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

ok, there are a lot of threads from the original message, too many to read through, so i'm posting about the issue - living with/being married to/in a relationship with a sick spouse.

in my situation, i'm the non-sick spouse.

i've read persons saying that if you're the non-sick spouse, to quit making things about you. while i agree that this is selfish, it's also inevitable. when you enter into a relationship, there are expectations that come with it. even if the person was sick to begin with, you never really know what you're dealing with until you journey with them as their sickness progresses. it may start off as the sick spouse not being able to go out with you, and you may be ok with that, but then as time progresses, they are unable to have sex with you, unable to comfort you when you need it, etc. etc. physical sickness almost often comes with emotional problems - depression, anger, lack of sex drive, mood swings. etc. and most of the non-sick better halves do not realise that this is what they're getting into.
all these things are understandable - i cannot for one second imagine what my spouse goes through, and i am extremely proud of him that he keeps fighting. i admire him and i love him, but there are expectations that are not being fulfilled. and while saying that may sound, or may even be selfish, it's reality.

in my situation, i know that my spouse loves me. because of his will to keep fighting. like many of the testimonies here, his sickness is not really treatable and medication hasn't been able to control it very well. every day, something else goes wrong. his condition is constantly deteriorating. that being said, there are days when he cannot speak to me, cannot be around me, and all he can manage is to try to take care of himself.

not everyone is cut out for being with a sick spouse. it takes A LOT of patience and you have to put aside your expectations of what society has made a relationship out to be. so for those of you non-sick spouses who think you are up for it, here are some of the things i've learnt that have helped me.

(i do not intentionally mean to insult any sick spouses. if i have, then please forgive me - i did not mean to. you will also find me over-using the term "sick spouse", but it's just to differentiate between sick and non-sick)

1. DO NOT COMPARE YOUR RELATIONSHIP TO ANYONE ELSE'S
looking at "normal" peoples' relationships and comparing yours to theirs is a recipe for disaster. you are NOT in a normal relationship. your situation is NOT normal. so you cannot compare.
how wonderful it is that your best friend's spouse goes out with her/him all the time and they have so much fun and they post all their pics on facebook and they look so happy... why can't you have this?
wanting it is normal - and there's nothing wrong with wanting it. but your sitatuation is not normal. and if you're in a relationship where your sick spouse really does love you, if he COULD do it for you, he WOULD. you have to understand the sick person's capabilities. and i stress CAPABILITY, not desire. capability and desire are two completely different things. understand that your spouse WANTS to do these things with you, but CAN'T.

2. TAKE BREAKS - AS OFTEN AS YOU NEED THEM
i feel like i live in a hospital. when you think about it, that's really what it is because our home has become this place where he is always sick and i'm always trying to take care of him. at least, that's how i feel.
my spouse is the kind of person who loves when i'm around. but at the same time he's understanding that i need a break from the situation. and when you're explaining this to your sick spouse, please stress the break is from the SITUATION, and not from HIM/HER.
i know that people on the outside looking in think i'm a selfish bastard for leaving him for a few hours to go watch a movie by myself, or checking myself into a hotel for a night, or putting a tv in another room so i can get lost in a tv show there without him around, or even sleeping on a different bed when the situation gets to be too much for me. but screw these people who think i'm selfish... all i'm doing is taking breaks so that i can be better at being there for him.
i'm sure he also feels like i'm neglecting him, but if i'm constantly there for him and don't take time-outs from the situation, i get extremely frustrated and exhausted to the point where i want to run away, permanently. taking breaks is how i keep sane.

3. BE OK WITH SPENDING TIME BY YOURSELF - STILL DO THE THINGS THAT MAKE YOU HAPPY
being with a sick spouse is a very lonely life. so if you're someone who constantly needs attention, or can't do anything independently, that life is not for you.
i look at needing less attention as my growth to being more independent. when i'm able to do things on my own that make me happy, i'm more confident and self-sufficient. of course, it's SO much better if you can share these things with the person you love. but refer back to my statement in #1 about capability vs. desire. if he could, he'd be there with me. he once told me that i need to keep doing the things i need to do to be happy.
so whatever your passion is, don't give it up because your spouse can't do it with you. if it's singing, join a choir. if it's hiking, join a hike group. if it's scuba diving, join a dive group. you get my point.
it's important that you do or continue to do these things that make you happy. you being happy means your in a better frame of mind to interact with your spouse. that makes him/her happy, and everyone happy.

