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My mother in law, age 79 just passed away on hospice with End Stage Liver Disease. I was put in the position of taking over her care and bringing her near us about 6 months ago. She had been sick with cirrhosis - we were told due to fatty liver disease -for over 10 +years and had numerous ups and downs but we never had a lot of details as she lived out of state and was always vague and she seemed to still eat whatever she wanted (lots of salt and bad food!), drank alcohol, did not exercise or do any of the recommendations. She also had Type 2 diabetes, was overweight and had stage 3 kidney disease. She had some info her records of prior hospital visits for fluid drainage back in 2019, recommendations for a TIPS procedure that she never got, she had scopes and espohagael banding many years ago. We brought her near us after a 4 day hospitalization for Grade 3 Hepatic Encepalopathy and she seemed to have severe decline over the past few years. She was told she had End Stage Liver Disease and released on high doses of lactalose and rifaxamin, diuretics and by the time we took over her care she was completely exhausted all the time, horrible GI complications, barely able to eat and had to be using the toilet non stop. She did ok for a little over a month, although seemed very uncomfortable and in awful shape from the meds to keep the toxins down. She fell, then was getting horrific headaches and fluid retention. ER could not really do anything for the headaches due to her liver disease. Within the span of a few weeks she got severe swelling in her lower legs/feet to the point her shoes would not fit, was diagnosed with a DVT in her calf which was very swollen and sore and needed fluid drained from her abdomen. She didn't want to be in the hospital anymore or go through procedures like scopes so hospice was recommended to keep her comfortable with all her complications and she was never pursuing or qualified for a transplant. She had severe portal vein hypertension and it would be invasive and risky to treat the DVT and would likely just bridge her to the next severe complication or more DVTs. We did get her on hospice and she honestly seemed to improve a little. She didn't want to take rifixamin or lactlalose anymore due to not able to eat much, GI issues, and horrible diarrhea and hemmoroids that have caused bleeding including rectal varicies so comfort was prioritized especially because she seemed so weak and not able to digest food (even off the meds). She had about 6 weeks where she really did seem a little better other than continued physical weakness, using a walker, but could eat a little more and had a couple falls getting into bed but then suddenly over about a week got slower, weaker, never seemed agitated or confused, just kind of peacefully shutting down. We had just informed her that week we were going to transition to assisted living to keep her safe and we had called in a hospital bed to make it easier for her to get in and out and prevent falls until we could get her to an environment with more help. She had a lot of help at this point with showers, visitors but always wanted to go out and about but she would end up getting so tired when we tried to take her out - barely could get her in and out of the car -we worried she would fall so for her last week or so we only took her on car rides and she seemed kind of upset about that despite a lot of visitors and being able to participate in some things where she lived. I think I always knew she could decline and pass away at any moment but I feel like because of some of our decisions she just gave up and then quickly declined over a weekend and died. Just like a quick and quiet peaceful shutdown of her body. I am told this is a blessing with end stage liver disease but I still just feel like we did something wrong or that we made her give up! The guilt is horrible. Wondering if anyone has experienced something similar. It definitely compounds the grief

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“Decisions for someone who really didn't want to accept her health was hard.”

Yes! You were in an impossible situation. Even if she had suddenly become the perfect, compliant patient, following all the rules, etc. she was just so very ill after decades of not taking care of herself. You detailed a laundry list of serious issues. Like Funkygrandma I am just glad the poor lady was able to peacefully pass away without further suffering.

My deepest condolences to you on the loss of your MIL. She was truly fortunate to have such a caring and thoughtful daughter-in-law.
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In her life she ate what she wanted, drank what she wanted and did what she wanted (except exercise) -- and somehow you think it was *your* decisions that caused her complex of illnesses and eventual passing? You didn't give her diabetes or end stage liver cancer.

Please translate all of what you're feeling as grief and none as guilt, You absolutely did not hasten her death, just the opposite: had you not brought her close and helped her she would have had a much worse experience and probably passed sooner.

I'm sorry for her loss. May you receive clarity and peace in your heart.
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Thank you funkygrandma59. I definitely have some confused guilt and grief and I have been really caught off guard by it! I guess I knew she was going to die but she had just kept going in bad shape for so many years I was shocked when it happened - and happened so fast! But from what I have heard a lot of people experience this with liver disease. Although she did suffer quite a bit she never got to the point of the horrible bed bound, tubes, agony, agitation I've heard a lot of people suffer with at end of life with this disease and it was probably right around the corner. She went out on her own terms- and probably defied the odds considering she never really changed her life style after her diagnosis many years ago. It was hard to make all these decisions and a little traumatic and I think if I hyper focus on all these details it keeps me from dealing with how much I miss her. Grief is hard. Caregiving is hard. Decisions for someone who really didn't want to accept her health was hard. I am in counseling but think I do need the bereavement program- great suggestion.
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I'm sorry for the loss of your MIL, but with everything she had going against her with her health it seems to me that it's actually a blessing that she doesn't have to suffer anymore, and that she's finally at peace.
And what a gift that she actually got to have a peaceful death. Gosh...quit beating yourself up over something you actually had no control over.
Your MIL had had enough and she decided that she was ready to just go "home" where there's no more suffering or pain. You can't fault her for that now can you?
You did absolutely nothing wrong, so that rules out any guilt, but what you are feeling and what often gets confused with guilt is grief.
So please ask the hospice agency that treated your MIL about their bereavement program as all hospice agencies offer free 13 month grief counseling to all family members.
I wish you well in taking care of yourself now and focusing on the many good times with your MIL and not her death.
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