11 replies to this topic

[jada01]

Hi There
I am a 23 year old married to someone who has level C5 -C6. I have just come across this website and feel the need to express myself.
My partner had his accident when he was 16 and I was the same age, we were broken up at the time and I decided I wanted to be his partner again inspite of what had happened and after alot of persuation he agreed. So I have been with him every step of the way. I am now getting burnt out as I get him up everyday before I go to work. I have a corperate job Mon Fri and then come home and help him out in every way I can. I have been his carer for the past 5 months but am finding it is hard to maintain a relationship as his wife / carer. We seem to fight all the time over every little thing, we do not go out much as I am always to tired. I get angry at him for any little thing. I know it is selfish in a lot of ways because I could not imagine how he feels not being able to move ect after being such a pro active person.

I am not sure how to get the balance back, if anyone has some sort of advise I would appreciate it!. I would never think about leaving him, but things are so stressful sometimes. I also want to look at the possibility of having children, but where do you start????
Just needed to get this off my shoulders, I am sure there are plenty of other people experiencing the same thing!!!

[kdenon01]

Wow. You guys have been together for quite sometime! Why has it all of a sudden gotten stressful? Is it because you have now become his caregiver? Maybe you should hire help. My fiance is c5-c6, and we have been warned again and again that it can ruin a relationship to play a caregiver role, rather than just being a wife. I know that as soon as I start to feel the way you do...I will hire outside help.

For a while I was taking care of my fiance throughout the nights, and working full-time at an investment firm throughout the days. It was VERY stressful. And I would find myself snapping at him over the dumbest stuff. But thankfully I was able to quit my job about a year ago...and I haven't felt that way since.

We are also thinking about having children soon. We met with a wonderful Urologist, who has a lot of experience with SCI. My fiance is going in on Wednesday to try the Vibratory-stim, to see if he can ejaculate. If he can...than we can try to get pregnant at home! If he is unable to, they will try to use some sort of electro-rod thingy [not what it's called]...eeek. Which I have heard can be very painful. So wish us luck!

And I wish you luck...defiantly take some time for yourself. Go to the spa, that's what I do.

[YYZ]

Hopefully this isn't "damned if you do, and damned if you don't" syndrome personified. It is funny how many caregivers moan about what they do, and then can't stand back and let someone else do the job.

In an ideal world, you sit down and analyze what is causing the strain in the relationship. Then you take the appropriate steps to resolve the issues.

YYZ

[Emmy]

Hi. Sounds like you have your hands full! I'm 27 and married to a C6- sounds about the same... only we were married before his accident. He was injured almost 3 years ago. We don't have any hired help here- just me, him and my 8 yr old son. I work Mon-Friday and he goes to therapy. He drives himself, which is a big help. In the summer he has a lawn mowing buisness. I do most everything for him that he needs, with the help of his family. It is stressful, and sometimes I resent him. Sometimes I want to come home and sit on the couch and not have him asking me to help him with something... even as simple as getting a drink. I find myself getting mad at little things a lot.

We do spend time apart. At least every three months or so I'll go away for the weekend- with some of my girlfriends or family and take a break. His parents help a lot and his younger sister will sometimes come to our house and stay. BIG HELP! It took me a while to allow people to help, but now I know that if we are going to be happy, I have to!

I agree with the SPA too!! I try to do that once a month- just to relax! I couldn't do without the SPA!

Good luck- and this site really does help! It's great to have people understand!

Emmy


We are also thinking about having children soon. We met with a wonderful Urologist, who has a lot of experience with SCI. My fiance is going in on Wednesday to try the Vibratory-stim, to see if he can ejaculate. If he can...than we can try to get pregnant at home! If he is unable to, they will try to use some sort of electro-rod thingy [not what it's called]...eeek. Which I have heard can be very painful. So wish us luck!



That is awesome! Good Luck!

Emmy

[KarenFerguson]

Hi, I'm glad you found this website. My hubby is a C5 quad and thankfully we have a situation where we both don't have to work, so we can be around each other most hours of the day. He's such as easy going guy that I don't get too stressed out with "helping" him do stuff. For instance, today he made me a grilled cheese sandwich because I wasn't feeling well. I still had to get a frying pan out for him, but it was just the gesture of making me lunch that made my heart fill, despite me having to do a bit for him.

