Caring for A Chronically Ill Spouse

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.

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.

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

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...

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

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.

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

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.

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!

It's so good to have this conversation ongoing in whatever form it carries forth with. Thank you, Matthew, for this post, for your recognition of all parties involved, and for your candor.

My wife's illness continues, and I am quite sure (or sometimes I wonder if I'm just crazy?) it is getting increasingly debilitating. And there are good times too, times where she is able to go out with me and enjoy a nice time out or a nice vacation...but inevitably, any good times are followed by weeks and weeks of hard times with excruciating pain and fatigue.

I am visiting with family this week...my 73 year old father is healthy, as are my sister, her husband and four kids. It's an odd shift to be with people who are healthy and living lives normally...and I remember, often many times each hour, my wife is home in pain and struggling to just get through each day. I know no other thing to do than to pray and share about it.

Greetings,

It is good that this type of forum exists so that we can see that we are not alone. It is also sad that there is the need for such things.

My wife has Fibro and I knew of this when we married. 1 week after our honeymoon, she came down with an upper respiratory infection, followed by the flu, followed by pneumonia, followed by mono. She became bedridden for a few months, lost her job and I went nuts with emotions. Anger, grief, worry that I'd lose my job because of the time lost caring for her.

Over the years, with the help of some dedicated doctors, she becomes more and more stable; but her whole life changed. Her immune system is shot, so she continually gets sick with infections, colds, stomach bugs, you name it, she gets it. In college, we had a sad saying that she had a rain cloud over her head, because if something bad were to happen, it would inevitably happen to her. ER visits are too numerous to count.

It's so very hard to watch her suffer and not be able to do anything. Like the original post, I want to fix it. It hurts, but I wish I knew what she felt. I am healthy, robust, active man, so I have no idea what she experiences with all the regular sickness and the Fibro.

I do get angry often. It's really dificult not to. When she calls me at work, it's because she's feeling sick or needs me to bring something home because she's too tired. I admit, I've lost my temper at times and even wanted to tell her to quit faking it, suck it up, deal with it, and move on. But, as all the sufferers out there know, you can't make it go away just by thinking it.

It's real and it hurts. We all just need to thank our Maker for what we do have and take it one day at a time.

To all the caregivers, bless you for the patience, effort and obviously, love.

To all the carereceivers, bless you for putting up with us caregivers. We don't understand it all, but we love you and want you to be at peace, and we will do _anything_ to make that happen...even if we're grumbling about it. We're not perfect, but we love you with all our hearts.

I had to comment on several posts. First, the poem by Charlie C is amazing. I'm a professional poet and can tell you that is good stuff. I am also chronically ill and have a spouse who has really had his fair share. He's fed up and he lets me know. Unlike most of you, I was well when we got married. I was 23 and he was 25. We had two little boys before I got sick. Now, I'm bedridden most of the time. I have a very rare auto immune disease that has NO treatment. I take meds for my symptoms but that's all I can do. It is potentially fatal but no doctor knows for sure when that will happen...So we live each day not knowing if i'll improve or not. Die or not. Etc.

Our boys are 4 and 6. They are used to me being sick but I know it's affecting them greatly. My husband doesn't like to care for me much. His priorities are work and the kids. I come dead last, and I totally accept and understand that. But it makes it very hard and lonely. I have no family or friends to help out either.

I'm still expected to take care of myself when I can't. I can't wash my hair always (I do shower everyday. That is a must!), or keep my room tidy (forget about the rest of the house). The kids' clothes are always wrinkled because no one folds the laundry. And I worry that they will be made fun of in class eventually.

I have to go an hour and a half away to get IV therapy. I'm supposed to go weekly but my husband won't take me anymore. He only did for a couple of months and then said he was too busy. I'm understanding his side more and more but I don't know what I'm supposed to do. He can't help me and no one else is around. I'm getting desperate. I just need some company and help here and there...I don't ask for much...and I never know if I'm asking too much from my husband since his replies are usually very short and nasty. Thanks for letting me vent. And thanks for sharing your stories.

Thank you so much for having this post, and to the rest of you, who've responded in your own way.

