Meet fellow Caregivers - Introduce yourself

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let's use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Caregivers Support Group.

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.

REPLY

Posting this Hail Mary was the first step in you helping yourself and it is an enormous step. First off, I would ask you to be kind to yourself as you have been through a lot. I was in a similar situation without the illness a lifetime ago. I cannot imagine being there through the caregiving years that have probably happened years after I left. Give yourself a kudos for sticking by him while he was sick after years of abuse. By making him responsible to deal with this disease he is dealing with the consequences of his actions. It does not mean you are heartless or bitter. You are still helping him when you can, the best you can, but your career is important to the equation as well. If you are emotionally empty you can’t give anything to him. Your career feeds you emotionally, and it feeds your marriage financially. As you stated these medical issues can be financially toxic. I would also add that acknowledging you are co-dependant and seeing that in yourself is pretty darn healthy, even if you still do things you said you wouldn’t. Do what you can to avoid looking back with continued heartbreak, but don’t beat yourself up when you need to take of yourself. I am hoping more people can chime in here maybe with a totally different view point. We have a really diverse group of members here.

REPLY
@jugar

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.

Jump to this post

@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

REPLY
@jugar

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.

Jump to this post

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

REPLY
@gingerw

@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

Jump to this post

Thank you both for your support and encouragement. Some days are incredibly hard and you helped me get through one of them. Although each situation is unique, I know my situation is not isolated. Ginger - - it was and is helpful to know how you got through. I am thankful to hear the words from someone who actually walked through this and came out the other side. I am fortunate I have family supporting me through this incredibly difficult stance and decision making process. Ultimately, I know my husband's actions (or lack their of) will determine the outcome but in the meantime each 'no' I have to say crushes the shards of my heart even more. Thank you again for your support to me and others in this process.

REPLY
@nrocpop

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

Jump to this post

My prayers are with you - truly. I am blessed in that I have family who understand and support the choices I am making. I feared I would not have that and was humbled at their grace and mercy. I encourage you to create and lean on others in your village. God will provide you support through people you may never have thought to reach out to. I know that likely is not how you normally handle things - I am the same way. But if I am learning if I don't lean and take the support that is offered, I will never survive ... and I've been surprised at who God has placed in my world. Old friends, current friendships? Neighbors, support groups, church? Do you have a hospice team - they have all avenues of support. That's my next step.

Hopefully through your process you can find one or two people you can connect with. Just being able to talk, laugh, cry and be 'normal' is so important. Journal journal journal ... I find writing incredibly cathartic (clearly). My prayers are with you.

REPLY
@nrocpop

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

Jump to this post

Perfect example of how to make a hard situation even worse - criticize the caretaker, but don't offer to take over, or even to help.
@jugar and @gingerw are absolutely right about taking care of yourself, and finding what we call a "family of choice" to help you through this.
I was talking to my cousin's daughter yesterday, who cares wonderfully for her Mom - she is only 36, and has had to turn away from friends and family who criticize her for doing it - suggesting she is somehow shortchanging her own daughter. We assured her that her daughter is learning a wonderful life lesson, is not at all neglected, and she should turn to those of us who support her & her Mom for help and reassurance.
And we reassured both cousin and daughter that they were absolutely RIGHT to turn care of alcoholic/abusive stepfather over to his kids and walk away to preserve their lives and sanity. Even though they both lost significant financial resources by doing it.
I'm so sorry you find you are in this situation. There are many here who wil buoy you up - please feel free to visit whenever you wish!
Sue

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@afotoart

Thank you for your thoughtfulness. I really appreciate the support. Most of his friends are ill as well with cancer too. Life if really difficult right now, but God will get us through this, as He always does. I pray all of the time for his guidance and support. God is so faithful. I truly believe that things will be ok, his will be done.

Jump to this post

@afotoart I've been thinking of you. How is it going? We’re you able to find an Agency on Aging in your area?

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@jugar

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.

Jump to this post

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!

REPLY
@opheli

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!

Jump to this post

@opheli Thank you for a thoughtful response, and yet another possible way to work through the efforts of being a caregiver. I hadn't thought of Al-Anon, and you are correct, it might be a useful tool for @jugar to try. https://al-anon.org/

Welcome to Mayo Clinic Connect, by the way! We are an online forum sharing our experiences and tips, which you certainly did! Have you had a chance to wander through any of the other discussion groups, that might pertain to your husband's situation? There is a colorectal cancer discussion here: https://connect.mayoclinic.org/group/colorectal-cancer/ It must be disappointing to find out your husband has to start chemo again. What has his medical team had to say about the small spots?

This is a good place to come when you need to talk or vent. We're always here!
Ginger

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