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Is your spouse chronically ill? How is it affecting you?

By HERWriter Guide March 3, 2018 - 12:00am

Hi All

Thanks to lonely46 for starting this group.

Living with a chronically ill partner can be devastatingly lonely and frustrating, and it's not something society really lets us talk about.

The issue is not about whether we love or care about our ill spouse, it's about the harsh "side effects" that the caregiver suffers. While it's never easy to live with chronic illness, it's also not easy for the caretaker.

Let's share stories about life as the caretaker and the hardships (as well as the joys) of life. We can find comfort and support in knowing that we're not alone.


Here is another resource on sick spouse

By April 13, 2016 - 2:49pm

So glad to find others in the same position. I feel so emotionally drained with it all.

April 13, 2016 - 2:49pm
By March 24, 2016 - 3:32pm

I decided I needed a place to share my thoughts on this topic, as I am dealing with a husband that has a chronic kidney disease, and four slipped discs in his back. He potentially has other conditions, we just haven't gotten the diagnosis for those yet. It really helped me today when I came across this page and saw that many of you are dealing with very similar situations as myself. It feels good to have a place to vent without making my hubby feel bad for having health problems. Sometimes a girl just HAS to get stuff of her chest though! My husband and I sometimes get into arguments because I get frustrated and I hate to admit it, but resentful, that I have to pick up all of the slack because he is sick seemingly all of the time. How do you all handle this without fighting? I have two young children, and I don't want them to witness our fights or be resentful towards their dad. He is a good man. I just feel like I am not getting the attention I deserve because he needs so much care and attention, and then he almost makes me feel selfish when I bring up the fact that I also have needs. I just want a little feedback from others dealing with similar situations, please! I feel for you all, by the way!

March 24, 2016 - 3:32pm
By March 2, 2016 - 9:51am

Seems like this is a place to vent a bit. I married my husband about 1.5 years ago. My second marriage after a 26-year marriage. He has tremors, suffers from biopolar type II which has been well-controlled with medication for years (probably the cause of the tremors), and has hereditary hearing loss. He has some cool little high-tech hearing aids so this is all OK. I was a bit leery about even dating him when he told me about his issues, but with everything controlled, I decided I shouldn't worry so much. After dating I knew what I was getting into and I married him because I love him, and because we had so much fun together doing adventurous things. The sheer joy I felt being with him was remarkable, and I felt blessed to have found someone so special. I still feel this way because he's a good man, but his health has taken a turn and I'm fearful of what life has in store for us. A couple of months ago, he came down with symptoms that left him barely able to walk. After seeing a couple of Drs. and several tests, he's been diagnosed with rheumatoid arthritis. While I feel terrible for him to be saddled with a debilitating, painful disease for the rest of his life, I also feel sorry for myself, and I feel guilty about this! Our dreams about what we were going to do during retirement, which is just 2-4 years away, are down the drain - traveling the world, sailing, hiking, exploring. I feel guilty about feeling sorry for myself because I'm not sick like he is, but I've already seen my life turn into being a nursemaid and caretaker. "The other night he couldn't squeeze a full bottle of mustard hard enough to get it out, so I had to do it for him. It's at this point already. He's still working, but he leaves work early each day and when he gets home, he goes directly to bed. I have to serve him dinner in bed on a tray and then he falls asleep around 7:30 pm. He has night sweats so now I'm going to have to wash the sheets every day. I have a home office and work 40 hours a week.

