My husband is 84 years old.
In 2014 he had a widow maker heart attack and a stint was placed.
In 2015 he was diagnosed with Prostate Cancer Stage IV
In 2016 he had an Aortic Abdominal Aneurysm and had a stint placed.
In 2017 his prostate cancer moved to the bone
December of 2017 my husband stopped seeing doctors and he stopped taking all medications, against doctors orders. Since that time my husband has been on nothing, not even an aspirin, and no doctors at all.
After quitting all medications my husband seemed like a new man for awhile. He lost a lot of the weight he gained from the meds. His mind was clearing up and he felt great and looked great, UNTIL a few months ago.
He has lost all muscles in his arms, and legs and is nothing but a walking bone.
His eyes are sunken and he is often confused about things just as he was when he was on medications and the reason he stopped taking medications.
His legs are swollen so bad they look like elephant legs, the ankles were the first to explode and now it is the entire leg and feet.
He has shortness of breath now and is so weak that it is hard for him to stand let alone walk. More so than before. He couldn't walk very well before due to his dizziness and bad feet. But now it is due to weakness and dizziness.
He sleeps constantly all day long and has a hard time breathing laying down.
It was bad enough for me to deal with all this back in 2014 when it first began, but now, since he no longer sees a doctor or takes medication I am mentally worn out. Emotionally destroyed and sick to my stomach everyday wondering what today will bring. I find myself crying at the grocery store, washing dishes or alone in my room in the house.
It is hard to just sit here and watch someone die. At least when you go to a doctor, whether you take medicine or not, at least the doctor will tell the patient and the spouse if they are doing better, doing well, doing awful, or if dying how long they have to live. This helps the survivor plan for their future. As bad as the news maybe, at least you know !!!!
I asked my husband how sick do you have to get before you will go see a doctor again? And he says, he's thinking about it, but he never says yes.
So day after day, I watch him deteriorate, and sleep in his easy chair, with labored breathing, and find myself often sitting next to him listening to see if he is breathing at all, or looking for his chest to show some signs of life. What a way to live, having to check to see if your husband is a live or dead every time you enter a room.
I don't understand why he can't just go see a Doctor, get blood work, an EKG, an X-Ray just to find out. But I think he is afraid to find out. And so,
I hate my life. Because I don't have a life and haven't had a life since 2014.
I've seen counselors but they keep assuring me that there is nothing I can do to make my husband see a doctor because he is of sound mind. They sympathize with me, but they can't help me. Nobody can help me. Not a church, or anyone. The only person who can help me is my husband by going to see a doctor and getting himself checked out.
His children don't see him hardly at all, but when they do they tell him that he needs to get off his butt and see a doctor to see how he is medically. But my husband tells them that it is his personal decision.
I'm writing this not because I expect anyone to help me, because nobody can, but I'm writing this to perhaps help someone else who is going through the same thing I am. But then again, I'm wondering how many people stopped seeing a doctor or taking any type of meds at all? I'm curious how many? Especially with everything my husband has? How can he live so long without treatment?
And what is awful about all this is that I find my life now evolves around waiting for him to die. And I've gotten to the point of hoping it will soon. And that makes me more depressed and not very happy with who I am anymore.
Good man, bad man, it's no pretence to look on him as a very sick man. And that entitles him to compassionate care.
But it does NOT entitle him to cross your boundaries.
Will you update the eldest son? That was certainly a sad communication from him that you saw, but it can hardly have been unprovoked, one suspects. It would be a courtesy to let the children have a situation report, doesn't have to be any more than that.
There are positives to this struggle, my husband died suddenly almost 4 years ago, he died while I was at work, he had a seizure fell face first into the couch and suffocated. His behaviors led to his death but I didn’t expect it at all and I was not ready. I am not trying to minimize your experience I know what you are going through is hell on earth and you are doing it all alone. Reaching out even in forum is a step in the right direction, share your feelings no matter what they are and as far as your husband refusing medication that is his right but if you feel he is refusing in order to expedite self harm you can make the decision for him to be seen by a doctor that doesn’t mean he will receive forced treatment but at least you can get hospice coming a couple times a week. Take care
of yourself Nancy
Stacey
This has been an abusive relationship for a long time, hasn't it?
