Not fair for him

[soccer3]

We have been married for 22 years. He is a wonderful man, but as my disease has progressed I don't think it's fair for him to live a life like this

I am depressed, miserable etc.. (and no more pills if anyone asks) I feel like a burden, not interested in sex anymore (again not fair)

As hard as it is, better for worse, I just don't want him to endure this anymore. And who really knew how "worse" was going to actually be like lets be real.

I want to leave and just live in an assisted living.
He can go on with his life and actually have one
Linda

[tommylee]

We have been married for 22 years. He is a wonderful man,

I want to leave and just live in an assisted living.
He can go on with his life and actually have one
Linda

What does he want?
You said "he is a wonderful man".
He deserves to have an opinion?
He may want to take care of you?

Sorry you are so down right now.
Do you think it would make him happy if you left him?

He may be hurt that you doubt his devotion?
While it may be difficult to live with a person with a chronic illness, your DH may prefer to see that you are cared for by someone that loves you?

Has he said, "I want to be free of you."?
If not, there is a good chance that you will only be hurting a man that has been good to you for 22+ years.

I understand the feeling of not wanting to burden your spouse and wanting to leave or not let them see you in a bad way... but does that give us the right to dump them?

I would love to spare my wife the pain of being stuck with me. However she is very hurt and sad everytime I mention it.
It seems leaving her would only make me feel better or ease the feelings of guilt I struggle with because I feel like she got ripped off getting me as a husband.
She may be sad and angry about what happened to me. (but she still loves me.)
It may be difficult to face her everyday feeling like a failure but I think it would break her heart if I left her... so I stay.

Please ask your husband what he would like.
You said he is a good man. He deserves to be heard.

22 years does not happen by chance.
It sounds like you have a wonderful devoted husband. Please show him some respect and let him make the choice to stay and care for you or not. (why dump a great guy?)

If he wants out...it is very nice for you to offer the option.
But if he wants to stay with you it would be wrong to force it on him. What has he done to deserve to be dumped?

22 years??? It sounds like he loves you and is devoted to you. What do you think?

[rubberlegs]

Do all Spouses make good care givers?

I don't want my spouse to begrudge his life and mine because of my disability because society and some religions put that in their marriage ceremony.

That's not what I stand for; and, not in any way; how I expect to be treated. I want my spouse to be my spouse, not my nurse.

That's my plan. But you have some heart to heart time, I think about my dignity and my spouse's dignity and what I will say to family members and friends. I have been priming them little by little as the years pass.

Good luck!

[Jules A]

Do all Spouses make good care givers?

I don't want my spouse to begrudge his life and mine because of my disability because society and some religions put that in their marriage ceremony.

That's not what I stand for; and, not in any way; how I expect to be treated. I want my spouse to be my spouse, not my nurse.

That's my plan. But you have some heart to heart time, I think about my dignity and my spouse's dignity and what I will say to family members and friends. I have been priming them little by little as the years pass.

Good luck!

I agree and to answer your question even most trained professionals aren't adequate care givers for someone when they become severly disabled so I would doubt many spouses would be.

I'm getting my finances in order and will be heading to a facility when I'm no longer able to be cared for by a home health care attendent. God I hate this disease.

[inmoni5]

I am newly dxd (Feb). I have given alot of thought to this topic. I don't believe it's wrong to think this way. I've thought about it. I have 3 small children and I don't want this disease to cause any hardship on anyone. I am hoping that my children will be at least old enough by the time I have to have assistance. I don't want to burden my children or my husband. When it comes to it, I will put myself in assisted living because I don't want to burden anyone. I could never ask my husband or my children to be a caregiver.

I guess I just feel that it's not their place. I've told my husband how I feel and he really had no comment therefore I am thinking that he would support my wishes.

[MSGina]

Tommy Lee wrote: I would love to spare my wife the pain of being stuck with me. However she is very hurt and sad everytime I mention it.
It seems leaving her would only make me feel better or ease the feelings of guilt I struggle with because I feel like she got ripped off getting me as a husband.

I agree with Tommy.
Don't misunderstand, I totally get where you all are coming from.
I've had MS 23 years. I've been married 22 1/2 years.

I have told my husband on numerous occasions to leave. To start life over and be happy over the years.

I had no idea how much those words were hurting him.

To him, those words were saying "I don't love you as much as you love me", "I don't trust you to stay", "You're disposable".

I realized that my thoughts and planning and words were really reflecting my fears.
I was afraid he didn't love me enough to stay, I didn't trust him to stay, I felt disposable.

If you need to leave because you are so disabled, ill that your husband cannot care for you without 24 hour help, that is a decision the 2 of you must make together.

Not bragging here at all but I doubt any of you are at the place I am right now. My MS is in advanced stages, some doctors call it late stages, some call it end stages, I am on oxygen, it has affected my autonomic nervous system (bowls, bladder, heart, lungs, diaphragm, swallowing) but I am still at home.

My husband, the love of my life is here.
He has his bed pushed together with my hospital bed.

Often he sleeps sideways on his (our) queen bed with his head in my lap.

He doesn't want to be very far from me.

I don't think I would ever be able to sleep again if I knew my husband wasn't in the room with me. He says the same.

We've been through some rough stuff over the years. I've been mad enough at him to leave!!
But that's relationship stuff, not MS.

Get all this stinkin' thinkin' out of your heads for now.
You cannot enjoy your children (by the I've raised 4, the youngest 2 are 20 and 18 and still at home) or your husband if you're always planning ahead.