March 2, 2016 - 9:51am
By January 2, 2016 - 5:24pm

I'm glad you find this place, dared my husband 5yrs before I moved in, then within the past 3 years, he's had a back injury, missed work, quit his job & at new job got injured then quit again, my $ carried us through, he retrained/took classes using my funds, couldn't get work, went back to old type of job, diagnosed diabetic, doesn't want to exercise, eat right or stop drinking pop, has IBS, didn't like that job, quit again, got whooping cough, quit the job, next job he detested so had to go on anxiety pills & got diagnosed with osteoarthritis in both knees, needs surgery now, started another job across town, not happy there either and this Christmas season he's got a bad cold, for 2 wks now - and all through this & the hospital visits I stayed cheery, but I'm finally snapping!! I have fibromyalgia, osteoarthritis in both hips, back, and now in neck...stayed at same job, showed up every day, try to go to the gym at lunch....and now that I've cooked, cleaned, grocery shopped etc fir hristmas dinner for HIS parents.....the last couple of nights I've asked him to talk with me, to stay connected. He yelled at me "I don't have anything for you, nothing I don't even care enough to fight". He left it like that, it's left me alone, angry, resentful, he's tried the I'm sorry thing, but it's like he expects me to just get over it because he said that. Now that I haven't sucked it up & kept the attention on him, choosing to honor my own needs....he asked me "what the F is your problem?" But man oh man can he sit in front of the TV for hours! I got mad and said I was going away for the weekend, his response - whatever, turned the TV up louder. So here I sit alone, angry and very pissed off, we only married 7mths ago. Now the vacation we had planned for our 1yr will probably tank since he found out his new boss said no to vacation request.....so now , no job again, as he just said he will quit....super. no money for cacao or life. I feel like the very life is being sucked out of me & I'm supposed to dote on him hand & foot while maintaining my job and health issues which don't get mentioned because we'll, those are about me - not him. So here I sit in my room....venting.

January 2, 2016 - 5:24pm
By December 10, 2015 - 12:24pm

I had pancreatic cancer (whipple surgery) in 2003 followed by a total hysterectomy 6 months later. Never did I burden my husband with the details & never did he clean the house while I was laid-up in recovery. He cried to his friends about his fear of losing me and he did grocery shop (loves to do that). It was all about him. His loss. I had to make him leave the room because he was making me depressed & feeling like I was going to die - something I planned not to do. Is a horrible surgery to recover from with vomiting, pain and more. Sleep was the only relief I had for months. I asked for no visitors. He invited them anyway and I know it was because he wanted everyone to see him cry.

Here's the problem: He does have serious heart issues. Open-heart surgery for 4 bypasses and a valve repair backfired. 3 out of 4 arteries closed after 4 months and the valve is still leaking. He's worse off now than before. That's real. He's also had prostate cancer in 2003 (same year as my cancer), he's had pancreatitis, acoustic neuroma brain tumor, knee surgery & kidney stones. But......He also has more imagined illnesses that don't exist and runs to the doctor over things like a sore thumb. And he talks about them over-and-over (the real & imagined) to anyone who will listen. I hear it all day long. As a matter of fact, his health is all he wants to talk about. What I am saying is that he's a hypochondriac but with quite a lot of real health issues. Very confusing.

He has lost hearing in one ear (acoustic neuroma) and the other ear is weak even with a hearing aid. He'll ask a question on the other side of the room while I'm at the stove cooking. I'll answer. He'll make me repeat the question until I'm shouting. Then, he'll say, "You sound mad at me. I can't help it that I can't hear. My doctor said that you should answer me while closer." He doctor should tell him to ask a question while closer. I'm supposed to drop what I'm doing, run to his side and answer?

Recently, he hurt his back muscles during cardiac rehab. The world stopped and he can't do anything. But I've been getting treatment for my bad back. Doesn't matter. I needed to stop what I'm doing to harm my back because his hurts too. He even called me to come home during one of my weekly volunteer times because he said that he couldn't move. When I came home, he was moving , walking, etc.

He's an inconsiderate chronically ill person. He makes messes. I wipe the cabinets down and within a day, he has spilled something and lets the drips dry making more work for me. He just ignores his mess. That's just one example. He's sick, you see. However, he manages to play golf and takes golf trips with his buddies. Those bags are heavy to drag to & from airports.

He retired so he's home 24/7. Other than golf, he has no hobbies. He's just here. 2 years ago, he was on the road - coast to coast, so the house stayed clean.

