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3katz4me

End of life distress

3katz4me
6 years ago

Have you ever had to make end of life decisions for someone who can't speak for themselves? I read that this can be as stressful as watching your house burn down and some people even have PTSD after the ordeal.

My brother is dying of cirrhosis. I'm his only living family member so I am faced with this. We haven't been close since we were kids in part because he's six years older, lived in another state all of our adult life, and his decline from alcoholism was just more than I could face over the last couple years.

He moved back closer to home a year ago and was living with a dear lifelong friend who has taken care of him until his most recent hospitalization which will be his last. He was no longer responsive and in very bad shape so I decided they should remove the respirator and stop all other treatments and just provide comfort care.

I don't want to do anything that will prolong his agony and suffering which I'm pretty sure is the right decision but it's very hard. Tonight he opened his eyes and made some unintelligible sounds when I went to see him and it just about killed me. I have a hard time convincing myself we're letting him go to a better place sooner than later vs some more negative thought that I'm somehow expediting his death and shouldn't be.

And then the social worker calls me about discharge planning! Are you serious? They want to get him out of the hospital and move him for his final few days or hours. That just seems like unnecessary disruption and distress and for what? It's not like he's in ICU - he's just in a room waiting to die. I don't believe they will move him until I decide where so I'm stalling on that decision.

And all that on top of the sadness about his difficult life. His friend said it perfectly - what a waste, he was so talented and had such a good heart.

Thanks for reading. If you have gone through anything like this and have any advice I'm all ears.

Comments (62)

  • Rory (Zone 6b)
    6 years ago

    Yes, addiction is a tragedy and I am very sorry you are going though this. My grandfather died from complications of alcoholism. Hospice is the best place for everyone at this point. It will bring comfort to all involved.


    My best to you.

    3katz4me thanked Rory (Zone 6b)
  • tinam61
    6 years ago

    I'm so sorry you are going through this and it is never easy. Even when you know what is the right/best decision - it is hard. We used hospice for my mom and my grandmother. My mom was kept at home (actually next door at my grandmother's) as we at first had them together and my sister and I had caregivers helping us) and when the time came, we called in Hospice. They were wonderful and it was as positive an experience as could be. Family and friends were able to visit mom. She was kept comfortable. We could be with her. My grandmother lived 5 1/2 years after my mom and she was moved to an assisted living facility a couple of months before my mom passed. (Alzheimers) When the time came, we were able to have Hospice there at the facility, so she did not have to be moved, etc. My grandmother had Hospice for a very short time but again, they were so good to her - and to us.

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  • deegw
    6 years ago
    last modified: 6 years ago

    Addiction is terrible and it makes the end harder because everyone wonders "What if?". We just went through this with my BIL. Cancer ultimately killed him but alcohol definitely hastened the process.

    My husband and his family wanted to cling to every bit of hope and possible improvement. But all I could see was the poor man's truly intense suffering. And at the end of his life he went through painful surgeries that extended his life, in a hospital bed, for a couple of weeks. I think it's more compassionate to let suffering, terminally ill people die in peace rather than poking and cutting and prodding in order extend their time in bed.

    3katz4me thanked deegw
  • Michael
    6 years ago

    Recommended reading.

    Being Mortal, by Atul Gawande.

    3katz4me thanked Michael
  • User
    6 years ago

    I am so sorry. :(

    I am an only child, and had to do this for both parents. It was brutal.

    Hospice helped in both situations. Note I say helped. There are still a lot of decisions to be made.

    I'm not one to second guess myself. I did the best I could at the time, with the facts available. I had a sense what my parents wanted and although that helped, it still doesn't really take away much of the anguish. At least it didn't for me. You still have to stand there and make decisions - say yes or no to treatments, etc. - knowing you hold their life in your hands.

    Now that it is over, I look back and know I did the best I could. But I also remember how gut-wrenching it was at the time.

    Good luck. Nothing about this is easy, but bless you for standing up and for helping as best as you know how.

    3katz4me thanked User
  • Bunny
    6 years ago

    3katz, I'm so sorry you are going through this. Know that you are making the best decisions on behalf of your brother.

    When my husband was near the end of his battle with cancer, he received hospice care in our home. I know that's not always a possibility for people, but I am eternally grateful that he died at home, with his sister and me at his side.

    When I asked his doctor about giving him morphine, and my concern about giving him too much, she gave me a look that said, well, so?

    3katz4me thanked Bunny
  • Rita / Bring Back Sophie 4 Real
    6 years ago

    You know you are making the right decisions. There is no other rational or moral decision to make. The problem is wishful thinking. You wish you could make a different decision and there would be a different outcome.