4. IGNORE THE PEOPLE WHO DON'T UNDERSTAND
if you really love your spouse and want to stay with him/her and want to make things work, you need to ignore the people who do not understand the situation.
no one will understand the situation like you do because you're the one living in it.
everyone will want to give you advice on how to deal with things. friends will want to know why you haven't left him/her yet, and others will be appalled that you're thinking of leaving him/her.
don't hold it against people if they don't understand - sickness difficult to understand. it's not just a matter of googling "cancer" or "MS" or any other sickness. i live in the situation and i STILL don't fully understand. even your sick spouse doesn't fully understand what's happening. so don't expect outsiders to understand.
you have to sift through the negative and positive comments and take away what you need to. i remember calling a friend in tears saying i wanted to "run away" from the situation and her response was "i think you should". i got angry with this friend, because all i wanted was comfort - i didn't want her to support any particular decision. but everyone is entitled to their opinion, and i did call for advice.
i remember calling a different friend some time later and saying the same thing "i want to run away". and she asked me "why?" she didn't take a side. all she did was ask me the right question for me to think through my own feelings. and slowly i began to realize that i could do this process on my own. and so i've realised that wanting to run away is NORMAL. there's nothing wrong with feeling it. it doesn't make you a bad person. the desire to run away from the situation is just your instinct telling you to preserve yourself, because it's too much for you to deal with right now. refer to item #2 - if you take breaks, you give your body and mind little vacations from the situation, so it doesn't all pile up.

5. THE GOOD STUFF
i'm thankful because my spouse has had a major impact on my confidence level and on the way that i think. he's helped me to be a better person. in the midst of all the sickness, what little he does speak to me about, has been extremely influential in my life. he's helped me to realise my weaknesses and my strengths. and for that, i will be ever grateful to him. we have an extremely deep connection that's hard to break, but sometimes becomes forgotten (at least i forget) in between all the sickness and moods and quarrels.
he deals with off-the-charts levels of pain on a daily basis. so when i have a flu, i get my ass up and do what i need to do. his sickness has put a lot of things in perspective for me.
including the fact that there are worse things than death.
so what are the "good things" about your relationship? how has your spouse been there for you? helped you through something? don't forget the good things.

so that's my take on things. i know everyone's situation may not be the same, and there are some sick spouses who may not deal with their sickness as well as my spouse does. for everything he has to deal with, i must say i still feel his love for me, very present. i can understand that living with a sick spouse who resents you and constantly resents the situation and doesn't show you any love, can be very difficult, and maybe my advice may not work in this case.

but if your situation is similar to mine and you're so frustrated that you want to run away, play out how it will go... try to see how you will feel when this person is missing from your life. and if you feel relieved, then just take a damn vacation and then come back home to your spouse.

p.s. i have not figured out how to still be into sex with my spouse. i love him and i want to have sex with him, but i am turned off by seeing him sick all the time. us having sex also depends on his mood and level of pain, so it isn't often that we do. but when he's ready, i would like to be more into it... just can't wrap my head around everything and still be turned on enough to want it. i'd appreciate any advice here.

best,
Ann

The other side: I met my husband at an ad agency. I eventually went to set agencies up (this is back when the change was being made to Macs) and he was senior art director at the last agency I had a contract with. We'd been married less than 10 years and I took all my toys and went home and put out my own shingle. Within 3 months he was working full time in our new business and within 3 years we were millionaires. It's me that drove it, he just had to show up. I took care of the office, admin, IT, home, shopping, even his clothes buying. He had motorcycles, big trucks, big BMW and we had the big house with the big art collection. We were so on fire we never advertised and could choose the clients we wanted and those clients stayed, the whole time.

In 2001, I began to get facial flushing, by 2003 I was red all the time and my lovely doc wanted to send me to a shrink because my nasal steroids could NOT be the cause as I kept pestering my doctor about (total destruction that guy), but I knew they were making me so sick! I eventually could not handle cold weather and developed bilateral atypical trigeminal neuralgia (I hid from the world for the first time the pain was off the charts). The vascular changes in me from the topical steroids is profound. I had been using ointments on my skin since 2 and had 6 surgeries for cysts and tumours on my ovaries until I spayed at 26. So we ove to an ocean front home and go broke fixing it up but I keep getting sicker. I see an ND or MD or specialist every week. My life is no longer opera, movies, dinners and quiet nights with wine in front of the fire after a wonderful day at a job I loved.

I was going down, by 2008 I was bed ridden and throwing up so much my teeth are see-through. By 2011 I am losing all my hair -- all over, not just having a bald head -- my muscles waste, my joints swell huge and I go bright red. I get topical steroid withdrawal so bad it's just too much to talk about. I hardly remember 3 years and waking up and seeing all the car changes was weird. What has been the hardest is my husband. Sweet, quiet, gentle, artist was actually a socially anxious, tightly controlling, snarky, petulant and major passive aggressive. He would do things with his silences and get people to always pity the poor man. He cared for me like a baby and I loved him so much for it. I had always loved him so crazy but his abusive nature would drive me to dark times.

