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

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Dog's Friend
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 11/1/2009 5:37 AM (GMT -7)   
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.

jenny64
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 11/1/2009 7:04 AM (GMT -7)   
I am a caregiver of a spouse--circumstances a little different then yours--but I am watching him die in front of my eyes. This has been going on for 2 years--the last 9 months being the worst. I felt so guilty over some of my "thoughts"--I am an excellent caregiver, but my thoughts are hell. My best friend gave me a wonderful "Dear Abby" letter from a caregiver and all of her thoughts--the anwer was that we start grieving and feeling the loss long before they are "gone". The answer from a mental health professional made me feel "normal" and better--I carry the article with me. No one can understand unless they have been in your shoes--many will have an opinion and have no idea. It is the hardest thing that I have ever done................I hear you!
Jenny

rainbeau
Regular Member


Date Joined Feb 2008
Total Posts : 39
   Posted 11/1/2009 9:55 AM (GMT -7)   
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

Dog's Friend
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 11/1/2009 11:10 AM (GMT -7)   
Jenny64 and Rainbeau,

Thank-you for your kind replies.

Yes Jenny, I have been grieving for what we have lost. 5 or 6 years ago my beautiful wife and I were hiking in the Rockies. We both had good jobs. We built a cabin with our own hands on some property we have. We raised 2 great sons. I grieve because I will never have an enjoyable experience like that with my wife ever again, and it seems so pointless.

I just have to learn how to grieve and not fall all the way into self pity.

Thanks again.

Oh yeah, my "real" name is Andy.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/1/2009 1:38 PM (GMT -7)   

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



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 11/1/2009 3:32:13 PM (GMT-7)


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/1/2009 9:35 PM (GMT -7)   
Andy,
 
Welcome to the forum! You will find many of us caregivers here. Do not at all feel quilty for feeling what you are feeling. My husband has been ill for 6 years now, and he is so miserable most of the time, that I sometimes, too wish it would just end for him. It just does not seem fair to watch them suffer like this. You have to know they they also probably don't like living like this.....if that is what you call it. My husband's MELD is pretty low, but he has been suffering from several "side issues" as a result of his liver disease which just makes his life horrible. I would definitely try to call Hospice and see if they can step in for you.....they would be able to take over and give you some support and relief as well.
 
You hang in there! God bless!
 
Mer

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 11/2/2009 1:07 PM (GMT -7)   
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.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 11/4/2009 11:10 AM (GMT -7)   
Andy, you can rest assured that you are not alone in this struggle. I am the sole care-giver for my wife who is suffering from ESLD (auto-immue hepatatis/PBC). She has been admitted to the hospital via the ER 5 times this year and takes 20 meds each day. It has been almost 4 weeks since her last hospital visit, when she received 4 units of blood before her discharge. We go through the same pattern  each time after her release, in the she has energy for a couple of weeks, then she begins to slide downhill again, with her hemoglobin count and blood-pressure gradually dropping. Yesterday she woke up with "thrash" in her mouth, which is not the first time. She has a white build-up inside her lower lip, and I suspect in her throat too, as she is coughing a lot. We've been told that xafaxin (an antibiotic) is probably destorying good bacteria, which is causing the "thrash" fungus buildup in her mouth.  I have had a call into her primary care doc since they opened this morning asking if he can call her in a rx, but have heard nothing back from his office, as they promised to do. It seems each week brings a new problem to deal with. She has varcies in her upper stomach, however her most recent endoscope didn't show any signs of a bleed, nor did she show any signs of internal bleeding before I took her to the ER. Her GI doc says the low hemoglobin is probably  related to her liver disease. She is extremely bit**y this week, which in turn causes me to be irritable also. This combined doesn't make for a good week. Her oldest daughter is coming from out of town this weekend for a visit, so I'll be glad to let her deal with my wife for a few days. I'm just getting so tired I don't know what do to.  I feel for each of you folks having to go through this. Some times I believe the care-giver may suffer as much as the patient (at least emotionally).

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/4/2009 3:06 PM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 11/5/2009 8:18 AM (GMT -7)   
Thanks Connie for correcting me, and yes it is "thrush". I called her primary care doctor yesterday and he faxed a prescription named "fluconazole 150mg" to our pharmacy, with instructions to take one pill by mouth every 3 days. She took her first pill yesterday afternoon, so hopefully it will start to work in a few days. I will also try to find the mouthwash you suggested. She says that it's not really hurting, but it sure looks terrible.
 
Charlie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/5/2009 9:06 AM (GMT -7)   
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..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/5/2009 8:03 PM (GMT -7)   
PG....it really does affect us not only emotionally but physically. I am finally realizing that some of the "aches and pains" I feel are actually the stress manifesting in my body. One thing I have learned is that if I do not take time for myself and plug into something I enjoy doing, this disease and caring for a loved on that has this disease really sucks the wind right out of you at times. Today was one of thos days.....my husband was absolutely refusing to go to the doctor this morning. He was acting like a child and I just got angrier and angrier....and finally got him there. But, I sing with our band at church, and I almost did not go tonight because of being drained after today, and went anyway. Glad I did....it was just the right little break I needed for today. I say all this to tell all of you caregivers out there that even if it is something as silly as going to the grocery store by yourself.....do it and make the most of it. Breathe!!! It really does feel better to stop and do that!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/5/2009 10:13 PM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 11/6/2009 6:51 AM (GMT -7)   

When Janie woke up yesterday morning, the thrush had almost completely vanished. Unfortunately her energy level was also mostly depleted. She tried to stay up all day, but made most of the day napping in her recliner. I try to stay busy as I am so very fortunate to have an employer who permits me to work from home as much as I can. If I didn't have something else to keep my mind off of Janie and what the future holds for her, I don't know what I would do. Her oldest daughter, who teaches school in a city about 3 hrs from us, is going to visit her this weekend. She is planning to cook some of Janie's favorite dishes for us to freeze in hopes that she will try to eat more, as of lately she just has no appetite for any kind of food. Thanks again for all of your thoughts and prayers, as this is probably the most exhausting endeavor I have ever tried to do. Next month she will have to start having all of the medical tests done again so that she can remain on the transplant list. I really dread it, as last time it took three full days in a very rigid schedule of walking from building to building at a very large hospital for each test. I'm sure this year we will have to resort to a wheelchair, as I know she will not have the energy to do it on her own. I hope each of you have a good weekend.

Charlie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/6/2009 9:40 PM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 11/29/2009 8:56 PM (GMT -7)   
Andy, I havent been on this site for a long time but when I saw your post it so reminded me of the many challenges.  I took care of my Doug for 10 years before he passed but I need to not remind you of how hard it is. I will tell you that when she passes not being a caregiver is just as difficult at first..... then you will start to remember all the good things about your wife and those will bring you joy.  Even though she is an alcoholic with all its bad things that come with that you will think of her in a different light and smile. It really does come to you and you need to reach out to people, friends some old and make some new.
Sue
When I started counting my blessings my whole world turned around.

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