    I suggest you try meditating a bit (5 minutes) every am and pm. You need to quiet your irrational mind that is screaming to save your brother and be comfortable in your decision. The practice of meditation helps connect the rational and the emotional somehow. Meditation centers me and gives me energy and I am a wuss meditator- I sit for less then 20 minutes per day and still feel huge benefits.

    There are many meditation apps, etc. Consider this starting point from UCLA http://marc.ucla.edu/mindful-meditations.

    I promise the few minutes you will spend sitting in meditation will buy you hours of calmness and focus throughout your very difficult days ahead.

    I wish you peace and comfort in these trying times. You are performing an immense act of service and love for your brother.

    3katz4me thanked Rita / Bring Back Sophie 4 Real
  • rubyclaire
    6 years ago

    My heart goes out to you. What you are doing for your brother is such an act of love and service. While my mom had a living will which stipulated most of her wishes, I still had to make many decisions on her behalf and sign a DNR for her. It was terribly difficult even though I knew it was the right thing for her. Hospice provided such care and support for both my mom and for us. I am forever grateful. Take good care of yourself.


    3katz4me thanked rubyclaire
  • texanjana
    6 years ago
    last modified: 6 years ago

    I am so sorry you are facing this difficult time. I didn't read any of the repsonses, so this may have been repeated-you need to call hospice and get them involved. They might even have a facility where he could go to die peacefully. My dad died last month-he had been under hospice care for over a year, and I can't begin to tell you what wonderful and caring people they were. The chaplain is still meeting with my mom to help her through her grief.

    It is very hard to see someone decline like this at the end of life, and it must be even more difficult knowing that the terrible disease of alcoholism is killing him. Sending prayers for peace and comfort for all of you.

    3katz4me thanked texanjana
  • User
    6 years ago

    It is difficult but you are doing something to help as best you can. Hospitals want dying patients out so they don't have a high mortality rating. Hospice can be a good thing and maybe give you some peace of mind IF there is a place he can be moved to. Otherwise, I'd stall too.

    3katz4me thanked User
  • l pinkmountain
    6 years ago

    A lot of people I know who faced something similar report hassling with the hospitals. Some have good facilities for "in hospital" hospice and some do not, and some are sketchy, like some people get it and some don't. My SO went through the same thing with his father. He had to get him transferred to a nursing home which he was luckily able to do. My cousin tried to get her dad home with hospice but luckily they had in-hospital hospice since it was just too much to move him. I would seek out some kind of support where you are. But any way you slice it, it is going to be difficult. I had the same issue with my mom. She had a traumatic brain injury and there was nothing that could be done for her. It was an awful feeling seeing her lying there, it still haunts me, the frustration of not being able to do anything and yet still wracking your brain trying to figure out something to do. But all you can do is all you can do. Hugs. I am so sorry you have to go through this!

  • Gooster
    6 years ago

    I'm glad you taken the step towards hospice. It is a better overall situation. We went through the same emotions. Hospice professionals are angels that help everyone through a very difficult time. With my father last year, the social worker at the hospital was so kind and showed so much genuine emotion and caring. The nurses and the attendants were great as well.

    3katz4me thanked Gooster
  • cran
    6 years ago

    Such a sad day when one has to make those decision, especially alone. My heart goes out to you. I am so glad to hear you are able to get help from hospice.

    3katz4me thanked cran
  • 3katz4me
    Original Author
    6 years ago

    Well, I picked a hospice facility closer to where I live (he's currently about an hour away) but unlikely they will be able to accommodate him before Monday which might well be too late. Sigh....just when I was feeling good about that idea. I'm not dwelling on it though. I am a person of faith and trust that whatever is happening is what God has in his plan for us though I try to make sure I'm paying attention to his messages and doing my part.

    My cat just stood up behind me on my chair and put his "arms" around my neck. I wonder if that's just a coincidence....

  • sushipup1
    6 years ago

    Call other hospices, they may have different options for you. And a hug from your cat is just what you needed!

    3katz4me thanked sushipup1
  • voila
    6 years ago

    I wish I could give you a big hug, too. My mom is in assisted living and waiting to die. I am traveling from afar to visit her in three days, to give her a big hug. As I have lost my father, husband, son and granddaughter, I can tell you that life is hard. You are doing the best possible job you can do. I hope you know that, honestly. Hospice would be good for all of you, but if he does not make it to hospice you know you gave your very best. My thoughts and prayers are with you. I am so very sorry you are going through the heartbreak. When it is done, tell yourself you did everything you could to help your brother have everlasting peace.

