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!
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.
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.
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.
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.
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.
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 ♡