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.
let us know how it goes- I know it’s hard!
God bless & sustain you.
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.
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.
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?
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
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.
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?
I love the Hot Chocolate thing. LOL
I knew that my husband's weight gain was dramatic within two weeks, but didn't realize that his weight gain was actually the same amount of fluid that was in his body and lungs. 20 pounds !!!!! Yep !!!!
He went from 181 to 200 pounds with 2 weeks and was not eating hardly anything.
Where are his children? He has 5 children, all in their late 50's and 60's, and only one son contacts him a few times during the year and that's his oldest son who is about 64 now.
He E-mailed his dad just before John went into the hospital and told him that when you die I hope you rot in hell. Yep!! Unfortunately my husband is reaping what he sowed I'm sad to say, I know how bad he is as a sober man, I can only imagine the things he did when he was an Alcoholic man. Actually I don't have to imagine, his oldest son told me the things he did. (Not incense-I want to make that clear-but pretty bad stuff that a young boy shouldn't have had to face).
At any rate life goes on. I get through my life with John, by going into my "Survival Mode". It is my way of coping. Dealing with Narcissistic Personalities, domestic violence, etc., takes survival skills.
It is tough for me to go to the hospital and visit him. To be around him. But, I just surround myself with my survival skills, and pretend that John is really a good guy and all this really isn't happening. That he will be this charming guy, until I walk in the room and see him and reality hits me once again in the face, because I know that from the time I visit him until I leave, he will deliberately annoy me, make fun of me, torment me, and then try to make me feel guilty for wanting to leave and go home just to take a break.
I know I have written a lot of stuff on here over the last two years? Horrible things, mixed emotions. Horrible things !!!
But I am on another forum dealing with Narcissism and I am working with a counselor that helps me deal with the emotional ups and downs I have had to deal with for 20 years living with a Severely Paranoid person who is severely Narcissistic.
My posts go beyond caregiving, But John is a survivor. And he may live a long time, because he beats all odds. So, he may be right. I may indeed die before him.
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.
Yesterday the doctor told us that my husband didn't have a heart attack or any signs of a heart attack but that his Ejection Fraction is very low now which caused the fluid to be so massive in his entire body including the lungs. The lungs were so filled with fluid that the doctor couldn't even listen to his lungs.
They won't release my husband from the hospital until all the fluid is from the lungs, but they did say that when John first had his heart attack in 2014 his EJ was between 30 to 40% but now is around 20%.
The doctors asked John (my husband) what did he want to do. Are you willing to take medications now? What about your cancer? Are you going to continue treatment? Are you going to see an Oncologist?
John told them that he would like to just take meds to make him comfortable and the doctor said okay, we can do that. Then John told them that no, he didn't want to pursue any more treatment for his cancer, because his doctor already told him that his hormone treatment was working and therefore anything going forward would just be on a experiment basis. The doctor said to John, I understand that but if the cancer has indeed spread to the bone, which the last test made it look like it had, but John refused to take another test at that time to confirm it, that it would be very painful on John (Once the cancer spreads to the spine). And John said, "I'd like to address that if and when the time comes). And the doctor said ok.
When John is released, the doctors will give us a list of the medicines we need to make John comfortable, and then at that time I can (on the side) talk to him about Hospice. If I need to contact them now, or if John shows signs of end of life symptoms. And what would be those symptoms.
I really like this doctor. Our Primary Doctor refused to treat John, because John refused to see any doctors any more or take his meds and hasn't seen a doctor or taken meds since December of 2017. So our original Primary Care Doctor refused to be his doctor anymore and therefore this doctor said he would be our Primary Doctor. It turns out this new Primary Care Doctor is the Chief of Medicine for the Hospital. How lucky we are to have him take us on as patients.
Sitting in the Hospital visiting with John all day long every day is wearing me out. He is doing well. He is better than I've ever seen him in a long time. But he really should get some rest but as long as I am there or any other human being John will talk non-stop until he irritates his throat and so I feel like I shouldn't stay as long as I have been, but I do because I want be there if he needs me. But I have to tell you I'm beat.
I think I'm just going to go in and visit him from 9am to noon and then come back at 2pm and stay until 4 or 5 pm. It gets dark here now around 5 pm and I night blindness. Don't know what side of the road I'm on once it get dark due to my poor eye sight.
I definitely will contact Hospice after speaking with the doctor on John's discharge and see what he thinks about me having someone now see John. And also so I have someone to talk to about my concerns and what I'm going through.
Thank again
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
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!
But thank you for updating us first :) Take care of you, too.
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.
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.
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.
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!
Thanks again
Can you go today, when staff will be able to help? Weekends are iffy......
I can't believe the relief I am feeling. I feel I can face anything now. Like I have a burst of energy.
We will be leaving EARLY in the morning !!!!
With help he may be able to live another year or two!
I'm just so relieved. I know he will go now. His legs are just too huge!!!
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
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.