Long-distance dying really STINKS

  1. As someone far wiser than I has already said, life may not be the party we expected, but while we are here we might as well dance.

    Sadly, the dance is ending all too quickly for my brother-in-law, who was recently diagnosed with esophageal CA and who now appears to be heading inexorably toward death. He and my sister have been married and divorced twice, and only got back together a couple of years ago after a 13-year separation; their five kids are basically worthless and have run from his dying like cockroaches from the light. In the meantime, my sixty-year-old sister, who isn't in the best of health herself, is living out in the middle of the wilderness surrounding Puget Sound in a crumbling trailer with no running water, a leaky roof, rickety stairs, and now no husband...........he's back in the hospital again after a two-week stint in a nursing facility, fighting another bout with an aspiration pneumonia that's doing its best to kill him.

    Now he is on 15 liters of O2 via NRB, dozing in a morphine-induced haze while she maintains a vigil by his bedside. He does not want hospice; he wants to keep fighting, he says, even as his O2 sats occasional dip into the 60s and the need for suctioning becomes apparent to the nurse. They actually had to code him yesterday morning early; my sister was called out of an exhausted sleep around 0430 and advised to get to the hospital ASAP because it looked like he wouldn't make it. But after working on him for over an hour, they finally suctioned out a huge amount of 'gunk' which brought his sats back up to the 90s and some badly needed oxygen back to his starved systems. It won't be the last time this happens. I can't tell my sister that............well, I can, but it doesn't register, even as she tells me she knows he can't go through much more of this.

    She wants me to come up there, 350 miles one-way, because no one else around gives a hoot how she's feeling......all the "kids" think about is how this is affecting them. I've already been up there once, for a week.......I CAN'T go again right now. I have a ton of stuff on my plate at work, and I've got health problems of my own that I have to have taken care of sooner rather than later (my parathyroid glands are on the fritz and I need surgery pronto). My third grandchild will be making his entrance into the world this week as well. No, I can't go now.......there's too much to do here, and I'll have to be there for the funeral anyway.

    And still it kills my soul that my sister---my only living older relative and the woman who basically raised me---is having to go through all this basically alone. I was hoping to get them back down here where I could help care for him and find the services they need, but my BIL's illness is moving too swiftly........I'm afraid it's too late in the day to move him now. But then, I think the time to do so had passed before we even knew he was sick. Esophageal cancer doesn't play fair, and it certainly doesn't care about the devastation it leaves in its wake.

    Anyway, this is all creating in me a dizzying array of emotions. I hate it that my BIL, a big gruff bear of a man whom I've known for over 40 years and who has provided me with a million and one laughs, is dying so pitifully. I wish there was something I could do for him, and I wish my sister didn't have to go through this, and I wish their kids would grow up and act like decent human beings. In addition, I can only too easily imagine myself in my sister's place: my husband is fifty-six himself, and my worst fear---other than losing one of my own children or grandchildren---is being without him.

    I know there are lessons to be learned from all this. But I hate it nonetheless.
    And the thing I hate the most is not being able to FIX it.

    Thanks for putting up with my venting. This isn't about me, but it does affect me deeply, and I appreciate the chance to just talk about it.

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  2. 30 Comments

  3. by   Spidey's mom
    I'm very sorry Marla . . . . :icon_hug:


    steph
  4. by   UM Review RN
    ((((Marla)))))
  5. by   traumaRUs
    Marla - I am so very sorry for this very sad situation. Is there anyway to just fly there on Friday and come back on Monday? I am sorry that this disease isn't giving you all the time you so desperately need.

    Prayers and hugs.
  6. by   Jolie
    I'm so sorry for your entire family. Is there any way you can spend just one day with your sister and brother-in-law? You will never regret having done so. I know the funeral seems important (and don't misunderstand me, it is), but I've always thought it better to spend the person's last days with them than to attend the funeral.

    This happened with 3 of my grandparents. One I didn't get to see in her last days, but attended her funeral. The other three I spent time with, but then couldn't return for their funerals. I felt much better about having spent time with them. The funerals didn't seem quite so important, although I'm sure you want to be there for your sister.

