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KgsHubs Asked January 2023

How to deal with my husband's denial of his terminal prognosis. Looking for others' experiences in a similar situation?

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!

AlvaDeer Jan 2023
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.
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!
funkygrandma59 Jan 2023
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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Satori57 Feb 2023
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.

JoAnn29 Jan 2023
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.
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. 😓
Guestshopadmin Feb 2023
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.
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!
Grandma1954 Jan 2023
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.

JoAnn29 Jan 2023
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.

XenaJada Jan 2023
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.

NYDaughterInLaw Feb 2023
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.
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.
southiebella Feb 2023
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 ♡
againx100 Feb 2023
60? Yikes. So young but of course it happens.
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