Comments on: Caring for A Chronically Ill Spouse

By: wsimmons65

wsimmons65 — Wed, 18 Apr 2012 01:58:44 +0000

Thomas,
I understand completely. I am in tears as I write this. I did not know what my wife’s condition was when I met her and it was only 2-3 years into our marriage that I fully realized that it was not going to go away. However, by that time my wife had reservoir of insults and misunderstandings from me that she continues to reference to this day that I made in my ignorance. Instead of ever realizing just how difficult this is for me she makes me feel guilty for making it worse by any stress that I may unintentionally cause. She has Chron’s Colitis and as such she has not had a libido or felt well in years -long before meeting me.
I miss sex, drinking wine with her, civil conversation, hugs, romance, and someone in my bed at night. Because she goes to the bathroom 7-10 times a night we haven’t slept together in years. I really want to leave but we have 2 beautiful kids that I don’t want to abandon. I have never felt so alone in my life. I feel that I my life is over and that she could care less because her illness takes precedence.

By: sethharry

sethharry — Sun, 11 Mar 2012 16:24:45 +0000

I like this article very much. I am married to a woman who has a chronic auto-immune disease. A lot has changed since we met. Her physical condition has caused her to lose lots of weight, she has difficulty breathing and at times is very, very weak and in a lot of pain. I have become not only the bread winner but the caregiver and like others who’ve commented this can be very challenging. The hardest part for me is the helplessness I feel and the frustration of watching the person I love most suffering. Hers is a relentless illness and I try to keep my mind out of the future. A cure could be found, she might reverse herself, some miracle could happen or she could steadily decline and suffer greatly, I can’t predict that part. I obviously hope for the best but it helps me to stay in the day. To look at the parts of her that are well. Her smile. Her sense of humor. Her curiosity. Her creativity. It also helps me to communicate with her when I am overwhelmed. I’ve learned that I can’t manage everything, that I can’t make her better and I had no part in causing her illness. It is hers. I am well and I have to enjoy my life. I liked what you wrote about taking time out for yourself. I have learned that I have to do that as well. I am not a martyr. I choose to stay with her because I love her and I want to be there but it is really hard some days. Some days I think about leaving. I leave that option open for myself. I don’t want to be trapped. I want to continue to stay out of my free will and give because it feels good. I focus as best I can on what feels good. This is a very difficult practice when you’re around someone who’s in so much pain I am a bit of a clown and making her laugh feels good. Playing games, watching movies and TV. Going on dates when she’s up to. Trying to keep it romantic. Not always easy but necessary. It has also deepened me as a person. It shown me that I have more love inside of me than I ever imagined. We have deepened our spiritual practices and that’s also helped a lot.
We have gone to therapy together to work out some of this and to better empathize with each other. That was helpful and if things get bad I would certain;y go back. Maybe the single most helpful thing for me is also the hardest one to practice, to not have your entire relationship focused on the illness. To keep your attention on what feels good as much as possible.

By: Keenan

Keenan — Tue, 04 Oct 2011 21:17:33 +0000

Consider me a stalker, as I am the sick person in the marriage. My husband knew I had a genetic condition, Ehlers-Danlos Syndrome when we got married 22 years ago. He saw me through more than 40 surgeries and countless hospitalizations since then. I considered our marriage to be stellar. He rides the bike for his ” me ” time and I don’t begrudge him one mile. A year and a half ago I was recovering from surgery when I noticed that he would come home from work and go immediately to get mail and do other mundane tasks. No greeting. I had been bed bound and alone all day. The pain of this daily rejection was palpable, but I knew this was just the tip of the iceberg. I asked him what was wrong and he said he just could not do it any longer. My entire world fell apart. I have no children to help care for me in the future. My health insurance comes from him. My world was him. Because those of you in the trenches know that social engagements are few and far between…people don’t understand the world of serious chronic illness. I thought that after being with my husband for 25 years (dating for 5, then married) that we were safe. So, don’t wax on all poetic about how well you’re handling everything. I take nothing for granted at this point in time. But, I still wish you luck. I’m not that cynical.

By: Graeme

Graeme — Tue, 20 Sep 2011 20:15:58 +0000

Wow, thank you all. So many of your posts hit me right in the heart. We’re in our 60′s and I’m healthy, but my wife has a long long list of health problems that mostly go back to a brain tumour 11 years ago. It’s been 11 years of doctors, complaints, loneliness, loss of intimacy and sex, anger, frustration, guilt, tears and reconciliation, and so on.