My wife was diagnosed with Fibromyalgia and CFS a year and a half ago. Up to that point, things were getting worse and worse, and no one could tell us anything conclusive. Since the diagnosis, despite attempts at "making it better," including dietary changes, strong pain killers, visits to other doctors to look for deeper causes of symptoms (liver issues were found, heavy metals have been found), things only continue to worsen. She is more and more wiped out by something like simply getting out of bed for awhile.

I'm trying my best to find the balance between self care and care for her. I'm in therapy, and doing things to take care of myself (like spending time with friends, etc), but still, it's really tough. I feel so guilty when I leave her at home ONE MORE TIME; I feel like such a failure that I'm not able to end her pain once and for all.

Last night, on the way home from the doctor, sixty miles away, I suggested we go over to the lake, where I've been enjoying going for many years. In our eight years together, we had yet to see the lake together. We took the necessary detour to get to the lake, and she was in awe by the beauty of it. We sat by the water, on a picnic bench, and watched the sunset, and dreamed together of the times we will be able to do more of that. We drove through the campground, looked at sites, and talked of camping possibilities for the future. On the way home from the lake, she began to feel sick, and became very tired, very fast. And today, she's wiped out as a result of our expedition yesterday. I am feeling more and more like I'm alone...but then, I try to keep close to my heart the lovely times we DO get to spend together, like being by the lake, and dreaming together. It's so hard for me not to take the intricacies of her illness personally...but I need to try, try anything I can not to go to that place in my mind. Our social life is almost non-existent; same with our sex life...and so often, we eat dinner together in the bedroom because it's too hard for her to leave the bedroom. Not for lack of trying, on either of our parts.

For today, I will hold myself and all other caregiver spouses and their loved ones who are ill in the light of love and deepest kindness. I often struggle, and know nothing else to do but to remember the wonderful times and keep the candle of hope and love lit in my heart. Most of the time, it feels so difficult to do this. Still, I will try anyway.

I too was diagnosed with arthritis when I was 13. Ever since I met my husband I told him. I understand how hard it is for my husband and I try to help and support him as much as I can.

Sharon,

I'm commenting from the other side. :o) I was recently diagnosed with yet another problem (Lupus). Prior to that I was very difficult to live with.

For me it was a combination of pain and anger. I too wanted to die, and said something very similar to my husband. "You and the kids will get the money, have a nice trip wherever you three go! It won't matter to me, I'll be dead!".

Yes the verbal abuse was bad and the 2 y.o. is at a point now where he hears us raise our voice in ANY discussion and immediately tells us to stop. Physical abuse reared it's ugly head too. I thank God that getting a new medication helped the situation immensely! My husband never stopped saying I love you. Believe it or not THAT helped me when the fury was at it's worse.

I am diabetic, physically handicapped, suffer from chronic pain and have not felt normal in over 10 years. There is no excuse for my actions, none, but our faith has helped as well as our ability to forgive.

Have faith Sharon. Amazing but true.

Sharon, I would say your poor husband is in the anger stage of grief. I'm not a licensed psychologist, but it seems fairly obvious to me.

He's very ill, close to dying, and he just lost a major portion of his body - he's grieving his age and lost vigor. That kind of thing could make anyone angry.

My recommendation would be to seek professional grief counseling. If your husband won't go, then do it yourself to find out how you can make your life better.

Hi everyone,
i'm not sure if i'm doing this right but here goes,
i care for my husband who is 49 i am 43 he has emphysema, pulmonary fibrosis and this year had most of his right lung removed, he is on oxygen 24/7. he has had anger issues and gets moody for as long as i've known him but these last few months his verbal abuse is really bad, me and the kids have been there for him i have cared for him loved him supported him i put everything into making sure he was ok but he couldn't see what he has and i become his target and was to blame for everything, he kept walking around everyday saying i wanted him dead and he should have died in surgery it would be better than living with me, he made my birthday horrible and i was in tears all day. he then started saying i will get my wish and a few days later he took heaps of pills and ended up in hospital, he is now on mood stabilizers and is back at home, he isn't yelling at me but things are no better he wont talk about why he did what he did and i'm finding it hard to forgive him for all the abuse... there has been no love life in our relationship for over a year and a half, it just feels like i am his nurse and nothing more...
i suffer from panic attacks and his bad moods make them worse, he can't see that we are all affected by his illness he thinks its just him going through it all...
i don't know what to do

