooms. If someone knows what he or she wants, it might scare me but I’ve learned to let go. That doesn’t mean it’s easy. it’s not. There’s nothing harder than doing doing everything you can to help another. Thank you for talking/writing about this. The time to think it through is before the crisis hits.

  • Dharma Kelleher

    As both a family caregiver and a professional caregiver for more than a decade (in addition to my work as a professional thriller author), I have served a wide range of clients and family members. Some to the very end of life.

    There are no easy answers when it comes to caring for someone near the end or what we or they may perceive to be the end. What matters more than anything else is love and compassion. A willingness to see through the eyes of those we are caring for.

    There were times when I would get pushy with my father-in-law who refused to take his meds. There were times I was reluctant to buy ice cream for my mother-in-law who was already morbidly obese. But I reminded myself that I was caring for adults, not children. And even in cases where their mental ability might be compromised by illness, I strove to find ways to respect their agency while trying to prevent suffering.

    As I said, there are no easy answers. Rarely any right or wrong answers. The best we can ever hope for is to start with love as our motivating factor.

    Sara, you have long been a hero of mine and I have been blessed to have spoken with you at a conference in Phoenix. I wish you and your husband all the love and peace in the world.

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