If you are determined to stay with John until death, are you satisfied that his will/trust is going to provide for you? What will happen to you if it turns out he's left all his money to his kids/church/favorite charity?
Thank you for helping me understand the impact on others of the kind of decision your husband took, but I cannot see myself prolonging my life at any cost. That too brings with it a tremendous impact as can be read on this forum every day.
But that means seeing a doctor, getting a diagnosis (pretty obvious, based on earlier diagnoses!), lining up care. And how can you line that up, without his thinking you've gone against him in his serious determination to let nature take its course? You can inform yourself well and explain it to him - maybe he'd believe what Hospice is really about and is worth having ; or maybe not.
If there is no way to convince him except to not be there for him, maybe it's time to not be able to be there for him. That time will come, if he lives very much longer. So perhaps the most moral thing would be to fake it. Line up a plan with your own doctor and Hospice - and then explain to him (maybe in the presence of your doctor, if possible) that you must spend some days in bed (or even some time in a rest home!). Follow through - go to bed (or to a relative, where you can REST). That means that there MUST be others come in to care for him. Without breaking his rules of no treatment to prolong life, he should quickly be relieved of much of the physical misery he's going through. Soon you'll be able to 'be there' for him - but he'll have learned that Hospice is the path to going-your-own-way.
God bless & sustain you.
let us know how it goes- I know it’s hard!
My neighbor went through this with her husband who was dying of prostate cancer and refused any medical help. He stayed mainly in their bedroom, sleeping more and more until his breathing gradually slowed and he died--it took two or three years. She stayed close by but still kept up with her friends and activities. She didn't seem too rattled by the whole process but that's how she was. He was the type of guy who had messes and incomplete projects like car rehabs and remodels going on throughout their property for 50 years and wouldn't ever let her clean anything up. Once he died she quickly got everything done and cleared away.
I understand your mixed emotions.
The only conclusion that I can come to is that I have to live every day with some levity, some fun, some joy.
This requires detaching to a rather large degree.
Easier said than done, I know. But we can do it.
Hospice will help him by being able to relieve pain and manage symptoms.
Hospice will help you with support, understanding, volunteers that can come and sit with him while you get out for a bit of "me time", Chaplains that can (if you want them) can help support you spiritually and Social Workers that can help you navigate any number of things.
Hospice can help you both in preparing the "What's Next"
Personal comment here....
It's not fair.
But I bet as your parents always told you and you probably told your kids.... Life isn't fair.
Sometimes you get Roses sometimes the Manure that the roses need to grow and thrive.
Right now you got the Manure! But so does your Husband.
Everyone should when the time comes be able to say...I've had it, I'm done. I'm Tired.
When my Husband was in the final stages of the Alzheimer's that took his life I did not want him to go..but when I would look at him he, the person in that bed was NOT the man I fell in love with, was not the Loving Husband, Great Dad, Wonderful friend..this was a shell of that once vibrant person. To ask him, to ask God not to take him would have been selfish on my part.
The great thing that you have that I did not....you can talk to your husband and he can respond.
What your husband needs from you is your support of his decision.
He needs to know you will be alright
And as hard as it is he needs you to tell him these things.
It will be difficult but accepting it or not the outcome will be the same. What will be different is the after. For you to accept these things you will begin to heal.
This is not to say the grief will be easy, it isn't but acceptance is a big step.
Hospice can help with all of this.
Thoughts and prayers to you.....
I am 59 & have taken care of both my parents over the last 8 years. I moved them in with me (I am single) & have cared for them 24/7.
My father had Alzheimer’s, Parkinson’s & also had a AAA. He passed “Peacefully” back in 2016 (more about that later.)
My mom suffered a debilitating stroke in 2010. She can barley speak, cant stand or walk, is mostly paralyzed on the left side (Left Hemiplegia) , She can’t express feeling’s or thoughts with a few exception and with incredible effort .
SO I tell you all this to explain “my Understanding” of not only what you are going through but maybe a little of what your husband is going thru.
