My husband doesn't want to be left alone

akbetty · June 2009

I'm having a problem because my husband doesn't want me to leave the house anymore. I have to rely on my mother and my friends to take my daughter to preschool, to take my older kids to their activities, even to do grocery shopping. He has stage 4 lung cancer, and I understand that he's afraid something will happen and he won't be able to breathe, but it's very difficult to have to rely on others for everything. I am trying to convince him to let a friend stay with him so I can attend our daughter's high school graduation in a couple of weeks, but he says that he's dying, and he needs me, and that's the only thing that matters. I have tried to be understanding and to put his needs first for the past two years, but I am really torn on this one. He has been depressed because it's clear he's not getting better, but he's not bedridden. He's starting a new round of chemo tomorrow. He says he doesn't want hospice, or friends or family, only me. Does anyone have any advice for me? I don't want to let him down, but I'm beginning to feel trapped.

longingforhope · June 2009

Strength
akbetty

It sounds to me that you have been a wonderful caregiver and I can judge because I myself have been one for my husband with stage 3 malignant melanoma that is matastisizing since Aug 2008. We are the few and the chosen to endure this journey and it sounds like you have gone above and beyond the call of duty. Alot of what he is saying is the depression talking, if you aren't sure talk to you family doctor or Oncologist. Of course you are his lifeline BUT you are still the Mom. My daughter graduated from high school this past Friday and my husband and I were both there. If he isn't bedridden then I would insist he goes, you daughter needs and deserves to have you both there. But if he won't go get a friend to stay and go. Remember when are kids were two and they didn't want us to leave them but sometimes we just had to, that's what you are dealing with now.

You can be the CG and still be the Mom. He might be a little angry but you have already earned your angel wings and you have a right to pay attention to the kids too. He is adjusting to the acceptance stage of dying and he's scared and it's completely normal. I helped my best friend take care of her husband with stage 4 lung cancer three years ago this month, and he wanted her but learned to be ok with me so she could catch a track meet, go to the grocery and take her 3 kids to dinner.

I promise you he will be ok and you deserve a break. So go buy a new outfit, get your hair done and be at graduation with bells on. I did and I will never regret it.

Keep in touch.

LH

MichelleP · June 2009

I have the same issue with my husband
I understand what your feeling betty. My husband has stage 3 lung cancer and is the same way with me. He doesn't want me out of his sight. If he sleeps for an hour and wakes up and I'm not in the room he thinks I've gone and left him alone. I had a baby monitor so I could hear him all the time while in another room but since he couldn't hear my voice he would start to panic. Then I bought some two way radios so if he needs me I can answer right away. BUT it's been three months since I have been able to leave the house and do anything for myself. Our son thank goodness is able to take care of all errands etc but it's very hard. I'm glad your husband is not bedridden like mine is. It's only been a couple months since we got this diagnosis and he has declined this rapidly. Before this he was working out at the gym 3-4 days a week. I wish I had advise on this one for you but actually I could use some too! Good luck and I hope you can work something out so you can have some time to yourself on occasion.

akbetty · June 2009

MichelleP said:
I have the same issue with my husband
I understand what your feeling betty. My husband has stage 3 lung cancer and is the same way with me. He doesn't want me out of his sight. If he sleeps for an hour and wakes up and I'm not in the room he thinks I've gone and left him alone. I had a baby monitor so I could hear him all the time while in another room but since he couldn't hear my voice he would start to panic. Then I bought some two way radios so if he needs me I can answer right away. BUT it's been three months since I have been able to leave the house and do anything for myself. Our son thank goodness is able to take care of all errands etc but it's very hard. I'm glad your husband is not bedridden like mine is. It's only been a couple months since we got this diagnosis and he has declined this rapidly. Before this he was working out at the gym 3-4 days a week. I wish I had advise on this one for you but actually I could use some too! Good luck and I hope you can work something out so you can have some time to yourself on occasion.

thanks LH and Michelle
Thanks to you both for responding. I'm sorry to hear that you are in situations similar to mine, but it's nice to know that someone understands. It is definately a challenge to find the right balance between being a good caregiver and everything else we try to be and do. Please let me know how you are both getting along. I will keep you in my thoughts. Betty

soccerfreaks · June 2009

From the other side
Hi, Betty. As you know, I appreciate the caregiver's efforts and frankly think your job is much harder than that placed on your husband. I really do. And I hope you have read enough of my junk on here to know that. I would not be alive without my wife, and I am sure there is an aircraft carrier full of guys on this site who would agree.

