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!
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.
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.
" 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
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.
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
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 ♡
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.
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.
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.
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.