13 replies to this topic

[caseyann]

Hi all
been having a really bad few days does anyone else feel like I don't want to do this anymore dint get me wrong and live my husband and I am not talking about leaving him it's just the care end of things his lively family who live next door seem to forgot about there son in a wheelchair and I know I should ask for help bit my husband is just so used to it only been me doing things for him and of course my humour makes him depressed and my son in bad humour aswell I just can't keep putting on the brave face and I can cope with anything anymore
thanks for listening and this post prob doesn't even make any sense anyway

[reborn]

of course it makes sense! you should not feel bed cause you feel that way! you struggle hard... it takes inhuman effort to cope with such responsibility! when all you do is just give, give and give (mentally and physically) sooner or later you burn out... you can not be hero and redeemer all the time! have in mind that you are wonderful person in unenviable position.

[pinkcloud]

caseyann, on 13 June 2011 - 09:31 AM, said:

Hi all
been having a really bad few days does anyone else feel like I don't want to do this anymore dint get me wrong and live my husband and I am not talking about leaving him it's just the care end of things his lively family who live next door seem to forgot about there son in a wheelchair and I know I should ask for help bit my husband is just so used to it only been me doing things for him and of course my humour makes him depressed and my son in bad humour aswell I just can't keep putting on the brave face and I can cope with anything anymore
thanks for listening and this post prob doesn't even make any sense anyway

Hi caseyann

I am sci meself yet not able to just wheelie on by.

Its ok, I am known for saying this - I would rather have sci than be a loved one of sci anyday.

Sometimes you may not like your loved one, the life restrictions, the upset, the sadness..thats ok it happens in life with no sci. Your not mad, mad or sad, your a lady with feelings.

Who would think 'oooo yes please sci i want you sooo badly in me life'. No one, see natural to not like - even hate sci's impact on life.

I always say to me sons/friends - please dont try to be perfect - to look after me feelings. Life situations are hard - hving sci dont mean I'm immune to everything else in life, I still got to deal with stuff.And anyway as a human its part of lifes job to get peeved off, theres no incapacity rules to get away with our roles in life

If you can, explain to him that you are not in any way rejecting your husband, you just need a little more 'you and your seperate time' - be it seeing friends, lying down in quiet or well anything, no reason to want to be happy in life - its not a high maintenance privilage your after - just a little help here and there.

Ok yes your husbands got used to you being there doing it all - well, life changes - and hes just going to have to get used to someone else doing stuff too - that or go without, up to him.

You dont owe him your world because hes injured and your not. Thats lifes cards he got dealt. You are a star. Dont under estimate your need to shine. Then the darker the times, the brighter you will be, and thus so will everyone around you

[rue2you]

You should look into getting some help for him every day to take care of his physical needs (bathrooming, grooming, showering, etc). You need to find the balance between being his wife vs. his caregiver. I have tried to be as independent as possible so that my hubby doesn't have to be my caregiver all the time. It would be good if your hubby could also do as much as possible for himself. It is harder but in the end, much more rewarding for all involved. However, I am a much lower injury so I know that I am able to do more. That is why I would suggest you get help other than you for part of the time.

I would also recommend that you read this article together:http://networkedblogs.com/j2n6K

[mcwriter]

Boy are you soooo not alone!
I know that is nice to hear from others with the same experiences, but then when you are through reading the responses you look around the room and there you are....still facing the same things, still the same feelings that brought you looking for some kind of rescue from cyberspace. Thing is, for many of us on here, this truly is our sole support because of the lifestyles we have where there are few living humans around us who understand what we deal with day in and day out. I've been where you are time and time again, it's an uphill battle and I have to tell you there really is hope---you aren't going to always feel this way, you can and will be happy. It's a learning process, but I'll bet you didn't want to hear that!---read on anyway...

That said, there are some things you have to do for your own survival. I don't have the perfect thing to tell you, I wish I had a magic wand, (I hear those are on back order). but here are four things for you to address:

1 - Your Body - You have to take care of your own health. If you let yourself get run down, so does your immune system and then you open yourself up to illness. This also means you have to get rested somehow, even power naps can help, but eating right and getting rested will give you more energy. I know, easier said than done, but wait there's more...

