Emotional torture

david54

 

I was told by Hospice that my wife has days to weeks of survival left. She eats perhaps a piece of toast and that is her entire meal for the day, she has visible weight loss and people who have not seen her are somewhat taken aback. I sleep on the couch and she is in the guest room because she can toss and turn too much, but I am in close proximity and sleep with one eye open. Any noise coming from her room and I'm awake. I am literally 10 feet away from her.

She is on enough ativan, methadone and morphine to take down 5 elephants. A few days ago she was so sick I was sure this was it. But, she seems to be making an adjustment or tolerance to the pain meds and went out to the back yard this evening to take a short walk.

Where I'm going with this is that from one day to the next-my psyche is an emotional roller coaster. One day I'm ready to type her obituary, and the next I wonder if she will rally and survive another year-at what cost to me and my energy? Sounds awful I know!

My life consists of pouring meds into a little cup, giving little white pills, withdrawing meds into a syringe, helping her into the shower, rubbing her sore back, communicating with hospice, friends, family, dealing with insurances and then do the house and yard work.

It's a form of torture going from feeling single (almost) one day, to married the next. I have no point of reference.

Am I making any sense? I'm married but have no partner. The damn cancer robbed me of that.

 

cinda37363

Emotional torture

Dear david54

I understand far to well how you feel.  Yes, you make sense.  I to face the very same feelings as you describe.  I also must add I feel an overwhelming  guilt.  I have never been so tired in my whole life.  As I type these words I feel guilty...,  when this awful hateful disease  takes my husband's life...and it will soon I know I will have nights that will stretch before me to sleep etc.   I don't even have words that can describe  what I feel.  Empty.  Angry that this cancer has robbed me of my huband, my best friend,lover, I could go on and on.  He doesn't  begin to know the thoughts that go thru my head...at least I hope he doesn't.  I have so much I want to say but he has chosen not to speak about anything to deep while I have an overwhelming  need to talk about it.  Am I wrong...ohhhhhh God please help.  He isn't even on hospice so no support there.  They want him to see a palliative  care Dr.  Why...Wouldn't  hospice be Better?  I can't even be objective anymore.  What are the right answers....  I have gone from wanting him to seek every treatment  available  to wishing he would choose hospice and at the same time afraid he will choose hospice.  Is there a right or wrong choice..I don't think so.   I hate seeing him suffer and just don't know what to say or do anymore except.... I Love You..with all my heart.....I wish for just to feel those arms around me once more....

 

Noellesmom

I hear you both

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.

soul-mate

David ,you're doing all that a caregiver can do. It's so hard to see where everything is going but you know that you are giving all you can and there's no reason to feel guilt. The extended time in this journey is not easy but you want as much time with your partner as you know  your situation will change . I was in your position two years ago when my soulmate of over 42 years passed from this terrible disease. You will be in a good place if you have no guilt ,by having done all you could beyond your control of the cards you were dealt. I wish you the best .

Ladylacy

Emotional/Reality

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

david54

Ladylacy said:

Emotional/Reality

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

Thank you all for your

Thank you all for your support and sharing-I can relate to each and every one of you. I am putting together a photo montage on a CD for her memorial service. It tears me up but it's also therapeutic.

AlinoreandWilliam

Emotional Torture

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.

Noellesmom

What sounds selfish about it?

Ask your friends to sit with your husband while you go out to wherever you want or need to go. I always consider it an honor to sit with sick friends. It is a real blessing.

Go see your own doctor. Get a checkup. Go to dinner. To the library. For a walk. Bring your husband flowers or a favorite treat.

Breathe.

Life is going on. Live it. Caring for a terminally ill spouse is important. So are you. Just do something small for yourself.

It isn't selfish: it is NECESSARY.

jorola

Noellesmom is 100% right

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.

Alyssha

Wow can I relate

I came on here wanting to say so many of the same things.  So angry, afraid, lonely.  I feel selfish, but He has nothing left to give me, and I am so totally drained.  I feel like one touch would make it so much better.  But then it would just hurt more when it is taken away again.  I of course don't want him to die, but wonder how much longer I can continue in the role.  Mostly I just feel alone.  I really thought I was going to lose him about a month ago, and I am thrilled he wa able to get thru that, but at what point am I just being selfish. Exactly like  OP said - at what cost.  

We have 5 kids that I feel are so neglected because so much of my energy goes to him.  And do I even get to say anything about the intimacy?  Sex, Passion.  I am 42 and it's killing me.  I miss it so much, feeling wanted and desireable.  My heart breaks for all of us.  The ones we care for and all of us doing the caring.  

Noellesmom

Just saw this

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.

david54

Alyssha

Even though I am male I relate to your sharing about intimacy, lack thereof. Know what makes me angry? Cancer robs us of EVERYTHING! I don't even sleep in the same bed with my spouse anymore, its too small. I sleep on the couch so I can be in proximity for my wife if she were to fall. Yes-I miss the passion! Oh how I took it for granted before she got sick. How I long simply to hold her at night, to hear her breathe and feel her warmth.  I hear you about feeling alone as well. There I times I want to be alone, and times I feel so lonely I want people around me. I am praying for you and your 5 kids. Ours are grown.

And I share this rather personal issue because you had the courage to do so first. Everything I share with people on this board is meant with respect, empathy, concern and heartfelt compassion. Hang on Alyssha, you will be in my prayers tonight.

Noellesmom

David

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

imyaya1952

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?????

jorola

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?????

dex is an evil but sadly necessary drug

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.

Noellesmom

Is there nothing they can give

To counter the unwanted side effects?

imyaya1952

Thank You Jorola for the kind

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.

Alyssha

Hi everyone.... Just checking in

David - I hope you are feeling okay on this terrible rollercoaster.  

Yaya - I am soooo sorry.  There was a period of time where my husband was like that and I was so hurt and angry.  I thought I hated him for a bit there.  I am over it now - but it was a really difficult time where I struggled to give him the loving care I had been.  When I finally could accept it as the cancer and not him the dam burst and the love came pouring back in - but it was temporary, so I am sure if I had to deal with it for a long time I would not be as loving.  I totally agree with the idea that I would want to do for others, but he seems very focused on what he wants.  I am shocked that he will leave me and these kids with nothing.  

Noellemom I see so many posts from you - thank you for continuing to be a part of this board and supporting us. 

I just posted in the colorectal cancer board - things are not looking good here.  While I thought there would be some relief knowing that we were near the end, I was so incredibly wrong.  The pain is breathtaking.  I pray that he can rebound again.  

Noellesmom

Prayers lifted

For Grace during this difficult and sad time, Alyssha. 

You will be in my thoughts.