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

By 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 November 24, 2016 - 3:34pm

Hi everyone,
This is my first post. I feel guilty for having negative feelings when my husband has been kind to me when I am ill. But because I'm younger, I have a lot more energy than he does. I am 41 yrs old. He is 15 yrs older than I am. We were married for 3 yrs. We have never had sex yet, not once. We are Christians, so I naively thought, sex will just come since we honored God and saved it. (I'm a born again and I had a lot of sex before I committed to the Christian faith) I have had hesitance and regrets about staying in the relationship. I keep hoping it would get better, as he has hoped and promised. However, the reality has been - he doesn't participate in most of the social events, family events and physical activities that I want to do for the past 3 yrs. This is because he usually needs to be home, recovering from something- social anxiety, cold, stomach issues, early prostate cancer treatment, panic attacks, sinus infections, irritable bowel... etc. I still hope it will get better, but I've just lowering and lowering my expectations of what life can be for us. That makes me sad and depressed when I really think about it. Now at I'm at a point when he's sick and has to skip a family event again, inside I get angry and irritated at him. Sometimes I even make snide remarks, which I'm not proud of at all.

Help-
Frustratedandbored.

November 24, 2016 - 3:34pm
By November 10, 2016 - 7:19am

To have found this group for me is life saving, to know I'm not the only one who feels this way as ive been feeling like such a cow and so selfish.
I'm 36, my husband is 39. He has a 15 year daughter who comes to stay every week and we have two boys under 10. we have been together for 10 years this time and were childhood sweethearts with a 15 year break - long story.
He has been diagnosed with ankylosing degenerative spondylosis. He has always has back issues and what we have always known as arthritis of the spine. he has always been on medication, But he has still always been fit, muscly, toned, healthy as such, the joker. skip to now and his condition has worsened by 100%.
He can literally just about walk, and when he does its with a terrible lopsided jolting. To get up or sit down takes 20 mins. to go up stairs longer. He is 39 but has a 70 year old body. He has lost 2 stone due to anemia. they have tried all sorts of meds but nothing seems to help enough, steroids, injections. They are about to start him on a new biologic drug which we will have to inject at home every two weeks but not holding out much hope as they last super injection they gave him which they said lasted 99% of people two weeks lasted him 24 hours.
My problem is I'm struggling to cope with it all. Before it all got worse I would do most things anyway in the house and for all the kids, his included. but he would help out washing up or hovering. he could play with the kids or do bathtime. I also work from home and am studying law and psychology at uni from home.
now he cannot do anything, he is always in so much pain every movement hurts, or he is asleep. so I'm now mum and dad, as well as cook cleaner maid and carer. I feel he now has just given up, he feels a failure I know that and hates how he is, but instead of pushing on and trying he gives up and feels sorry for himself. he wants sympathy from me, but I just don't have it in me to give. I literally have nothing left. I do all the finances as well which at the moment because of his illness we are struggling to deal with, and am looking for another job.
I just feel I'm putting everything in and losing Kerry. I'm just here to serve everyone. whilst he just lays back and feels sorry for himself.
I feel so bad as I know he is in so much pain, and I know it isn't his fault or anything he can or could of done to change it but he just doesn't help himself. I think he is also depressed (maybe me also) as is always so miserable and me and the kids are always walking on eggshells around him. his face is constantly frowning and its such a drain. he is so negative, nothing positive comes out of his mouth in any day. and I don't have the energy to care for him the house and the kids but also be his mental help and bring him up. when he has the opportunity to do something with us as a family ie watching the eldest boy play hockey he choses to stay home to rest. Wheres my rest?
I have no family to support me, not many real friends and his family aren't really interested they just think get on with it. But living it is completely different. I'm 36 and feel my life is over. Our future is gone. We planned to when the kids were all grown to travel and see the places that we wouldn't want to take young kids to ie new York, Miami, vegas but now most of that is out the question as he can hardly move.
Its also quite embarrassing, I'm young and if you couldn't see his face you would think I was with an elderly man. so selfish I know and shallow.
Another thing is sex. I just don't feel attracted to him the same way anymore. I love him but it feels different. when I look at him I don't see my young husband I see an old man shuffling along.
I wish I could just suck it up and deal with it but its so hard. so knowing other people feel the same really does help. He just thinks I'm a horrible cow who has no sympathy and am hard. But I used to have, its just been going on so long now, and the pains he has I know about he tells me daily.
I'm sure I come across awfully as it has all kind of fell out my head on to this page so sorry if its a bit jumbled. its good to find people who understand.
onwards we must go.....x

