Lonely,depressed with Terminally Ill Spouse - Talk About Marriage
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post #1 of 5 (permalink) Old 06-29-2010, 04:06 PM Thread Starter
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Lonely,depressed with Terminally Ill Spouse

My wife has an incurable terminal disease. She could die in the next few months or the next few years, we don't know, but her death is inevitable. We received the awful diagnosis a few years ago. I thought coming to terms with the fact that she was going to die would be the hardest part, but actually LIVING day-to-day with the effects of the disease, knowing that there is no hope for recovery, has proven to be even harder.

Four years in, she is mostly paralyzed, only able to move her head. She is in a wheelchair and is fully dependent on others. She cannot eat by herself, she has a feeding tube. She has trouble breathing on her own and is on a Ventilator part-time. She can't speak, she can type out words with the help of a computer and a switch she hits with her head, and through some signals with her eyes and head. She requires help at all hours of the day and night--to move her, lift her onto the toilet, get her into bed and into her chair, suctioning her mouth and throat.
She doesn't sleep very much at night, even with muscle relaxers and sleeping pills, so I or nurses we hire at night have to tend to her through the night as well. Even with the Nurses helping a few nights a week, I am still needed to help talk to her, give her medicine and take her to the bathroom. She wakes up many times a night, requiring attention. This has been going on for a couple years, and the accumulated lack of restful sleep has changed me. REM deprivation causes me to lose focus at work during the day, made me short-tempered and brought on my depression and feelings of hoplessness. I think it has even changed my personality to some degree.

I love her so very much, but it is getting harder and harder to live like this. She is in and out of the hospital for infections and breathing issues every few months. Her mother takes care of her during the day while I'm at work, but since I work from home, I am needed many times a day to get her into and out of her chair and take her to the toilet. As soon as my workday is over, I take over caring for her. I try to set up things for us to do together, but she is usually unable to muster the energy to go out. Most of the day, she spends watching movies, one of the few things she is able to do. At night, we watch tv shows as I feed her dinner in her feeding tube.

Taking care of her takes up all of my time and is difficult to get away, even a few hours a week, for any time for myself. All my time is taken up tending to her needs, and I have to put most of my needs aside. I'm hardly ever able to leave the house for more than a few minutes. Social contact with our friends is almost entirely on email or online. She is seldom feeling well enough to have freinds come and visit, and I am not often able to leave her to see my friends.

We have no love life. She can't hug me back, can't kiss me when I kiss her. She has lost interest in any sort of intimacy between us. I have tried to initiate some sort of affectionate contact, but she became upset that I tried. We haven't made love in almost a year, and it was months since the time before that. As much as I love her, there is just no joy in this existence. It's a full-time job to maintain her health and keep her spirits up. Most of her communication with me is what she needs from me, and what I am doing wrong. She hardly ever tells me she loves me, or thanks me for taking care of her.

I am starved for any sort of physical contact and it is tearing me apart inside. After so many years of trying to come to terms with the fact that she will die, I now find myself prepared to go on with life as a widower. I find myself attracted to other women and thinking of them in my life after my wife is gone. I love my wife and I don't want to stray and have some affair, but the temptations are there and are more and difficult to resist. I WANT to resist, I want to stay faithful to my wife, but I don't know what to do to stop feeling these needs that can't be met by her anymore.

Someone please help me. I'm desperate. Friends, family and church members think I am a saint for selflessly caring for her, and that expectation is all that keeps me doing it sometimes. I don't want to let them OR my wife down by doing something stupid.

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post #2 of 5 (permalink) Old 06-29-2010, 06:24 PM
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Re: Lonely,depressed with Terminally Ill Spouse


I will be blunt with you. First, I'm glad you came on here and were honest. Usually people want to "put up that front" of being the perfect person and saint, when inside they are tearing themselves to bits. So I want to give you some kuddos just for coming here and being honest when it wasn't "pretty."

Second, you are a living, breathing human being and until the day you die you will have emotional and physical needs too. I admire you for wanting to be faithful to your wife especially now in her time of need, but guess what? Just because she has physical illness and limitations doesn't mean that your needs suddenly stop. Let me pick one as an example: the need for Admiration. Often fellas like to hear a little appreciation when they do something right--their woman gushing all over them thanking them for leaving the cave and killing the dinosaur for example. in your instance I bet it would do your heart a world of good to hear your wife say, "Honey I know you have given up a lot to take care of me and keep me company, and I know you get very little sleep all because of me. Thank you so much for your constant love and tender care. It means so much to me that it's you and not some stranger caring for me." Am I right?