On paper, My mother looks great Vitals are strong, Blood work is great But she has NO quality of life. She has told me she wants to die consistently over the last 8 years. As difficult as it is for her to express herself, She struggles and puts in great effort to tell me “HER WISHES” . I too often find myself listening to see if she is breathing when she naps or sleeps. And I have given caregivers INSTRUCTIONS that if they think she is not breathing, DO NOT GO IN AND SEE. Most caregivers will walk in & give a nudge just to see if their breathing or even wake them up. I have had countless discussions with mom to give her the assurance that I will not do ANYTHING to impede her passing but that I can not actively participate in that capacity.
I tell you all this in hopes you will look at it from a different perspective. A perspective that has given me great solace. I’ll make this as clear as I can.
I don’t WANT my mom to pass but I Want her comfortable & at peace. “Comfortable and at Peace to HER is to Die “
If I truly love my mom, & I do, I should, & do, look forward to the day I walk in & her body is motionless.
I have rehearsed this scenario several times in my mind & have decided that when this happens, I will pull up a chair, hold her hand & just sit quietly for however long feels right … Just me and my mom. I’ll cry, I’ll shake, & I’ll be confident that she has finally gottin what she WANTS. Peace & as she puts it, She will go home (to god) & see her lost family & wait for us. Now I don’t 100% believe as she does but as time go on, I hope that’s what happens. In either case. She will be at rest.
Re. my father. In the early stages he did his best to stay as active as possible. Walk the dog, play board games & cards etc. continue to socialize with friends & neighbors. Use it or lose it was the motto. As time went on he became as you described your husband. He told me under no uncertain terms, “I am ready to die. I don’t want to see any more doctors. I just want to die. I AM READY”
So earlier I said (more about this later)
Here’s the Later: For my father , I had called hospice & they came out & provided us with many things to make him more “comfortable” , A lift chair, a hospital bed, Walkers , wheelchairs, Medications to make him Comfortable (not better) When he got so weak that he couldn’t stand or go to the bathroom, They had a nurse come in and stay 24/7 to ease his pain (some will say to help him pass) a few days later he fell asleep & passed within 48 hours.
When the time comes, I will most certainly call them again for my mom.
This may not be exactly what you want to hear as I have the gut feeling you want your husband to get better but at the end you said , and I’ll paraphrase, You feel guilty about waiting for him to die.
My suggestion: Feel Relieved that the time is near for your husband to be at peace.
And most importantly, Enjoy as much as possible the time you have left with him.
It sounds to me he is still there mentally & maybe even emotionally. Make His Remaining Time Enjoyable and Memorable .
And respect his wishes
I promise this will make the days ahead as good as possible for BOTH of you and will also help you in the future knowing you “Honored” your loved ones wishes Selflessly.
All The Best
Those online lifespan calculators are pretty good. Find one that has a lot of detailed questions.
But I think you already know, he does not have long based upon what you've said. I'd give him a month at best.
In this situation, it seems the only help (and the best help) comes from the Lord. His ways are better than ours.
We are not meant to understand it all. Sometimes all we can do is persevere. Ask him for guidance, strength, rest and peace and you will receive it. Believe it.
I am sure there is no other your husband would love to have by his side than you. :)
The church can help, in the sense that we worship together and pray together. We are the church. I hope you are able to take time each day and rest in his presence and talk to him.
I also am in a situation where I feel like I’m waiting for someone to pass. Boy, is it an awful feeling. The truth is, we just don’t want to see them suffer anymore. It’s ok.
You will be ok, there is another side to this. Praying for you both.
One thing you might want to do, to get an accurate read on your husband's condition, is ask for a hospice evaluation. You could probably get this through his previous doctor. You can call a hospice agency to ask, or call his doctor. It will help you and him understand how close he is to actually dying. This would be helpful to all. I would just have them come. He can agree to hospice care or not later.
The basis of hospice care is that the person is assumed not to be able to recover, is given meds only for pain, and is helped to be as comfortable as possible. You get it free through Medicare usually, and they visit on a regular basis.
