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Meet fellow Caregivers - Introduce yourself
Caregivers | Last Active: Nov 12, 2023 | Replies (707)Comment receiving replies
Decompensated Cirrhosis - Alcohol induced
Good morning. I'm new to this and a little hesitant ... but here goes. My husband, 70, who has been an abusive drinker for 15+ years was warned three years ago he had the onset of cirrhosis and was on a slippery slope. He chose to ignore his doctor and his drinking escalated even more (2-8 bottles/day). In May he collapsed with a severe variceal bleed; we've been in/out of ICU and ER the last four months ... on death's bed twice. At my husband's request, his doctor forwarded his file to Cedars to get on the transplant list. With a MELD of 31, his case has been escalated - but he has work to do in the sobriety department for the best chance of being approved by the committee. Without the transplant, the doctor estimated he has 3 months.
Let's just say I've been down the road of empty promises to recovery at least 10-15 times over the last ten years and I have zero hope. He doesn't believe in AA or alcohol addiction. The docor was brutally honest: the ball is in his court to prove his 1) his understanding of his disease and 2) his commitment to sobriety. The window to prove this and get on the list and receive the actual transplant is short ... literally within the three months. The call with Cedars was this past Wednesday; the doctor is fast-tracking his case to get him for testing within the next week and told him to call AA immediately and start documenting the meetings .... so when he goes in for physical/psychological testing he already has several meetings under his belt. I saw his notes that he found a local support group, but he did not attend. Today is Saturday, no attendance. All too familiar with this pattern as it is exactly what he has done over the last 10 years. In my husband's mind, he has been 'sober' for the last four months - which he told the doctor. He does not understand or acknowledge this isn't sobriety - but the reality is he has been too sick to drink.
I am 12 years his junior and have an amazing career with an employer who has been incredibly supportive. But I have to be realistic and think of myself and my future. I am fully aware I cannot be the primary caregiver through this process or after. My job is extremely demanding and I acknowledge I have not been on my "A" game. Local family (3+ hours away) are also unwilling/unable to take on a caregiver role. I have been very honest with my husband that I have gone as far as I can in this role as a caregiver and he will need to figure out the rest. Despite telling him it's his responsibility, my co-dependent nature can't help but research/seek out in home healthcare. Resources are limited and the financial aspect is staggering.
To be blunt, I don't believe he deserves a liver. He created this nightmare - despite being warned - and I believe that precious gift of life should go to an individual who has a diagnosis out of their control and who has a full life ahead. Forgive me for such a harsh statement - but for the handful of people who truly know what the last 10+ years have entailed - they understand. If you, too, have been in this hell, I hope you also understand.
I am not prepared or willing for this next length of the journey. It will be my demise financially and emotionally. I am only 58 .... I have a lot of life before me and I don't want to be the bitter, angry person I see in the mirror.
I'm not sure why I am submitting this ... perhaps a hail-mary to ask how any of you got through this with cracking? I know I am a very strong person. I also know God won't let me down. But today is one of those days I feel afraid, alone and weak.
Replies to "Decompensated Cirrhosis - Alcohol induced Good morning. I'm new to this and a little hesitant ......"
I am very sorry to read this. I am one year older than you and find myself also in a very difficult situation where his family does plenty to criticize and nothing to help. None of them are willing to do any of the things I am “supposed to be doing.” It is truly a dreadful situation to find oneself in. May God help both of us
I came upon this forum as I was researching my husband's colon cancer situation last night. He was diagnosed about a year ago, and had a large tumor removed from his colon in April, after about four months of chemo. A recent PET scan showed two small spots, one on his liver, and one on his lung. He is beginning chemo again tomorrow in hopes of treating those. Yes, being a caregiver can be emotionally draining. I try to remain positive, and most of the time I am successful, but I also would love to feel "normal" again. Between covid and cancer, not sure when that will happen!
The reason that I am responding to your post, is that my husband is an alcoholic who has been sober for 34 years. I do remember the complete frustration of living with an alcoholic. How awesome of you to be able to put into words your thoughts and feelings the way that you have. I want to share with you, that I joined Al-Anon all those years ago, at the recommendation of our family doctor. It changed my life. I learned much about myself that I carried forward in raising my kids, in my friendships, my job as a teacher, and of course, my marriage.
You have a great understanding of what is going on with your husband and yourself. Take a deep breath, give yourself a break and realize that you have come a long way!
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@jugar It took a big step for you to post this, and I commend you on being honest not only with yourself, but from the caregiver's side. Please do not see yourself as weak. In my situation, my ex-husband didn't/couldn't see the toll it was taking on me.
Before a transplant can occur, the team will assess the ability/willingness for the recipient to take care of the gift they receive. They are under no obligation to transplant an organ into someone who won't honor that gift, who may by their omission cause a rejection. I personally know of several people who needed an organ, but were not ready to change their lifestyle, and then sat on the list due to their own actions.
By expressing to your husband how this affects you, how you see the situation, by realistically seeing and explaining the entire thing, even though he may not hear you nor want to understand, you have done all you can, you put it out there to him, and can decide your next moves with a clear heart and mind. You do not wish ill on him; presenting the facts and having no positive response from him to ensure a good outcome for a transplant is all on him, then. Been there, done that. My ex and I were where you are, and I heard promises and when those were broken and empty, after I had tried everything possible from my standpoint, I had to think of myself and sanity first. Was it difficult? Oh, yeah! As a co-dependent you want to save that person, but you cannot without their participation.
Caregiving can be selfless, exhausting physically and emotionally, and at the same time the most rewarding experience of a lifetime. In other situations, it can cost you your own health [physical and emotional], all your finances, and can leave you bitter. Those seem to be to swing points on the caregiving spectrum. In my situation, I chose to leave to save myself. My ex passed some years later, a bitter man, alone, homeless, cirrhosis having taken his life.
Ginger