I took him to the Cleveland Clinic for a 2nd evaluation after it was discovered that the local doc's handiwork on his heart failed. While there, he was demanding to the nurses. He hit that call button every 10 minutes or so. He coughed up a fish bone and insisted that it remain on his hospital tray for 3 days. He wanted everyone to see it. Gross.

He gets on my nerves. He makes life harder for me & I'm not in perfect health. My cancer is gone, but the effects of the whipple are lifelong. Even eating is difficult. So, I resent all of it. Then, I feel guilty for feeling the way that I feel - like I'm some cold-hearted monster.

When not with him, I'm more pleasant. My face relaxes. When with him, I'm tense and irritable. My social life (quite pleasant) is with lady pals and volunteering at a homeless shelter.

December 10, 2015 - 12:24pm
By October 18, 2015 - 12:19pm

I have been a caregiver off and on for three separate family members and commiserate with many of the stories here. I find that it helps to remember that as bad as it is for us it is far worse for our loved ones, two good books on the subject: Moving Violations and The Body Silent, The Body Silent especially as Oliver Sacks, author of The Man Who Mistook His Wife For a Hat, comments "The most powerful book of its kind I've ever read.... Extraordinary powers of observation, generalization, and depth.". Here is a link http://www.amazon.com/The-Body-Silent-Different-Disabled/dp/0393320421

October 18, 2015 - 12:19pm
By June 27, 2015 - 11:30am

I see me in all of you! Husband hurt back 10 years ago, addicted to prescription pills, anxiety, depression and just diagnosed with brain cancer and Parkinson's . While I work nights take care of house and 14 year old drive to all dr's. And take care of house. Then asked why I'm mad all the time!!

June 27, 2015 - 11:30am
By June 27, 2015 - 11:23am

Thank you for this post! I'm not alone

June 27, 2015 - 11:23am
By June 27, 2015 - 11:22am


June 27, 2015 - 11:22am
By May 29, 2015 - 12:14pm

I can relate to all of you so much. I am 39 years old with four children 12, 9, 5 and 1. I have been married to my husband for almost 15 years but have actually been with him for 20, since High School. The man I married was strong, pretty healthy, positive and motivated. Four years ago, he blew a disc in his back and he has never been the same. It has been chronic issues since that point including; panic attacks,anxiety, depression, prescription drug addiction, cellulitis in his leg, chronic coughs, surgery for an infected abcess, constant allergy and sinus problems. I cannot even remember them all. We have had major medical bills and it has taken a toll.

I have felt so lonely for so long. Along with all of his illnesses he is chronically tired. I mean... all. the. time. He goes to work every day (most of the time) but when he is home I am constantly catching him laying down. I feel so resentful most of the time. We have four young children and he often just checks out because he is tired. He is now being checked out for Chronic Fatigue syndrome. This is not the man I married. I know I took the same vows as all of you. For sickness and health. All I get is sickness. Our love life is dead and though I would never allow myself to go there, I do understand how emotional affairs start.

My husband is normally so consumed with all of his issues he forgets I have needs too. I am spent most of the time and I feel like my needs are always secondary to his. I had a rough pregnancy with our last child (whom was a BIG surprise by the way) and longed so badly for a little extra TLC. I got very little because he was anxious and depressed and battling a prescription drug addiction (though he would not admit at the time) so I was left uncared for most of the time.

When I should have compassion, there is resentment. I am so tired of looking at him laying in bed with his feet up watching TV while I run circles around this house and care for our children. I am told I am insensitive and rude and I probably am. I am just tired. Where do I go for reprieve and care. I can't get it from him. I am drained. Anything I have left in me, I give my children. They too are tired of their dad being "tired" all the time.

I just need guidance. What do I do? Each day my loving feelings toward my spouse grow colder and colder. I fear one day..... they will be too far gone to ever get back.

May 29, 2015 - 12:14pm

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