2 - Your Mind - You have to guard what's going on in your head---negative thoughts can snowball on you without your realizing it. Try to keep a constant vigil and make it a point to combat negative thoughts with positive ones. Know your enemy and don't let it get a foothold.

3 - Your Soul - You have to feed your soul, it doesn't feed itself. You have to remember the things that give you pleasure, make you smile, make you feel happy. Most of the time you find you can't do something you would like, but you CAN think about it and that little spark can stay with you until you can do something you enjoy. You will find yourself looking forward to something and your heart will feel lifted.

4 - Your Voice - You haven't found yours yet, but you will. It is the result of a combination of things, but before it kicks in you have to think about and examine a few things...what you do not realize is that you are actually the Queen of your household. I know that sounds silly, but stick with me here...as Queen you have the power to rule, you have the power to make decisions to run your kingdom in the best, most efficient way possible to the benefit of everyone in your kingdom, and as Queen, because of all that you do you have the right to speak up when things are not going the way they should. (Yes, I said it.)

I know, I know, the torture of having things one way and wanting them to be a different way is like being bound up with a million rubberbands. You can strain and sort of reach out, but they snap your arm right back and it's painful! Dealing with family is probably the worst, but you have to realize that what they see on the surface is the whole story to them. They don't know anything unless you tell them (same with your husband & son), they may have no idea you need help, or some may just not want the responsibility or commitment to help with your husband's care.

You won't know until you ask, but get into the right mindset first. Be sure of what you actually want and have a back-up plan for everything. Think about how you can schedule your time---for your husband, for son, for your home, for yourself---then, think about where you would like to use the extra help and list the possibilities of who might put in a few hours, so that you have definite times and duties in your head. Then present your idea to your own family, recruiting their help to try out your idea. What this does is get them involved so that you can work as a team. With everyone helping each other you will have created allies which in turn will give you the strength to find your voice in order to speak to his family about pitching in, because it won't be just for your husband, they will be helping all of you, everyone will benefit.

You've gotta remember something very important though, when asking family for help....you can't just say, "Hey I need you from 1pm to 3pm on Tuesday because I've just gotta get out of the house! Can you do this for me?" That is like a one-shot deal and you can't depend on that being repeated more than once or twice. They want to feel valued as much as you do and this is why you need to get your own family on board with this first. If you want your relatives to act like they care and be involved with your husband's care you have to act like family and be just as interested in them. Talk to them, shoot the breeze out of the blue, do something nice for them, get to know them. When you establish a relationship with them, helping you out won't be a one-shot deal...helping you will be part of their lives. And look! Everyone benefits again!

Don't be upset of you run into a brick wall however, because some people just can't handle what you do. If that is the case, you will have already made your back up plan list, right?

Take a hot, steamy bubble bath. Luxuriate yourself for a little while and clear your head. There are a lot of ways that you can make time for yourself so that you can rejuvenate and re-energize. What does wonders for me is that I discussed with my husband a two-hour block of time early in the morning before everyone is up. It took me quite awhile, really to go from just sitting and listening to the birds in the wee hours to actually doing something with that time. I even had to wear headphones for a while because my entire being was on constant alert for any sound where I might be needed so I couldn't relax. Try different things.

The most important thing to get out of this is that you have to give yourself permission to do what you need for you. It is not an easy task. But let me tell you, the kingdom is happy when you are happy! So go ahead and try on that crown.

Edited by mcwriter, 13 June 2011 - 10:14 PM.

[pinkcloud]

Hey mcwriter, great to see you around here again, lovely post that real comforting and thoughtful, I'll show that to me loved ones too.

Either of you seen the thread a few down from this one by dolomite films.....if not - view - I think you will agree its sums up that feeling it hard, is very natural and perfectly ok had me in floods of tears x

[Stand]

There definitely needs to be a clear-cut separation between being the wife and the caregiver. I made that mistake of allowing my fiancé to take care of me and pretty much do everything at times. Needless to say, she is now my ex fiancée.