Now he would be happier if I were not here. He ponders everything and ruminates to death and drives me nuts with nagging. He had to take over the entire load when I got sick, no more pampered hubby. But he was well loved and he gave that back to me the thing is that he got burnt out along the way. He is ill and depressed and we both are completely unable to work anymore. My topical steroid nightmare ended up giving me both secondary Addison’s (exogenous adrenal insufficiency) it gave me the opposing but co-existing Cushings as well. My autonomic system is a nightmare and I went from laying in bed for years to sitting up for years to sitting on the deck lounger for a year and now have sat at the deck table upright for a year. I avoid my husband as much as I can. My skin has begun the erythroderma and red burning shedding skin again (google “topical steroid withdrawal” and just look at the images results, it’s grim).

So I have an unhappy prince. I have learned he has a whole personality I was not aware of. He sees a psychiatrist and they keep changing his meds. He has so many hang-ups and is so uptight I cannot even have a balance conversation with him. Well, last night I did though. He envisions what life would be like if I were not here. He would stay in the house because he loves it and the dogs would be settled. He could afford to just be with no concerns and that appealed to him very much. I just sat that aghast and silent. I had a really rough sleep last night and today as I sit in level 8-9 pain with burning shedding skin all over me he is feeling sorry for his burden. He talks about palliative — which he thinks means they take me and care for me full time. We’ve tried in home care and it was rather ridiculous how unmotivated to movement all the women were. So I asked him last night, apart from some added sheets on the bed how much added work am I? He always asks to rub my legs and even continues while I sleep because I have such bad raynauds from it all, then the next day is tired and holds it against me — but I was asleep and did not ask for this?! I am horrified with what his feelings really are about me. I woke up this morning so freaking numb but with water-works wanting to fall at a whim so I sit outside, in the cold because my skin heat is so high I need the chill and I get miserably cold with raynauds and end up in bed with 4 hot water bottles and BP around 70/40. We talked about doctor assisted suicide. I am not going to get better and there are no medications that help me.

Apart from his love, my sweet little dogs and my peace garden — and here I thank God for disability insurance — there is nothing more in my life. I forget moments, days, whole efforts with letters and conversations but I am ‘whip smart’ at the same time. I know exactly what I am losing with my mobility due to rather bad peripheral neuropathy now, my dysautonomia, my mental function and oh my dear lord the skin where most of our autonomic nerve endings sit. I am in pain everywhere and have this man who I have no idea what to think or do about.

I have been with my disabled husband for 30 years. And he has been 100% disabled for almost 9 years. It is hell. I am his caregiver not his wife. I think about leaving all the time I am so lonely and want to live my life. He is not the man I married in any way shape or form. The problem is how to leave him. What to do where to go for help. He can not be left alone so and can not care for himself. I am surprised at all the people posting here I thought it was just me. The question is, what do we do about it?

I have been with my disabled husband for 30 years. And he has been 100% disabled for almost 9 years. It is hell. I am his caregiver not his wife. I think about leaving all the time I am so lonely and want to live my life. He is not the man I married in any way shape or form. The problem is how to leave him. What to do where to go for help. He can not be left alone so and can not care for himself. I am surprised at all the people posting here I thought it was just me. The question is, what do we do about it?

I have been with my partner for 11 years now and we were friends for 10 years before we got together. We have been through so much together and held strong, I never imagined we would get to the point we are now. It began with physical disabilities on her part, lymphedema and spinal stenosis. Suddenly, because she was no longer strong physically, she went spiraling down into a depressive state of feeling worthless. I did my best to encourage and support her through this time, sitting in on counseling and medical sessions as her advocate at her request. Still, no doctor or counselor ever said or did what she wanted them to do, although she can't articulate what it is that she wants. It got worse, two suicide attempts, living with and caring for her abusive father through the last few months of his life and his dementia, and several moves. She has cancer now and is more physically disabled, unable to walk without a walker, to turn her head or even straighten one of her legs. Nothing I have done convinces her that I love her. She has ceased to try to do anything for herself now, preferring to leave everything up to me. I feel an incredible burden of trying to oversee our household, moving and settling, getting health insurance and medical care, and seeing that both of our properties are cared for. In the last year, everything is now my decision and responsibility, right down to if she does something, when she'll do it, and without any asking for it on her part. She sits in her recliner and watches murder documentaries and Dr Phil all day and resents me for not reading her mind. All of this stress and the constant drone of murders and dysfunction on all day have sent me into a spiral of my own that is leaving our house in total chaos. I have explained the effect that the TV choices have on me but she doesn't show any understanding or try to turn them to something else. It's gotten so bad lately that I have caught myself thinking that if the cancer is going to kill her, I wish it would just hurry up and get the job done. It sounds callous, but she is suicidal everyday now and moaning about how worthless she is because she can't help with housework, though I have told her that isn't true. How long do I have to continue to put her needs ahead of mine? How long do I have to cater to her suicidal tendencies, which have been ongoing throughout our relationship, before the stress of doing so drives me to consider suicide as a viable escape route? I know she isn't going to live long, she has too many health issues but I'd like to emerge at the end of this relationship with some semblance of myself intact and not have to start over on who I am from the beginning.