Living with a sick spouse - advice please!

[ame555]

Anyone out there living with a spouse who constantly has health issues?

Most days, I'm just used to it, but sometimes I just need some encouragement. Today is one of those days. It's Family Day in Ontario and we are off, so I was hoping we could get out and do something but he's not up to it.

Background: My DH has colitis since he was in his mid 20's (he's now 40), has mostly been under control until about 3 years ago. Since then he has had 2 major flares that required hosptalizaton etc. He now recieves an infusion every 8 weeks that is keeping it under control, but he lives in fear every day that it will be back with a vengence and he will have to have an ostomy bag.

In additon, over the last three years he tore his achellis tendon, was in a cast for 2 months, and the strengthh in his leg has never returned 100%.

He has always had mild back pain, but a year ago it became almost constant (where he couldn't get out of bed), after tests and meeting with the specialist, it turns out he was born with a mild form of spindia bifidia and as he has gotten older and put on weight it's become more pronounced. We've been told there is nothing we can do, except down the road he could get an epideral to control the pain.

Finally to top it off, the last 6 months he has developed constant nausea, again he's had numerous tests only to conclude it is heartburn and he has scar tissue in his belly. He is on meds for it, but does not help at all.

So I have a husband, with weak calves, a sore back, and chronic nausea. Most days I just deal with it, but somedays I just want to scream. We have a 3 and a 1 year old and want to do stuff with them as a family and I want him to join us.

I know he is not feeling well and I don't want to be mad at him, because it's not his fault, but how do I keep my sanity on days I just want to cry???

I also have the contanst worry for the future, what if he can no longer work, everything will be on me.

Thanks everyone.

[francine1985]

I know this isn't even close to the same thing but hopefully it will help you feel better.

Pregnancies are very hard on my system. my first pregnancy I was sick literally all the time. I couldn't even keep water down. I would have a sip and throw it all up including a ton of bile and stomach acid. I ended up becoming very weak. I was in constant pain. it was agonizing to walk even a few steps. I would go to work and spend most of the time in the bathroom on the floor sick. the walk to and from work which should have been a quick 5 minute walk was taking me a good half hour each way. There were times I would pass out because i was in so much pain and i was so sick. I ended up in the hospital several times for iv fluids and gravol shots. the gravol shots wouldnt last long i would be sick soon after i got home. I felt like i was starving to death and i was always thirsty even after the iv fluids i still couldnt keep even water down. on top of all that I still ended up getting gestational diabetes and i was luckily diet controlled. (although i sometimes wonder if my sugars were controlled better because the food rarely ever stayed down). I was sick in the hospital during my emergency c-section even. it took me a while to recover from the c-section and even longer to get some of my strength back. for a year afterwards my bones felt really soft and i would often roll my ankle very easily.

This pregnancy in some ways is better and some ways worse. I am more heavily medicated. i am taking the same pills for morning sickness as i was for my first pregnancy but at a doubled dose. My head often feels foggy and a bit dizzy (the pills may cause drowsiness). I also have the ok from my Dr to take gravol as needed this time. I developed gestational diabetes much earlier on this pregnancy but i'm able to keep food and water down much better and havent needed to be hospitalized. i am currently still diet controlled but there is a high change i will end up needing insulin closer to the end of my pregnancy. (according to the Dr the goal was to try to get to 20 weeks before putting me on insulin I am now around 24 weeks and sugars are still good so far). Anyway I am still in constant pain this time as well. my hips joints hurt constantly and will often snap. my back spasms come and go but are very extremely painful when i get them. I still get very low on energy from time to time. I have my good days when i want to go out with dh and ds and I have my bad days were I dont feel like even getting out of bed but i still have to puch myself because i have an almost 3 year old (he will be 3 in early april) to take care of by myself while dh works. on some days that are really bad i will send dh a message asking him to sign up for early leave and just do my best till he gets it and comes home.

During my pregnancies I often have to ask dh to help me have a shower so i can wash my hair or to help me get in/out of the tub so i can have a bath. He often has to go to the store and get me something. or he has to go get my food ready and bring it in to me when he is home. he all the food and for days he is working when he makes supper he makes extra and does up a plate for me so i can just microwave it and have my lunch the next day. he often does most of the work with ds when he is home. To be honest I sometimes feel like a big burden to him. he is very supportive and helpful especially while i'm pregnant. he goes to work and allows me to be a stay at home mom while still doing all the cooking and most of the cleaning. (even when I'm not pregnant he always does the bulk of cooking and cleaning. he doesn't like my cooking at all. i apparently often burn the pots/pans and its a pain for him to clean them. as far as house work he has super high standards so redid all my work anyways so i stopped wasting my time and just do a bit of tidying and concentrate on caring for ds.)