November 10, 2016 - 7:19am
By November 1, 2016 - 3:10pm

Hi Everyone
This is my first post! I read through the comments and thoughts on here with such sadness but so much relief. Sad because others are going through exactly what I am going through but a relief to know that it is not just me that has such dark thoughts and feels so stuck and lonely.
My husband has a long term disability and several other serious health issues which makes life so difficult at times.
He has always been a negative person and cannot see the good in anything. He does suffer with chronic pain. His only outlet is me and he is beginning to vent more and more. In some ways he needs to vent but it hurts. Not physically but emotionally to be told over and over again how useless, waste of space etc etc I am.
The weekends are the worst, he just goes for me over and over again. There are times I feel so desperate my only way out seems to be hurting myself.
I stay because I love him and he needs me. Thank you so much for letting me say what is going on in my head - I just needed someone to listen who understands.

November 1, 2016 - 3:10pm
By October 31, 2016 - 11:00am

LINDAvera,
I am in the same boat to some extent.
Been in this situation for about 10 years.
No real medical care because all my non-compliant Diabetic husband wants to do is die, I think. He will only take meds so he smokes and doesn't exercise etc. Because he looks "ok" (for an old guy), and he doesn't socialize so nobody sees his long-term behavior, people don't really think he's that bad and I seem like I'm making more of it than it is. That's SUPER frustrating!
Dr's try, but he argues with them and refuses their attempts to get him on the right track.
Same problems here with feeling guilty, EXACT same sex life problems. But I can't tell him how I feel because that would hurt his feelings SO bad!
Yet I feel like I should be honest with him. Don't know what to do about that. . .
One thing I know is that in this life you are gonna have to serve somebody.
And more than once. If not this than some other.
If you can manage the caring but not the physical set-up, then change the part you can't manage: get a new situation.
Separate yourself from his finanacial and daily living situation by getting a place of your own. He can figure out how to file as "Disabled" and get help but also try his hardest to do his best to take care of his business, which he won't do if you are doing it. Period.
Then you can love him and come and be with him and care for him with a fresh and loving attitude, even though you'll still be exhausted.
Just an idea.

October 31, 2016 - 11:00am
By HERWriter Guide October 27, 2016 - 1:50pm

Hi Anon

Your husband needs a diagnosis and fast, so that he can begin treatment and hopefully end his aggression. Try to be as proactive as you can in getting appointments although I realize the one bad thing about universal health care is waiting times. 

In the meantime - stand up for yourself! I understand your husband is in pain and is scared but you are scared too. Tell him his behavior is not acceptable and he needs to change it. 

Please stay in touch with us

Susan

October 27, 2016 - 1:50pm
By October 26, 2016 - 1:56am

my spouse has been suffering from an undiagnosed illness for 4 months now. Our health care in Canada may be inexpensive, but it is very slow to see a specialist or to get any specialized tests. He has been getting a break out of hives every night, accompanied by difficulties breathing and pain in his chest. He has also quit smoking as a result of these issues 3 weeks ago.

This has caused a lot of stress on our relationship he still works full time and I am a full time student and take care of the home.