I struggle terribly with all of this and have some very dark thoughts which leave me feeling ashamed and guilty. My wife is not the easiest person to care for, partly as she is a total loner (no friends and pretty much estranged from her family). So it all falls on me.

And I’m the first to admit that it’s not a natural fit for me. I come from a healthy family who didn’t make a big deal of illness, and I’m not the world’s most empathetic person. But I try to support my wife and give her the love she needs. And I try to give myself the love I need. But, boy it grinds me down after all these years.

Thank you all, carers and carees, and the very best of luck to you.

Graeme

By: Craig

Craig — Mon, 12 Sep 2011 05:53:00 +0000

I empathize with all the caregivers’ comments. My wife has many health problems, and it seems there are always more added to the list. Quite often I’ve been getting angry about the situation. Why her? Why me? Shouldn’t we be done with all this?

And my anger always turns to guilt for being frustrated at my situation, while she endures all the health problems. But taking the kids to church by myself, making meals, and keeping everyone else happy is very draining. I put myself at the bottom of the list of people I care for, since I complain the quietest. I wish I could get past being bitter and angry, but lately it’s been the norm.

Like many of you I don’t have others to talk to. Friends don’t want to hear it, since they’ve been hearing our problems for years. I can’t talk to my wife either, because she has her own problems to worry about. Movies find the chronically ill too depressing to talk about, so there isn’t any sympathy to find there either. And even church songs are all about having conquered the problems and praising God for His goodness.

Anyways, I’m hoping I’m not as angry tomorrow…

By: Eileen Newman

Eileen Newman — Sun, 28 Aug 2011 16:56:04 +0000

I could really identify with all of these posts and for me sometimes I feel so selfish as I have married such a wonderful and caring man. We have been married for five wonderful years and known eachother for six years. My husband is 20 years older than me and I never thought that this would cause a problem for me but in a way it has and that is why I do feel so guilty about sometimes the way I feel so much resentment. My husband has been diagnosed with chronic heart disease and is on tablets for the rest of his life so he has good and bad days. I suppose it is the responsbility of the mortgage and the household bills and running of the house that gets me down. We have reversed roles within our household which works and I can cope with this but sometimes it is the loneliness that I feel because nobody seems to understand how I feel when I am absolutely exhausted after a days work and trying to run the house too. Quite mentally exhausting. Anyway what I am after really is to have somewhere that other people men and women are coping with the same problems. I do love my husband very much and always will but he is obviously not the same man I married which is so sad and obviusly I am not the same woman he married. I seem to be angry most of the time. I would appreciate anybodys comments and also support groups that anyone knows of. Thanking you

By: Brenda

Brenda — Sat, 28 May 2011 16:24:56 +0000

My husband is in the hospital recovering from an illness. We are not used to being apart and it has been excruciating. He is doing well and will be back home-yet the last few days have been really rough on both of us-and that is because our separation anxiety is really holding on us. It is a good thing though even when it may seem we are being pesky. He will call me when he gets flustered and I do the same. And even when we are a little tired we take care of each other even if it is for a few minutes.

I said to him the other day-I hope you are not mad at me for calling. He said you know better than that-and I do. It is the same when he calls me. He did last weekend and I could tell something was wrong. I said what is the matter- and he replied “I am just bummed out; I am way over here and you are way over there.” I felt like crying because when he says those things that a woman needs and wants to hear from her spouse I just melt and remember why it is I love him so much and would tear down every mountain in the universe to get to him.

I know our situation is not as dire as everyone’s here is but I still wanted to share because I feel it is good to have such a good relationship with one’s spouse regardless of circumstances. Maybe if more couples would do that there would be less divorces.

By: Mike Nelson

Mike Nelson — Fri, 15 Apr 2011 16:08:16 +0000

Thomas,

I hope you “rant” more, in whatever ways you can. It sounds like you really need to let off some steam. I so hear your pain and your pleas. And you’re clearly a good, good person. I’m so sorry it’s such a hard struggle for you, and hope something shifts so you can find ways of coping and not being so hard on yourself for being in pain about it.

I know the guilt number well. I know it mostly from within myself. I’m trying to remember that guilt does not really do me or my wife any good. There’s absolutely no justifiable guilt in having the feelings we have about this deep pain and loss.

I asked my wife to go into couple’s therapy with me several months ago. Often, she does not feel well enough to go. But when we do go, though certainly not easy, it sheds light on some things for us. No, it’s certainly not “fixing” anything…but it’s a place for us to get back to being authentic with each other, all of it. I guess I’m lucky that my wife understands this is challenging for me. But none of us can know exactly what it’s like to be in the others’ shoes.