Odds are your dh is stressed worried and feels like a burden often. he would probably love to go out with you guys too and do something fun as a family but just doesn't have it in him at the time. maybe try to do fun things spontaneously instead of planning out ahead of time. it might be less stressful than cancelling at the last minute do to a bad day and when he is having a good day it might be a nice surprise to your kids to go out and do something they weren't already told about.

again I know my situation isn't even close to yours. having someone sick all the time on a permanent basis is much harder and my pregnancy will end and i will recover my strength/energy back. just thought my situation/experience might be able to help you feel better and work around your dh good or bad days.

[lecale]

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[Abby5]

I think my husband feels the same way as you do ! I have suffered from chronic constant migraine headache for almost 6 yrs now!! This past march my neurologist took me off work. She will not put me back to work...and LTD as denied me!! She refuses to do that appeal for it!! Anyway I can not do most things I use to do...missed his mom's b day party yesterday he is the only one making money and it is very stressful for him. I worry about him and my kids it is not fair anytime I try to talk to him..he says he does not want to stress me out...which is true , stress makes my headache worse

[ame555]

ame, it is a good idea to keep a daily health/eating log for your dh

Every so often take all your scribbles and make them into a spreadsheet

This way you can quantify the size of the problem (good days vs. bad), communicate with the doctors precisely, maybe even come to predict good/bad days and give you more of a sense of control over the situation

My dh was on meds for gastritis/stomach troubles and would become violently ill about once a month over the last few years...then more frequently...then vomiting blood... Turns out it was the meds that he was taking for arthritis that was making him so sick. Never would have figured that one out if we hadn't tracked all of his symptoms to present to the doctor. He was on something for his gastritis but it largely didn't work. Arrgh! It was like living with a cat with chronic hairballs.

The more well documented you are, the more you show you are trying (e.g., losing weight, quitting smoking, using the prescribed meds, etc.), the more likely the doctor is going to find something that they can do. Went through this with dh's latest hip replacement. The doctors really didn't want to do the op until we showed the effect that pain was having on his daily life despite everything.

Don't give up hope and believe that nothing can be done.
Be an advocate for your dh so he can get the treatment he needs.
Make notes!
and, Hang in there!

I used to do that, but just a combinaton of thinking "it doesn't make a difference" and maybe being a little lazy I stopped...but you're right, I will start again today....thanks for re-motivating me!

[Tweetybird999]

Wow. It's tough to have someone sick all the time. I had a lot of trouble with pain and exhaustion for years. My DH had 2 surgeries on his wrist last year and spent 11 months off work. So between the two of us, things were very difficult, as the kids were 2 & 4. He's fine now, the kids are a year older, and I'm not exhausted, but still have difficulty with pain. Now DH needs surgery on his other wrist. He'll only be off work about 6 weeks this time. But it's likely to be hell for me. There's a lot that I can't do even on the best of days. Oh and I work full-time also... so is there some encouragement I can give? Well nothing is usually forever. Things get better and worse and better again. You're not alone.

[glowworm2k]

I'm sorry to hear that things are tough for you right now. Dealing with the illness of a loved one is particularly trying. My situation is quite different, but I have a bit of an idea of what you're facing. When I was 10, my mom was diagnosed with chronic fatigue, fibromyalgia and also a whole host of food allergies. Between all this stuff, she slept/was in bed 16-20 hours a day for a year or so and would be weak and foggy when she was up. My dad moved out a few years after Mom got sick and she got really, really depressed. By the age of 15, I spent a lot of time running the house as Mom was often depressed, unable to work full-time and just feeling sick all the time.

I had lots of negative coping mechanisms, but some of the positive ones that I'd recommend included
- doing everything on a rotating schedule. This includes cooking meals (rotate 4-7 main ingredients for meals), have certain days when certain chores will get done, etc. etc. I found that this way everything seemed more manageable.
- figure out a list of things that your DH can do, even on his bad days. This could include stuff like reading to your kids, doing colouring or crafts with them, etc. as well as household stuff - even just simple things setting the table or wiping down the counters or other simple stuff. You can also include more involved stuff that can work on his good days. This will give him concrete ways to help out and feel like a contributing member of the family, even when his health isn't great and he feels like crap.
- find some time for yourself!! It's amazing how restorative and peaceful it can be just to take a 15 minute walk in your neighbourhood or head into the bathroom, put on some headphones and lock the door.... more or less anything you can do to get away from all of the stress for a few minutes.

As I mentioned, I did lots of negative (think teenage rebellion) things to try to cope with Mom and her illness, but ultimately I found it was the little things that gave the days structure that helped the most.

Hang in there!! *hugs*

[Tweetybird999]

Those are great suggestions. We employ some of them, such as having "usual" supper dishes and easy snacks/lunches for the weekends. We have a schedule for shopping, housework, kids sports, laundry, etc. I don't worry if I can't get it all done, things wait. Windows didn't get washed for 2 years, but oh well.

