Emotional torture

my husband survived his stage 4 cancer but is suffering from effects of the treatment as well as copd from smoking he can't/won't stop. I've been told to expect a sudden death - he's been having strokes.

David, write the obit now so you won't forget something when you need it.

Cinda, accept the palliative care. When it is time to move to hospice care he will already be in the system. When he is evaluated, they may put him in hospice instead of palliative at that time.

This is tough times, unimaginable times. Afraid to sleep, afraid not to because you've got to be ready. At the end of the road when there is solitude and quiet and your unwell spouse isn't waiting for you to do something, remember you are alive and it will be okay. Never the same but okay.

I understand and agree with all that has been written.  My husband passed 14 months ago from this beast called cancer.  He fought it for the first 3 years undergoing a total of 72 radiation treatments, 10 chemo and major surgery.  When we were told that the cancer had come back a second time (and this was a second primary) and gone to his lungs, he decided enough was enough and several months later it was recommended that he go on hospice.  Everyone thinks hospice is only for the end, but it isn't.  He was on in-home hospice almost 2 years before he passed.  In fact hospice was thinking of taking him off, when the decline started.  Thankfully his decline was fast and peaceful.

It is hard on the caregiver to watch someone you have loved and been with since the age of 17.  I did everything for him at the end.  Feed him thru his feeding tube, did his medicine around the clock and cleaned him up.  One thing I did at the end was I bought a baby monitor since his hospital bed was in the family room and I couldn't sleep in the recliner and so I slept in the bedroom and I could hear him all the time.   He was on in-home hospice and the last two weeks I was asked did I want to place him in-patient hospice, but I declined.  Yes it is tiring and emotional and even afterwards.  The difference between pallative and hospice is that when it is pallative you can still see your doctors and receive treatment but once you are on hospice you can't receive treatment or see your doctors for the cancer.  You can see your doctor if you have other ailments, but not cancer and you have to notify hospice first -- that's how it was explained to me. 

Wishing you peace and comfort

I too am going through the same things.  We have no family willing or able to help, and only a few friends, who would help if I asked, but I am reluctant to do so.  My Husband is getting palliative care for his terminal cancer.  He is miserable and there is nothing I can do to make him feel better.  Some days, all I can do is go into the bathroom and cry.  We have been married for 30 years and I am afraid and ashamed of being so.  He is taking so much Morphine that he will fall asleep standing up.  I used to be a Medical Assistant at a local hospital and I worked on the cancer unit and the cancer trials unit.  I thought I was prepared when he was first diagnosed, but that was just a fantasy.   My doctor told me that I have to leave the house once in a while and do something for myself.  I am a volunteer at a local wildlife clinic, so I go there.  I feel terribly guilty, but I am afraid I will go crazy sitting in the house, day after day, watching him sleep and breathe.  It is so lonely.  It all sounds so selfish.

It is necessary. A burntout caregiver is no good to anyone. You can't properly help the one you love and you're a mess. Sorry hun but you are.

Do it and watch -you'll see an improvement in happiness in both of you.

Peace and comfort to you both.

I'm sorry. I know how hard this is. 

You are not selfish. Your needs don't go away because your husband is sick. This is one time when life is just not fair to anyone concerned.

Lifting a prayer for you, Alyssha.

I've been wondering how things are going with y'all.

imyaya1952 said:

