Joanne Posted January 3, 2012 Share Posted January 3, 2012 Please guide, help, or encourage me. My DH's illness has changed everything. He's a 12 on the end stage liver disease. Consideration for a transplant starts at a 15. That means he is very sick, but not enough sick. He operates chronically at a level I used to take him to the hospital for. He is chronicallly slow, lethargic, confused. The level of confusion and degree of slow changes, but is always present to some degree. I often "have" to treat him like a much older person or a much younger person. Normal marital playfulness and intimacy is not available. It's hard to feel that way towards someone you have to interact with as if he were a child. There's all sorts of injustice/poor me/resentment mixed in, also. Has anyone here been through this or something similar? I realize many of us have aging parent issues, but it is different when it is your husband. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted January 3, 2012 Share Posted January 3, 2012 I'll send you a PM. Quote Link to comment Share on other sites More sharing options...
BridgeTea Posted January 3, 2012 Share Posted January 3, 2012 (((((Joanne)))) You are heard and loved. Quote Link to comment Share on other sites More sharing options...
momma aimee Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: :grouphug: :grouphug: :grouphug: I have a DF who's new born is in renial failure and waiting for the weight limit for transplant. I have no advice on dealing with it in an peer Look on your care for him as a gift of love, pray and Know God has a plan and a purpose Quote Link to comment Share on other sites More sharing options...
J-rap Posted January 3, 2012 Share Posted January 3, 2012 Going through the same. I'll PM you, too. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted January 3, 2012 Share Posted January 3, 2012 :grouphug::grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
QueenCat Posted January 3, 2012 Share Posted January 3, 2012 :grouphug:Joanne:grouphug:, Wish I had advice, can only offer hugs & prayers. Cathie Quote Link to comment Share on other sites More sharing options...
Impish Posted January 3, 2012 Share Posted January 3, 2012 Look for a caregiver support group. You'll find a myriad of folks who have walked the path you're on. Quote Link to comment Share on other sites More sharing options...
Myeightkiddies Posted January 3, 2012 Share Posted January 3, 2012 I don't have any helpful advice, but my heart goes out to you and your family. Praying for you all. :grouphug: Quote Link to comment Share on other sites More sharing options...
Laura in MI Posted January 3, 2012 Share Posted January 3, 2012 I don't have any helpful advice, but my heart goes out to you and your family. Praying for you all. :grouphug: :iagree: :grouphug: Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: There are no words for all that you have been through. I can imagine that the stress is overwhelming. :grouphug: Quote Link to comment Share on other sites More sharing options...
silliness7 Posted January 3, 2012 Share Posted January 3, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
*Inna* Posted January 3, 2012 Share Posted January 3, 2012 No advice, just :grouphug::grouphug::grouphug:. Quote Link to comment Share on other sites More sharing options...
Mergath Posted January 3, 2012 Share Posted January 3, 2012 I haven't faced that severity of illness, but for quite some time my dh had severe and untreated bipolar disorder and alcoholism, and I pretty much had to take care of him, almost as if he was another child. He wouldn't eat if I didn't force him, he wouldn't sleep, and his thought processes were completely out there. I had to balance saving him from himself (when he would, for example, try to take our rent money to spend on some ridiculous thing) with not constantly angering him. It was hard. All you can do, really, is to get through it. Try to remember the person you fell in love with, and tell yourself over and over that he's still in there, and he needs you. I had to constantly put myself in dh's place and try to imagine what it was like to be him, and that helped me to realize just how much emotional pain he was in, even if it was buried beneath layers of other stuff. Get as much sleep as you can. You need more than normal when you're going through something as difficult as this. When people offer you help, take it. Make time for yourself, however you have to do it, because it will keep you sane. And I agree that you should find a good caregiver support group. Just remember, love can get you through a lot. It won't be easy, and it's not going to be fun, but you're an amazingly strong person, and no matter what happens, you'll make it through. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
TracyR Posted January 3, 2012 Share Posted January 3, 2012 (edited) Being someone on the other end. I'm the one that has thyroid disease and most days are very difficult for me. My husband doesn't understand. So the best thing to do is to hug your husband, hold him and tell him you love him every chance you get. Even when he gets to liver transplant the surgery itself can be dangerous. So even though its hard , he is your husband and just love him. Be there for him as much as you can. He too has the poor me/why is this happening feeling too. Even if he doesn't tell you or isn't able to. Trust me. I go through it on a daily basis myself and then I try to pull myself up by the bootstraps. Its definitely no walk in the park for him either. Being young you don't ever plan on being sick with anything. You just want to enjoy life , enjoy your family and live life. No one ever says " I plan on being sick when I'm young." I can guarantee you that it bothers him just as much as it bothers you. No one every wants to be sick. The marital playfulness and intimacy are on hiatus for us too, because when your hormones are so out of whack you just don't have any of that. So I pray each day that once I get things figured out with myself that my husband will be ready and waiting. Your husband is thinking or praying for that too. He just wants what he did have. Just remember those days and that will get you through. I feel for my husband because all he wants is his wife back. He wants that 'normalcy' back, and I wish I could give that to him. Its not easy , it never is. But if you love your husband you'll just be there, and hopefully once he gets to transplant and survives that , that things will get better. Edited January 3, 2012 by TracyR Quote Link to comment Share on other sites More sharing options...
Pretty in Pink Posted January 3, 2012 Share Posted January 3, 2012 I am so sorry, Joanne. I can't imagine how hard things have been for both of you. I hope that the prayers and support that you receive here bring some measure of comfort. You are in my thoughts. :grouphug: Quote Link to comment Share on other sites More sharing options...
