A Terminal Illness Primer for Caregivers: When Hope Meets Reality

How do you know when it’s time to stop the chemo?  What happens when the relationship you had with your loved one does a complete 180 and suddenly you are the decision-maker?  For patients and caregivers, it’s a balancing act between hope and reality; bystander and activist.  In When Hope Meets Reality: Making Tough Decisions and Recognizing Shifting Dynamics, I write about that bleak point when treatment options dry up and difficult decisions must be made by the caregiver with or on behalf of their loved one.

19 thoughts on “A Terminal Illness Primer for Caregivers: When Hope Meets Reality

  1. Cadry's Kitchen

    Death and dying is so hidden in our culture, to our own detriment. It’s something all of us will face many times over in those we love and finally in ourselves. And yet, we’re rarely given the time and tools to discuss it, grapple with it, and come to terms with it. Thank you for sharing this part of your story.

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    1. An Unrefined Vegan

      It’s why we fear death so much. It’s as if we go around pretending it doesn’t happen and when it touches us, we want to push it away and forget about it. It was such a profound experience for me, that I felt compelled to write about it – probably more for myself than anyone else.

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  2. narf77

    The point at which you realise that you are going to have to learn to let go is brutal. It’s also incredibly liberating for both you and the person who is dying. You can stop running around trying everything and you can focus on spending the most quality time with them. I guess there has to be a positive to everything no matter how challenging it gets and learning to let someone you love die with grace is one of the hardest life lessons that we are ever going to have to learn.

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  3. conniefletch

    Thank you for sharing your story…which I can’t even read. It’s just too damn hard. I went down this road with my husband. The journey ended this past January20th. I was a nurse for 34 years, so I had the training to do the work….just didn’t realize how much it took it’s toll on me emotionally until about 3 weeks ago. As much as it is so difficult to do this….it’s also a blessing, not only for the person who is sick, but for the caregiver as well. I’m so very grateful that I was able to care for mu hubby at home. He dies while we were holding hands…… I am forever grateful for the lessons he taught me during this season of our lives. The coolest thing is that I know that I will see him again!!!!

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    1. An Unrefined Vegan

      Connie, I’m so sorry about your husband. I’m sure it still feels as if it just happened. I completely agree that it is a real gift that our loved ones give to us – even though it’s hard and sad and we want to fight every awful moment. What a blessing to be able to follow them for as long as we can before they leave us. I think one gets through on adrenaline and fierce love and then when it’s all over, we kind of shatter. Maybe not that noticeably to those around us. Some days it’s as fresh for me as the day Charles died and without any seeming provocation, I’m in tears. I hope, honestly, that I never lose that. Again, it hurts, but in a way, it keeps him very close to me. Thank you, Connie – warm hugs to you.

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  4. Choc Chip Uru

    Thank you for this my friend. We try to avoid talking about Death and pretend it is not the route for us all but when you let go and spend time without the emotional background gives the best time with that special person. Your journey is liberating for us all. As brutal as it is.

    Hugs
    Uru

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  5. VegCharlotte

    OMG what an amazing article. I haven’t quite trodden this road, but I was a caretaker for years for my mother with Alzheimers which I think brings up some of the same emotions. this is wonderful. thank you.

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    1. An Unrefined Vegan

      You’ve experienced all kinds of emotions and challenges. That’s a whole different level of care – and of course, there is that frightening sense of seeing a loved one kind of disappear before your eyes, even while they’re still there. I appreciate you taking the time to comment. Best to you –

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  6. Claire (Eat Well. Party Hard.)

    This article was at once relatable, heartbreaking and moving. Though I am thankful to have not yet been required to assume the role of caregiver for a loved one with a terminal illness, cancer has become quite a common illness within my large family. I’ve lost an aunt and two grandparents to it–one who lived in Oklahoma, actually–and my mother just underwent a double mastectomy this spring to remove an aggressive strand of breast cancer–during which time I was indeed a primary caretaker, but was not faced with the added challenge of embracing her death. I agree so strongly with your views on food and its relationship to wellness vs. illness, and like you, *one* of the primary reasons I am vegan is because of the links between animal-based diets and cancer.

    Thank you for sharing your story. As much as we try to pretend or hope that we’ll never have to deal with death, the truth is that it’s simply a part of…well, life. This was such a strong reminder of that, and a reassurance that there is beauty in even those final moments.

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    1. An Unrefined Vegan

      Claire, thank you for taking the time to write and share your experiences. I wish the best for your mother. Cancer seems all too prevalent these days and I think we probably both agree that that has something to do with what we are subjecting our bodies to – via the food, the air, the water. I would love to see our clinics and hospitals adopting another form of treatment that can be followed alongside “traditional” treatments: whole, plant-based foods.

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      1. clairesuellentrop

        Amen to that, and many thanks for the well wishes. Sending the same to you and your loved ones, as well!

  7. Michelle

    My family and I just went through this with my father. My mom, sister and I had to make the decision not to give my dad a feeding tube along with various other medical treatments. His Living Will was very specific about what he wanted and didn’t want. Plus he had many long conversations with my mom about it in the last 4 months. He was diagnosed with a malignant brain tumor at 80 on May 5. Until the week prior to his passing we all thought that he was going to recover and go back to living life with my mom. He passed away on September 15 the day after his birthday with my mom, sister, my husband, my two daughters and myself by his side. I had read your other post on being a caregiver and it really helped me deal with what we were going through! I appreciate your candor and your post. It was a tremendous help! We were blessed to have those 4 months with him before he died and I know we will cherish those moments with him!

    Reply
    1. An Unrefined Vegan

      Michelle, I am so sorry for the loss of your father. It’s astounding how quickly brain tumors move. I’m so glad that your father had the care and support that he needed from you, and that when he passed, he had his loved ones by his side. In the end, the greatest thing we can do for them is to let them know that we love them and that we are there for as long as they need us. Warm hugs to you and your family. I know exactly what you’re going through.

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  8. tearoomdelights

    Another wonderful chapter in your primer, you express it all so well. Your honesty is touching and although it’s almost inevitable that afterwards you’ll question how you handled things, you know that you did what you did because you thought it was the best thing to do at the time. I think it’s obvious from the way Charles let you into his life that he appreciated your care very much. Maybe he wouldn’t have wanted you to do things any differently, but in any case I think he knew that you were trying your best. He was blessed to have you there with him at the end, and by writing this primer you’re passing that blessing on to others. I know I’ve said it before but I think writing this down the way you’re doing is really marvellous.

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    1. An Unrefined Vegan

      Thanks, Lorna – it helps to hear that. I wanted so much to fix everything and to keep him strong. Well at any rate, I’ve learned so much and will be better prepared (gosh, that sounds awful) – – part of why I’m writing this. Maybe someone will benefit from my experiences.

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  9. Richa

    Another very relatable post my friend. The thing with my personality is even though I am a control freak and want to know everything, I do better when I dont know all. just a simple overview is where it should stop. Any more information always makes me into a stress wreck. It depends on the person though, so I wouldnt know how much information to share if I was the care giver.

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