Making End of Life Decisions

Some of the hardest decisions to make when taking care of a person who is nearing the end of life are not dire life/death decisions, such as taking him off a respirator, but simple decisions that continue to haunt you long after the person is gone.

The hardest decision I had to make when it came to the end days of my life mate/soul mate was whether to take him to the hospice care center. The nurse suggested the move to give me time to rest (he had what is called “terminal restlessness” and kept getting out of bed; considering how unsteady he was on his feet, I had to get up with him.) He wasn’t ready to go, wasn’t ready to face the ending of his life, and yet knowing the truth of the matter — that he wouldn’t be coming home again — he still agreed to go. I, on the other hand, believed the nurse when she said he would be away just a few days to give me time to rest, but still, I felt horrible about agreeing to take him. Afterward, that decision haunted me. I wished I’d let him stay home one more day, especially since I didn’t sleep anyway.

The decision I face now in taking care of my father is even less dire, but infinitely more complicated. Until about a week ago, my father still answered the phone, eager to talk to anyone who called, but now we’ve unplugged the phone in his room because he doesn’t like to be awakened.

He spends most of his time sleeping, getting up a few times a day to eat something — an egg or a bit of jello or a few canned peach slices. He is willing to talk to his children during those times, so that’s not a problem, but he doesn’t want to see anyone. He is very fragile, and so I have been honoring his wishes. However, some of my siblings want to make sure they see him one last time, and this is where the decision lies.

When is the cut-off point where his wishes become secondary and the wishes of his children come first? When it’s close to the end, I suppose, and I don’t think he’s there quite yet. Although he doesn’t eat much and has developed an aversion to most of his favorite foods, he does still have an interest in eating, which is a good sign. He’s also alert when he’s awake, so he hasn’t quite begun removing himself from life. (He has no interest in reading the newspaper anymore, but I don’t consider the newspaper “life”.)

I hope I’m doing the right thing by continuing to honor my father’s wishes, and that the decision to do so won’t come back to haunt me. I hope, if I make the wrong decision (or make a wrong assessment about how much time my father has left), my siblings will forgive me.

***

Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+

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7 Responses to “Making End of Life Decisions”

  1. rami ungar the writer Says:

    I know it must be difficult for you right now. I know it was difficult when my grandmother died, especially since she had very specific instructions about her death and what to be done afterwards. For instance, my grandmother wanted to die on a Saturday, as in Judaism you’re supposed to have an easier time in the afterlife if you die on Shabbas. However, my grandmother died not on a Saturday but a Tuesday. Apparently she was real upset about that.

  2. Juliet Waldron Says:

    Oh, Pat! I can’t believe you are here again…I send hugs and all the good vibes I can as you face these difficult decisions.

    • Pat Bertram Says:

      There’s a chance he could rally and have many more months, but for now we’re just taking it a day at a time. When I am through with this “crone” stage of my life, midwifing people into the next life, then I hope to enter a life-ful stage.

  3. Malene Says:

    Pat, I’m so sorry that you are there again. These experiences are never easy, I know! Striking the right balance between meeting your own needs, the needs of the one loved one whose departure may be more or less imminent and the needs of the rest of those who are involved is at best difficult and complicated – nearly impossible, really. If I lived in your “‘hood” I would bake you some banana bread and bring it over :-)

    if I may, this is my outsiders perspective on your particular dilemma: At 68, my mother died about 2.5 years ago after a protracted battle with breast cancer. Our relationship was, in a word, complicated. She didn’t want me to know when then end was really close and so the last time I had any communications with her was roughly 8 weeks before she died. Those who took care of her and surrounded her at the end completely respected her wishes and did not in any way keep me abreast of her health situation.

    I don’t know your siblings, of course, but I do know that while I would have liked to know what was happening with my mother, I could never blame my relatives for their decisions to accommodate her wishes. The only thing that I mihgt have liked to be different is for them to have, clandestinely, communicated her wishes to me before her death rather than after but really in the overall scheme of things, that’s such a minor concern for me.

    I note that your dad will still talk to your siblings when he’s awake and you say that he;s still mentally alert. Would it be at all possible for your siblings and him to negotiate their final interactions amongst themselves so that you don’t have to be in the unenviable position of being the go-between? If I am overstepping any lines here, know that it’s unintentional, this was simply the thoughts that popped into my head when I read today’s blog-post from you.

    Have a heartfelt virtual hug!

    M.

  4. Ree` Says:

    Pat,
    So sorry to hear of the position you’ve been put in. My 2 cents worth? I’d honor my Father’s wishes, tell them (your siblings) as gently as you can, and just pray they understand. (Been there done this too and took a real ‘beating’ for it for a long time. Would still do the same however – and this was really a slightly different situation at that.)
    I finally just had to let the “shoulda, woulda, coulda” go and it all worked out over time. Whatever you do? Don’t beat yourself up over what is obviously your Dads decision. . .
    Thoughts and Prayer’s to you,
    Ree`

    • Pat Bertram Says:

      So good to hear from you, Ree. I’ll take your advice and just let the shoulda-woulda-couldas go. I didn’t go through all this work to get through my grief just to add more guilts and regrets to my baggage.


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