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A few months ago my husband was diagnosed with End Stage Heart Failure, Kidney Failure, and Liver Failure (Fatty Liver Cirrhosis) Cardio Hepatorenal Syndrome - He is being treated by 5 different doctors who all have been unable to give us any hope for long-term survival. He isn't a candidate for a transplant because his Heart is at 30%, his kidneys are at stage 4 (GFR 13) (his nephrologist is trying to keep him off of dialysis), and the decompensated cirrhosis is end-stage - Meld Score 25 as well. The heart doc is waiting for the kidneys to improve so they can do an angiogram/angioplasty to try to fix the heart issue - the kidney doctor is waiting for the heart to get better, and the liver doctor is also waiting on the heart to get better. The heart is not improving. Every day I'm watching my husband decline. He's been hospitalized 3 times already - almost again yesterday. He has ascites, hepatic encephalopathy, muscle wasting, He sleeps most of the day and his night sleep is erratic - can't sleep so he's up all night crying - depressed. He hardly wants to eat any longer because of the ammonia - he can't taste food well any longer. He's on a very restricted diet. He's just a bag of bones with a big belly from the ascites. He's had a paracentesis drain done just two weeks ago and it's back and he's miserable. I'll have to call tomorrow to try to get him in to have the paracentesis done again ASAP! And so much more - I don't want to go on & on - those that have experienced this know what I'm trying to say. Yet with all this, my husband refuses to believe he's dying (and rightly so - he's only 68) I support him in this and don't bring up the subject. His doctor had him sign a POLST form with end-of-life instructions - he wanted to fire the doctor after that. I was able to get him to do an AHCD - so at least I can help with medical decisions if need be. My husband wants to LIVE! So I'm trying to be as supportive of that as possible. He was placed on pallative care a couple of weeks ago. They came and talked to us and took his blood pressure and see him in a couple of weeks - ??? How is that helping? How have any of you coped with this? I'm the type that needs to know what's happening and deal with it head-on. He's not - he will remain in denial until the very end - I know him. His three adult daughters haven't even been by to see him - they Text him to see how he's doing. They're busy working and with life - another story entirely!

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KgsHubs, I feel for you so much and completely understand that "need to know". My mother passed away in January this year. From September until her death was the most difficult time in our lives (hers and mine). She was in denial to the end, so I was not able to plan with her. Anything that I did that even hinted at planning for what I needed to do after she died, I kept hidden from her.

I was so desperate to understand how to care for her, how to care for myself, and how to plan for what was coming. Every single night when I went to bed, I would scour the Internet for information, look for forums like this where I could reach out, and I attempted to sign up for support groups (that I never had the time to actually attend).

She finally consented to hospice care her last week of life, but she was still much in denial. Her denial made things more difficult for me, but it helped her get through it, which is what is most important.

Looking back, I did several times try to nudge her to face what was coming, so that she and I could talk about her wishes, but she stubbornly refused.

Now, a month after her death, I am taking care of business and am glad that I didn't push her anymore. I feel so much guilt for the things that I did and did not do along the way, but I also know that I did the best that I could with the information that I had. She needed to deal with it in that way.

I miss her terribly. I am now going to reach out and actually attend a support group.

I wish you peace and love in this journey, KgsHubs.
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KgsHubs Feb 2023
Thank you for sharing! I wish you peace as well. We're still living day to day - he's now on dialysis (which his doctor warned will just prolong the inevitable) but my Hubs insisted - it is what it is - With the support of this group - I made the decision to just go with the flow and be supportive of his wishes - He's slowly but surely realizing that he's not getting better but weaker and weaker as the days go on! I do my best to keep him going - My poor Hubs - But I wanted to thank you for your post - it help me see myself as well. I do wish you much peace!
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As an RN, here is my "2 bits":
Talk to the rest of the family about his current medical condition. You didn't sugar-coat the reality of his medical issues in this post; don't sugar-coat it for the family either. Let them know that he is not expected to recover and you don't know how long he has (all true). Encourage visits and phone calls. He will experience confusion with the high ammonia levels and be very irritable. Eventually, he will slip into a coma and pass away. Comfort care is the highest priority right now for him.

