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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 July 20, 2017 - 3:29pm

My boyfriend of 6 years suffers from congestive heart failure from the heart attack he had 10 years ago and also chronic depression. He had had this chronic illness when we met, but last year he was admitted to hospital due to pneumonia. He was on life support for 2 weeks, and it has worsened his condition significantly. He can't do much walking even around the house and needs the wheelchair to help him move around. He takes the electric cart at grocery store and is in constant heart pain. He can't sleep well and feels drowning when sitting or lying in wrong position. On top of it, he suffers from depression. Never diagnosed but he feels depressed from time to time and even occasionally feeling tired of life (although not actively suicidal). He is on welfare and lives off $400 dollars every month. We live in different cities, and are not married yet. Right now, I support him with several big purchases such as reclining bed to help him sleep (instead of having to sleep on a chair) and some other stuffs. Part of me is terribly terrified to be married to a life of caretaking, knowing what strength is required of me. Part of me is paralyzed not knowing what to do because of the affection I feel for him and the understanding that he, too, deserves to be loved and have someone by his side. He is a very good and caring man but suffers from many life traumas. In his younger days (he is 15 years older than me and in his mid 40s), he had been through a bipolar wife, a broken marriage, a lost custody, a sexual assault, and a life-altering surgery (his heart attack). The reason we are not married yet is that he can't even afford to divorce his wife, although they haven't been in contact for 10 years.

I feel terribly alone, paralyzed and unknowing what to do. His baggages, physical health and mental health force me to always be vigilant all the time - looking for signs of self-harm or outbursts of depression. Our long distance relationship eliminates physical intimacy. I feel very lonely in this relationship but do not believe that he doesn't deserve to have his heart broken. I'm not looking for a solution hand-out, but this is just the first time I've ever said these things out loud. I am not even seek comfort from anyone listening or reading this. Just maybe if you are in the same position or worse (hopefully better), you will feel less lonely.

Because if we are all lonely, then we are together in that too.

July 20, 2017 - 3:29pm
By July 7, 2017 - 5:50pm

I completely understand. My partner of 16 years was diagnosed with a very rare disease in 2012. For a few years prior to that we knew something was very wrong. At this point, I am 100% financially responsible for our life. I must do most things for her, open jars, laundry, dressing, and when we go out it is such a drain to have to handle a scooter. On top of this, she still falls frequently leading to other injuries to manage. I am tired, lonely, fearful, resentful and depressed thinking of the future. I am only 42 and cannot imagine the next decades being stuck like this, yet I haven't identified any alternatives. My focus is on earning enough to get full time help so I can have some downtime. Friends don't get it and my only other family members, my mom and grandma, also rely on me for emotional and financial support. I am at a point where I am looking for ways or other people that can emotionally support me and make me feel human again...and not just like a full time, on call caregiver. Emotional and physical intimacy have been missing from my life for 7 years...and I miss it.

July 7, 2017 - 5:50pm
By May 26, 2017 - 3:18am

Hello! My soon to be husband has two debilitating diseases that he has had for most of his life. For the majority of our relationship, he has had both of them under control and it has been a minimal effect on our relationship. But lately it has been really really difficult. Even on a good week we spend at least two nights a week unable to go out and do anything because he is in so much discomfort. I know that our future is going to be much different than my friends and I am ready to stand by him in sickness and health but I definintely need to develop a support system myself. My friends just can't possibly understand what we go through. I am hoping to find someone I can email with who understands what it is like and needs someone to talk to too. Anyway hope everyone reading this has a lovely day today :)

May 26, 2017 - 3:18am
By April 7, 2017 - 1:59pm

Hi dnteach. I feel the same way that you do...completely understand. My husband (who I just married 1/5 yrs ago, been with for 6 yrs) has congestive heart failure. Although I understand that I will never know how he feels, I am the one he takes it out on every night he comes home and feels crappy. Because someone does not feel well and are sick, doesn't give them the right to bring others down with them. To me, that isn't love. (I had cancer 3 yrs ago, so I know what it's like to be sick and I wasn't like that going through chemo and radiation). I think some people just feel better if they can make the ones closest to them feel rotten along with them. It's sad. BUT, I understand where you are coming from and if you ever need to talk, feel free to email me.

April 7, 2017 - 1:59pm
By April 5, 2017 - 2:25pm

Hi Grace, My name is Jen and my husband has suffered with migraines for almost 30 years. We have 3 children now and I feel like i'm drowning!!!!! I feel alone! It encouraged me to see that I am really not because migraines is something that mostly women suffer from and i didn't think I was going to find someone else that knows how i feel. I hope your husbands migraines have gotten better since you posted last. Keep in touch so we can help each other stay sane! lol

April 5, 2017 - 2:25pm
By February 21, 2017 - 9:24am

I feel like I am suffocating. I found this group because I was googling about chronically ill spouses.
My husband has chronic migraines. He has had migraines for years, but the frequency has increased over the past 6 months or so. He has at least one migraine a week, with the duration of each one lasting at least a day, sometimes three. Half his life is spent suffering with a migraine, completely incapacitated, and completely absent from our "normal" lives.
Half my life is spent picking up the pieces and carrying his share. I am so sad to see him in such pain. It is affecting our young son, as he often tells me he is sick or has a headache. I am also pregnant, so I am not sure how we're I'm going to carry the load when our baby arrives in a couple of months. At least my son is self-sufficient and is pretty helpful. Though, honestly, a lot of times I feel like my son and I are partners, not me and my husband. And that's not fair to a 7 year old!
I am also worried my husband will be fired soon for taking too much time off from work due to the migraines. He is missing at least a day per week now. No matter how good of an employee he may be when he is feeling good, that's hard to overlook. I work full time in a pretty good job, but I don't think that I can shoulder all the expenses myself if he loses his job (especially with a new baby and partially un-paid maternity leave coming up.)
He has missed my doctor's appointments because of migraines. He has missed our son's events. He feels terrible for days on end due to the headache, then has a day of recovery where he is not himself, and is usually moody and tired in the day or days preceding each migraine. Our whole lives are centered around this. I don't know what to do. We are still relatively young and our child is young (and one, not even born yet). I am so sad at the thought of this being our reality for the next 20 years or more.