    3katz4me thanked voila
  • blfenton
    6 years ago

    3katz4me - I wish you peace and comfort during the next few days and know that you will make decisions that are the best for your brother.

    (((viola and 3katz4me)))

    This is a tough stage of life for many of us right now.


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  • texanjana
    6 years ago

    Voila-sending you a big hug, too. I am so sorry that you have had so much heartache in your life.

    3katz4me thanked texanjana
  • OutsidePlaying
    6 years ago
    last modified: 6 years ago

    I am so sorry for this burden you are carrying. You have made the best decisions you could make with going for hospice care. We can't second guess what might happen. You have already received wonderful advice, so be at peace with these hard choices you have had to make and know that you did the best you could.

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  • graywings123
    6 years ago

    I have nothing to add to the very good advice given above. Just wanted to say that I wish you peace with making the hard decisions you must make now and in the near future.

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  • cattyles
    6 years ago

    I'm so sorry. I hope that by now Hospice is involved and helping you during this horrible time. Sending you hugs and peace.

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  • Gooster
    6 years ago

    Virtual hugs from me as well {3katz4me}. Without a doubt, your kitty feels your distress.

    3katz4me thanked Gooster
  • czarinalex
    6 years ago

    I too am very sorry, particularly since you are dealing with this alone. I had a similar situation with my Mom. I was blessed to have my siblings along side me to help. It makes a big difference. It's very draining, remember to take care of yourself as well.

    Hugs.

    3katz4me thanked czarinalex
  • User
    6 years ago

    3Katz, I am so sorry about your brother and the fact that this is where you find yourself right now. I'm another who wishes I could give you a hug and a quiet ear. Please don't doubt the choices you're making, you make them with love and care for your brother; you can trust that he knows this. Your kitty must sense the pain you feel right now; I bet that was a hug you sorely needed and he knew it. Please keep us updated on how you're doing. You're in my thoughts (((hugs)))

    3katz4me thanked User
  • User
    6 years ago
    last modified: 6 years ago

    I am so sorry. Very tough decisions to make. Saying a prayer for you.

    3katz4me thanked User
  • 3katz4me
    Original Author
    6 years ago

    Thanks all for your kind thoughts. Very much appreciated.

  • PRO
    MDLN
    6 years ago

    Hospice agencies are usually more helpful and supportive in these situations than hospital staff. Don't be afraid to reach out to more than one.

    Please consider talking with a therapist to help you through this difficult experience. If you don't have one, your primary care doc should be able to give you a referral just by calling their office.

    3katz4me thanked MDLN
  • localeater
    6 years ago

    4katz, I am sorry you are going through this. I went through this with a family member last summer. Hospice helped a great deal. This person let me down a great deal when they were alive but I feel truly blessed that I was privileged to make his end of life experience peaceful for him and beautiful for other member of the family. Be strong. And, yes your kitty's hug is a sign from the universe that your pain and strength are recognized.

    3katz4me thanked localeater
  • gardener123
    6 years ago

    So sorry you and your brother are going through this. He is lucky to have such a kind and caring sister to ease the transition. Wishing for you strength and peace.

    3katz4me thanked gardener123
  • 3katz4me
    Original Author
    6 years ago

    Well I wouldn't go too far in thinking me so kind and caring as I really haven't been so much in the last couple years. I have felt pretty guilty about that so I'm glad to be able to help in these final days.

    He made it to the residential hospice in plenty of time as he's still on a slow agonizing journey to the end. I just don't see how someone can hang on like this but I'm so glad he's able to be in the place he's at. I have spent some time there after work in the evenings but it's a gut wrenching and heart breaking situation. The people at the hospice are very kind but so difficult none the less. I can only hope he is reasonably comfortable.

    He had made arrangements to donate his body to a medical school but unfortunately he won't be accepted because of his history of IV drug use - risk of hepatitis and such. He wanted to just disappear at the end and not be a burden on anyone. So our plans don't necessarily turn out the way we hope they will.

  • Rita / Bring Back Sophie 4 Real
    6 years ago

    3katz there is a difference between being kind and being a saint. I have no doubt you did everything you could for your brother. He was an adult with his own burdens. I would really consider checking with your local chapter of Alanon for support. There can be so much guilt and remorse when someone's life ends early under difficult circumstances. The people at Alanon will really understand your struggles. Be gentle with yourself.