Every person experiencing "loss" goes through 5 stages of loss. This may help is understanding your husband's current mental/emotional state.
Stage 1 - Denial - can not accept the truth of the loss. Your husband is in this stage.
Stage 2 - Anger - mad at everybody and everything. Sees this "loss" as unfair.
Stage 3 - Bargaining - unrealistic and ineffective efforts to "regain normal". Do not let him talk you into weird medical treatments that will only cost too much and not deliver.
Stage 4 - Depression - sadness and grieving when realize/accept the truth of the "loss" as permanent.
Stage 5 - Acceptance - finding a place of peace about the loss and finding ways to live with it.
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KgsHubs Feb 2023
Thank you! I have informed the family of everything - They are all well informed - And I did let his daughters know they needed to visit him now if they wanted to see him alive - at least call or text (I did not sugar coat that in the least bit) they have come around now - They say they're all afraid of seeing him like this - but I told them that this might be their last chance - Don't leave yourselves with regret. So they are calling and will be visiting (I hope soon) One of the 3 has already come to see him - lifted his spirits! I just brought him home from the hospital (again) the day before yesterday! This time I told his girls they need to come and help me - I need their help. My Sons have been over helping often - And luckily my 27 yr old grandson is here to help me as well. We have Palliative care, home health care, and PT coming soon - as well as he started dialysis today - his kidneys are down to GFR 10 now - His doctor did tell him that dialysis was basically life support and would just prolong his illness and lessen his quality of life but my husband insisted on the dialysis so he had 3 sessions in hospital and the first outpatient session was today - He's weaker than weak - in a wheelchair - can hardly walk on his own - just sleeps all day and restless all night! My poor Hubs. I'm doing the best I can to keep him comfortable. That's all I can do now! Thank you for your input! I appreciate it.
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Why do you need his acceptance that he is dying? Just support what you need to do and stop trying to get him to accept the diagnoses. It sounds like he will not be alive much longer. He should be on hospice but he would have to stop going to his doctors.
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KgsHubs Feb 2023
I don't need his acceptance of all this as much as he does. It's more that I'd like to see him end his life in a more peaceful way. Not happening. He's refusing Hospice at this time.
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KgsHubs: Contact hospice immediately for your DH (Dear Husband). Hugs sent for this most difficult of times.
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KgsHubs Feb 2023
He's refusing hospice at this time. :(
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Hospice Care, is about
" living" and a " high quality of life for the patient" AND family support services. Honestly, I highly recommend that you speak with a hospice of your choice to share all of this and, get support and guidance from them towards having your husband agree ( if he is still making decisions) to go on hospice care; since you share that " none of the doctors have given any hope for improvement, shame on them for not referring you to hospice. Hospice will be glad to come to you and provide information; they may assist you with getting an order from one of husbands five doctors or PCP to
" have hospice evaluation completed for hospice admit appropriateness and admit if appropriate". Your husband definitely sounds appropriate.
You, your husband and family can decide then whether to admit to hospice. If your husband were to somehow improve to a point that he was not hospice appropriate,hospice will definitely tell you. Hospice is about living not dying.
Please help yourself, family and husband by getting the process started. They will provide interdisciplinary services who can work with your husband's emotional, spiritual needs as well as physical. And, they will provide support FOR YOU!

Best regards
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KgsHubs Feb 2023
I have spoken with them and they've spoken with Him. He's refused their help. I can't force him. But I agree with you 100% So we have palliative care and home health care for now! My husband is speaking with his therapist once per week now - so I'm hoping this helps him find peace.
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I'm so sorry that hubby is having such serious life threatening issues. I'm glad that you are coming to terms with it. It's OK for hubby to remain in denial. Just let him have his journey his way.

But do get a hospice eval. I love the idea of strict instructions for hospice to never be mentioned to him. Keep reminding them. If someone slips, tell a little lie and say that you don't know why they said that, etc.

