When caring feels like a betrayal

29May15

Sal BW 1310858 BLOG

The name is fictional, but the man is real. Here’s “Sal” in his new home.

“The fact is, I’ve simply lived too long.” My friend Sal’s eyes filled with tears as he surveyed his new apartment. “I’ve outlived so many friends … and …” He didn’t have to finish. I knew what he was thinking: “… and to end up in a place like this.”

The fact is, I helped put him there.

Sal didn’t want to end up in a nursing home. He’s fiercely independent — and just as fiercely private — so I’ve been trying for the past three years to help him stay in his home. I was happy to help, of course: It was easy to pick up some groceries before our weekly visits, or to pick up the occasional pile of mail.

Sal’s mobility gradually became more restricted, however, and soon he needed more help. He hired a housekeeper and my shopping became more substantial. “Sal shouldn’t be living at home anymore,” my husband Esteban would say when I’d mention our old friend.

Eventually, sometime last year, I began to agree. Sal could barely shuffle between the living room and the bedroom anymore, and his kitchen was a mess. Every surface — every table, every counter, even the floor — was covered with half-empty fish tins and stacks of paper.

I worried he might slip or trip on the mess but he rebuffed my offers to tidy up. He rebuffed lots of other offers, too: He didn’t want a nurse, or assisted living, or even extra housekeeping help. He just wanted to live at home, on his own, just as he always had.

Esteban was growing more insistent: “Sal shouldn’t be living at home. And by helping him, you’re enabling an unhealthy situation.” I knew Esteban was right, and I agreed. But I couldn’t bring myself to not help.

Then, one Saturday a couple of months ago, the bottom fell out. “I think I’m coming to the end of my life,” Sal said to me over the phone. I rushed to his home that afternoon to find him feeble and pale. He couldn’t walk or even feed himself; the end really did seem near.

Sal’s cousin, his housekeeper, Esteban, and I started caring for him around the clock, divvying the day into shifts. Poor Esteban got the worst of it: He drew the overnight shift, which meant sleeping on the old carpet and waking in the wee hours to help Sal pee.

Within one week we were all exhausted. Sal, however, was thriving on the attention. “Love has brought me back,” he said to me one day, beaming. But he was still too weak to meet his own most basic needs.

I talked to Sal about how we might arrange for longer-term, more professional care. “I don’t want a nurse in my house,” he snapped. He was even more resistant to the notion of a nursing home. If we moved him “to some facility” he said he’d “… simply stop eating.”

A day or two later I got the phone call: “I found blood in Sal’s diaper,” his cousin said, “so I’m taking him to the hospital.” I was deeply relieved that Sal was no longer my responsibility — so relieved, in fact, that I felt guilty.

Sal spent two days in the hospital and two more weeks in physical rehabilitation before his cousin moved him to a nursing home. Sal’s private apartment is smaller than his home, of course, but just as quiet and cozy. It’s full of light, and full of Sal’s furniture and paintings and books.

Yet, four weeks later, Sal is still angry with me. He still cries sometimes. He’s still confused about where he is and how he got there. He feels betrayed by those closest to him — including (maybe especially) me.

I find myself wondering if Esteban was right: By helping Sal stay at home, did I enable his decline? Should we have moved him to assisted living sooner, against his wishes? Or should we have respected his wishes and let him die at home?

The glossy brochures on “caring for an older adult” don’t answer these questions, of course. No one tells you that there’s no single right answer. And no one tells you that, sometimes, taking care of someone you love can feel like a betrayal.



43 Responses to “When caring feels like a betrayal”

  1. Reblogged this on By the Mighty Mumford and commented:
    THEY—WE OLDER ONES—DON’T ALWAYS GET IT, DO WE?

  2. What a hard position to be in, for everyone. I think the best gift we can give our kids is to move to a retirement home a bit earlier than you think you need to so it’s your decision.

    • 3 hmunro

      What a selfless thought, Gracia! It would be great indeed if more of us (elders and caretakers alike) were able to see the situation clearly enough to move a bit sooner that is actually necessary — it certainly would make the move and the transition easier. I’ll try to keep that in mind when my own time comes. 🙂 Thank you so much for your thoughtful comment!

  3. A beautifully tragic story, H.

    • 5 hmunro

      I am so honored you stopped by, Tyson, and even more honored by your kind comment. Thank you!

      • And I’m humbled by your humanity. It’s a relatable story to that part of me that I hope to have shine through if and when I ever find myself in a situation to help someone as you have.

        • 7 hmunro

          I don’t even know how to reply to such generous words, Tyson … except to say thank you, and that I have no doubt you would indeed SHINE if faced with a similar situation. Thank you.

  4. I feel for you. I am sorry you have all had to go through this, but you did such a great job caring for Sal.
    I hope he finds peace in his heart very soon and that his professional carers will treat him with dignity and good care.

