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

By Susan Cody HERWriter Guide June 1, 2011 - 8:37am

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.

Best,
~Susan

By WhereAmI May 23, 2016 - 11:05am

So, I'm new here. Just came across this page as I again sit in a hospital chair watching my husband sleep.
I have to be honest, this feels really weird for me to do but I have to try.
I am 36 years old and have been married for 16 years. My husband is the same age.
He was diagnosed with Crohn's decease at the age of 23. Ever since then it's been down hill in a way and a definite uphill battle. To make matters better... My 13 year old son got diagnosed with Crohn's as well at the age of 4. ( have a 16 year old who KNOCK on WOOD IS HEALTHY). To get to the point, my husband has had many complications that have been dealt with with steroids, shots of biological medicines, beside also getting surgery 2 times in order to remove bowl and some colon sections.
I FEEL LIKE CRYING EVERYDAY, and I DO. Now, May 23, 2016 sitting in this chair again dealing with SURGERY TALK AGAIN. I feel I'm about to just drop. BUT, I have to hold it together. My kids have suffered side effects to the stress this brings to the household. Now, this is my thing... Why does my husband always say to me that HE'S THE ONE LAYING ON THE BED, he's the one who is hurting and he's the one who has to deal with surgery. NOT US. THIS HURTS. I can't seem to agree with him in that. I know he is the sick one but I feel HIS ILLNESS HAD MADE ME SICK. I have so much to say I actually feel like I'm ranting. I need a minute to chill. Just writing this got my eyes watery. Gotta walk away.

May 23, 2016 - 11:05am
By EstherBulis May 15, 2016 - 10:13am

You stated my situation exactly! But what do you do to rid yourself of the anger?

May 15, 2016 - 10:13am
By Kerri April 14, 2016 - 9:11pm

I have been married over 25 years. What I was attracted to him about was how active he was. Now after 3 back surgeries from plumbing and welding, he is in constant pain and lives on Norco. He does not walk, which I think would be helpful and he just watches TV or plays on the computer constantly. I am very active but I am starting to get depressed because he is so inactive. He also calls in sick to work if he has any little cold. It is so frustrating. I grew up that you go to work unless you are puking. How can I deal with this without getting really angry? I am trying to be supportive but I end up comparing him to my dad who is 70 and is still active. I don't think he ever called into work sick. I feel like my husband is opposite of who I want him to be. It is so hard for me as a controlling person to accept this. I don't want to be controlling but I feel so lonely at times.

April 14, 2016 - 9:11pm
By noideaatall 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 Klynn82 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 Susan Cody HERWriter Guide March 2, 2016 - 3:56pm

Hi ANNB

Don't feel guilty about feeling sorry for yourself - it's ok! That's a normal emotion.  Even though you knew what you were in for (in a way) the reality can be much harsher and you're only human; you may not have thought that things would get so bad so quickly.  Both of you are going through a really rough time. 

We have a more active thread about this topic that you can take a look at here: http://www.empowher.com/community/ask/living-and-possibly-leaving-sick-spouse-heartfelt-story-reader-looking-advice

Good luck to you-

Susan

March 2, 2016 - 3:56pm
By ANNB 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 Wornout17 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 Kacy12 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 Emily Young 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

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Spouses dealing with chronically ill spouses, without sexually or emotionally connections

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