can anyone relate to this

Please let me rant. It is early morning and I just cannot go back to sleep.  I am hurt, angry, and just plain tired of all of this. It is not just the cancer that robs me of my husband. (multiple myeloma- he has already lost a hip and pelvis bone) I have to wonder if the cure( the meds for him to survive longer as his cancer is not curable) is worse than the disease. The Revlimid/dexamethasone combo he is on has turned him into a mean crazy nut case.I'm sure to some that sounds mean. But please walk in my shoes a bit here. Every Tuesday he gets his dex.  that day and night he is hyper and doesn't sleep.  The next-2-3 days he is paranoid, sarcastic,agressive,and calls me names, and "reprimands" me for anything I do wrong in his eyes.I can't even drive with him in the car anymore. I just let him drive and pray that he doesn't get mad at another driver. We are both 64. I tell myself continually to ignore it.I know I should just "suck it up" and be quiet when he calls me names and yells at me. But I am human. I used to be a real talker as I was a hairstylist.  Now I am becoming  an introvert.  I don't even know me anymore.   If I tell him there is no reason to call me names and be mean he says "oh it's all about you now".(Because" if you don't have cancer, as he does then your problems are less important)  Then all of a sudden he will be so sweet to me I think it is a different person.  It is!!!  It is the other personality for what used to be my husband. It is like being tossed back and forth- worse than a bi polar person. Then I drop my guard and BAM the monster comes back.  I am sure it sounds like I hate him. I don't.  But honestly I don't even know how I feel anymore. Several months ago we (I) packed up our home, rented it out and moved 2600 miles to be closer to our son.  Also for easier medical care as we were living in the mountains. I sit in this apartment and wonder if it is all worth it.  I had to have surgery two weeks ago. (The last thing I needed with everything else) Last night he told me sweetly, "wake me up if the dog need to go out. So this morning I woke him up. All H*** broke loose. I should have known better. When he took the dog out he did not take his cane and he fell. Of course that was my fault too. He is a grown man and it seems to me the cane should be his responsibility. The doctors know these meds cause the side effects I am living with.  They downplay it and say "it causes some irritability". How dare them.!! This abuse is going to kill me first via stroke or something. Meanwhile, I can see now that if I lose him my memories will be tainted with the past few years instead of our life together.  I know this because it happened to a friend of mine. What price life?????

I am so sorry you are going through this. Oh how I wish i could make this better for you. What you describe is very similar to what we went through when my mother in law was on it. She was like this 24/7, seeing things, hearing things like the devil, actually thought my father was the devil most times. She'd scream and yell and was angry almost all the time and never slept. We did shifts to watch her because of this. It is a good thing she was a tiny woman as when she got violent it was easier to subdue her but her strength was still mazing for her size. Finally it got too much for the family and we had to place her in hopice. Shortly after her decline went rapidly to the point she became bed ridden then she plateaued and stayed there an agonizing 10 months before she passed. Was it worth it? I still don't know.

My husband was also placed on dex for 6 weeks when he developed pneumonitis after his radition treatment for his lung cancer. Knowng how his mom reacted I was on edge for those 6 weeks. Forunately it was not quite the same. He was super hyper and would not shut up. I had to take his debit card and VISA away after he spent $5000.00 on various things. I could see a flash of anger in his eyes once in a while but somehow he managed to control it. Maybe becaause he was only 40? Maybe because he just had strong control prior to his emotions? I don't know but I thanked God everyday for it because had he ever let loose there was no way I could have stopped him sick or not and honestly it that stupid drug's fault. As I said it is evil. I know it has a purpose but it definitley come at a very price as you very well know.

Just try to remember it's the drug. Hard as it is. Can you get any extra help? I am from Canada so I do not know how hopice or home care works in the US, sorry. You need time away. You need help. You need to let people including the dr know the honest trut. He should not be allowed to drive. Sounds like he is a danger. You are probably scared to do or say anything I get it. But what if he does something and someone gets hurt?

As i said I am so sorry how this has affected you and wish I had a magic wand to make things better. Know I am thinking of you and praying for things to get better.

Peace and comfort to you.

Thank You Jorola for the kind words. As he loses more control of his body he tries to take more control over me.  I stopped short in my tracks when you talked about your husband spending all that money.  I sure relate.  My husband too spent a lot of money as I was trying to keep a budget to pay for everything.He even gave some foreigner our bank account number for over a thousand dollars for internet security. I go behind him now everyday to check things. I remember thinking that if I had a terminal desease I hope I would think about what I can do for my loved ones.  But it seems he only eants to get everything he always wanted before he exits this earth.I even thought about having him committed.  But he has a sister on the west coast ( she is not too smart, says she sees no difference in his behavior and makes me feel nuts) that he would get involved and I can't afford a lawyer.  I am just so happy to be near our son.  Again thank you for your kind words and prayers. And for Noellemom. They have nothing to counteract Dex. He takes paroxotine but it makes no difference. God Bless you both.

For Grace during this difficult and sad time, Alyssha. 

You will be in my thoughts.