I don’t think I have much time left with Him

[Lenolen]

My husband has an auto immune disorder called Auto Immune Hepatitis. It is a hereditary disease that passed to him from his mother, and it started when he was 14. He’s now 31, soon to be 32 in the next 6 months, but lately he’s just been getting sicker and sicker. Last night we ended up in the emergency room because he’s been vomiting everything he eats and drinks up, and he’s been having a lot of blood in his stool. He lost 8lbs this last week and is now only 123lbs total. I’m watching him waste away right in front of me and I can’t do a single thing to help him, and aside from some nausea and pain meds the doctors aren’t helping him. He’s me ENTIRE life. I don’t know how to deal with any of this and I literally have zero other outlets. I’ve tried talking about it with family, but it seems like they are just getting tired of me mentioning it. I’m in so much pain in my heart and soul. What am I going to do if I lose him? I don’t think I’ll be able to live without him.

[KeirKieran]

I'm so sorry. This is just terrible and I wish your loved ones understood that sometimes you need to say it, even if you've said it a 100 times.

You're right in the thick of it here and you're gonna need outlets. I'm glad you came here. No one here will get sick of you needing to talk.

The thought of how to go on is killing me, too. It feels hopeless, but I keep myself focused on right now and plod along as best I can. Tomorrow is too big a thought right now so I stick with now.

[MODArtemis2019]

I'm so, so sorry for your husband's illness and the lack of support you're getting. It sounds very scary.  I remember at times during my husband's illness feeling like we were all alone in this fight (although we did have some help at times). Do the local hospitals offer any kind of support groups or counseling? I urge you to look into whatever local resources you can find. You need the support. 

[Jttalways]

Yes look into supports groups. Research all you can. Stay strong, continue to be there for him. Tell him everything you want to tell him. I just lost my husband. I thought I had prepared myself but I was not prepared. If I could rewind time, I would tell myself to say everything you want to say and be there for him and support him as much as u can. At the time I thought I was doing all I could but now I’m wishing I’d done more. I know it sounds silly because everyone’s telling me I did do everything I could. But I wish I had gotten a few more “I love you’s” in there. Hoping everything turns out all right for the both of you. 

[KayC]

I am so sorry, it's like living with death and of course that doesn't feel natural.  I just went through my dog having cancer...he was my sole companion since my husband died 14+ years ago, and getting the diagnosis that he had inoperable cancer spread throughout, liver non-functioning, kidneys affected, it felt like I was living with death...having him euthanized eventually was a decision I made to spare him further suffering, but oh God the pain I've been on through this journey, before and after his death, it's felt unreal.  Enough that I can only imagine how you must be feeling.  My husband was also my life and learning to live without him...I can't tell you how hard and painful it was.  I do want to let you know that grief evolves, it doesn't stay in the same level of intensity of pain.  Little by little we begin to adjust to the changes it means for our lives.  It's not easy but we have more resilience at our disposal than we realize.  

One of the most important things I've learned throughout my journey is to take one day at a time...sometimes having to break that down to an hour or a minute.  Appreciate whatever good you can find.  I am sorry you don't feel you can talk with family about it.  A lot of times people get uncomfortable with it, they don't know how to respond, they're afraid of contagion even when it doesn't make sense.  I ditto the need for a support group.  Talk to the hospital or hospice for referral or recommendation to one.

[foreverhis]

13 hours ago, Jttalways said:

I just lost my husband. I thought I had prepared myself but I was not prepared. If I could rewind time, I would tell myself to say everything you want to say and be there for him and support him as much as u can. At the time I thought I was doing all I could but now I’m wishing I’d done more. I know it sounds silly because everyone’s telling me I did do everything I could. But I wish I had gotten a few more “I love you’s” in there.

Except that I lost my sweetheart more than a year ago, I could have written every word you did.  The "I wish..." and "I should/shouldn't have..." and everything else haunt me every day. 

I don't think we can ever be prepared, no matter how much time we have once we've accepted the truth.  That is something that is difficult for some people to understand.  When someone says, "At least you had time to say goodbye," I want to scream (I don't, but I want to). There's never enough time, except to think over and over about everything we could or should have done better or differently.  There can never be enough "I love you" or "You're everything to me" in the world to make up for what we have lost.  And many, perhaps most or even all, times that goes both ways.  Our loves often feel they are the ones who failed us.  In fact, I had to give my love a mantra early on in his cancer journey because he kept apologizing to me for "getting so sick."  I would remind him to say, "None of this is my fault" because none of it was his fault.

Like you, I feel I should have done more and been better and loved him harder, even though everyone, literally everyone, has told me otherwise.  But I'm more than happy to shoulder all the guilt and all the regrets because I am the one still here.  Watching the love of my life fade bit by bit felt like a living death at times.  I was with him through it all, spending night after night in an uncomfortable recliner next to him at the hospital, helping with his care, driving back and forth from the hospital or rehab at least once a day, taking care of him at home, and trying to "keep the home fire's burning" through it all.

Really all we can do is be there for them, be their advocates when they cannot speak for themselves, and love them every minute.  We are imperfect human beings and need to remember we'd unlikely be as hard on others as we are on ourselves

22 hours ago, Lenolen said:

I’ve tried talking about it with family, but it seems like they are just getting tired of me mentioning it. I’m in so much pain in my heart and soul. What am I going to do if I lose him? I don’t think I’ll be able to live without him.