He gets in these moods a lot. It is really hard to be around him. It's like he blames me for his illness. He's curt and angry. He also has a particular way he likes things. He snaps at the kids once in a while, but most of the time I get blamed. If someone doesn't put their dish in the dishwasher, He snaps at me. It seems silly but tiny things like not putting my shoes in the closet, gives him anxiety and he says mean, hurtful things to me. "if you want to live like a pig, go somewhere else"
I have asked him to try and consider my feelings that this is hard on me too and he calls me selfish. He acknowledges that he treats me badly but says I need to just accept that this is the way things will be. He says sorry I am the brunt of his anger but he can't help it and he's tired of explaining over and over to me that he's angry because he doesn't feel well and I need to get over it and "not take it personally". I have been trying to do that but I am taking it personally and I'm feeling hurt and unloved and guilty and selfish all at once. The idea of caring for him through a major illness terrifies me. He also has been known to yell and throw things when he gets angry. How will I cope if his is serious? Here I go thinking of myself....
I don't know what to do. I have read some of the other posts on here about people suffering in much worse situations. I feel guilt and frustration daily. Is this normal behaviour? How do you deal with an angry sick person? How do you not take it personally after a while? My skin is wearing thin...

October 26, 2016 - 1:56am
By October 19, 2016 - 2:48pm

Thanks for your response Susan,

We're in Canada, so bankruptcy is a little different I believe. The majority of his debt is a private student line of credit which is capable of being discharged. I'm not sure what it is likely in the US but in Canada a partners loans before marriage never become the partners debts, so I would never be responsible for them. In terms of his credit, we realize that it will suck, but I have a trust fund that I will get access too shortly which I am planning to use towards purchasing a home. It would be solely in my name anyways because it is an inheritance and he will not be contributing financially to it. And when I mentioned marriage/kids I don't mean anytime soon, I would never do that while he was still this ill.

He is starting a new medication tonight (low dose naltrexone) and fingers crossed it will help. He is so frustrated about having no answers (as am I), it really affects both of our moods.

October 19, 2016 - 2:48pm
By HERWriter Guide October 18, 2016 - 1:03pm

Hi LINDAvera

Thank you for reaching out to us! 

I am very sorry you are going through such difficulties.  You and your partner really, really need to sit down and work out a plan. 

Don't marry him until his debt situation is worked out. Don't let his debts become yours. Sounds cold but don't. If you are in the US, filing bankruptcy will ruin his credit but end many of his debts but his student loans will remain. Bankruptcy does not allow student loan forgiveness in any capacity.  Don't even think about bringing kids into this scenario. That is completely unfair to them. 

I wish I had a magic wand for you to fix it all but I don't. All we can be is a place where you can talk and perhaps we can help you in some ways. 

But please start making a plan with your partner. If you are going to give this a go, you need a financial plan, as well as a plan of care for him and to work out his contributions to the household. Even if it's not financial, he can keep the house a pleasant place to come home to. If he can make a mess, he can clean the mess. Perhaps have dinner ready and some laundry done. Not only will this be good for you but also good for him. Everyone needs to feel purposeful. 

He can also look for work from home jobs that are legitimate. Virtual Vocations.com is a legitimate site with real home-based careers.

Please feel free to talk with us anytime. 

Best,

Susan

October 18, 2016 - 1:03pm
By October 15, 2016 - 7:51pm

Hi Everyone,

I'm new here. I've been thinking about writing in a forum like this for a long time but have avoided it for some reason. My partner has been ill for 2 years, and we've been together for about 3. Unsure what his diagnosis is, which has been really difficult. We thought it was Lyme disease for a while but he went through treatment, got a bit better, and then got worse again. So its back to the drawing board. They are investigating for narcolepsy right now. One of the hardest things is that its often months waiting between appointments where we can do nothing. He went to a sleep study and now has to wait a month before the results. And it was a 6 month wait to see the infectious disease specialist.

Anyways, things are complicated because I am a graduate student so my life is stressful and I make little to no money. My partner just had to quit his job because he was calling in sick for most of his shifts anyways. He has a massive amount of debt from college that I doubt he will ever be able to pay off, so he's thinking about filing for bankruptcy.