When DH was in a cast and couldn't walk around due to swelling and cutting off circulation, the kids loved sitting with him at the table coloring or watching a movie or he could sit outside as they played on the swings.

I also do "me" things such as go get my nails/hair done. We had relatives come help with the kids so I could do this last year, nearly the whole year. Now we try to schedule a night to ourselves (minus kids) so we can have some together time to help maintain our relationship. Try to take some together time when you can. Last year was terrible for our relationship, but we're doing much better now. It's important to maintain your communication.

I'm sorry to hear that things are tough for you right now. Dealing with the illness of a loved one is particularly trying. My situation is quite different, but I have a bit of an idea of what you're facing. When I was 10, my mom was diagnosed with chronic fatigue, fibromyalgia and also a whole host of food allergies. Between all this stuff, she slept/was in bed 16-20 hours a day for a year or so and would be weak and foggy when she was up. My dad moved out a few years after Mom got sick and she got really, really depressed. By the age of 15, I spent a lot of time running the house as Mom was often depressed, unable to work full-time and just feeling sick all the time.

I had lots of negative coping mechanisms, but some of the positive ones that I'd recommend included
- doing everything on a rotating schedule. This includes cooking meals (rotate 4-7 main ingredients for meals), have certain days when certain chores will get done, etc. etc. I found that this way everything seemed more manageable.
- figure out a list of things that your DH can do, even on his bad days. This could include stuff like reading to your kids, doing colouring or crafts with them, etc. as well as household stuff - even just simple things setting the table or wiping down the counters or other simple stuff. You can also include more involved stuff that can work on his good days. This will give him concrete ways to help out and feel like a contributing member of the family, even when his health isn't great and he feels like crap.
- find some time for yourself!! It's amazing how restorative and peaceful it can be just to take a 15 minute walk in your neighbourhood or head into the bathroom, put on some headphones and lock the door.... more or less anything you can do to get away from all of the stress for a few minutes.

As I mentioned, I did lots of negative (think teenage rebellion) things to try to cope with Mom and her illness, but ultimately I found it was the little things that gave the days structure that helped the most.

Hang in there!! *hugs*

[abbasgirl]

I know this is not for everyone, but have you guys considered chiropractic? It might help at least with the spina bifidia. I had a weird curve in my spine, which my chiropractor was able to correct (I've seen the x-rays and had symptoms disappear to the point where I'm able to run 10k.)

[ford64]

Hi there sorry to hear how tough things are, I too have a sick husband which started in 95, diagnosed with kidney failer, he has 9 siblings in his family no parents, none of them was match, Its so hard watching them go thru so much pain and feeling helpless, I was tested and i was a match so i donated one of my kidneys 1week before xmas in 95, everything went well he was released then in feb, 95 he had a heartattack, then it was another hospital stay , had a stent put in his artery , he was good for a few months then he had another heartattack because the stent had shifted therefore causing a bld clot to form so another hospital visit, i have 2 step children and 2 we had together, 2 under 12 when this happened, and step children in there teens.you have feelings of despair and guilt and want to give up at times when your going thru so much, family helps a great deal thru stressful situations. after 2nd heartattack, things were going well for a few years then he had his first stroke so another hospital visit, only a few days as there was minimal effects. off work for how long , so now iam the full time worker, had a good 2yrs again with no healtheffects, then he was diagnosed with macural degeneration of his eyes lol at this point iam like what next! for me releiving stressers is running for my self. I would do soothing massages for him with the oil and soft music cause i know he feels less then right now, and is afraid of dying at this time. He became depressed, i would talk to him. we ll sit outside on the deck even if it was in silence, then things were going well for a few months and he had another stroke, back in the hospital for a week this time, with left side mouth drooping, left arm week, couldn't speak. he was very upset, actualy cried for a week he did, So now he is no longer able to work, but we try to do things slow and easy even when its difficult. we cherish each day like it may be our last. My husband is only 54 now. he is not overweight, quit smoking , has been exercising as much as he can.
I know you want to do things with him but why not just sit in the backyard if you can and enjoy each other for now, he'll get more comfortable with leaving the house it'll takeawhile but he'll get there.
Good luck its hard.

[saveadollardiva]

I am sorry to hear about your husbands health issues. I think what you need to do is just keep on going. Sometimes we have to put what we want on hold so our partner is well, healthy and happy. I know sometimes you might get tired but you have to realize that if you were in the same situation your husband would do the same for you. Personally if it was me, I would not even think of the illness. I would just think my DH needs me, whether that is to help him out of bed, get him something, give him his medication and or just stay with him I would be fine with that. I think life is precious and if my husband was ill I would want to spend every moment with him, the good and the bad. And I wouldn't care if it was just the two of us, I would rather have my DH company any day than anyone else's.

And when your husband has his good days, enjoy them, and spend them together as a family.