    God bless you all.
  7. by   compassion1
    (((((((Marla))))))) It's so frustrating, when you're so geared to fixing everyone else's problems, that you can't fix them in your own family. Makes you feel anger and guilt as well as sorrow and grief. But the reality is that you can't do any more than you've done. You're best, now, is to offer prayers for your sister, your bil and their kids. And moral/verbal support. That can be done at a distance as you've got your plate full with the things that need your attention. Can someone hold a phone to you bil's ear so you can say whatever you feel you need to say and that he may need to hear? Is there a pastor/church family they can turn to for local support? And thank God for that morphine haze if it keeps him comfortable. God bless you and yours as you all go through this sad time. PM me anytime.
    Last edit by compassion1 on Mar 11, '07
  8. by   muffie
    oh marla
    i feel for you and your family

    what an awful time
    what a dilemma
    life sure stinks sometimes

    i wish peace for your brotherinlaw and hope your sister hangs in there, tough as it is

    you will be in my thoughts in the days and weeks ahead
    Last edit by muffie on Mar 11, '07 : Reason: typo
  9. by   canoehead
    horrible, horrible

    He is still a full code? Does your sister have contact with someone on staff at the hospital she can talk to?

    You must be so torn.
  10. by   Tweety
    ((((Marla)))))
  11. by   DutchgirlRN
    ((((((Marla)))))) Don't let anyone make you feel guilty for thinking about yourself. You've got a life and priorities too, you've got a grandbaby coming at literally any moment. Their situation, sad as it may be, is not your fault. I feel for you hon.
  12. by   llg
    {{{Marla}}}

    My parents both died with me being far away -- though there were supportive family members, etc. around. So, I can relate a little to your situation.

    I agree with what a few others have suggested. Is there any way you can go for a very brief time? That may not seem very cost-effective, but the money is not really the issue at this point. Can you just go for 2 or 3 days? Such a short visit would show the support your sister needs and would ease your conscience for the rest of your life.

    If a quick trip is truly impossible, can you stay in "extra close touch" through the telephone or internet? Communicating with her 2 or 3 times throughout the day would also show her a great deal of support.

    A couple of long, heart-felt letters sent via overnight mail is another option. People don't write letters much anymore, so getting a good one can be quite touching. You are accustomed to writing about your thoughts (as you do here) and could craft some good letters on a regular basis that she could read and re-read as she waits for the inevitable.

    Take care,
    llg
  13. by   NRSKarenRN
    :icon_hug: from across the US.

    Marla, so feel for you at this time. Sometimes we can't be all things to all persons. If your sister is as articulate as you are, then IIg's suggestion of a heartfelt letter, something she can hold onto and re-read, is the next best thing to your physical presence.

    Your newest grandchild will be there for you to cuddle and hold long after your BIL passage can be explained to family. However, my sense is that work + imminent birth demands is keeping you close to home; knowing that the funeral and sisters living situation will demand time away from work.

    Part of the art of nursing is learning to accept the choices that individuals make and advocating for them once clear decision regarding resuscitation/advance directives made. You can not change what is happening at the hospital except to be that vocal support to Sis.

    Since you've already visited recently, knowing your BIL wants everything done, in your phone calls to your sister don't be afraid to gently explain dying process "so she can anticipate and be prepared for decision making". A call to social work department at hospital regarding concerns for sister might be of help too. You do not have to share all this alone.

    Don't forget the FMLA!

    The light is always on here along with our caring shoulders. Take care.
  14. by   nursemary9
    Quote from llg
    {{{Marla}}}


    If a quick trip is truly impossible, can you stay in "extra close touch" through the telephone or internet? Communicating with her 2 or 3 times throughout the day would also show her a great deal of support.

    A couple of long, heart-felt letters sent via overnight mail is another option. People don't write letters much anymore, so getting a good one can be quite touching. You are accustomed to writing about your thoughts (as you do here) and could craft some good letters on a regular basis that she could read and re-read as she waits for the inevitable.

    Take care,
    llg



    Dear marla,

    I feel your pain in your post; You write so beautifully that maybe llg 's suggestion is just the thing;
    You know that my thoughts and prayers are with you and your family!
    I wish there was more I could do for you;
    (((((((((((((((((((((((((MARLA)))))))))))))))))))) ))))):icon_hug: :icon_hug:

    Anytime you need to "talk" or vent, feel free to PM me.

    mary Ann

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