Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice

Hi Anon - You've certainly been through a lot since you first wrote to us just over a year ago. While there is much ahead of you, there has to be a lot of relief for you to have made your decision and to have taken concrete action to leave your husband and start your new life. It's good to know that you have a strong support system in your family, friends and co-workers - and you also have your EmpowHer friends in your corner too. Please don't hesitate to tap into us when you need us, whether it's just to vent, or to ask questions, or to seek advice. You've taken on a lot in order to do what's best for you and your son - we know it can't be easy for you - and sincerely want to be there for you and help you succeed in setting up and establishing your new life. Please take good care, and keep in touch. Pat

Hi all, I just wanted to update you all on my status. I am the original writer that was struggling w/ leaving her sick spouse. Well this past weekend I did leave w/ my son and we are currently stayin w/ my parents until our apartment is ready on 2/21. Unfortunately, my husband will not allow me to take anything from the home so I have had to purchase all new furniture and household items. It's been expensive, but at the same time at least I can have a fresh start. My husband filed for divorce before I could and is filing for sole custody. He states that he is the "primary caregiver for all of Joseph's physical and emotional care". Which is completely rediculous. He isn't even able to manage bringing him to the doctor's office on his own. I am anxious, but realize that there is no way that he is going to win sole custody...I know that he is hoping for joint custody...but that is even a stretch.

I am fortunate that I have an excellent support system consisting of family and friends. My co-workers are wonderfully understanding.

This is a very difficult time...I am hopeful, but it seems like every 30 minutes are so my emotions are changing.
Thank you all for your support, I will keep you all posted.

Sounds like things will be better because you won't be living under the same roof putting up with him 24/7 365, instead of just "part time" due to visitation with your son, so that is good for you and by default your son. In my situation, if there was any way possible, I'd rather not live under the same roof because I think these people/situations are "too much for most people to live with". It sure is a long, hard process isn't it?! I know, I'm still in it, and I feel it's a nightmare I can't wake up from. I hope things will go very well for you and your son, as they are saying, he does deserve the best interest and you are trying very hard to give him that, so good for you. He's the child, not your husband, even though the sick husband "acts out" like a child, and is an Adult Child, he's still NOT a child! These "sick spouses" really should TRY to "help themself" more and not feel as though their spouse is "bad/wrong/guilty" if they don't want to take the BRUNT of everything, just because the spouse got the disease, it's not the other's fault to have it taken out on them! So, for me, it's not about wanting to leave because he's sick, it's about his attitude and the way he treats himself, the situation, and me.

Thanks for your response. I looked for (and found) an apartment yesterday which is very nice and reasonably priced. I then put some furniture on layway (I didn't know that you could do that!) in order to start to get ready for the inevitable split coming up. He is aware that I am not happy and do not intend on staying, but is currently trying to be as sweet as can be to once again get me to think things will be better. I think that he loves us, he just can't act like it anymore. And when he does, it's forced and faked. I'm tired of pretending, I'm tired of not having a partner and I'm tired of the constant stress. The apartment that I found is right arround the corner so, that will help him with visitation (since I'm going to be driving) and my little boy is comfortable with this area. His school will be the same and I won't have to change to many things in his life. His surgery is scheduled for next week. I figure in about 4-6 weeks he'll have healed enough that we can leave. I want to be reasonable for all of us. I won't keep my spouse from seeing his son, but joint custody is out of the question since he sees nothing wrong with not putting our son into his carseat, has a short fuse and feels the need to keep a large dog that has bitten our son in the face. I realize that I will need to be somewhat flexible when it comes to visitation based on my husband's illness. I hope to be able to include him in school events and extracuricular activity, but we'll see because it will depend on how everything plays out.

I also understand what you are going through. My husband of 15 years was diagnosed with a rare genetic disorder four years ago. There is no cure and will eventually be fatal. His symptoms at this stage are mainly behavioural/cognitive. His personality altered gradually and he became very needy and pestering. He repeats the same old negative comments dozens of times a day and would frequently complain. We would have arguments/ strong discussions that did not follow any reasoning or logic and alot of what he said did not make sense. (His condition is neurological therefore affects the brain). He spent 8 years being sacked from job after job, but would not take any advice to help himself. He was always frustrated and agitated (but reasonably normal in public) and frequently took it out on the children and myself. After one particularly aggressive and unacceptable 'meltdown' over something trivial our son did (and believe me it was really minor) I moved out that very evening with the children. His meltdowns were happening very regularly (3x week) and he would say afterwards, "What do you expect, I'm sick." It got to the point that even though he may have had a 'legitimate' excuse, it did not change the fact that our lives were being governed by his disorder. The more I tried to do to make his life comfortable expotentially my life would be made uncomfortable. I decided that as there was only one of me and my priority was to my children, (my health was being compromised as it was and to look after the children properly I needed to keep myself healthy) that separating myself from my husband was the only thing to do. He now lives away from the home. I take him with us for short holidays (2 days) and we attend church together as a family. Understandably I feel enormous guilt at 'ditching' him when he got sick, but I found the situation at home impossible as he was so uncooperative. Basically for me there was no right solution, either way someone would get very badly hurt. That was 8 months ago and I still feel awful. As we still see him a couple of time per week for meals, weekend outings and Church I feel that this goes some way towards a compromise. Its not ideal but for the moment it is managable.

All I can tell you is that I KNOW what you are going through. I married my husband 24 years ago-he was my high school sweetheart. I knew he was a diabetic but I had no idea about this. In 1999, he had "the widow maker" heart-attack and somehow he survived. It shut down his kidneys. To make a long story short-since then he has had a kidney transplant which failed 6 yr later and he's now on dialsys 3x a week, he has lost both his legs, had multiple heart attacks, strokes, seizures, chronic pain, vascular dimensia,congestive heart failure and COPD etc. He is now a brittle diabetic and insulin resistant, (terrible mood swings), forgetful, mean and lays in his bed all day. I feel like I live in total Isolation. I might as well live in a cave. But when I married him I swore "till death do us part. I don't know how but my advice is to muster all your stregnth and walk through it with him. You'll thank yourself in the end. I am going to start going to a caregiver support group-maybe that is an option. But if you leave-you'll end up hating yourself. If you want to e-mail me my e-mail is [email protected]'re more than welcome to.

Hi I am male and have been married for 23 years. 8 years ago I was diagnosed with Poly Arteritus Nodosa. A fairly debilitating disease that has left me in a similar position to the husband in this post. My wife became distant and had affairs. If you think there is any chance that this is what may happen in your case then leave him. He has already lost enough and needs no further humiliation.