My wife has lupus and rheumatoid arthritis. I was informed of this before I got involved, but she was in remission at the time and I had NO idea what it really meant. Between us we have 5 daughters and it feels like there is never time for a break. Our kids are in school all day and I'm in school. She stays home all day and then jumps on me when I return. I know she is hurting and angry and frustrated with her situation, but it is SOOOOOOO hard not to tell her to go stuff it when she demands more of me than I can manage.
One of her girls has Asberger's syndrome and we suspect that my wife also has it. Fun.
I won't leave her, but it feels like abuse many days. She is in so much distress that she doesn't she that I am also suffering. When I tell her how I feel she always compares it to her own struggles. How the hell can I compete with that!
Why can't I have a night out without her? She tells me that she wants me to go out with her instead, but those night get cancelled often because of her illness.
Thank you for reading to my rant. I don't really expect a solution.
-M

Very perceptive blog post from Cory H. I'd like to suggest for husbands, wives or partners of a person with chronic illness and/or disability, to take time for themselves by checking out the Well Spouse Association, and its online forum, here: http://wellspouse.org/forums

12/20/09

Why?

How blessed are we
Who live our lives
Free of pain and suffering.
Father of Life
I pray each day
You take her pain away
And wonder,
Why, oh God, must she suffer so?

She, the one You joined to me.
My partner in life.
Her agony
Is hard for me to bear.
But the pain I feel for her,
Is nothing when compared
To her suffering.
Why, oh God, must she suffer so?

In my life
I have never known anyone
That has suffered
So much
For so long.
Job has nothing on her.
Her strength to endure…
Incredible.
Why, oh God, must she suffer so?

Decades, three, have come and gone
Since her suffering began.
Countless prayers for healing
Have returned empty.
I wonder, are You deaf?
Have You no mercy?
Help me understand,
Why, oh God, must she suffer so?

Her temper,
Raw and inflamed,
Like her swollen limbs,
Lashes out at those she loves.
Then, in response,
She collapses
In despair.
Why, oh God, must she suffer so?

You know what it’s like,
At night,
While she sleeps,
To hear her pain filled sighs,
With every breath.
Do You hear me crying?
So many times I’ve cried,
“Why, oh God, must she suffer so?”

Poppy potions
And toxic concoctions
To numb the pain
Have taken their toll
On her
And us all.
She’s not the same,
You know…..

Nor am I.

I have learned I have to spend time for myself. My husband is able to do somethings, but mostly tired out so I must do the physical work. I have friends that help me cope too.

Thank you sooooooo very much! I am diabetic (40 years now), handicapped, severe chronic pain sufferer (from accident), arthritis, Neuropathy on both feet and partial on left hand and now all those problems have gotten worse since the birth of our son in 2006. He, my husband, too knew of my health problems before we got married. In the beginning he was doing great, but now I feel that he does not really listen to me anymore when I try to talk to him, or that he pushes too hard on trying to "take care" of me. I think the biggest problem are my feelings in general. instead of a hug and kind words I get a "scolding" or a distant "oh your going to be just fine". I try to give helpful hints and advice I've received to make things better between us and I feel like it is in one ear and out the other. Depression is high on the list for chronically ill patients. I'm sure you know that too. I'm trying so hard to keep my head on straight and hoping I can get his back on! I will be forwarding your advice and I pray that it hits home for him. Many people think that we are stupid for having a baby with all these problems knowing full well that my issues could/would worsen with a pregnancy. But we did it and have no regrets. Sometimes I look at our son and know that mommy and daddy's relationship will survive. We just need to find the correct band-aids and ace bandages to keep it together That's all!! I know that your words will definitely be a start in the right direction!!!! Thanks again

It's nice to know that my hubby isn't the only one who wishes he could make his wife healthy. He also married me knowing I wasn't perfect...