My husband's wish is to die his way. But it isn't fair to me.

Have you told him that his care is wearing you out, both physically and emotionally? Try to get him to see that YOU need help and that the only way to get it is for you to have a clear prognosis. If he is eligible for Hospice he won't have to accept treatment but there will be a support system in place for both of you.

Call a hospice organisation.

Here is why you should.

#1 Hospice will not even attempt to make your husband accept any treatment he does not want. They will completely respect his wishes. Honest. I promise you (or, rather, you can promise him).

#2 They will be able to relieve symptoms that are causing him needless pain or distress.

#3 They will support YOU as his primary caregiver. And your husband has no right to say there's no need for that, at least.

I understand his fear of being pushed into things he doesn't want, and his being sick of treatments, and all of that. But you can tell him he's a fool if he won't accept help from people who are genuinely on his side.

And you don't need his permission to call for advice. Would your doctor be able to put you in touch with the right services?

Hugs to you. I'm so sorry for what you're going through. We're here whenever you want to vent.

I'm with CM: click on the "find care" button at the top of this page. Hospice is the level of care you're looking at; you'll put in your zip code and you'll get a list.

Start calling today until you find one who will send someone out to see him. Don't ask his permission; just do this. It's for you.

Please continue with Caregiver Support Groups, this will help you understand you are not alone in this battle. Your Husband's decision is his to make & his alone. We might not agree with or like it but it is up to each individual. Especially when his mind is sound. When people are fighting health problems like your Husband they reach a breaking point with Health Care. One reaches the point where they are sick & tired of being poked & praded by Medical People. The medication add all sorts of other issues. I believe one gets to a point they know there time is near & they just want to die in peace. Enjoy being alert & around loved one is very important. It's a more quality of life then being in a daze due to medications.

For you, please start reliving your life. Do things for yourself. This is your time to begin the process of moving ahead alone. The time you have with him left make it the best quality time as possible. These are very hard choices to make I understand that but you need to start moving forward for yourself. Accept his choice & move forward.

I will keep you in my thoughts as I know this is very distressing for you.

My mother refused treatment the last 6 months of her life for a blood cancer (never diagnosed). Her doctor looked at her last round of bloodwork and told her "You either check yourself into the hospital today or I'm sending hospice to your house tomorrow." My mother did nothing, and hospice showed up. They explained to her that she wouldn't have to have any more bloodwork, dr. visits, or treatment, and that if she had pain or other issues they would come to her home to take care of her. So that's how she spent her last two months of life.

Hospice is the way to go here, as Barb and others have said. If he has Medicare Advantage, you will need to find a hospice that's affiliated with his plan. Also you may need his doctor to sign off on it. The one who diagnosed his cancer moving to the bone would likely agree to sign off on it.

He will probably have pain if he has cancer in his bones. He will need morphine or some other strong medicine. Hospice will prescribe that for him. You and he both need this.

Yes, I have told him, but it is what it is. This is his choice. And I do understand that as well. But even though it's his choice to die without help, is it fair to me for him to keep me wondering how long he has to live. I have a plan for my future, but I can't put that plan in play until I have a time-line of some sort.

As far as Hospice is concerned, there has to be proof someone is dying, right? My husband doesn't see a doctor anymore, so I have no proof he is dying except for what I see and know from when the doctors did see him.

This is my problem that I face everyday. Is my husband dying? I think so, but where along in the process is he? A few months? 6 months? Another year perhaps? This is what I'm talking about. I DON'T KNOW !!!!

Don't you have to have doctors recommendation that he now needs Hospice care in order for his insurance to cover it?

He won't allow anyone to come in and see him...PERIOD. I have had a Home Health Nurse want to see him and he refused.

I've posted before and didn't want to bring this up again, but my husband is a Narcissist and severely paranoid. He believes doctors are trying to kill him. He believes that doctors murdered his first wife. So I deal with mental issues as well as physical issues.

I feel resentment about him not seeing a doctor to see where he is in life, because I have applied for a Senior Citizen Apartments two years ago, thinking my husband didn't have very long to live. I can't afford to stay in this house once my husband passes away. But he refuses to move, and therefore I had to turn down the apartments when they came available because I couldn't move at that time. You are only allowed to turn an apartment down three times before they remove you from the list. I have been removed.

Today, this morning, I found a cute and cozy, mobile home in a Senior Citizen Mobile Home Community, close to where I live now. A place I've had my eye on for a long time, the price is right, and I would give anything to buy this home.