    3katz4me thanked Rita / Bring Back Sophie 4 Real
  • Rory (Zone 6b)
    6 years ago

    Katz, Please don't beat yourself up for not always being there for you brother. Addiction is a disease that drives people away. If you try to help your are only enabling the addict and your own life becomes as chaotic as the addict's life. It's one thing to stick by a friend or relative with a physical disease but another thing to stick by an addict who will lie, cheat, and steal from you to feed their addiction. I've gone down that rabbit hole and it's ugly down there.

    We all have only one life and self preservation is not a bad thing.

    3katz4me thanked Rory (Zone 6b)
  • sushipup1
    6 years ago

    Katz, you ARE a saint. You are here now and doing the right thing. Don't be hard on yourself.

    Ask the hospice staff about counseling. They often have something, or they can direct you to a group. Ask if there is a Senior Peer Counseling program in your area. AlAnon is a great idea, too. But do find someone to talk to.

    3katz4me thanked sushipup1
  • 3katz4me
    Original Author
    6 years ago

    Thanks all. Everyone I've talked to says the same thing - don't beat yourself up and it's okay if you have to put the person out of your life so to speak. Having a lot of addiction in my family I've tried Alanon in the past. It's just not for me. I have family and friends I talk to about it but there's something about hearing the advice of this group who is unbiased in the respect that you don't really "know" me. I'll get through it. I've been through a lot of difficult stuff in my life and as they say, it makes you stronger. Thanks for listening!

  • cyn427 (z. 7, N. VA)
    6 years ago

    I am glad he made it to hospice. I have no doubt you will be glad to have been with him at this point. No regrets.

    oh, and I am with you on Alanon. I have heard it really helps some people, but it wasn't something that helped me.

    3katz4me thanked cyn427 (z. 7, N. VA)
  • blfenton
    6 years ago

    You've made him comfortable and hopefully he feels settled. Everything that came before, you need to let go of that. He might be simply hanging on because he's liking the feeling of being comfortable and settled and you did that for him.

    He will let go when he's ready. Be at peace with the care that you gave..

    3katz4me thanked blfenton
  • 3katz4me
    Original Author
    6 years ago

    All over now. He passed on to a better place around 9:15 tonight. I'm so thankful his suffering is over - for his sake and mine - truly a relief for me. He will be cremated and he didn't want any kind of funeral or memorial service but I will talk further with his friend about whether or not to do something informal for his friends. She wanted to do that and he said no but that kind of thing is for the living so we'll see. Big sigh of relief.......

  • User
    6 years ago

    Hugs to you. You did everything right. His pain is over; I sincerely hope your pain is as well.

    3katz4me thanked User
  • cattyles
    6 years ago

    Sending you a big, big hug 3katz.

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  • Rory (Zone 6b)
    6 years ago

    I am sure your are feeling both sadness and relief. My best to you.

    3katz4me thanked Rory (Zone 6b)
  • blfenton
    6 years ago

    (((3katz4me))) and peaceful thoughts for you. And, I know it might seem too late but warm hugs for your brother as well.

    3katz4me thanked blfenton
  • Funkyart
    6 years ago

    My thoughts are with you. I hope you find some peace in the end to his struggle and pain.

    3katz4me thanked Funkyart
  • texanjana
    6 years ago

    I am glad that your brother is at peace. I understand your relief. Sending peace and comfort to you.

    3katz4me thanked texanjana
  • gsciencechick
    6 years ago

    I second what blfenton said.

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  • lascatx
    6 years ago

    I am sorry for your loss, even if it was a strained one, and grateful for your peace and his.

    3katz4me thanked lascatx
  • Rita / Bring Back Sophie 4 Real
    6 years ago

    I am so terribly sorry for how difficult this period has been for both you and your brother. I pray for you to both be comforted at this sad time. Please accept my condolences.

    3katz4me thanked Rita / Bring Back Sophie 4 Real
  • lizbeth-gardener
    6 years ago

    I'm so sorry for the pain and suffering you have both been through and glad that he is finally at peace. I hope that you will be gentle with yourself and will be able to recall some pleasant memories from the past. I would encourage you to consider some form of commemoration of his life. From my own experience, I think it will be meaningful to you in time.

    3katz4me thanked lizbeth-gardener
  • OutsidePlaying
    6 years ago

    Peaceful and comforting thoughts to you. I'm so sorry you've had to go through this difficult time, but surely it is a relief and a release.

    3katz4me thanked OutsidePlaying
  • robo (z6a)
    6 years ago

    My condolences to you. You did your best to ease his final days and in doing so came in for a lot of stress yourself. You are a good sister.

    3katz4me thanked robo (z6a)
  • hcbm
    6 years ago

    Condolences to you and all that cared for your brother. May time give you some peace.

    3katz4me thanked hcbm