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Hello, I'm soon to be a member of the club nobody wants to join.

My husband was diagnosed with end-stage liver disease in June of this year. The doctor told me that while he expects Joe to last six months, he doesn't expect him to last twelve.

In the meantime, my 93-yr-old mother who lives with us has the beginnings of congestive heart failure.

In my lighter moments, I reflect that it may be a race to the finish between those two. I am sole caregiver to both.

While his cousins and several aunts have been helpful and wonderful to us, his mother and siblings have been awful. They do not call, will only visit when specifically asked, and one brother even lives right next door and goes a mile out of his way to see their mother every morning while ignoring his brother. Fortunately, in this instance, Joe doesn't know he's terminal. I do, though, and find their behavior both inexplicable and inexcusable.

I haven't told Joe because in the 30 years I've known him, he's never been able to countenance the idea of his own mortality. He has struggled and made great strides since his six weeks' hospitalization last summer. I feel that if he knows, he'll give up and die faster. And be frightened and miserable during. He doesn't deserve that. He knows he coded in June and that his health is precarious. That's enough.

I had always considered his family my family, but after seeing the way they've treated him (and treated me, too), I am no longer able to do so. His mother even ran into his best friend from high school who was making his first visit "back home" in three years, and didn't say a word to him about Joe's condition. It's bad enough she won't visit, but she's also effectively running off those who would, isolating us further. I emailed him after I heard about that, and he said that had he known, he would have come right out. Now he probably won't see him before the funeral, if then.

This time of year is hard, not because of the impending holidays, but because we'd travel in October and November for a couple of large book sales, making a journey and a fun day of it, and this year I've realized we've already done that for the last time.

It is hard to see how thin and wasted he's become. It's hard to see his once-fine mind (near-to-genius IQ) and quick wit corroded and dulled by disease. It's hard to bear when his genial nature and wonderful sense of humor are overwhelmed by toxins and turned into irritability and paranoia.

He's been my best and primary friend for 30 years, and he's going away.

My mother and I aren't especially close--neither she nor my father particularly wanted kids, but that makes things with her both easier and harder.

It's hard to have to fight the medical establishment (treatment so bad that I had to send a letter of complaint to the Board of Medical Licensure), Social Security, his family, and, when both he and Mom are out of touch with reality, my own household. Not only that, but the power company had tree trimmers come out and clear 20' either side of the power line on this road. While they told me they were only trimming some poplars and "brush", they took out most of my dwarf fruit trees, and left all the debris lay, so if I still have the energy, I get to fight them too.

All those in my immediate life who loved me are leaving, and are taking the person I was in relation to them with them. Everything in my world is disappearing except for bills.

Any more, I feel like the slow antelope in the herd, with the lions converging, and have no one in my life I can talk to.

So here I am.

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Wow, folks. Thanks for the warm, understanding welcome. I'm overwhelmed. You must be related to my inlaws.

An online friend suggested I find a grief support group since I don't have anyone to talk to in my real life, but it looks like I'm going to have to keep searching. Thanks a whole hell of a lot. What, 18 views? How hard is it to spell "Welcome"?

I guess if they're not actually dead yet, you don't rate, it doesn't count. It's not painful because they're still here. That's great to know. That helps a lot. I feel ever so much better.

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Dear One,

I'm so sorry that you're feeling unwelcome here, but I can assure you that is not the case. However you found us, if you spend any time here reading through the hundreds of posts in all the various forums, you'll find that you are among some of the most caring, compassionate people you'll find anywhere. You joined us less than 24 hours ago and sometimes it takes a while for others to find you ~ depending on which forum you choose to use. As you can see, some of our forums are more active than others. This one is among the least active, as most of our members join us after a death has happened. This does not mean that you are any less important or any less valued or any less welcome than anyone else, and I hope you won't draw that conclusion. As the moderator for this site, I read every single post that appears in every single forum, and I read your first post shortly after it appeared here yesterday afternoon. As you've already observed, several other members have read your post, too. Sometimes it takes a while for members to respond, and this could be due to any number of reasons. I hope you'll refrain from judging any one of us before you've had an opportunity to get to know us.