But I can't. I would need his income in order to buy this home in order for me to sell our current home. So I have to pass it buy. He will never consent to move.

I see so many possibilities for my future passing me by, because he refuses to plan for my future. And if a doctor told me he had another year to live or two, then I could deal with that. I think a person can deal with anything if they have some type of time line to go by.

But not knowing whether he has few months to live or 2 years to live, makes it impossible for me to really have any tangible plans for my future. And, I feel resentment and I feel betrayed because I wished I was married to a normal person who believed in doctors, even if he didn't believe in medicines. At least married to someone who cared about me and my future. But that has never been the case with us.

Nancy178

Your husband's diagnosis of metastatic cancer should enough for him to be admitted to hospice. Please call hospice and request they come and evaluate him. They will provide support for both of you during this time. They have nurses, CNA's, clergy, social workers etc. available at all times. AND(this is the big one) they will be able to keep him free from pain and also to help him die with dignity, the way he wants to. God Bless and be with the both of you!!

Call hospice, they will respect his wishes on dying and give you much needed support in his daily care and if I’m not mistaken they have support groups that can help you get through your resentment and grief.

I am surprised with all that is wrong with him that he hasn't passed. He has had cancer since 2015 I would have thought by now it has spread all over his body.

He has to be in pain. Maybe he will welcome Hospice because he will get medication for that.

So sorry ur going thru this.

Your husband needs hospice so that he can die and you need it so you can live. It is his right to not want to continue his suffering and to prolong his life. Hospice helps with quality of life.

First, I am sorry for what you are going through.

My DH is the same way. He has "walked up to death's door" six, count 'em SIX times, and all 6 were incredible stressful on ME, but until the last straw--two heart attacks in 2 weeks--he never thought HIS health affected ME. After all, mine doesn't affect him. If I don't feel well, or worse, am in serious need, he leaves me completely alone.

I have cared for him through HepC, Liver Cancer, Liver Transplant, post op full-system sepsis, a stroke, 84 weeks of a brutal chemotherapy, an horrific motorcycle crash and then the 2 H/a's. NOW he sort of gets it.

Hospice is a great starting point. Sadly, it sounds as if he has given up and is dying, and if he will not even see a Dr to determine his baseline health at this point, there's not much you can do.

In his defense, he is probably very depressed by all this and isn't communicating any of this to you, either out of sheer obliviousness, or fear.

Our Hospice group were wonderful when daddy was dying. They were there for us, emotionally and physically.

I know you want to move forward, but buying a new place at this time may not be the wisest choice. Have you even asked him about it? Moving is very stressful and if he is nearing the end, he deserves quiet and peace.

Good Luck.

Update:

He finally admitted to me that something is wrong and has agreed to go to the Emergency Room in the morning, first thing.

I wanted to take him tonight, but he said no, but will go tomorrow morning.

Thank you all for your support. Your understanding. And I am so relieved that he will be getting help tomorrow morning for sure.

It will be hard sleeping tonight.

I am sure they will admit him to the hospital tomorrow for observation and treatment and tests, and he is okay with that too. So, he must be in bad shape.

Thanks again everyone!

Nancy

I hope he doesn't change his mind by morning and that this is the step that gets both of you the help you need. ((hugs))

Nancy ((((hugs)))). While you're at the hospital, request to talk to a social worker. You need an ally, and someone who can hook you up with help at home, or hospice.

Is "tomorrow" Saturday?
Can you go today, when staff will be able to help? Weekends are iffy......

Good luck Nancy, my heart goes out to you during this very stressful time. Hopefully they will admit him, establish his baseline and give you options going forward with either outpatient Hospice or in home, depending on if you feel you are up to it, as even home Hospice is a lot of work for one person, unless you have a lot of help from family members and friends, especially as the end draws near, I know, I have been through it at home with 2 dying parents, so be sure to let them know that you are on your own at home.

IIt is the moving and toileting of a bedridden patient that takes it's toll on the caregiver, so if you do decide to care for him at home, hopefully you can have caregivers in to help you, and to give you some much needed rest. Take Care!

I haven't read the responses, so forgive me if this is obsolete due to updates.

No one can tell you how long anyone has to live in these circumstances.

That he is dying is obvious but you will only know when, when he is actively taking his last breathes and that could go on for days.

I'm sorry that you need an answer to this, I'm afraid you will only be disappointed.

