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.
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
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.
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.
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.
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.
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.
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 !!!!
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.
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!!
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