Do you have a relationship with his children? Are they yours too or steps? Either way, I think you have to go behind his back and talk to them about the situation, his denial, etc. Tell them you honestly do not know how long he has but you thought they should know in case they would like to come visit him. Unless you think he would NOT want them to visit. For example, I have a sister that is estranged from the family for decades. Having her come visit our mom when she is dying is NOT on the list of things I will be doing. I will bar her from visiting. And from the funeral. But that's just petty me. It would be upsetting to my mom so I will not let her know ANYTHING.

Best of luck.
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I am a nurse, and I just recently had the experience of my brother dying of hepatorenal syndrome. I believe from your statement that you know he is dying and he is in denial and really there is nothing you can do about that. Your focus right now is to help him be as comfortable as possible and one way is to ask if he is a candidate for a drain placement for the ascites. You can be trained how to do this as needed at home and this will make him more comfortable if he doesn't have such a build up of fluid. He can be drained everyday. He might not be a candidate for placement because of his heart though(he would have to be under general anesthesia) but you can ask about the possibility. That he is on palliative care gives meaning to the fact that he has little time left. As liver enzymes build up and can't be cleared he will eventually go into a coma and death follows quickly. He doesn't want to hear that but if you know what is coming you will be better able to cope. I'm sure you want your children to see him so all I can say is to blunt and frank with them and ask them to make the effort to see him before he loses consciousness. That is all you can do and then the ball is in their court to act as they see fit. They will have to live with their choices. Your husband has not gone through all the stages of dying, he is stuck in denial and it will take all of your support to be there for him. I don't know if any of this will help you but I too have a need for straight on answers in order for me to handle circumstances such as you described. I hope he doesn't suffer too long, and that you can find peace in some way too. The most difficult part is the waiting for the loss you know is coming.
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KgsHubs Feb 2023
Thank you! Yes, I have inquired about the ascites drain but unfortunately, he's not a candidate right now for that due to his heart condition. He is on dialysis and they had to use a local to put a perm cath in him - they can't put the fistula because of his heart as well. He insisted on dialysis against his doctor's recommendations. And I let the girls know they need to get here to see him. He's beginning to ask me if he's dying - and it breaks my heart. He knows he's dying he can feel it. I feel so bad for my Hubs. I don't want him to suffer anymore. :(
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There is no simple answer. You cannot change his attitude. What is now important is that you take care of yourself. Find a little time to divert your attention away from his situation. e.g. Bible study class, lunch with the girls, play cards at the Senior Center, etc. Good luck.
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The Similar situation
If your husband cancer diagnosis is not only hard for you to accept, but is also a challenge for your friends and family. Sometimes they don’t respond the way you expect or refuse to accept that you’re sick. It’s extra emotionally trying when you have loved ones who deny your diagnosis.
Cancer denial comes in many forms. It can be downplaying the severity of your disease or outright refusing to recognize your diagnosis. If you have loved ones living in denial, it’s difficult for you, but rest assured. It’s often a short-term way of coping with their own shock and fear.
Matilda
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lealonnie1 Feb 2023
How on earth do you get 'cancer' as this OPs HUSBAND'S diagnosis??
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My husband refused Hospice care until the last two weeks of his life. He was finally convinced when they approached him with "your wife needs the help" and he accepted on my behalf.
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KgsHubs Feb 2023
I do need help - He can hardly hold himself up any longer - He still weighs 180lbs 5'10" tall and he's dead weight when his BP takes a nose dive! So ye, I do need help! It's not only dangerous for him but for me. I'm a strong woman but not that strong! I do have my 27yr old Grandson here helping but he works full time so I'm home alone with him all day. for now, he sleeps a lot but helping him bathe is becoming impossible. Time for sponge bathing! That's a good approach though - he may finally agree to help me out.
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I'm sorry for your situation. I've been through the same thing with my twin brother and remotely with my ex-husband. Both passed away at 60 years old.

If I were you, I would get on the phone today with your palliative organization and ask to have him switched over to Hospice - you need support!