Nancy,
Ask the doctors at the emergency room to have your dH evaluated for "Palliative Care" or "Hospice".
1) He chooses to die (live) this way.
2) The care he requires at this point is too much for anyone, 24/7, and you are burnt out, understandably.
3) It is okay to go without medication and choose to die refusing treatment.
Palliative care providers can send help, either at home or in a hospice facility.

Just a comment, in case he refuses to go to the hospital. You can call Hospice and ask for a pre-admission consult, without a doctor's order. They will answer a multitude of questions for both of you. I think he would still need to see a doctor, to diagnose him and order Hospice or Palliative Care, but they will help your husband understand that his wishes will be followed. Bless you both.

Nancy,
Your situation is a very sad rough one, I truly feel for you.I know you are emotionally drained. I know it feels so unfair to you, and it is. But, since you cannot change his thoughts, just love him the best that you can. For it will soon be over and you will regret these feelings, unfortunately. So, pray, pray for strength and courage to see it through.
I will be praying for you.

Hugs, Nancy. Let us know how it's going when you have a moment. Thinking of you.

(((((hugs)))))) and strength to you, Nancy. I hope this morning brings you answers to your questions and relief from your anxiety!

Nancy; so how are things going?

Update:

We left at 5:30 this morning to the Emergency Room. He was diagnosed with Acute Congestive Heart Failure. Lots of tests were done on him, and they admitted him to the Hospital.

After my husband was settled in his room the doctor showed up with the test results of some of the tests he did and said that my husbands lungs were filled with fluid, (just as I expected). The doctor tried to listen to his heart and lungs and threw his hands in the air and said, your lungs are so full of fluid I can't even hear your lungs. I get nothing. He said to me, see how large your husbands legs are, his lungs are filled with that much fluid as those legs. It is like he is trying to breathe underwater.

The doctors knew that my husband stopped seeing doctors and taking medicines and this doctor told John that they will be giving him injections twice a day to reduce the fluid, and that they will be giving him medication while he is in the hospital. Giving John the option to walk out now or take the medication, and John did say he was okay was taking the medicine.

The doctor told me that he would be in the hospital for a several days. That they wouldn't release him until all the fluid was gone and his heart was stable.

They have an Ultra Sound schedule for tomorrow and some other tests for his heart and want to see what his Ejection Fraction is now because the fluid and going without medication has damaged his heart even further than it was.

The ER Nurse told John that "It might have felt good to you to stop taking your meds, but unfortunately it has caught up with you !!!

The doctor told him that now he will be left with a breathing problem but they can make him comfortable for whatever time he has left, if he takes his meds. And John agreed.

But, why do I feel that he will not listen and do his own things once he feels better. He already is feeling better this afternoon, and wouldn't relax and keep his feet above the bed. He kept sitting on the bed with his feet dangling over it. The nurse keeps telling him to keep those feet elevated. Sigh, but he does what he wants to do.

The doctor and a few other doctors in the room when he tried to exam John lungs. And when the doctor threw up his hands and was frustrated that John would allow himself to almost drown himself in his own fluid, the others doctors looked at me with compassion.

They told me you did all you could. And all they can do is take care of him in the hospital and once he leaves, there nothing they can do.

Thank you all for your prayers. I am happy today to have at least saved my husbands life again. In 2014 when he first had his heart attack and today. Maybe that is my mission in life was to save John's life.

And, at least I know that if John doesn't care about his life, or is in such denial that he won't live forever, then I know, that is time is limited, and it could have been prevented if he had only listened to his doctors but also to me. Many times I tried to tell him he wasn't well. That he needed to see a doctor. That he was dying. But he never believed me until he hurt himself. And now he has gone too far.

But at least I have answers. Tomorrow I will have more answers, and to me that gives me the incentive to stay the course. It rejuvenates me to not be so angry about John's denial and arrogance about his illness and not trusting me to know that he wasn't really well. I was angry because I've been kept in the dark because of his refusal to see doctors anymore. But now, I have some answers, and that's all the wanted.

I feel that it's going to be okay now.

Thank you for allowing me to reach out to you and talk about things that maybe I should have kept secret. My feeling, my emotions, my thoughts. But, I was in a limbo state. A dark pit of the what if's, and everyone on here who answered my pleas has helped me know that you felt the same way, and experienced the same feelings as me. Thank you!