Incidentally, a strange twist came about for us. We went on a cruise a couple months ago (which was enormously hard on her…most travel we do is)…but the really odd piece is that I walked off the boat, but never walked off the boat. To this day, 11 weeks later, I’m still struggling with the bouncing and rocking motion of the boat. I’ve hence found out that I’m dealing with an extremely rare condition (Mal de Debarquement) that may or may not go away. I’m doing everything I can to try and find ways to “get off the boat,” and get back to feeling normal and healthy. In a strange sort of a way, though very unpleasant to deal with, and exhausting beyond belief, I’m gradually understanding just a teeny bit of what it may be like for my wife to be dealing with so much pain and fatigue ALL THE TIME. And no, it doesn’t make any of the issues that coincide with chronic and debilitating illness any easier to deal with. But it is helping me understand what she goes through.

I suspect it’s a lot about learning that love will rip our hearts open again and again. It’ll break our spirits, and it’ll find us singing in pain and joy we never would have thought existed.

I hope you and your wife find some ways to make this work. But, if you can, try to do things that help you so you don’t have to continue on a path of only entropy. Get the support you/she/both of you need, however that looks.

Take care,

Mike

By: Thomas Fox

Thomas Fox — Tue, 29 Mar 2011 12:41:36 +0000

After years of struggling my wife was diagnosed with Lupus. The pain, the rashes, the fatigue, and insomnia. I worked hard to please her advancing in my career so we could move closer to her childhood home. Leaving my friends and colleagues each time. The bar of tolerance moving ever higher, the ability to please her continuing to narrow. Eventually I advanced enough where my I could telecommute so she could be home, home to her was not our young family but her parent and friends.

I am not sick, I have guilt just for feeling the way I do right now. But sleeping on the sofa, the lack of sex life, the need to take on everything, the lack of civil interaction, and the isolation are weighing heavy on me. It cannot be even discussed without it being a miser contest. I guess I lose that, yep I have lost a lot.

I am guilty for not be brave enough, I guilty for not being strong enough, I am guilty for not being understanding enough, I am guilty for feeling isolated, I am guilty for still having desires, I am guilty for feeling my life is over, and mostly I am guilty of feeling so damn lonely.

I know my suffering is small compared to hers and others, I feel guilty for that also. I Love her I swore to God loyalty I only hope he give me the strength each day to wake up and face it again.

Sorry for my rant, but I am isolated and struggling. I see no clear path toward resolution only entropy. I am sharing out of selfishness, hoping it can act as a relief valve.

By: Katydid

Katydid — Wed, 23 Mar 2011 15:04:11 +0000

After reading all the posts above, I don’t know whether I feel any better about my husband’s chronic illnesses or feel worse because there is no cure for what I feel much less his condition. It is somewhat comforting to know that others are experiencing and dealing with the same thing I am, but I still waffle between anger and dispair.
My husband is one-of-the-good-guys, a gentle person but slightly self-centered by his own admission. He suffers chronic pain and takes strong pain meds to keep from being completely bed-ridden. All you caregivers know that pain meds are a blessing and a curse – a blessing to relieve the pain, but a curse for what it does to their personalities. The rollercoaster ride between being normally lucid and being drug-induced whacked out tests even the most stable caregiver. During one hospital stay, my spouse was offered his choice of painkillers afterwhich, he was Mr ChattyChuck. All I got was a cup of bad coffee, my own aspirin, and a straightback chair to sit in. I wanted to cry!
My spouse’s way to deal with his illness is to talk about it. All the time! At least it seems that way to me. Our whole lives revolve around how he feels, what he feels like eating, where we go, when we go, what we do, and on and on. I have to remind him that my wishes count, too. At least sometimes. At one point, I had to tell him that if he really needed to analyze his every ache and pain that he would have to find someone else to say it to. That I had soaked up as much complaining as I could stand. He was startled by my perception of his pain analysis. Of course, he would try not to analyze so much, but at this point, any complaining just about put me over the top.
I, like so many of you, feel guilty for the way I feel, for being healthy, for wanting this all to go away, for wanting the retired life I thought I would have at this age. I’m angry that I’ve done my best to make our life good, but it seems to be swirling down into a pit. I fight mild depression depending on who I hear from that is delightfully retired. I pray, (Dear God, give me strength! RIGHT NOW!) and I dream of the day when I might be free of all this heartache. I still work every day because, of course, we need the income, but mostly because we have to have the insurance. I can’t quit or change jobs because of his illness. I’m stuck in the vortex of chronic illness. Life wasn’t what I bargained for, but then life seldom is. Faith keeps me going but just like the little frog, I hit my share of sharp rocks with every bounce!