I am glad you found us now.  We "get it" in ways that no one else can and will be here for you no matter what happens.  This forum has been a literal lifesaver for me.  I didn't find the wonderful members here until 6 months after my love died when I was lost and feeling hopeless.

We will never get tired of you talking about whatever you need to say.  No matter how much our family and friends love us, they cannot know what we are experiencing.  And it's true that often times people in our lives feel unable to deal with what we're going through.  Sometimes it's simply that they don't know what to say or they feel helpless.

I know what it is to watch the love of your life struggle and not be able to save him.  All you can do, all any of us can do, is be there for him, tell him how much you love him, remind him of some of the wonderful times you've had together, and take care of yourself as best you can.  You absolutely must give yourself a break from time to time to sleep, eat, and just "be" for a bit.  He needs you to do that for both your sake's and so he will worry about you a little less.

I am sending you all the loving comfort in the world to help you both through whatever is to come.  I hope so much that he is able to recover again and that you have more time together.  You are both so young to have so much happen.  It doesn't seem fair because it isn't fair.  Yet, no matter what, you two have a deep, lasting, precious love.  It is a gift not everyone finds in life.  We here are all lucky that way, even though it hurts so much now.  If the time comes, we will be here to help you keep breathing as you begin a long, unwelcome journey; if he is able to come home again, do not waste one moment on anything other than just being together and loving each other.

[Jttalways]

20 minutes ago, foreverhis said:

Our loves often feel they are the ones who failed us.  In fact, I had to give my love a mantra early on in his cancer journey because he kept apologizing to me for "getting so sick."  I would remind him to say, "None of this is my fault" because none of it was his fault.

Reading this broke me. My husband also apologized many times. You know, the divorce rate for couples dealing with a serious illness is high. Like you, I spent endless hours and nights in a hospital recliner, fortunately the one I had was comfortable. I will never understand how someone can leave their partner when they need them the most. 

[KayC]

My counselor said we need to throw the "shoulds" away."  Easier said than done, I know, it helps to be dismissive every time we find ourselves uttering a "should" to ourselves, even if only in our minds.

[foreverhis]

On 10/5/2019 at 12:13 PM, Jttalways said:

Reading this broke me. My husband also apologized many times. You know, the divorce rate for couples dealing with a serious illness is high. Like you, I spent endless hours and nights in a hospital recliner, fortunately the one I had was comfortable. I will never understand how someone can leave their partner when they need them the most. 

I'm so glad you had a comfortable recliner!  During the day when I'd just be near him and kind of hang out in the recliner, it was fine.  But I'm a side-stomach sleeper and not every recliner was the same.  Plus, many times they'd need them early morning for the hospital's infusion center, so they'd wake me at 5:30 or so and I'd have to move over to two chairs facing each other by the window.  But I do not resent or regret one minute of it.  I'd do it again in an instant.  Still, there were afternoons I'd drive home to take care of whatever, pay the bills, take a shower, eat an actual meal, etc., but instead collapse into a sneak attack nap for 2 or 3 hours of that time.  Exhaustion is a nasty companion who sometimes won't be denied.

I too do not understand and cannot respect people who bail when life gets difficult.  I know there are times when a couple was in the middle of splitting up.  Then it's not reasonable or fair to expect/demand a spouse to stay instead.  But "fair weather" spouses make me angry.  It's not "in sickness and in health...unless my spouse is the one who gets sick."  Those are not vows to take lightly or only follow when things are going well.  Disgusting, just disgusting the way some people behave.

[KayC]

I find that hard to understand too, it could never enter my head to leave him for anything!  We were partners, through and through.

I am watching my daughter going through the loss of her husband only minus the divorce...he is dating and taking a job where he'll be traveling all the time...he left the marriage years ago and she's there alone with the pain.  No, I don't get people.  Not at all.  I've offered to pay for a divorce when she is ready, right now she is stuck in her pain.

[fzald]

Imminent death is one of the hardest things to live through for the bystanders. My closest childhood friend fought a hard fight against cancer for 4 years, which eventually took his life when he was 22. I felt so helpless knowing he was suffering so much and that neither I nor his girlfriend could do anything to help. 

The best thing I can say is to make sure you don't waste whatever time you have. Even if he's stuck in a hospital or nursing home or whatever, make the most of it. Spend as much time as you can afford to together. Talk as much as you can. Say the things you might have been hesitant to say normally. 

For the dying, it's a bittersweet gift to die suddenly and not have any clue it's coming. You never have to worry for those you'll leave behind, you never have to fear death or experience pain. You get to just slip away quietly and quickly. My GF died this way, and for her, it's a blessing. She never had to suffer through intense medical treatments that left her looking disheveled and barely clinging to life. She never had to worry about what to say or how to say it. But for those she left behind, it was torturous. We weren't prepared and had no way to be prepared. The grief came out of nowhere, slamming into us hard. Ironically, if someone dies slowly, it's almost a bit of a gift to the survivors, because you have the chance to say those last words, do those last things, make the absolute most of the little bit of life that's left. Honestly, that's the best thing we can do for someone who is dying slowly - not just for ourselves, but for them.