So you're wife may be ill, and let's be honest here DotComDaddyO, we are ALL dying so that's nothing unique! The fact is, she is not dead yet and while she is alive she has the duty to do her very best to meet your needs. Yep she probably can not mow the back yard....but she sure as shooting could say thank you! Or express love or affection!

You've gone a long time being the Giver in your marriage and now your Taker is starting to rear his head...and with good reason. I would suggest going to my website (there's a link in my siggy if you want to take a peek) and learn about Love Kindlers and Love Extinguishers. Right now you do love your wife, but you are vulnerable because for a long time she has not been doing the love kindlers she could do (and I realize they're limited but still) and she is engaging in love extinguishers. Since this situation could literally go on for years, it is just not reasonable to expect you to give all, her give none (or extremely little) and have you stay. Period. Even the most committed person would eventually leave if only for a break!

Your marriage is where it is now and it may stay that way. I suggest that you find ways to fit in YOUR needs into this marriage too. For example (just brainstorming here): you NEED to get sleep! That can not continue for the long term so arrange for someone to be the responder overnight during the week and on the 3 weekend nights you can do the overnights and nap (sort of like new moms do with an infant on a 24-hour schedule). The fact of the matte ris that without sleep it will harm YOUR physical health, mental health, emotional health, etc.! This one is imperative even if she fusses about it. Next I'd say arrange to have some time to yourself with friends--like go out to dinner with a small group or join a bible study. For your own mental health you need to have some interaction with other adults who can also support/encourage you. Finally I'd say you have a talk with your wife and let her know that you are not backing away from caring for her but that all this care has been neglecting you, and that isn't healthy either. You can not care for HER if you do not care for YOU. So you need to reach an agreement together to meet some of your needs too--and yeah that specifically means that she would do what limited bit she can to meet your needs. This isn't being selfish--it is being reasonable and realistic. So yeah--ask her right out if she could say "thank you" every now and then or a heart felt "I love you". Shoot maybe just be honest and tell you that she is so mad at herself for being dependent like this!

Long story short, you aren't being a jerk to expect/want to have some of your needs met too. That is normal and reasonable. Now go ahead and work on getting them met within moral boundaries, of course.

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post #3 of 5 (permalink) Old 06-29-2010, 09:04 PM
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Re: Lonely,depressed with Terminally Ill Spouse

At some point you will have a breakdown should things continue on as they are. The relationship breakdown is really just a symptom of the greater issue of the tremendous burden of her illness.

My starting point would be her primary doctor and explaining that home care is becoming beyond your ability. It really sounds like she needs nursing home care by this point. It's really more the doctors responsiblity to see that the patient is receiving adequate care than yours.

Importantly if you feel yourself becoming at all unsafe, you should call your local suicide prevention line.

This is an awful situation. My heart goes out to you.
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post #4 of 5 (permalink) Old 02-05-2016, 05:51 PM
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Re: Lonely,depressed with Terminally Ill Spouse

Hi I am in the kind of the same boat my husband has Congestive Heart Failure, he had a heart attack it will be a year on March 12,2016, he is not the husband I married but he can walk and talk but we cant do husband and wife stuff because of his illness. It has gotten to me and his Parents too a lot of stress for all of us he is in Hospice he is homebound also, so we don't go anywhere except his Parents house and his Parents take me to the store and I work at Walgreens 4 days a week and off 3 days to help take care of him, I know how you feel though. I wish you and wife the best of Luck, Send Gods prayers ya'll's way.
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post #5 of 5 (permalink) Old 02-09-2016, 01:59 AM
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Re: Lonely,depressed with Terminally Ill Spouse

Originally Posted by bettles50 View Post
Hi I am in the kind of the same boat my husband has Congestive Heart Failure, he had a heart attack it will be a year on March 12,2016, he is not the husband I married but he can walk and talk but we cant do husband and wife stuff because of his illness. It has gotten to me and his Parents too a lot of stress for all of us he is in Hospice he is homebound also, so we don't go anywhere except his Parents house and his Parents take me to the store and I work at Walgreens 4 days a week and off 3 days to help take care of him, I know how you feel though. I wish you and wife the best of Luck, Send Gods prayers ya'll's way.
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