EKS Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
AuntieM Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Forget-Me-Not Posted January 3, 2012 Share Posted January 3, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
eternalknot Posted January 3, 2012 Share Posted January 3, 2012 (edited) :grouphug: My husband. The past few years have been a dance -- two steps forward, three steps back, one crazy mamba move to the right, then collapse to the floor and start again from the top. I have killer thighs, but my feet are blistered beyond recognition. I don't think there's a plan, it's just one blistered foot in front of the other. One day at a time. The Serenity Prayer. The usual suspects, you know? Finding joy in the small things, finding solace in the setting sun on bad days, and finding a safe place to let it all out without worry of being judged -- not just by others, but by yourself as well. There will be good days on the physical side, and things will look up; but to him, the good days don't represent hope - they represent what he can no longer do, simple actions he's taken for granted, dreams he can no longer fulfill as a husband and father. His inability to accept and move on has been harder to work through than his physical disabilities. I'm not sure if this is an issue for you, but I wasn't expecting it. It didn't manifest initially. Find a few supportive outlets, and USE THEM. Take care of you, make sure you're able to process your thoughts/worries/anger/sadness somewhere. WHen people ask how you are and how they can help, LET THEM KNOW. Don't put on a brave face for them. Give yourself permission to feel every feeling you have, and give yourself permission to release those feelings ... to God, to the Universe, just let them go. Scream into your pillow, release balloons, write and burn journal entries. Whatever works for you, do it; don't harbor that inside of you. Don't martyr yourself, it will lead to (worse) resentment. If you need a break, take one; if you need a manicure, get one; if you need anything, make it happen. Put on your oxygen mask first ... however ridiculous or extravagant it might be, call on your support system and get that re-charge you need. Don't be humble, ask for help. People want to but don't always know how to insist on it without offending or pushing. I didn't really believe that initially, nor did I want to be a burden. Mistake. :grouphug: Edited January 3, 2012 by eternalknot removed the TMI Quote Link to comment Share on other sites More sharing options...
LibraryLover Posted January 3, 2012 Share Posted January 3, 2012 (edited) I'm so sorry. I have two siblings (in law) who have been through this. It is gut-wrenching to watch, so I don't want to imagine what it would be to live through it. A third sibling (in law) is now caring for a young spouse with cancer. Life is so fragile. There aren't words for the pain. I often wonder when my time will come to deal with this, and I have spoken often with dh about what he might do if he has to experience this pain if I am the sick one. We're so mortal. :grouphug: Edited January 3, 2012 by LibraryLover Quote Link to comment Share on other sites More sharing options...
mlbuchina Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: No advice, but lots of prayer. Quote Link to comment Share on other sites More sharing options...
chickenpatty Posted January 3, 2012 Share Posted January 3, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted January 3, 2012 Share Posted January 3, 2012 (edited) :grouphug::grouphug::grouphug: My DH has nothing anywhere as serious as yours, My DH was involved in a work place accident that left him with serious health issues. He developed Multiple Chemical Sensitivities. This necessitated a complete change of our lives, he can no longer work. We had to extensively remodel our house to get rid of any triggers ( including ripping up floors building a special sleeping room that is mostly windows etc.), we now live a very isolated life to avoid exposure, we had a major falling out with our church ( who basically told us it was a test form God :glare::glare:). My husband has times when he is like a Zombie ( fortunately with all the major changes we have done to out life these are mostly a thing of the past). He can get extremely moody when he is having a bad reaction, etc. It has taken us 14 years to work out everything and adjust to our new life because of his illness. Not all of those years were smooth sailing. Edited January 3, 2012 by melissaL Quote Link to comment Share on other sites More sharing options...
Heather in Neverland Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: Similar but not the same... My dh broke his neck in a motorcycle accident 1.5 years ago. He is lucky to be alive and not paralyzed. But he has permanent damage and disability that he is not coping well with. He was an athlete and avid weight trainer. Very active lifestyle. Now there are very few things he is allowed to do because of his damaged vertebrae. Rather than a poor me attitude, he has chosen denial. So he continuously puts himself in situations that he has been forbidden by the doctor to ever be in lest he end up paralyzed for life. He says he can't "live in fear". That sounds noble but in actuality it is irresponsible. That's like a diabetic refusing to take their insulin because they don't want to be tied down with daily injections. So we argue about it and even when I win the argument, I lose because he holds it against me. "no honey, I do not think rock climbing or football are good activities for you to engage in this weekend since all it would take is one good shove and you are paralyzed forever." That makes me a nag who lives in fear? Whatever. So yeah, in some ways I get what you are saying. My easy-going dh is a lot more angry and depressed than he used to be. I think he should be grateful he is alive and we just can't seem to see eye to eye on this. :glare: . Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: Praying for you and your husband. :grouphug: Quote Link to comment Share on other sites More sharing options...
Negin Posted January 3, 2012 Share Posted January 3, 2012 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
G5052 Posted January 3, 2012 Share Posted January 3, 2012 (edited) It is very difficult indeed. Behind that an ongoing eldercare crises brewed for five years as well. When she passed away in September, my first thought was -- whew, just one now! Apart from a very experienced therapist, I doubt that our marriage and my sanity would have survived. That and a handful of friends who "get" it. Most don't, and I've had to develop a thick skin around some people. Edited January 3, 2012 by GVA Quote Link to comment Share on other sites More sharing options...
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