It's a real strain on me emotionally and mentally to be the caregiver. I am often at school for 8-10 hours a day, and I come home to a messy home, and he hasn't left. When he's at his worst he can be cruel and distant. Is hard because it doesnt always feel like a relationship, it feels like we share a living space. I have sacrificed so much for him, and he knows and he is grateful but its a difficult dynamic for a relationship. I know he feels guilty, and its difficult for me not to feel resentment occasionally, which then makes me feel guilty.

On top of this I don't have anyone close to me that I can talk to about it. Because he has no diagnosis it is really difficult to explain to people, so we just ignore it. I feel like i always have to lie to people that are close to me just to make things easier.

It affects our sex life. I love him so much but its hard to feel attraction when he is barely able to function. Plus often times it is the last thing on my mind. I feel so conflicted because often times I just wonder why I didn't end the relationship earlier - now I feel like I can't because he depends on me. I couldn't live with myself knowing that I would be abandoning him, and I do love him and know that we can be happy when he is well. I get particularly worried thinking about the future. I already struggle with having to take on the lions share of the housework and finances - that will only get worse if we have kids and I don't think our relationship would survive that.

Anyways, that was a jumble, I just feel like I need to talk to someone that understands. I feel like I can't be honest with my partner because I don't want to make him feel bad. If anyone ever wants to chat one-on-one I would be open to that.

October 15, 2016 - 7:51pm
By October 5, 2016 - 1:37am

Hi everyone,
I am new to this group so this is my first post. I am feeling very low at the moment, my partner who I have lived with for 5 years has a chronic illness ( I have known him a lot longer but we only decided to live together 5 years ago) He has rheumatoid and osteo arthritis, he started with this over 20yrs ago. When we first lived together he worked away in the week and I cared for him at the weekends as he was often in a lot of pain. He needed operations but was putting them off as work was tricky. Last December he was made redundant after 38yrs & as the company went into liquidation, we only had a small amount of redundancy from the government. He went to his consultant & decided now was a good time to have the operations. I also have a painful health issue and work full time which keeps me away from the home over 45hrs a week with travel time. I don't earn much so this year has needed a tight budget.My partner had the first operation in March which he is still recovering from & the second op in August. I am a natural care giver & I do all I can & I want to make his life as comfortable as possible.He is a very kind & caring man & hates I work as I do & he can't at the moment. You maybe wondering why I am commenting here, it's just that i'm struggling with it ALL. I want to come home to a normal house! I lived for 16years with just me & the children ( now left home) & then with my partner just at the weekends, now he is there all the time, it took a while for me to adjust to just that but now since March & the surgery I am struggling. I feel so guilty because caring for others is something I have always enjoyed doing so now I feel guilty because I need a break from it! I have no one to discuss this with as I don't have the time to see my close friends who I used to talk to about lifes woes. I do have one evening a week out of the home as I sing in a local community choir. He wouldn't stop me going anywhere but I don't like to leave him.What's upsetting me is that we had a very passionate relationship but now I look at him differently so our sex life has ground to a halt from what was a very active one. At first he would have been in too much pain so it was out of the question & that was ok but now he would like to but I can't! I see him as so different but I don't want to be like this. I look & see this fragile bloke, not like he was. I suppose it's understandable ? Poor chap, this isn't his fault & I feel crap but......
Also his very elderly father ( 90) comes to us every Sunday as he is alone & frail so it's a double care day.I am very fond of his father & we have the odd Sunday off & then feel guilty! I look at his dad & see my partner going that way & I hate the prospect.I cannot believe that a caring person like me would have such selfish thoughts, how nasty. My friends think I am a brilliant ' nurse' to him & I am good at looking after him but I'm tired of it all.It doesn't help that I am in pain ( long standing back & neck problems) & finding the menopause tough going.

October 5, 2016 - 1:37am

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