I read the post by Tripp and her struggle as her husband’s caregiver and I wept.

I read the post by Tripp and her struggle as her husband’s caregiver and I wept.
It hit so close to home.

My 54 year old wife of 34 years is coming up on the end of our fight with ESLD.

My wife Lynn has been an alcoholic more than 25 years. She has been to detox multiple times. She has spent the 28 days at one of the best (and most expensive) residential programs in the country, been in and out of AA, had periods of sobriety of up to almost a year at a time, and it is all for naught.

Lynn is dying before my eyes with end stage liver disease.

I know alcoholism is a disease, but I am still angry and upset at times. Lynn has been given the tools time and again to work with this disease and she has refused to do so. If she was diabetic and didn’t take her insulin she would be considered stupid. If she had cancer and refused lifesaving treatment, she would be considered stupid. It is no different with this disease.

She had one chance at living and that was a liver transplant. But as most of us here know, she needed 6 months of sobriety to even be considered for the program, and she couldn’t do it. Now she is too sick to be a candidate for transplant.

In December two years ago she fell outside our home in Wisconsin while I was at work, and was too weak to get back up. She lay outside in subfreezing temperatures without a coat for over an hour before she was discovered by a neighbor who called the paramedics. When she got to the ER her core temp was 80 degrees. After 4 days in the ICU, 10 days in the hospital, and 2 months in a nursing home to learn to walk again, she came home where she remained sober for maybe 2 weeks.

Her condition has continued to deteriorate as the disease has progressed. Until recently Lynn could not get around without the aid of a walker. Now she is completely bedridden.

She has had multiple falls in our house with the resulting runs to the ER in the middle of the night for x-rays and CAT scans. One fall resulted in a broken hip and hip replacement surgery, 4 days in the hospital and rehab. Another time she broke her shoulder. She has re-broken her ankle. She has fallen and smacked her face too many times to count.

This past August Lynn spent 4 days in the hospital and 2 weeks in a nursing home when the disease progressed to the point that she was so jaundiced she almost glowed. For days she was too weak to even sit up, and extremely confused because of encephalopathy. Her MELD score was 32 when she was in the hospital. She wasn’t home from the nursing home 2 hours before she was out to the store for booze.

Her most recent accident happened 3 weeks ago after a fall at 1:30 in the morning while I was asleep. She spent 2 days in the ICU for observation of a sub dermal hemorrhagic contusion (bleeding on her brain). At time of her fall her blood alcohol level was .4, in most states .08 is legally drunk. The whole left side of her face is purple from the bruising, and in her condition it will be months (if she lives that long) before it clears up. On the way home from the hospital she asked me to stop at the store so she could get more booze, I declined.

She has stopped drinking for now because she is too weak to get out of bed and I won’t buy alcohol for her.

She sleeps about 20 hours a day, has no appetite, and drinks very little of any kind of fluids. She still demands that I get her booze, and I still decline. When she is sleeping her breathing is so shallow that I have to stare to see if she is still breathing at all. She is completely incontinent and the latest manifestation is the appearance of the black tarry stools that the Dr.’s are always asking if she has experienced when discussing her BM’s. From what information I have been able to gather, this is not good.

I am fortunate in that I have a good job and health insurance. My employer is allowing me to work from home so I can be Lynn’s caregiver. I know from reading many of the posts here that other folks have had similar experiences living with someone with ESLD, and that I am not alone. But gawd it is SOOO lonely dealing with this. I have no family close by. Our kids live in another state and get here when they can. I have no close friends because they have all fallen by the wayside over the years as Lynn’s disease has progressed and monopolized our lives. I have looked into respite care and custodial care, but insurance won’t pay for it, and the hourly rate is more than I earn.

I know this is only going to end one way for Lynn, and God forgive me, I just want it over so I can have some sort of a life.

Please don’t get me wrong. I sincerely love my wife. I truly believe in my vows of “In sickness and in health, ‘til death do us part.” Or I wouldn’t have stuck around this long. But the not knowing what is going to happen next, or when it is going to happen is what is eating me up inside.

Sorry for the long post, thank-you for listening.

dog's friend...thank you so much for posting...i'm a few steps behind, but my path is the same as yours. as selfish as it may sound, it's comforting to know i am not alone.

peace and grace, love and light,
rainbeau

Andy, I understand your frustration because I went through that with my mother regarding the chronic alcoholism.  I am really in awe of the fact that you have stuck it out with your wife, as I just couldn't do it with my mother.  There was too much anger and hurt.  I cut off communication with her over 20 years prior to her death.  I really could not believe that she lived so long, but she had to have sobered up at some point as she was living in a NH prior to being hospitalized.  (I learned all this from her medical records, after her death.)

One thing my mother gave me was my own sobriety.  I was traveling down the same road and when I realized I was becoming my mother, I joined AA.  I was ready by that time, as drinking had ceased to be either fun or an escape.

I am sure there will be some lessons you will learn from all this.  Nobody will think less of you for any thoughts you may have.  They are normal.

You deserve to be happy.  Please remember that.

I would like to suggest that Hospice be called in.  They can be a great help to you, offering information and respite care, making sure that your wife is kept comfortable, etc.   You can call them for info, but I believe a treating physician has to make the referral or confirm that she is end-stage.

Hugs,

Connie

hi i know what you are going through as my mom is a alcoholic and i cant cut her out of my life as she is to sick. i am scared everyday that i will wake up and she will be gone but yet there are days, especially after she fights with me and treats me like crap, that i think my life will be easier when she is gone and then comes the guilt cycle where i feel guilty for having these thoughts. its a vicious and endless cycle i go through and no one really to share it with. i am married but my hubby cant stand my mom and i dont blame him as she has done a lot of harm to him and im lucky he didnt leave me over what she did to him. he would listen and be supportive but i know how he feels and he could care less whether she lives or dies but he does see how it is affecting me. no one i know understands why i am her caregiver as she never cared enough about me. so i definitely know what you are going through. continue denying to buy her alcohol and get out and do something for you at least once a week. you will feel better afterwards. i agree on calling hospice in as when i talk to her doctor on the 18th to see if he has a timeframe, enough to call hospice in for my mom.

Charlie, it is "thrush."  There is a liquid med referred to as Swish and Swallow, which will help clear this up.  I've had thrush and it is very uncomfortable/painful.  Makes it hard to eat.  The antibiotic is Xifaxan.  And it's true that antibiotics taken over a long period of time do cause thrush, which is actually a fungal infection.

My thoughts are with you all.

Hugs,

Connie

Hi Charlie, Amen to this disease affecting the caregivers diversely. Not only does it affect you emotionally, but it can affect you physically also. It almost killed me. I was so busy taking care of my husband I developed Valley fever and didn't know it. I just though that I was exhausted from the caregiving. Fortunately my immune system fought it off.

Sounds like me you really could use a break. When does her daughter come?

Thoughts and prayers..........

Charlie, good to hear that your wife isn't finding the thrush painful.  For me, it was.  I hope the pills work for her.  I don't believe you can get the special mouthwash w/o a prescription.

I agree with the others that it is really necessary for caregivers to take breaks.  In a lot of ways, this disease is worse on the caregivers than the patients.

Hugs,

Connie

Charlie, a wheelchair makes things much easier.  I've had to resort to using one myself at times.  Mayo provides these, as well as volunteers to push patients wherever they need or want to go, including the cafeteria.  I'm very familiar with the long days of testing and they can be extremely tiring.

I'm glad to hear that Janie's daughter will be with you this weekend.  Perhaps that will lift her spirits a bit, and she may even want to eat some of what her daughter cooks.

My thoughts will be with you.

Hugs,

Connie