[Simba]

Your post totally makes sense to me I am much in the same boat as you. It's hard to keep going when you reach that point, I try to take one day at a time and not think about it in the longer term anymore as otherwise it becomes overwhelming.

Don't be scared to ask for help, especially if his parents are so close, they should at least provide you with a few hours down-time and relief to catch your breath, even if it's just a matter of making drinks and supervising etc I am sure it would be a huge help to you. Be sure to explain it to them properly you will find that a lot of people don't stop to think about the continuous work load & stress caring full-time for a loved one entails.

[megatrig]

This really has hit home recently as I've been really unwell and my wife has taken on the role of "caregiver" rather than "wife".

It is awful for both of us! The pressure and stress is unreal!!!!

[caseyann]

Hi all
thanks for all ur replys they really helped feeling alot better now have a few bad days ever now and then no point In asking his family for help cause they don't bother when u do ask to busy flying around in There big cars

[The Wife]

I totally understand the parents thing. When my husband first had his stroke his mother was there all the time putting on a big show about how her "baby boy needed her".

After he went to rehab, she came twice to see him. Then had a fit when I pulled him out, even though he was being treated horribly.

[catmint]

megatrig, on 19 June 2011 - 02:34 PM, said:

This really has hit home recently as I've been really unwell and my wife has taken on the role of "caregiver" rather than "wife".

It is awful for both of us! The pressure and stress is unreal!!!!

Megatrig

Been there..done that. After many years as living life the way we wanted to every thing started to go backwards a few years ago. Combined with getting older my husband had some major health issues, one on top of another.

My role as 'wife' seemed to be being swamped by the new role of 24 hour carer. We never had any help, our choice. But we have had to accept it. We both dislike it but we are slowly adapting.

[biggdoggpa]

mcwriter, on 13 June 2011 - 10:09 PM, said:

Boy are you soooo not alone!
I know that is nice to hear from others with the same experiences, but then when you are through reading the responses you look around the room and there you are....still facing the same things, still the same feelings that brought you looking for some kind of rescue from cyberspace. Thing is, for many of us on here, this truly is our sole support because of the lifestyles we have where there are few living humans around us who understand what we deal with day in and day out. I've been where you are time and time again, it's an uphill battle and I have to tell you there really is hope---you aren't going to always feel this way, you can and will be happy. It's a learning process, but I'll bet you didn't want to hear that!---read on anyway...

That said, there are some things you have to do for your own survival. I don't have the perfect thing to tell you, I wish I had a magic wand, (I hear those are on back order). but here are four things for you to address:

1 - Your Body - You have to take care of your own health. If you let yourself get run down, so does your immune system and then you open yourself up to illness. This also means you have to get rested somehow, even power naps can help, but eating right and getting rested will give you more energy. I know, easier said than done, but wait there's more...

2 - Your Mind - You have to guard what's going on in your head---negative thoughts can snowball on you without your realizing it. Try to keep a constant vigil and make it a point to combat negative thoughts with positive ones. Know your enemy and don't let it get a foothold.

3 - Your Soul - You have to feed your soul, it doesn't feed itself. You have to remember the things that give you pleasure, make you smile, make you feel happy. Most of the time you find you can't do something you would like, but you CAN think about it and that little spark can stay with you until you can do something you enjoy. You will find yourself looking forward to something and your heart will feel lifted.

4 - Your Voice - You haven't found yours yet, but you will. It is the result of a combination of things, but before it kicks in you have to think about and examine a few things...what you do not realize is that you are actually the Queen of your household. I know that sounds silly, but stick with me here...as Queen you have the power to rule, you have the power to make decisions to run your kingdom in the best, most efficient way possible to the benefit of everyone in your kingdom, and as Queen, because of all that you do you have the right to speak up when things are not going the way they should. (Yes, I said it.)

I know, I know, the torture of having things one way and wanting them to be a different way is like being bound up with a million rubberbands. You can strain and sort of reach out, but they snap your arm right back and it's painful! Dealing with family is probably the worst, but you have to realize that what they see on the surface is the whole story to them. They don't know anything unless you tell them (same with your husband & son), they may have no idea you need help, or some may just not want the responsibility or commitment to help with your husband's care.

