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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 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
By Lonelywife47 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 Lonelywife47 June 27, 2015 - 11:23am

Thank you for this post! I'm not alone

June 27, 2015 - 11:23am
By Lonelywife47 June 27, 2015 - 11:22am

Lisa

June 27, 2015 - 11:22am
By Susan Cody HERWriter Guide May 29, 2015 - 2:56pm

Hi Sarrah

Thank you for sharing here and I'm sure it felt good to get it off your chest.

Nobody is the person we married...age, jobs, circumstances, health, finances... things can change our personalities. Addiction can definitely change a person, I hope he has that sorted now. 

But in these circumstances , his illness becomes your illness but you don't have medications that can help and you don't get to rest. It's mentally and physically draining. He can turn to you for help but who do you talk to? 

Sarrah, you need support, anyway you can. Your 12 and 9 year old are old enough to help out chores, say emptying the dishwasher, sorting laundry and keep their rooms clean.  

I also think you should join a support group in your area where you can physically go out and meet people, have a coffee and talk to them. 

Do have any extra money for a sitter? So you can get away for an hour to just walk, hang out at a bookstore or meet a friend for a drink? If your husband is up and watching TV, he can certainly monitor the children. 

Can you reach out to family? 

I encourage you to read this very active thread we have for people going through what you are - please take a look and tell us what you think: 

http://www.empowher.com/community/ask/living-and-possibly-leaving-sick-s...

Best,

Susan

May 29, 2015 - 2:56pm
By missyl 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
By RachelC1585 October 30, 2014 - 10:22am

I know this group isn't very active, but I need to let it out.
My husband and I are newlyweds, we got married in July. We have dated off and on for about 10 years, his health issues were what drove us apart. He had severe sleep apnea and wouldn't use the mask to treat it. He would fall asleep all the time--if he sat longer than 20 minutes, he would nod off. We also had a son together--this caused a lot of issues. This time, I told him for this to work he had to take care of himself. Now he can stay wake during the day--its wonderful ! But..this has lead to other health issues popping up.
He has mental health issues on top of health issues. He has bipolar disorder (under control with medications), sleep apnea, type two diabetic with diabetic nerve pain and foot drop/numbness (which causes mobility issues) and low oxygen saturations levels (he had to be on home oxygen for a few months). And he can't work and get a very small disability payments-which means we are relying on government assistance and can't afford a car.
Its so hard--I love him but I am grieving over the husband he could have been. There is no one I can turn to--it feels like I am all alone. If I vent, its looked down upon. Thanks for letting me vent.

October 30, 2014 - 10:22am
By Susan Cody HERWriter Guide September 1, 2014 - 8:15am

Hi Carley

Thanks for sharing your story with us! 

You're right, you are both young and dealing with issues that young people shouldn't be dealing with. 

Are you getting treatment for your own mental health? 

Also, would you consider joining a caregiver's group, so that you also have support, while caring for your husband?  We can help to find one for you if you like! Do you have family helping you out?

Best,

Susan

September 1, 2014 - 8:15am

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

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