The advantage of this to you is that it frees you of some of the worry and responsibility of his "end", and his existence until that time. Hospice can also provide respite care.
It would be interesting to see if he would agree to hospice care.
I also highly recommend that you start doing some things for yourself and not have your life totally depend on his. This is to both help you out of your depression, and prepare for life without your husband. I have dug myself out of depression more than once. The first steps are the hardest, but well worth it. Your symptoms of crying are probably related to depression and fatigue. have you discussed them with your doctor? A mild anti-depressant may be very helpful. You will just feel better, and better able to cope. There are many out there intended for temporary use. Also, just getting some help for YOU will make you feel better.
If your husband can be left for an hour or two at a time, start doing things away from the room he is in, and away from your house. Make tiny commitments and promises to yourself, and keep them. You will feel stronger and more independent. Visit or go to lunch with friends, go to church, even if you don't quite feel like it. Have them pick you up. Let people do things for you. Think of some things you really would like some help with.
The easiest way to do this is step-by-step. If you feel overwhelmed, back up and pare it down til you are comfortable. But not stagnant. This is a way to prepare for when your husband is gone - how you will function, what you will do to maintain a meaningful life. Spend some time with your children as well. Go out with them to do something - a movie, a museum, etc.
In a way, it is selfish for him to stay at home, dwindling away. Do you think he wants you to be so negatively affected by all this?
Does he have his finances, will, etc in order? Have you two talked about his dying, what your plans would be, etc. Have you told him how this is affecting you? Sometimes people think they should not discuss certain things with dying people. When actually, they should.
Try to think about his point of view - would you want to leave the comfort of your own home and go to a strange place to die? It is always harder on the ones left behind.
But we need to think of the ones leaving, too.
There is a possibility that a time estimate on his remaining life may be a "wake up call" for him, and he will opt for some quality at the end of his life. But in the end, it is up to him.
Possibly once he sees he is no longer the center of attention, he will change his mind about "waiting to die". And even if he doesn't, you will be living a life you enjoy much more. A husband and wife have a life together, and a life apart. You just need to figure out where the line is.
Good Luck on all of this. God Bless you all.
Contact a hospice agency. A medical person will come to your home. There will be conversation, maybe a basic physical to determine his needs. Hospice can keep him at home, while attending to his health; taking a heavy burden off you, mentally and physically. Hospice works with you and the patient, abiding by your wishes. If he doesn't want to go back on meds, he doesn't have to. They provide medical equipment...oxygen to help his breathing, a chair or walker for his mobility, an adjusting bed for his resting comfort and regular nurse/doctor visits to keep you informed of his condition, helpers to manage his needs AND yours. Medicare covers hospice, Medicaid covers even more.
Please, make the call . . . for both of you.
Please read and learn about palliative home care!
Now, oh dear poor you, how unfair for him to have all those chronic problems, like he went to the supermarket and bought himself some cancer to secretly enjoy all by himself.
It is not his fault he is so ill. It is not a question of fairness. What if it were the other way around and you yourself had the same conditions as he has now. Would that mean you are being unfair to him?
When you got married it was for better and for worse until death do us depart. So his time has come--men generally die earlier than women because we work so much harder.
But oh no it is so unfair for YOU. YOU are depressed. YOU YOU YOU all YOU can think about is YOUrself. Hubbie is terminally ill how unfair of him. Poor YOU.
All you need to do is a little research on the Internet to know that once prostate cancer is out of the box (reached the bone) there is no cure. A friend of mine died recently of the same condition and he suffered terribly.
So please respect your husband's very sensible decision to get this over with as fast as possible since very clearly he has absolutely no quality of life. I do not know him but I guess he is not at all happy about being dependent and unable to work and provide for everyone. I also guess he wants to pass on soon so he will no longer be a burden on his family.
So please stop feeling so sorry for yourself because life has its ups and downs and the only thing each and everyone of us do, including you, is to die. FAIRNESS has nothing to do with it.
Get him palliative home care and respect his decision.
Mine still takes some meds and has Hospice at home coming out once a week or as needed. Can you get anything like that? or will he refuse?