I know it's heartbreaking. Blessings ♡
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againx100 Feb 2023
60? Yikes. So young but of course it happens.
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It's perfectly OK if he needs to be in denial about it. If that's how he copes with his mortality, fine. If it keeps him calm and peaceful for his last days, please allow that. My mother is the the same way. She's in congestive heart failure, her heart is only functioning at 30%. She keeps saying, "I don't believe them" (doctors). "When I get better, I'll show them." Problem is, she's not doing one thing to get better. It is so difficult to know the right thing but it is always the most compassionate, loving thing. It's not like by knowing it would help his transition.
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Your husband signed a POLST. That suggests that, deep down, he understands that there is no treatment for him. Your husband needs hospice. He needs morphine for when the ascites gets so bad that his breathing becomes labored.

There is a huge shortage of professional healthcare staff including palliative care. And palliative care is not intended to be used in lieu of hospice. When palliative care doctors see a patient such as your husband, someone who is dying and approaching end of life, they discuss the limitations of pain management with the treatment team and recommend hospice.

Although there is no "hope for long-term survival", there is hope for your husband to have a good death. Hospice can make that happen for him and, by extension, for you and also his daughters. Hospice reduces suffering - physical suffering, mental suffering, emotional suffering, and spiritual suffering.

And perhaps if you are honest with your husband that it's time for hospice, he may accept hospice. He may be angry with you at first that you've given up on him living yet it's the kindest and most loving thing you can do to help him accept dying.
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AgentBill Feb 2023
A good death? Never heard that except in sci-fi stories. In the end it does not matter. Death is the end.
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My friend had end stage fatty liver disease, and she was in denial til literally the last few days. Liver doctor can install a port/drain for comfort care that would lessen need to go to doc office for paracentesis so often. How blunt do you want me to be? Get the daughters there. You are now at the point where you make arrangements behind the scene. Updated beneficiaries and POA ready to add to any account you are not on so that it’s easier for you. The toxins from liver and kidneys will cloud his thinking. Get support in place for you. I contacted a shared friend and said come now, whatever E is telling YOU, she is dying. Friend visited and told me how good E looked and I overreacted. E was gone in 2 weeks, arguing with me 2 days before her last day that there was something doctors could do, that she wanted to LIVE. Will does not trump multiple organ failure. Palliative care may not give same access to resources that hospice does. E agreed when we told her the system would be giving her free stuff to help us.
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KgsHubs Feb 2023
Yes, I agree - I've been blunt with the girls - and we do have the POA, POLST, and ACHD in place - but he's still able to speak for himself. So, I just make him as comfortable as I can until he's ready. We spoke to his cardiologist about the port but he says my husband can't be put under - he wouldn't make it off the table. I've taken care of pretty much all I can at this point - I just need to get more help in here to help with him physically with bathing, etc. Thank you for the comment!
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your husband is in multi organ failure. I am sure you have heard that the outlook does not look good as far as quality of life. However, your husband is calling the shots while he is in still in the denying phase. The best you can do is wait it out until he no longer is conscious and then make the decision for him. Have you ever asked for counseling for grief and anxiety. If he is active in palliative care, you can request the service.
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KgsHubs Feb 2023
Yep, exactly - he's still calling the shots. And actually no, I haven't asked for counseling support as of yet. Good one!
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You know its such a shame he is in so much denial. It would be so much better for you and him if he excepted it and lived each day as a blessing. His crossing over would be so much easier. If he has any kind of faith, maybe it would help if he talked to a minister.
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KgsHubs Feb 2023
Yes, I agree. My husband is a spiritual man, however, we’ve had a wonderful life together these past 16 years - a month spent in Maui each year - any many many wonderful other life moments together- we’re best friends. He just doesn’t want to leave me & his life we have made together. He keeps saying “this wasn’t supposed to happen”. It’s extremely sad for him and for me to try to help him make sense of it all. 😓
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I'd contact hospice. As others have said, don't call it hospice and be sure THEY do not use the H word whenever they come to evaluate your husband.
Do a little research and see if there are more than one in your area and which one gets the best reviews. They are NOT all the same. My aunt was briefly on one that was pretty unresponsive whenever she attempted to contact them.