That said, I want to say how sorry I am to learn of your husband's terminal illness, and I cannot imagine the weight and the pain of that burden on your shoulders ~ most especially since you've chosen not to share this information with your husband or his family, and as a result you are bearing this burden all by yourself.

First, I invite you to read my article, Should I Tell My Dad He's Dying? **

Next, I'd like to point you to a thread in this forum that was started by a woman who was suffering from a terminal illness and had decided not to let her family know. I encourage you to read all the posts in the thread, as it may give you a different perspective: I Can't Tell Them

Finally, I hope you'll decide to stay with us and give us an opportunity to offer some of the information, comfort and support you deserve, as you continue to travel this very challenging road.

** Note: If you're unable to connect to this article on the Self-Healing Expressions site, it's because SHE is moving to a new server this weekend. I'm told that the site will be back up and functioning by Monday.

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Hi sorry to hear of what is happening in your life and so sorry you didnt feel welcome here I amjust checking in for today.....somedays am not able to check in due to time restraints........or lack of energy from what I am enduring. I lost Mike 6 months ago 5/9/11 at the age of 45 from liver disease. I was his sole caretaker, plus worked full time as a RN.....it was exhausting, my plate was full, such as yours......I understand you dont want to tell him to much as you are afraid he will give up......that is what happened to us, we were originally given 2 yrs....then 6 months......Mike died 2 weeks later...

I understand how those that are afflicted with this disease grow increasingly confused, delirious......it is so upsetting to watch this occur, and when it got so bad I ended up placing Mike in a nursing home lock down unit for his safety......and so I could rest, although dont know what rest I got......as i couldnt leave his side......he went into Septic Shock and was placed inpatient Hospice and passed 5 days later......

I wish I could advise you that things will get better, yes I felt a sense of relief when it was over....then began my new journey into grief, a journey that I had never experienced on this grand of a scale............

Take care of yourself, hard to do now.......how well I know.............Dave

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Dear nobodys sweetie,

I am so sorry that your husband is dieing. I can only imagine what it must be like to know that he will be gone soon. Watching him change and knowing that your time is limited must be very overwhelming. Having to deal with your mothers illness on top of your husbands seems downright cruel. I can tell that you are suffering and that the pain must be overwhelming at times. Let alone the responsibilities you are carrying. I encourage you to try and find one person you can confide in and rely on for some strength. One of the hardest things I had to learn was how and when to ask for help. I also encourge you to find sometime for yourself. A manicure and pedicure every week got me throught the first few months after my husband died. No one there knew my suffering but the physical contact helped sooth my troubled heart.

My husband died in an accident and was 49 years old. I did not have to watch him die. He left the house one day and hours later I was told he was dead. In one brief instant my life was shattered. I had never felt any extreme level of emotional pain until he died. I had been lucky in life and never had tragedy. I have found that very few people know how to handle death, dieing or the pain of grief. They don't know what to say or what to do and so they often do nothing. When my husband died my mother did not come to me. She chose to let my siblings help me because seeing me sad was too painful for her. She is still full of excuses. I don't understand why she was unable to just hug me or hold me or listen to me. When my father died four years prior to my husband I spent every waking moment by her side. When I had to leave to come home I called her twice a day. We shared so many tears and I thought of all the people who could relate to me it would have been her. I have come to understand that she is very weak and it is easier for her to ignore pain than allow herself to feel pain. She will never learn anything from her grief.

I am now in my third year since Mark's death and I am in the true learning phase. I often feel like a growing teenager having to make my way in an adult world. My life was so entertwined with my husbands that I am having to relearn independence. But I am becoming an incredibly strong and resilent person. I am so sorry that you are faced with this journey. The work is long and hard.