    • 9 hmunro

      Aw, Lizzy … you’re so kind. Thank you! I really had a pretty easy time of it, compared to “Sal’s” cousin, who bore the brunt of the decisions and responsibility. But I do echo your heartfelt hopes that my old friend will settle in, and that he’ll be treated with the dignity and kindness he deserves.

  5. Such interesting questions you’re bringing up. I admire how you have been taking care of him (and Esteban too) within the “República Independiente de Sal”. Besos, te quiero aún más.

    • 11 hmunro

      ¡Qué placer encontrar tu lindo comentario, querida Rosa! ¿A dónde te has desaparecido? Te he extrañado mucho (y he extrañado a tus dibujos también.) Espero que todo esté bien.

      But it really is lovely to hear from you — especially your naming of the “República Independiente de Sal.” That’s WONDERFUL! I’m going to share that with him, and offer to print him some currency and stamps. 🙂

      Besos, y un enorme abrazo.

  6. So much of what you have written resonates with me. In my case, the older person was my mother. And I won’t go into details because I don’t want to make this sound as if it is a competition to see which of us did it tougher. I just want you to know that I understand the soul searching you’re doing. My mother passed away in September 09, and I still haven’t found an answer that I can accept and feel comfortable with.I don’t suppose I ever will.

    • 13 hmunro

      I’m so sorry to read about your mother, Xpat — it sounds like you had a very tough time of it indeed, much tougher than me, because I was only marginally involved in Sal’s care and decision-making. And isn’t it a shame that these are the last memories we often have of our loved ones, of wrestling with the logistics and decisions of end-of-life care? My hope is that — as it becomes more common for people to live into their 90s — we’ll have more options, and more societal resources, to help support caregivers.
      In any case, my heartfelt condolences on the loss of your mother.

  7. Wow! How sad and how feared by anyone getting on in years–me included. I understand his independence, desire to be in his home, and not wanting to bother people.

    You and Esteban are such awesome people. You went above and beyond. I admire you two.

    Life is often a mess with no hope of perfection. You did what you could.

    • 15 hmunro

      You’re far too kind, Tom — because I know you would have done just as much (or more) in the same circumstances. But as you say: Sal’s situation is one so many of us fear, precisely because it means giving up independence and control. I’ve learned many valuable lessons from his situation, though, so hopefully I’ll be better prepared when my own time comes.
      PS: I admire you, too.

  8. Home is where the heart is. If your friend can find some happiness where he is and start to love it, even just a little, then hopefully he can find peace, and maybe then you can too.
    Good luck. 🙂

    • 17 hmunro

      Thank you for your kind and thoughtful words, Sallyann. I echo your hopes.

  9. It doesn’t sound as if there was ever a simple, right or wrong decision that you could have made. No matter what you’d done, you’d never have felt that you had done ‘enough’. But you did the best you could. And that is more than enough, in our fallible human world.

    I had a thought about Sal and his new home – it came from a visit to an Emmaus house here in Brighton. I was reading a poster on the wall of the cafe, with a history of the Emmaus idea – http://www.emmaus.org.uk/history – and was struck by the regenerating power of giving people who felt powerless in their own lives a task of looking after somebody or something else. And I wondered if Sal is allowed to have a pet if he’s in a private apartment. I don’t know if he likes animals, but even a couple of goldfish would bring life and responsibility back into his realm. Or a few bird-feeders outside his window. Or even butterfly and bee attracting flowers outside if he’s not strong enough to care for another living creature inside his apartment.

    There’s a really interesting (quite lengthy) article about a doctor who introduced life and living sound (especially birdsong) into nursing homes and into the gardens of nursing homes http://bit.ly/1toie9V

    Do please excuse the suggestion if it’s something that is already happening where he is.

    All best wishes – and do feel at peace with what you did for Sal.
    Elaine

    • 19 hmunro

      You never cease to amaze me with your thoughtfulness and resourcefulness, Elaine. The article about Dr. Bill Thomas was utterly fascinating and inspiring! Who would think that such simple changes could have such an enormous impact on quality of life? I actually have some wonderful binaural recordings of birds in a boreal forest, so I think I’ll put that on a CD and put it in Sal’s CD player. As for a pet … well, that’s a topic I’ve been broaching for years, since his beloved cat Chérie died. He’s allowed to have pets (in fact, several of his neighbors have cats and dogs) but so far he’s been resistant to the idea, in spite of my promises to adopt the creature if anything happens to him. He’s a remarkably stubborn old fellow, but I think I can wear him down. 🙂
      Thanks again for your thoughtful (and thought-provoking) comment, Elaine.

      • Wouldn’t it be great if you could engineer him adopting a cat that needs a home. Maybe leave the window of his apartment casually open and distract his attention while Esteban waits outside in the garden and, on a secret signal from you, plops a pair of lost looking rescue moggies through the window and onto Sal’s carpet. You could act surprised and ‘find’ a tin of sardines in your bag to tempt them into staying. Bob’s your uncle!