There isn't anything wrong with getting outside help. Hubby has an aid that comes three times a week to help with the bowel program. Other than that I get him up in the morning and help him into bed at night. This has just become a routine and I hardly think of it as work or stressful at all - we joke and talk out stuff while I'm helping him into and out of bed. I suppose your attitude has a lot to do on how stressed you get on helping your husband.

Also, my hubby does a lot for himself through out the day. He can make himself breakfast, lunch & dinner (if I'm not around), drive (like your husband) and if I lay everything out for him to get into bed (condom cath, leg beg ...etc) he can get into bed at night with out me being there (we only tried that once when I was out of town & boy was I nervous!). I'm sure your husband might be more capable than you might think (of course every disability is different). I'd suggest talking to him about what you posted here - you are married after all, he deserves to know what you're thinking.

Oh and to kdenon01 - hubby & I have been trying to have a baby for 7 months now. Both of us are perfectly fine, however it's still taking some time to get pregnant. The average couple only has a 25% change to conceive each month! Sorry to sound like such a Debbie Downer, but I just don't want you guys to feel bad if you don't get pregnant right away. I'll be thinking of you guys! Oh and one more thing ... hubby & I use this method:
http://www.apparelyz...?showtopic=2507 we talked to our fertility doctor and he said this is a very common way for many couples to conceive.

Edited by KarenFerguson, 31 March 2008 - 02:26 AM.

[linda]

YYZ, on Mar 30 2008, 02:37 PM, said:

Hopefully this isn't "damned if you do, and damned if you don't" syndrome personified. It is funny how many caregivers moan about what they do, and then can't stand back and let someone else do the job.

In an ideal world, you sit down and analyze what is causing the strain in the relationship. Then you take the appropriate steps to resolve the issues.

YYZ

YYZ I agree with you, some don't step aside. I tired & stressed myself sick for 21 years with my daughter, but I still would not let any one else help. My feeling was that.... no one would be able to care for her the way I cared for her. Finally I realized I was being anal about her care, it was finally time some one else stepped in and took over.

I do think for some the reason for hanging in so long despite not wanting to... is because of fear, fear that there loved one wont be cared for properly. In my case it was... they wouldn't do it as well as I could. Lol, was I wrong!!! the carers my daughter hired are wonderful! I couldn't do any better myself. Now my daughter and I are having a normal mum daughter relationship, and it sure does feel good.

[linda]

jada01, on Mar 29 2008, 11:55 PM, said:

Hi There
I am a 23 year old married to someone who has level C5 -C6. I have just come across this website and feel the need to express myself.
My partner had his accident when he was 16 and I was the same age, we were broken up at the time and I decided I wanted to be his partner again inspite of what had happened and after alot of persuation he agreed. So I have been with him every step of the way. I am now getting burnt out as I get him up everyday before I go to work. I have a corperate job Mon Fri and then come home and help him out in every way I can. I have been his carer for the past 5 months but am finding it is hard to maintain a relationship as his wife / carer. We seem to fight all the time over every little thing, we do not go out much as I am always to tired. I get angry at him for any little thing. I know it is selfish in a lot of ways because I could not imagine how he feels not being able to move ect after being such a pro active person.

I am not sure how to get the balance back, if anyone has some sort of advise I would appreciate it!. I would never think about leaving him, but things are so stressful sometimes. I also want to look at the possibility of having children, but where do you start????
Just needed to get this off my shoulders, I am sure there are plenty of other people experiencing the same thing!!!

Jada01
My story is with my daughter not a DH. I know its a bit different relationship, but the same principal. I think you will find your relationship with DH will greatly improve if you hire a carer. My relationship with my daughter had been drastically going down hill, once we hired a carer and I stepped aside we regained our mum daughter friend ship again.

Best of luck hon!

[kdenon01]

Quote

Oh and to kdenon01 - hubby & I have been trying to have a baby for 7 months now. Both of us are perfectly fine, however it's still taking some time to get pregnant. The average couple only has a 25% change to conceive each month! Sorry to sound like such a Debbie Downer, but I just don't want you guys to feel bad if you don't get pregnant right away. I'll be thinking of you guys! smile.gif Oh and one more thing ... hubby & I use this method:
http://www.apparelyz...?showtopic=2507 we talked to our fertility doctor and he said this is a very common way for many couples to conceive.