It is often difficult for me to write to others on this site because it forces me to focus on pain and sadness and it is so very hard to express how much I care. I read the posts almost everyday as a way of coping. It helps me to know that I am not the only one suffering and struggling with death and change. But I know you need to feel encouragement and I know that you need to know that you are not alone. You are not alone. There are so many others who have walked in your shoes and I hope they find the strength to reach out to you as well. Please come here often, if for no other reason than to release some of the pain.

Hang in there. I really do care. Cheryl

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Greetings to you Nobody's Sweetie. As you've noticed, these forums can be really slow. And I agree that can be difficult. Just when you need the support, nobody's there. But we are here. Often it just takes a couple days for reply posts to come through.

I do not understand why some posts here get a lot of attention, while others go almost unread. Somebody will be in the worst kind of emotional agony, and nobody says a thing. And then there will be a flood of replies to somebody who has posted a pretty photo. It doesn't make sense. My best explanation is that human nature is faulted. People here seem to prefer making simple posts and getting easy replies. Maybe that's why it's difficult for newcomers posting about several issues. They want to tell some of their life story, and they deserve to be heard! It just requires more effort to read, think, and respond to a complex post.

About the situation with your husband, you've said a lot and I'm still thinking. I too had a lot of lead time before my mother died, almost two years. And I made good use of that time, spending much of it with my mom. Like you, I had a lot of caregiving responsibilities. But my mom, unlike your husband, wasn't neglected by other family members. The neglect toward your husband seems like pretty rotten stuff, I agree. It's almost enough to sour any good feelings you might have had towards other family members. You will find that people here talk a lot about family relationships that have become difficult. In my own case, my sister got openly nasty with me for months. My relationship with my sister has been repaired, but that was an extremely difficult ordeal.

I don't think anybody is prepared for the loss of a loved one. I have no good explanation for why there is so much pain. Yet we learn from it and adapt. And it's not so easy to give advice. Words are cheap, while the emotion and pain is almost off the scale.

So I'll just stumble along with everybody else here who is grieving. Welcome to these forums.

Ron B.

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Thank you, and please accept my apologies. I seem to have developed some "abandonment issues" over the past several months. ;-)

It's very hard for me to write these things to people I don't know, but I have so badly needed someone to talk to who will understand what I'm going through. There's nobody like that where I am. When I came back yesterday to see that no one had replied, I burst into tears. Which isn't like me at all.

Anyway, thank you again. No doubt I'll be posting more.

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Hello nobodys sweetie, awww, I bet you are still your husband's sweetie! I lost my husband of 34 years on July 4th, 2011. I had also lost my dad just 3 weeks prior to that. Our first grandbaby was born 24 days after my Harv passed and he was about 3 weeks premature and had to be in the NICU for 5 days. At that time, I felt I was about to lose it, couldn't bear anymore pain. We all made it thru and my grandson is a healthy, happy 3 month old now. I am so sorry you felt ignored at first, and I'm sorry you are having to join the club that nobody wants to belong to. I will be thinking of you and hoping no more bad things happen for awhile!

Love and peace,

Pam

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Welcome Nobody's sweetie. Although I don't believe that either. But I am glad you are here, you absolutely found the right support group. I tried out some but found this one to be professional, appropriate, compassionate and full of people that are going through the same thing. I too am alone. My spouse fight 18 months of two different types of cancer. Thought we had the throat cancer beat, only to find out 4 months later he had sinus cancer, which took his left eye, hearing and eventually found its way into his cranial nerves and brain. It was horrific to watch. He passed away April 12, 2011. He was 54 years old. I have one son that lives 4 hours away and I am here alone. It is lonely but this support group has helped with that. I won't lie to you, it is not a journey that I would like anyone to experience. The caregiving was exhausting but I was not prepared for the pain of the loss. I too had some medical issues after his passing. I was not taking care of myself and wound up in the hospital Easter Sunday for kidney stone removal surgery as it would not pass. So... please take good care of yourself and please know that your caregiving can take it's toil on you. You are caring for two loved ones and you need support. I hope you find it here. Welcome and know that we are here for you. My husband also did not know he was dying. I have been dealing with a counselor due to that decision. We were fighting the cancer and never looked back. After his passing I felt extremely guilty about not being there for him emotionally and talking about his impending death with him and allowing him to know that. Don't know why but maybe we could have shared the thoughts that go along with knowing that, instead of me knowing and him not. I just don't know the right answers anymore.