        Does Sal feel that he’s ‘betraying’ Chérie if he takes on another cat? I suppose a needy cat or two might be an easier option – if they need a good home and a kind owner. Do they have cat rescue places in the US?

        By the way – i don’t know if you can pick up this BBC radio programme where you are – it’s called Inside the Ethics Committee. The episode I’m sending is about an elderly man who wants to go home from hospital after a fall. One reason I’m sending it is so that you can hear how many humans are involved in the decisions, over a long period of time. (I think the first doctor sounds a bit grumpy) http://www.bbc.co.uk/programmes/b00cxr1v#auto You can hear how hard it is for them to feel that they’re doing the right thing and the best thing. And they are many. You are just one person.
        All best wishes
        Elaine

        • 21 hmunro

          Ha haa! You are both sneaky and cheeky, Elaine! I love the idea of arranging for a kitty or two to just sort of “wander” into his apartment. (And yes, we *do* have some wonderful cat-rescue organizations here.) Alas, at least part of Sal’s reluctance is indeed a fear on his part that no cat will ever measure up to Chérie. But your note actually hatched an idea that perhaps we can bring a cat to visit him occasionally and temporarily, and that may break the ice.
          Thank you also for the *wonderful* link to that BBC programme. My goodness, Mr. Morris sounds like a bit of a handful, doesn’t he? 🙂 It was very interesting to hear the experts talk about how they evaluate and handle such a case, though, and to learn a bit about the laws (such as the Mental Capacity Act) that exist to facilitate such decision-making. You really have helped me feel better about how things turned out for “Sal.” Thank you SO MUCH, Elaine.

  10. You came from love and did your best, with the best intentions. That always has to be the ‘right’ thing. He feels your love, whether he is ready to show you that or not. I am sending love and light your way.x

    • 26 hmunro

      Thank you so much, Laura! You’ve made my day with your kindness. xx

  11. Sometimes in life we have to make difficult decisions, sometimes for ourselves, other times for those we care. Hope that this works out for the better and Sal will put away his anger at you for helping to put him in the home. Bon courage!

    • 28 hmunro

      Thank you so much, Angelina! And I’m pleased to report that your kind wishes are already coming true: During my visit Friday evening he seemed to be settling in more, and we had lots of good laughs. (See? Your wishes work magic!) Thank you as always for stopping by …

  12. Its so hard to try to help someone, then be blamed by them when we try to do what’s best for them. It’s very sad, but you and your husband have done everything possible.

    • 31 hmunro

      Thank you for your kind reassurance, Paula. I’m very happy to report that Sal seems to be gradually “forgiving” me, so I’m hopeful that in time our friendship will be repaired.

  13. I so understand both your reluctance and Sal’s desire to remain in his own home. Loving people always includes difficult emotions. Only those who don’t love and who don’t care are spared the wranglings of the heart. Aho to your brave, kind heart.

    • 33 hmunro

      You always know just what to say! Thank you, dear Pollyanna. (And AHO to your brave kind heart, too!) xo

  14. I’m sorry you ended up in this place. But do you regret getting on the path that led here?

    • 35 hmunro

      Now, here is a classic Jim Grey response: Economical in its wording, but deeply thought-provoking — and beautifully said. Thank you, Jim.
      PS: Nope, I don’t regret one minute of the years-long friendship that led here.

  15. 36 marianowrites

    Wow H, you are truly an amazing person. I was choking up reading this post. I think you did the right thing by dedicating so much of your time and energy to Sal, even if in the end things didn’t go the way he wanted them to. You tried your best and I’m proud of you and your husband.

    • 37 hmunro

      … and YOU are so unbelievably kind! Thank you so much for brightening my day.

  16. This article brought recollections of my grandmother. My parents chose to keep her in our house until the end, which was not easy for her. She missed her beautiful house in the countryside immensely, as much as “Sal” misses his, I am sure. Thank you for bringing this difficult subject to light, H. It is so complicated, as many of your readers have already attested, that many of us prefer not to think about, let alone prepare for it. And thank you for being such a caring person.

    • 39 hmunro

      Although I’m sad your grandmother wasn’t able to stay in her beautiful country home, how wonderful that your parents were able (and chose) to take care of her! One of the hardest things for me about Sal was turning his care over to a bunch of strangers. Professionals — but strangers. But thank you very much for your kind and thoughtful words, Alberto. Siempre es un enorme placer “platicar” contigo. ¡Muchos saludos!

  17. 40 Cindy

    Went through this with my dad. We kept putting off the inevitable..then he fell, broke his hip and everything went from bad to disaster. His last few months were full of hospitalizations, mental confusion and finally hospice. The right thing and the hardest thing are often the same thing.
    You did the right thing.

    • 41 hmunro

      What a heartbreaking story, Cindy. My heartfelt condolences for the loss of your dad — and for everything you went through in his final months.

  18. You did the right thing at the right time.

    • 43 hmunro

      Thanks for your thoughtful reassurance and kind words. I really do appreciate it.


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