You won't know until you ask, but get into the right mindset first. Be sure of what you actually want and have a back-up plan for everything. Think about how you can schedule your time---for your husband, for son, for your home, for yourself---then, think about where you would like to use the extra help and list the possibilities of who might put in a few hours, so that you have definite times and duties in your head. Then present your idea to your own family, recruiting their help to try out your idea. What this does is get them involved so that you can work as a team. With everyone helping each other you will have created allies which in turn will give you the strength to find your voice in order to speak to his family about pitching in, because it won't be just for your husband, they will be helping all of you, everyone will benefit.

You've gotta remember something very important though, when asking family for help....you can't just say, "Hey I need you from 1pm to 3pm on Tuesday because I've just gotta get out of the house! Can you do this for me?" That is like a one-shot deal and you can't depend on that being repeated more than once or twice. They want to feel valued as much as you do and this is why you need to get your own family on board with this first. If you want your relatives to act like they care and be involved with your husband's care you have to act like family and be just as interested in them. Talk to them, shoot the breeze out of the blue, do something nice for them, get to know them. When you establish a relationship with them, helping you out won't be a one-shot deal...helping you will be part of their lives. And look! Everyone benefits again!

Don't be upset of you run into a brick wall however, because some people just can't handle what you do. If that is the case, you will have already made your back up plan list, right?

Take a hot, steamy bubble bath. Luxuriate yourself for a little while and clear your head. There are a lot of ways that you can make time for yourself so that you can rejuvenate and re-energize. What does wonders for me is that I discussed with my husband a two-hour block of time early in the morning before everyone is up. It took me quite awhile, really to go from just sitting and listening to the birds in the wee hours to actually doing something with that time. I even had to wear headphones for a while because my entire being was on constant alert for any sound where I might be needed so I couldn't relax. Try different things.

The most important thing to get out of this is that you have to give yourself permission to do what you need for you. It is not an easy task. But let me tell you, the kingdom is happy when you are happy! So go ahead and try on that crown.

well said!!!!!

[mcwriter]

Yeah, we never had family willing to help out and I think how his family behaved was more of a shock to me than anything. They have always been very clannish, and very proud about taking care of their own, but it's not the case at all.

Our kids were small, about 4 yrs and an almost 1yr old when my husband had his botched up surgery on his back where he acquired an infection they could not identify. We moved in with his mom and sister at the time thinking we would have help. Ha!

My husband couldn't do anything by himself at that time and the infection was causing him to literally soak the sheets of his hospital bed every few hours. I was so scared at the time, he was in so much pain, he couldn't hardly eat anything and every few minutes he needed something, even just help to move or turn and he never slept, neither did I. This was back when I was without a clue and learned to change sheets on a bed with someone in it, you understand, and a baby still in diapers.

Do you think grandma or auntie might have at least helped me by changing a baby diaper? Not a single one. They did cook however, leaving meals in the kitchen for me to dish up for my family, that's the one thing they did. They didn't even come in to see him in the other room more than once or twice and they were in the same house for goshsakes! It was the most horrible experience and I have never understood why they are the way they are. It's kinda funny too, because years later when my mother-in-law's health declined, I was one who took care of her as well as my husband and the kids of course and she said I took better care of her than her own daughter.

This was my rude awakening to how some people cannot deal with illness or injury. I'll never understand it, but I can accept it. I can accept it as a deficiency on their part, that they are not equipped to address this mentally and/or emotionally, so they choose to pretend these things don't exist. I feel sorry for those people because what this does is repress their potential to give and receive love on an even deeper level. They are content with status quo and avoidance of the unpleasantness of a situation and of the pain of others because they cannot deal with their own pain over it or their own reaction to it.

Once I figured out that I cannot assume that I can depend on others to meet my expectations, I had a much better view of how to go about what was set before me to do. It not only helped me to find my voice and be my husband's advocate, but it gave me one less thing to deal with, and that was the surprise and disappointment I have had in others who are simply unable to show care and consideration for another human being. I have learned not to expect it from other people and then when I do come across it, that is the surprise.

...and all is well in the land.