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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 HERWriter Guide February 22, 2017 - 1:31pm

Hello Grace

I am so sorry you and your whole family are going through this.  Migraines are an absolute curse for both the sufferer (especially) and also for the whole family. Your concerns and fears are very understandable. 

I saw a medical report recently on new and highly successful treatments for migraines and I wish I could remember what channel it was on. 

But I do encourage you and your husband to find more information on new treatments as I know  they are out there. 

Stay in touch with us

Susan

February 22, 2017 - 1:31pm
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
By HERWriter Guide January 12, 2017 - 1:39pm

Thank you for this update.

You have every right to feel frustrated and annoyed because your situation is incredibly frustrating! 

I hope your husband's meds continue to help him improve and feel free to talk to us anytime.

Susan

January 12, 2017 - 1:39pm
By January 12, 2017 - 7:42am

hi all, sorry for a late reply but with Christmas and everything its been hectic.
An update to my story is, that my husband has now been given biologics and they are working amazingly! However although his pain is halved he still seems to have lost his personality, the man I met and married. He is always tired and forgets everything so I'm still left being the single parent just with an extra child. He wont go to the drs for depression because he says he doesn't want to kill himself!! its so frustrating. I do everything, he is not very car minded, neither am I, but when his car broke down it was me on google looking for reasons me looking for parts and garages me telling him what to do how to do it. Its like he feels owed because he has this disease.
As I said his pain and movement has got a lot better but things aren't the same, I don't know if they will ever be again to be honest.
I'm glad I posted on here as I do now feel that although yes he has the pain, I am suffering too and he has to acknowledge that like I have to for him. when he has days off work and is self employed and doesn't get paid its me who has to sort the finances, he doesn't have any of that stress, he literally has to get up go to work and come home. I'm mum dad wife and husband and its not enough.
I'm 37 and feeling like my life is over, this is how it will always be carer to my kids and him getting nothing back really.
I'm hoping things will improve he has only been on this new medication for 2 months so we shall see.
I just want to say to you all, hold your head up high, don't feel guilty, we are human and because we are the ones holding our families and lives together, they may have the pain or the symptoms but we are dealing with everything else and that's bloody hard!.
We all deserve to let off steam and if anyone would like to chat further feel free to reply.
take care xx

January 12, 2017 - 7:42am
By December 28, 2016 - 10:37pm

Hi all
This is my first post so bear with me as I might ramble on.
My husband and I have been married for 35 years. We have gone through a lot together including raising 3 sons. My husband was an alcoholic, while my sons were growing up. He was good at hiding it from them but no so much with me. From this I believe he developed high blood pressure and then heart failure about 11 years ago. Since that time, his health has not been the same. Besides the heart failure, he has had 3 heart stents put in, prostrate removed due to cancer, skin cancer, and 2 kidney surgeries due to cancer. He now has about 1/2 a kidney. He has always been a glass half empty type of guy with little to no patience for much and since his heart failure has had depressive episodes. Most recently, he had 6 painful limpomas removed from his back...no cancer thank goodness.
He has been on disability for about 1 year and I am now the lone breadwinner. I am an elementary teacher with a ton of responsibilities. I carry the insurance at this time, do all the bills, talk with doctors because he does not ask the right questions and doesn't understand what doctors are telling him. He has lost some of his mental capabilities over the years.
Anyway, all of this has caused me to become bitter towards him. I do not show that bitterness to him but it is still there. First of all I feel it is his fault he became ill because of his drinking. His behaviors caused this roller coaster of bad health. That might not be true at all but it is what I feel. I also don't feel sexually attracted to him anymore. I seem to be the constant giver in this marriage and sex is just more giving which I don't have the energy for. Also as someone else mentioned he is all consumed with his illnesses and pain. He is always negative, never wants to go anywhere/do anything, and he barely talks to me unless it is about his illnesses. This is all making me feel lonely and frustrated, and as I said, bitter. I do love him and feel committed to him because of our Catholic marriage. I am a strong faithful person, but even a strong person can only take so much.

Thank you for letting me ramble on and thank you for this site.

December 28, 2016 - 10:37pm
By December 26, 2016 - 6:55pm

I feel the same as do many of you explain. My husband has a vascular brain tumor. It was found just before we met. He had minor head aches that were treated by medication. We got married and had two children. Life was going how I hoped it would. As the years passed his condition got worse. We are now 12 years into our relationship. He has been disability for almost four years now. He is sick almost everyday. He spends most of his time in bed. I feel lonely and like a single parents. I'm starting to feel like it's causing me to be depressed. How do you others make it through?

December 26, 2016 - 6:55pm

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

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