December 28, 2008

This is the problem when one tries to be a caretaker to a dying family member: it’s not possible.

A caretaker’s job is to make the dying person as comfortable as possible while he fades. A family member’s job is to try to accept that death is on its way and prepare to welcome it as much as possible. As a caretaker you are charged with his body; as a family member you are charged with his soul.

When you try to do both, then the idea of comfort is replaced perforce by the idea of survival. When your father is dying, as E.S.’s is downstairs, it is out of human ken to remember, as you hold the bucket when he starts vomiting bile, that you’re not trying to keep him alive. Every act, every moment becomes therefore about wringing one more second of life out of the disaster in front of you. And if that’s what you’re doing then it’s categorically impossible to prepare for death. You can either fight it or accept it. You can’t do both. This is one reason people put terminally ill family members in hospice.

Adding to the impossibility of playing both roles to somebody is the fact that it becomes ever more difficult to try to compass the life fading in front of you, because when he loses control of his bladder or his bowels and you have to clean up the mess you are filled with hot, savage resentment.

Also, you suck at being a caretaker. You weren’t trained for this; you’ve never done it before. Half the time all you succeed in doing is putting him in more pain than he already felt.

And having a health-care worker stop by once a day doesn’t count as hospice.

I have known these things for a long, long time, having grown up with a mother who was dying of juvenile diabetes before she even bore me. E.S. realized these things. I think, fairly soon after his parents moved in with us..

But his mother has not. I have brought to bear every blandishment of which I can conceive, but to no avail.

I understand the impulse; really, I do. I’m just worried that Mrs. S. is robbing herself of something that would otherwise be a great comfort to her, now and hereafter.

She’s going to need all the comfort she can get.

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14 Responses to This is the problem when one tries to be a caretaker to a dying

  1. derfina says:

    So sorry you all have to go through this.

  2. Canada says:

    You are so right, Joel. Our lives are not structured in a way that makes the messy realities of dying clear until caregivers are already in the thick of it, feeling scared and out of their depth.

    Your experience and understanding are going to be a great help to both E.S. and his mother but may also suffer occasional resentment. Denial takes many forms and grief enters early.

    You guys are awesome.

  3. Jess says:

    Unfortunately, I’ve been through this more than once. What you’re saying is absolutely correct, but there’s no way you can bring her to this realization. If you try, all you’re likely to do is engender resentment.

    Any such situation is sad and painful, and I’m sure she is missing the opportunity to build a base from which she can heal and move on. Even so, let things play out as they will. In hindsight, there are things I wish I had done differently as each loved one was slowly fading away, but rational thought has little place in such matters. We all go about these things in our own way, for better or for worse, and we all find our own way, with the passage of time, to make peace with what has happened.

  4. David says:

    Hoo boy. I do not envy you for a millisecond. Courage, mon frere.

  5. Leigh says:

    Bless all of you.

  6. sam spade says:

    Joel, you guys are in over your heads. Check http://www.hpcanys.org
    and
    link to topics.nytimes.com
    just for starters – you need more help, and help that’s more professional, for all your sakes. Just did this with my father this summer; quality hospice care (not what you’re getting, from your description – not all hospice workers or hospice organizations are the same) is crucial for all members of the family. ES is probably too stricken to be thinking clearly; the less-involved spouse (you) can do wonders just organizing information if s/he is so inclined. Not easy, but very doable, and the long-term benefits for you and ES are inestimable.
    Good luck.

  7. Gabriella says:

    I’ve been asked to be there for a couple of people. I suppose there’s a difference between been asked and your situation where it is just accepted that you be there. I considered it an honour and found dignity in their passing regardless of how messy things got at times. Compassion helps. Knowing how vulnerable we all are and how it is better to give than to receive, in this sort of instance especially although dying people can and go give much…. You also need breaks away from the scene. A few hours doing what you are passionate about and enjoy brings a whole new upswing in mood for everyone.

  8. birdfarm says:

    advice above is good. taking breaks and self-care are both extremely important. even just taking a few minutes to look out the window and breathe. and yes, get better help. you don’t need to do all this without professional support. and most important – it’s E.S.’s mother’s own process. let her do it, even if she does it imperfectly. just be there for her, listen, share your thoughts, but let her make her own messy way. messy equals human.

    the book ‘final gifts’ was a blessing for me. E.S.’s mother might find it so as well.

    love you. love you a lot. thinking of you. xoxox

  9. TED says:

    I would handle the situation by distancing myself emotionally and with endless baking, so it sounds like you’re already doing much better with it than I ever could.

    I’m sorry you’re having to go through all this.

  10. coastofcalifornia says:

    I have visited your site for a few years; reveled in your smart, urban, witty swishy-ness.

    Walking with a(n extended) loved one throughthe process of dying is simply beyond the beyonds. Birdfarms’ comment is right to the heart of this. If money is available, pay for some excellent professional help. Then, as much as possible, let it be Mrs. S’s process.

    You are loved.

    Breathe.

    May God-Buddah-Allah-The Universe-Oprah be with you all.

  11. Birdie says:

    Sweetheart, you’ve been given excellent advice above. So just accept my heartfelt sorrow at what all of you are going through. I have been witness to the slow end of life; each of us has our own way of dealing with it. My way is direct, but it certainly is not the way everyone can do it. Allow each of you to wend his own way through the brambles and quicksand of this journey. My thoughts are with you.

  12. Esther says:

    In-home hospice care can free you all from Mr. S’s physical needs so you can all be with him in a better way mentally. He might actually prefer a “stranger” to tend to his bodily functions, rather than burden Mrs. S or either of you with it. Very likely Mr. S is feeling guilty for the “trouble” and “mess” he is causing everyone. Mrs. S may feel it all she can do at this point to clean him up, etc etc, but it would be nicer if she can sit with him, listen to music together, read to him, talk about good trips they have taken, raising E. and so on. Very likely she feels totally helpless at easing his pain and loss, and her own, and taking care of him physically is all she thinks she can offer. Maybe she will see with home care that there is still an important role for her that no one (nurse or anyone else, even E) can fill, and that is her place alone.
    Have you all even sat down to talk about how you are each feeling? If everyone is trying to protect everyone else from grief that is likely quite palpable in your home, no one is able to comfort anyone else or receive any comfort themselves. And that likely makes Mr. S feel worse, seeing what you are all going through on his behalf. Talk about it and cry about it together. It will be better for everyone that way.

    My thoughts and sympathies are with you all.

  13. Houston says:

    Most opportunities for spiritual growth really suck. Accept my sympathies as a sort of cyber hug. I can offer you nothing except to say that you are a very old soul, Joel, a very old soul. You just look young and cute.

    Good luck.

  14. Esther says:

    You and all the S family are very much on our minds and in our hearts. We are wondering how you are doing at home these days when you are not knitting or googling Harper Lee.

    In a recent group email, your address was included. Would it be appropriate to send the S family a card at that address that they are in our thoughts and prayers? Or would it upset them that you are writing about their personal lives this way? Even without any details from us, Mr. and Mrs. S would know we had somehow heard about their situation. Don’t want to do the wrong thing and make anything more difficult. Maybe you could just convey to them your “fan’s/friends/(enemies)” concern and caring….

    Please tell us what we can do from afar… or just know that we are thinking about all of you and wishing all of you whatever good can come out of this experience, an hour at a time….

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