Blessings,

Becky

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Yes I remember the week Mike first got sick, the refrigerator went out.......2 weeks later the a/c went out in the house......didnt want to spend 4,000$ to replace, wanted to spend it on the bucket list, so bought window units.......4 weeks later he was gone, nothing accomplished on the bucket list.......after he died, the computer went out,the dvd player died, the following week the dishwasher burned up, and the a/c compressor in his car went a month after that.......yes I was feeling paranoid........that part I can laugh about now......Dave

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  • 2 weeks later...
  • 1 month later...

Hi there. I'm new here just joined last night. I am so sorry for all you are going through. I lost my grandmother to leukemia in February 2008, and I was her caregiver. I had flown out to take care of her after a blood transfusion, and that was when I learned everything. She had mylidysplasia. While I wad there it changed to leukemia. She hadn't told anyone. We ended up putting her on hospice and I cared for her til she passed. Then I lost my former husband and friend to a sudden heart attack, then my grandpa right after. So I am no stranger to feeling like the world won't stop dumping on you. Wondering if it will get better. When my grandma was dying I made sure to not hold back...I cried when I needed to, took a moment when I needed to. It made me a better caregiver. Hospice was a great place for me then I talked to a counselor before and after she passed. I am now in a parent grief group at Hospice and my kids are in the kids grief group. They have been since we lost their dad. I am actually struggling more w his death as he was so young. My grandma was 90 and repeadedly said she was tired and wanted to go. Somehow it makes it easier. Mark was a 39 year old daddy and still wanted to be here. I miss him so much I hurt daily. Anyway, I'm here if you want to talk. I have been in your shoes and I know they're not fun shoes to be in.

Theresa

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  • 2 weeks later...

I am so sorry for what you are going through, I can relate on many levels with you. My partner is terminal with cancer, and my mother is close to starting dialysis as she only has one kidney left that works and it is failing, she also has congestive heart failure, and had a stroke back in 2006o her mind is not to clear.It is hard when friends walk away when we need them most! I am doing his care all on my own as well, with no one to help, his family took what they wanted from him then tossed his away like a bag of trash. Once he is gone I will be on my own as well, it has many mixed emotions invoved with it, and will have to take time later to sort them out, to busy now as I know you know what I mean being a caregiver.

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  • 5 months later...

I've been a member of this site for over seven years, yet I don't think I've ever looked in this section. Maybe I've been overwhelmed with my own loss, and maybe it's because of what I'm going through with my 90 year old "mother" that made me look here.

I am sorry you felt no one cared when you came here, I know it's months later and I don't know if you have checked back this year or not. I am wondering how it's going now and how you're holding up. Please give us an update.

About your husband's relatives, I'd hold my peace while he's alive, and afterwards, well it wouldn't matter so much if you tell them how you feel...unless you have children that want to preserve a relationship with them, then it complicates things. Honestly, after my husband passed away, I didn't hear from his family any more, don't know how they are, he would be shocked if he could know that.

You've had a lot on your plate...yes that is how it seems to go sometimes...life rolling along and all of a sudden you hit every bump in the road! For myself, life has not been the same since April 2005, just one thing after another. I no longer expect much, just live day to day and if I have decent food and heat and my dog still greets me when I come home, then it's a good day. :)

You are very welcome here, please come back and let us know how you're doing, I'll try to check in now and then to see...

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  • 2 months later...

Just came across this post and so sorry that it took so long for someone to initially reach out to you. Know that people here really do care and really will help and are genuine. I am so very sorry for what you have gone through in the past year and I hope that you can give us all an update and let us know how you are doing.

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