That said, I do want to offer the perspective, no, perspective, of a survivor.

For me, it was jealousy. Pure and simple. I was not afraid. I was never afraid. I was jealous.

Consider: my wife was with me, slept in my room in the hospital, even for a month the second time I was in, was with me at home when I came home. She was ALWAYS there, 24/7 it seemed. And I was glad of it, to be honest. I'll bet that even if you ladies were not nurses allowed to stay with your husbands in the hospital, you have, based on your posts/responses, been there at his beck and call from the beginning and everafter.

Consider: We have cancer, of whatever kind, and we feel, almost certainly, that we are less than what we were before. Why? Probably because in one sense or more, we ARE less than what we were, and I say that regardless of the type of cancer. We feel weaker, or we are disabled, or we can't speak the way we used to, or we can't work the way we used to, can't breathe like we did. We are not what we were.

We are not what we were. And we are concerned, at least for a time, that you will leave us. It may sound absurd, but believe me, I am not the only one who has had that feeling. I am just lucky enough that it was only in my imagination: for some it becomes a reality.

It is jealousy, I think, rather than fear. (Well, jealousy is a kind of fear, so what I mean is that it is not really about what will happen to us physically if you are not there for awhile.)

My advice, as always, is that, as caregivers, you need to take good care of the givers! That means that you need to make sure you get out, that you enjoy some free time away from the burden of caring for your significant other, even if it kills us

.

Seriously, even in the hospital, my wife's friends came and hauled her away for lunches, dinners, drinks, from time to time. It saved her sanity (presupposing that she is sane, of course). At the time, I will admit, it tormented me. Jealousy.

It was, to be sure, the best thing that could have happened, as it DID save her sanity and we are still together and I am over all of that possessiveness.

I would advise that you folks consider the same. Make time for yourselves. Let your significant other know what you are doing and why you are doing it, and then DO IT. Eventually, he/she will realize that you are coming back, that you do care, that you are not leaving never to return.

Do it. To be a good caregiver, you must take good care of the giver.

At least you now have an inkling, I hope, of what it is that bothers us so when you leave.

Take care,

Joe

zahalene · June 2009

One thing comes to mind...
You might check out the possibility of getting some medically trained people (home health care?) to stay with him while you go to this special event. That might be easier and more comforting for him than having relatives or friends who he feels 'don't really know how' to care for him properly. Of course he probably isn't going to react any more positively to this suggestion than any other one you might come up with, but I agree with soccerfreaks that you MUST care for yourself as well. And you DO NOT want to be burdened with guilt in the future for having missed this auspicious occasion. Perhaps if you simply state that you ARE going and give him a choice of options for his care while you are gone,....well, good luck. And God bless.

slickwilly · June 2009

zahalene said:
One thing comes to mind...
You might check out the possibility of getting some medically trained people (home health care?) to stay with him while you go to this special event. That might be easier and more comforting for him than having relatives or friends who he feels 'don't really know how' to care for him properly. Of course he probably isn't going to react any more positively to this suggestion than any other one you might come up with, but I agree with soccerfreaks that you MUST care for yourself as well. And you DO NOT want to be burdened with guilt in the future for having missed this auspicious occasion. Perhaps if you simply state that you ARE going and give him a choice of options for his care while you are gone,....well, good luck. And God bless.

Time to weigh in
I will go down the same trail as Soccerfreaks. It can be quite different on the other side of things. But I want to add in "dignity and trust". We spend years building relationships with our spouse. They know more about us then anyone else. We don't want other people seeing us at our worst. I don't want someone that I have not built up a pile of trust in trying to take care of me. I guess I would have a problem if my wife called someone up and said "I'm leaving, and your life is in their hands". I got into caregiving when the wife of a friend called. He had brain cancer and wanted to see me. He was almost blind and could barely stand after two hard years of treatment. We both had cancer and that brought down the dignity wall. He would allow me to hold him up while he used the bathroom. He didn't have a problem with me doing things for him that he would not allow anyone else to do. And he didn't have a problem with my wife taking his wife out so she could get a break. So I guess my opinion is this. Someone needs to step up and be around enough to build the needed trust so you can get away. Someone that actually cares about your husband and he is comfortable with even at his worst. If there is no such person then its down to hospice. The caregiver has to get some breaks someway. And missing your childs graduation is not an option. Your in a very tough situation and I hope there is someone out there that your husband trusts. Slickwilly

My husband doesn't want to be left alone

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