I'm so sorry you are both going through this. 68 is young.
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So sorry you are dealing with this. Like said you can step it up to Hospice and he would not be the wiser. Since you mention "big belly" I will assume you know what that means. The doctors cannot do anything now. This is the last stage of the desease. With all your husbands other problems he probably isn't a candidate for dialysis. Your chikdren need to come see their father. For him and for you. You don't ask, you tell.
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Your husband is dying and whether or not he accepts that fact is irrelevant at this point.
My husband too fought dying until he could no longer.
I would step up his palliative care to full hospice care and not let him know. They will supply any and all needed equipment, supplies and medications, along with a nurse coming once a week to start and aides coming to bathe him at least twice a week. And all of it will be covered 100% under your husbands Medicare.
Plus they will have a social worker and clergy for you to be able to talk to which may help you on this journey.
And you can ask them not to mention the word hospice when they come to your home. My husband was under hospice care in our home for the last 22 months of his life and I don't think he fully understood what hospice really was. He died young at just 72 years old.
And years ago when I volunteered for hospice, I had a 101 year old patient who was blind and who's family ask that I not mention that I was with hospice. So when I would enter her room, I would just say my name and that I was from Community Home Care, and would leave off "and Hospice."
I'm like you in that I too want to know exactly what is going on so I can deal with it head on, but not everyone is like that.
I hope you can find a good local caregivers support group that you can go to in person or on Zoom, as I found mine so very helpful when I was at my wits end. You must remember that you too matter in this equation, and you must take care of yourself.
I'm praying that God will give you the strength you need to endure the days, weeks and months ahead.
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PLEASE contact the Hospice of your choice.
Any one of the doctors that you have been seeing would sign off on a Hospice referral.
You and he would get the emotional support you need from your Hospice Team. you would get the supplies and equipment that you need to care for him safely.
I am very surprised that Palliative has not suggested Hospice rather than Palliative.
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You have given us a full rundown of what is a dying man. I am so incredibly sorry, as he is beset by an onslaught in every single system crucial to life. His doctors have been honest with him.
Not everyone comes to acceptance, and what you need to do now is accept that he is NOT going to accept that he is dying, and likely this will remain to his last breath. He is angry and depressed as well as ill beyond what we, the well, can begin to comprehend. There is no necessity of accepting. There is NO NECESSITY that he ACCEPT dying. So just let that go. What would be the reason for him to accept at this point, and what difference would it make.
Allow him to make what decisions he can make for himself. He has lost control of his body; he fears his future. Support him in his decisions and encourage he discuss them with the doctors. You will have the power to give him rest and peach we he can no longer act for himself, and when he is suffering, and you will do that when the time comes.
You must be feeling so very helpless. It is a time of cruel uncertainty for you. I know that you want peace for him, and that you likely believe that his acceptance will help him, but it may not.
If your husband has no relationship with his adult children then, as you say, that is a long story, one that will not have a happy ending with visits to witness his torment now. That is all water under the bridge and nothing will change it.
I am so sorry. Were your husband on Hospice he would have easier access to the "good drugs". But while he has no acceptance I doubt he will accept hospice. You can TRY by fudging the truth, and that's what I would do. Let him know he can have extra help, care, drugs, support by asking for a Hospice consult and let him know that these days people kind of use it to get more care paid for by the feds (hee hee). You would need to talk with Hospice before interview to let them know you did the fudging, but it may be worth a try.
I know you will have let the daughter's know the doctor's prognoses here, and that if they wish to visit at all, it likely should be now. But that is up to them, really.
Again, this is a dreadfully sad and helpless time for you. I am so sorry.
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KgsHubs Jan 2023
Thank you so much AlvaDeer - This helped me so much - just to hear it coming from outside of my own head - the floodgates of tears have been released - I needed this so much. Thank you beyond Thank yous! I will most certainly help him spend his last months or days with as much dignity and peace as humanly possible!
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