February 21, 2017 - 9:24am
By February 4, 2017 - 3:05pm

Hello all,

Soon after reconnecting with a man that I had a loose friendship with for several years, this past October, he was diagnosed with Lupus.

I've had joint inflammation in the past - and had even been tested for Lupus myself. I was out of work for 4 months and I felt pretty bad but I haven't been that ill in several years. I had even been on some of the same meds that he's taking now, so I thought I'd be able to understand him and help him to accept his new diagnosis. I tried to constantly reassure him that he'd have better days and that I still respected and saw him as a strong man.

Just prior to Christmas he disappeared. His last words to me were "You're so beautiful." He has not returned any of my messages, nor has he reached out to me since then. I tried to remain supportive, still messaging him to encourage him through the silence. At times I told him that I was frustrated because I wanted to remain honest but he didn't respond to that either. I know that he's getting my messages - hasn't blocked me or anything but it's been over a month now since I've heard from him and I don't know what to do. If he weren't ill, I would've moved on because if I have to ask where I stand, then I should know. Because he's ill and I know that he was having a hard time with it, I don't know how to be. I didn't feel like his silence was personal but now I'm starting to feel like it is. I feel like I' going crazy.

February 4, 2017 - 3:05pm
By January 31, 2017 - 8:49am

I am sitting here thinking "wow" as all of you could be writing about my life in some form or another. My husband has been chronically ill for the past several years. I can't being to cover all his issues here, but a synopsis: First they thought Lupus (I know, it's never Lupus), then he was diagnosed with Gout. Then he has chronic pain so they are now thinking RA maybe or some undiagnosed auto-immune issue due to the severe rash he gets on his face. But he's had 2 massive hospital stays (and about 25 mini stays) with organ failure (was on life support for a week in 2015). To add to the complexity, he has a past with drugs and alcohol which has taken a toll on his body/organs although he refuses to admit it. He was on prednisone (high doses) for nearly 3 years which caused deterioration in his hip and a subsequent hip replacement at 49 years old. He does nothing to help himself get better, only sits in our basement watching TV and complaining how bad he feels. We have no children of our own (all grown from separate marriages). He never wants to leave the house (I think he may have become a bit agoraphobic). I am flying solo to any event we are invited to. I am still young and attractive and feel like my life is passing me by. He was approved for disability (social security) last year so any thoughts of him getting back to work and a life outside the home are now dead. He feels because he's on SSD he's helping to support us. Not even close. While I do have a very good job, I am responsible for EVERY single bill, task, or problem that arises. He refuses to see a counselor (tried once but they were pushy religious). I have seen a counselor only to realize that I didn't sign up for this (we have only been married a few years) and their advice was to leave him. For better or worse they say. But does that mean I have to give up my life because he refuses to live his? There are so many people worse off than he is, but that's not how he sees it. At this point, we feel like roommates as he's not interested in intimacy due to his pain, but I am a human being, I have needs, desires and believe it or not, dreams of a happy marriage. But given all this uncertainty with his health, I have never felt so alone. I think I just need some place to vent that doesn't require a co-pay. I have looked for support groups in my city but they all are for specific illnesses; i.e. Cancer, alzheimers, etc.... There is no support for caregivers of undiagnosed but still chronically ill spouses that I can find. Would love to actually meet people and make some friends who understand what I am going through. My friends try to be supportive, but mostly they don't understand why I am still with my husband. Thank you for letting me vent this morning. While it won't solve our issues, it is nice to sometimes put down in words what is going on in my head.

January 31, 2017 - 8:49am
By January 22, 2017 - 10:47am

I am glad that I found this site and I hope that it will help. I feel like there is nowhere to go and that there is no one to really talk to about what I am going through. Feeling so invisible in my own household. My husband and I met 13 years ago and married about 1 year later. We both came with baggage, but worked together through the years. Not long after, several years into the marriage, he started having health issues. It started with needing his gallbladder removed and then neck issues. He has been through 5 surgeries, with only the last one actually providing any sort of relief. He has been on pain medication for a very long time, which affect his ability to deal with life. If I did not push at all, he would stay in bed all of the time and simply withdraw from everything. When he gets stressed or things do not go his way or he is unable to cope, I am the emotional and mental punching bag, despite the fact that I am the only one who really cares or has been there for him. On top of that, I have been the primary caregiver for our two children, both who have mental and behavioral issues requiring medication. It is like I have 3 children instead of 2. When my husband does decide to get up and join life, he is critical of me and complains about how I handle the children and other aspects of our life, but does not proactively participate in solving any issues. After this long I have had enough and I don't know what to do. I am going to school as well to improve our situation and to better myself, but I literally have no time to take care of myself. Everything revolves around how he is feeling and I am not a factor in his life, except when it affects him. I hope someone will understand how I am feeling, because there is no one right now.

January 22, 2017 - 10:47am
By January 17, 2017 - 7:34am

So I'm guessing this will be moderated before posted, which leads me to my question. I posted something a few days ago detailing what I'm going through with a chronically ill spouse, and I guess my post wasn't accepted because I don't see it on the thread. I was hoping I could find out why???

January 17, 2017 - 7:34am

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

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