Karen,

Thanks for that link it was EXTREMELY helpful. I know not to get my hopes up. We were planning on waiting until May 2009 to start trying. But after hearing so many peoples stories...of it taking so long...I think we are going to start trying maybe in the fall. That link really gave me a heads up of what to expect!

Thanks!
-Kristen

[qbounce]

Great link w/ advice from people who are making things work, thank you.

I agree with YYZ and Linda about the caregiver situation. Even if you have to adjust your husbands bowel routine (ie. from every night to every-other) and have a carer only help those nights. I know. . . the cost can add up!

Have you looked into what your insurance might cover to help with the cost of a caregiver?

Also, there are definately some bad carers out there who just do enough to 'get by' so it's your obligation to watch, check in, and verify with your man that things are working out properly,,and if not then get another.

btw. . . My caregiver's waaaay better than my wife was!! lol

Good luck!

[linda]

qbounce, on Mar 31 2008, 01:44 PM, said:

Great link w/ advice from people who are making things work, thank you.

I agree with YYZ and Linda about the caregiver situation. Even if you have to adjust your husbands bowel routine (ie. from every night to every-other) and have a carer only help those nights. I know. . . the cost can add up!

Have you looked into what your insurance might cover to help with the cost of a caregiver?

Also, there are definately some bad carers out there who just do enough to 'get by' so it's your obligation to watch, check in, and verify with your man that things are working out properly,,and if not then get another.

btw. . . My caregiver's waaaay better than my wife was!! lol

Good luck!

Gbounce do you find your relationship with your wife to be more comfortable, less stressful now that you have a carer. I have found my relationship with my daughter to be much less stressful and more comfortable since she got her carer.

I think if any one has a family carer they really should consider hiring some one else. caring for a family member will only eventually cause more stress and possibly ruin a relationship.

[qbounce]

Yes, Linda. . . the concerns a spouse/ family member have are definately eased, I think, once an extra carer is added. It gives the other person some well deserved 'me time' to relax, even for a few hours a week.

[Mike (c4-5) & Lorena]

jada01, on Mar 30 2008, 02:55 AM, said:

Hi There
I am a 23 year old married to someone who has level C5 -C6. I have just come across this website and feel the need to express myself.
My partner had his accident when he was 16 and I was the same age, we were broken up at the time and I decided I wanted to be his partner again inspite of what had happened and after alot of persuation he agreed. So I have been with him every step of the way. I am now getting burnt out as I get him up everyday before I go to work. I have a corperate job Mon Fri and then come home and help him out in every way I can. I have been his carer for the past 5 months but am finding it is hard to maintain a relationship as his wife / carer. We seem to fight all the time over every little thing, we do not go out much as I am always to tired. I get angry at him for any little thing. I know it is selfish in a lot of ways because I could not imagine how he feels not being able to move ect after being such a pro active person.

I am not sure how to get the balance back, if anyone has some sort of advise I would appreciate it!. I would never think about leaving him, but things are so stressful sometimes. I also want to look at the possibility of having children, but where do you start????
Just needed to get this off my shoulders, I am sure there are plenty of other people experiencing the same thing!!!

I do not understand why so many people equate love with care giving. And, why so many women feel guilty. I also blame the women as men are usually takers and women are usually givers. Women let their guilt run their life. You love him, he loves you? If he loves you he would easily understand your need for help. But we ladies make it easy to make it easy for our men. He is still human but he is using his disability to make you feel guilty. And, your kind heart is letting him. Now stop. What would he do if you left him? He surely would be in trouble then huh?

Abuse is abuse in any marriage. Both partners disabled or not need to help each other. You are fighting because you are emotionally and physically exhausted. You cannot be a 100% caregiver and 100% wife and expect to be a 100% mother in the future. You would have to grow more arms.

First, he needs to find an attendant for 5 days and 5 evenings per week. I do the weekend mornings and 2 week day evenings. This keeps me fresh and allows me extra rest when I need it if I get sick. Sure it is difficult to find, train and keep reliable attendants. But would he rather loose you? It does take time and effort but in the long run, you both won’t be stressed.

If you both want a family, what will he do when you are pregnant or have kids? Does he expect you to be the wife, husband, mother, father, caregiver, maid, chef, lover, and all around happy person? If so, you need to put your foot down. A marriage is two people. Disabled or not.