Maybe just talk to him about hospice, comfort care, which has to be intitiated by a Dr. It sounds to me like your husband intended to spare you both a long drawn out medically contrived dying process and thought letting nature progress might have spared you that. Try to find some respect for that mindset, even though it may not be your way of doing things. Talk to him about using old and trusted medicines that can bring him comfort and ease anxieties so that you can find some peace in your last days together. My parents didn’t understand that hospice not only helps the patient medically, but they provide emotional and even spiritual support and comfort to the patient and caregivers. I wish my Dad had been able to benefit from it for more than a week—we waited too long out of our own fears. But, our last week was dignified bc of their help.

Nancy,  
I'm sorry that your Husband has Congestive Heart Failure. My Dad suffered from that for 5+ years before he died of a Heart Attack.  His lungs had become full of fibrous tissue in the lower lobes, so the last 2 years of his life he had to use his shoulder muscles to help get air into his upper lobes.  He was on oxygen 3-5 Liters to ease his breathing. Dad's legs were swollen to 3 times normal and when I pushed on his skin, there were indentations where my fingers had been (Indication of pitting edema).  It was difficult to watch him struggle to breathe those last couple of years.

Here are some websites that explain Congestive Heart Failure (Copy & Paste URL to your browser). I hope that you find them helpful.  Please keep us updated on your Husband's condition and on your feelings.  We are here to support you and your Husband.  {{{Hugs}}}

https://www.mayoclinic.org/diseases-conditions/heart-failure/symptoms-causes/syc-20373142

https://www.webmd.com/heart-disease/guide-heart-failure#1
https://www.medicinenet.com/congestive_heart_failure_chf_overview/article.htm#what_is_congestive_heart_failure_chf

Doctors usually classify patients' heart failure according to the severity of their symptoms and the most commonly used classification system is the New York Heart Association (NYHA) Functional Classification1. It places patients in one of four categories based on how much they are limited during physical activity.
https://www.heart.org/HEARTORG/Conditions/HeartFailure/AboutHeartFailure/Classes-of-Heart-Failure_UCM_306328_Article.jsp?appName=MobileApp

Nancy, have you been able to speak to a social worker at the hospital about what the plan will be, going forward?

As Countrymouse recommends, hospice is the way to go. Hospice is everything your want and likely everything your husband wants and nothing that your husband does not want. There is a big difference between treatment to make your body more comfortable and treatment designed to cure something. I have a lot of experience with this issue. I can't say it enough--hospice, hospice, hospice! Please get them now. Thank you for reaching out,as most people on this site are kind and want to help others. You have been through so much. I'm so glad your update has things going in a better direction. The social worker at the hospital can set up hospice for you. Please don't hesitate to seek help from others.

Nancy, please, when you get to the hospital tomorrow, ask the doctor or nursing staff to get you in to see someone in the social work department.

You need a plan in place BEFORE John is discharged home. He may be eligible to go to rehab to build up his strength. He may be hospice eligible now.

There are a great many resources available to you while John is in the hospital. You have an opportunity to rest and regain your physical health and get back on an even keel. Let the nursing staff take care of John.

You, take care of YOU!

Remember, talk to Social Work in the AM. Make a good plan NOW.

Nancy, first of all. If you hadn't been courageous about this and got your DH to see someone fast... don't want to be melodramatic, but he might not be talking to anybody ever again. You have been brave and you should give yourself the credit, is all I mean.

Next. You will do him more good if you are fit. Make taking sensible care of yourself your absolute priority, especially while he is in such safe hands. Sleep through, eat properly, and I shouldn't, myself, think you have to be at his bedside for so many hours each day. You want to be there for ward rounds/consults, and maybe it would be nice to help him with his lunch? But sitting there and feeling frustrated because he won't stop talking and rest isn't helpful to either of you.

His EF is low, but hearts can tick over at that rate for a long time; and now that the related symptoms are under control as long as he takes things gently it shouldn't make him too miserable either. By the way, some meds can cause irritation to the microscopic hair cells lining ear nose and throat passages - if he's hoarse, and also if he develops a dry, tickly cough, do mention it to his doctors because this part of his px could maybe be "tweaked." Also, the diuretics have removed many, many pounds of water from his system! You might even find it interesting to ask his doctor how much, roughly - the figure should impress on your husband what his body's just been through.

Barb is absolutely right about enlisting the social worker's help to make sure the discharge plan is properly set up in good time.

When it comes to the hospice discussion, the thing to remember is that hospice is not about preparing to die. It is about making the rest of a terminally ill person's life as good as possible. Don't be afraid of it. Don't let him be afraid of it.

Your own px today is a top quality hot chocolate with a side order of mini marshmallows :)

Any word from those children?