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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 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 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
By September 26, 2016 - 6:01pm

I try to stay positive but I'm getting tired, really tired. My husband suffered a debilitating injury in 2001, then developed chronic nerve pain then became disabled to the point where he had to retire. I am working full time, and do nearly everything in our house. My daughter also works full time and does a lot to help but his pain has taken over my life as well. I'm also starting to be concerned about my own health as I feel my body is breaking down, as is my spirit. Thanks for letting me vent.

September 26, 2016 - 6:01pm
By September 18, 2016 - 10:58am

These are not horrible thoughts just truthfull ones. I'm sure you have already been in touch with the Parkinson support group but if not do it now. Your thinking is both reasonable and understandable. If you can't get your husband to engage with you about his and your forward planning can an independent person, care professional, social worker, GP, minister help. What are the options in your area? Is there assisted living close by? Is there a development you could both move to which is purpose built? Your husband us probably terrified you will abandon him to a care home. It's difficult but if you can let him know you have his safety and welfare as priority, that you don't want him dead - that statement is probably self pity/guilt inducing and manipulative on his part. If this fails could you write him a letter telling him how much you care for him and want him to be safe and have a good quality of life. Also let him know this is a two-way relationship and in order to support and care for him you MUST care for yourself. I hope this helps if only to let you know you to have a very precious life to live and with compromise you may be able to move forward together but apart.

September 18, 2016 - 10:58am
By September 6, 2016 - 8:39am

Hi all - I was searching on-line this morning for anything that might help me better cope and deal with the impact of my wife's 10+ year illness on our marriage, and I came across this site. Like HusbandandDad I'm a man, so I hope it's ok to post here.

So uplifting to know there are others out there dealing with similar issues. I'd very much appreciate any advice or lessons learned from others about how to keep myself in the right frame of mind to be a good husband and caregiver, while trying to take care of my own needs as well.

September 6, 2016 - 8:39am
By August 18, 2016 - 8:01pm

This is so painful and I hope that I can get some relief and perhaps some advice on how to deal with this issue. I am in my late 50's and my husband in his early 60's. We have been married for 8 years and he has been ill for about 6 of them. Mostly it's Parkinson and he has the added aspect of having a cervical laminectomy which leaves him unbalanced with a walker and reticent to use a wheelchair. I think we have worked out the mechanics of him being home while I work but is it time for another solution? He does not want to go to a nursing home or anywhere else for that matter (a poor experience with his mom does not help). I have done what I think I can to keep him remain at home. Is my thinking he should go to an assisted living place selfish? Is it my needs or his that I am thinking of? I am concerned about his safety and my sanity. Neither of us are happy right now. And sadly he has accused me of waiting for him to die. Is that true? What am I anticipating to happen? To what end? Thanks for giving me a place to voice my horrible thoughts.

August 18, 2016 - 8:01pm
By August 18, 2016 - 3:41pm

Husband & Dad-- Just recently became a member and I've sensed how one's livelihood is so very diminished by what I would refer to as caregiver brown- out or burn-out.
Perhaps reading or just being inundated helps but talking to someone about your spouses disease or disorder to a doctor helped me at a time when things were a huge unknown
I retired and hoped for the best two years ago. knowing my wife's battle with an auto-immune disease known as vasculitis was all consuming to her life. On that premise we carry on but like yourself I deal with my own feelings complicating my brand of care which is or should be putting her first. I'll describe the effects if I may.
The things-the good things in a marriage of 40 years are fading and leaving me now as they fade to find new interests to if you will replace the ones going. My livelihood is at stake and not to sound selfish needs a fresh page.
I have new acquaintances, old friends, some creative skills and need to go on walks by myself to clear the palate -- It really is self preservation Lets call it what it is.
When not a single soul can help you must circle the wagon and safeguard yourself against anxiety -- Keep active my freind,

August 18, 2016 - 3:41pm
By August 10, 2016 - 9:20pm

This morning I felt lonely, desperate, and trapped in the emotional pit of caring for someone, wondering when enough will ever be enough. Then, I came across peoples' posts here and I am astonished to learn that there are others like me. I really relate to having only 25% of my husband. We're both young, in our late 20s, married after 2yrs, and are with out children. I had my battles with Depression and Anxiety and figured out my own care plan that works. However, two years ago (months before our marriage) his mental health started to decline. He developed mood swings, anger fits, days where he was glued to his chair in dark depression, and was an uphill battle for him to admit anything was wrong.

Skip to today, 1.5 yrs later, and he continues to worsen despite therapy, medication, and lifestyle changes. I'm at my wits end with him. He has anxiety attacks so bad he shakes uncontrollably in public. Mornings are the worst, he wakes up incredibly grouchy and lashes out at me verbally over him losing his "glass" for example, he then forgets about what he is saying, then mood flips and is happy but confused why I'm upset. Every day I try to help him and remind him of his mood stabilizers, and I'm snapped at. He tries to control situations he fears by being nasty and I'm too tired sometimes to respond properly. For the last two years I have been the provider, home cleaner, caretaker, and a therapist to him. Sometimes his depression talks for him, that he sees no point to his life, I've even called the cops in attempt to get him help. This would be easier if I wasn't so alone. He pushed his friends away and mine are tired of the drama. Ever since I met him, when he had his life together, my family has snuffed him for being poor. Even now, my family ridicules me for who I married and constantly tell me to divorce him. I suffered through depression, but his is different. Last month he became overwhelmed by the thought that I had left him so he broke half the dishes. He then cut himself up. Why the cops didn't take him to a hospital is beyond me. We've switched doctors, meds, and treatments, even his label; OCD, BPD, MDD, GAD. I'm always trying to find some label for his 'disorder'; current one is now autism, but what if his label is just 'Terrible-Person-Syndrome'. I hate myself and I'm relapsing into depression, emotional eating way out of control, I'm in a mess and I don't know what to do alone. I try to take life day by day, remind him of his pills, his appointments, and hope that someday I'll be free of his emotional prison. I remember why I fell in love; he's brilliant, funny, and we have great intellectual chemistry. Even now we still maintain some intimacy but it is very strained. I guess I'm afraid I made a lifetime commitment to be someones punching bag and pillow, who never gets to live.

August 10, 2016 - 9:20pm

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