Live for today. Enjoy everything you can, take lots of pictures.

Journal your feelings and fears instead of dumping them on your spouses and/or children who aren't equipped to deal with them.

Just my opinion and experience (for what it's worth).

[Toomnyhats]

LIFE isn't "fair"!

Well said MSGina & Tommy Lee.

When I married my husband it was with the understanding I would someday have to care for him. He is 18 yrs my senior & no health issues other than morbidly obese (although he has lost 60+lbs since June).

Fast forward 5 yrs: I was dx w this MonSter. Although I am currently in the early stages, he does do my shots. When I had ON, he became my chauffeur.

I have babied him through the flu & colds (you know how men can be ).

Although none of this compares to the care some need, it shows we do what needs to be done for those we love. What if your parent or sibling or child needed care? Would you put them in assisted living or nursing home b/c it wasn't "what you signed up for"? Or would you take care of them to the best of your abilities for as long as you could?

All of us need to think about what TommyLee said -- are we projecting our own fears on our spouse? If the spouse wanted to leave, wouldn't they probably already be gone? (We've all read on here about spouses who hit the road when a dx became official or sx got bad.)

If your spouse said "no, I'm not leaving", take them at their word & love them even more!

[inmoni5]

I understand where you all are coming from. There are days that I feel soo guilty. I don't know why I feel guilty...I guess it's that I feel like I've let everyone down. Sometimes, I just feel that I won't be able to enjoy the things that we like to do together anymore, I know that we can find new things to enjoy together. My husband is a creature of habit and absolutely HATES changes. With my diagnoses I did not hear very nice, comforting words. I know it was because he didn't know how to take it. He has yet to inform himself on the disease. He refuses to go to any couples support groups. I am in this on my own. Maybe over time he will get better with it, maybe he won't. I guess me thinking this is unfair for him, should actually be it's unfair for me? I don't know.

I don't think that I could ever depend on him to be a supportive caregiver and that's why I feel that once or if I progress to a more disabling stage, I will go on my own, maybe it's for myself. Hopefully, things will change and once he gets past the change....he will understand that he needs to be supportive. But as for now I will continue to be the wife I always have been just with limitations, I guess

[tommylee]

I don't think that I could ever depend on him to be a supportive caregiver and that's why I feel that once or if I progress to a more disabling stage, I will go on my own, maybe it's for myself.

Thats the tricky part.
It is hard to justify leaving someone that has decided to stick it out?

Many statements you have made sounded familiar to me .
Does that give us any moral high ground?
My wife is stuck working alot harder than she ever imagined and not living the life she expected...But she has stayed with me.

How can I leave her? That does not seem right?
I just pray for improvement.

[inmoni5]

Tommylee,
You have a very good outlook on this. I value what you say. For some reason after you post, I feel different. You are right, he IS sticking by me...would it be fair for him? He's going to be investing his years in me as well, and then I just walk away? He may not be the most sensitive caring husband but...he is my rock, sometimes my strength, he pushes me to not let this bring me down. True it may not be in the way I want to hear it. Whether it ticks me off or not it still motivates me.

Tommylee, your words motivated me to thinking differently when I was Dazed and Confused and they are helping me now. I'm sure I will need your help again....my emotions are on a rollar coaster ride from H*##! Thank you.

I'm so very glad to have a place to unload all my fears and anxieties. I would never unload on the people I love because I have to be the strong one, but here I can have meltdowns, here, I am understood. Just to be able to get it out and hear others' stories puts me at ease and I'm able to get back on track again. Hugs to you all, for just being there.

[Krysalus]

I was worried too

When I first decided to move to Md to be with my bf, I was worried about what he was getting himself into. The people here had some great advice. I agree with many of them. He knew I have MS and wanted me anyway.

One thing I became guilty of was having my bf's part of the conversation inside my head instead of listening to what he said. I had practically convinced myself that he couldn't possibly want to be with me because I have MS.

The unfair part was I was having my half of the conversation and his! Once I stopped and let him have his own half I realized that this guy really loves me and the dx is just a part of the me he loves. Noone is perfect. Some of us are less perfect than others.

I think that we get so worried and scared for ourselves, we forget that there are people in our lives who love us and care for us regardless of our symptoms. It's not fair for us to make their decisions for them. I know I'd hate it if my bf tried to make my decisions for me.

[Toomnyhats]

Hang in there!

I understand where you all are coming from. There are days that I feel soo guilty. I don't know why I feel guilty...I guess it's that I feel like I've let everyone down. Sometimes, I just feel that I won't be able to enjoy the things that we like to do together anymore, I know that we can find new things to enjoy together. My husband is a creature of habit and absolutely HATES changes. With my diagnoses I did not hear very nice, comforting words. I know it was because he didn't know how to take it. He has yet to inform himself on the disease. He refuses to go to any couples support groups. I am in this on my own. Maybe over time he will get better with it, maybe he won't. I guess me thinking this is unfair for him, should actually be it's unfair for me? I don't know.

I don't think that I could ever depend on him to be a supportive caregiver and that's why I feel that once or if I progress to a more disabling stage, I will go on my own, maybe it's for myself. Hopefully, things will change and once he gets past the change....he will understand that he needs to be supportive. But as for now I will continue to be the wife I always have been just with limitations, I guess

inmoni5, this sounds like my DH! On the way home from my dx I asked him what he was thinking. He said 'we'll just deal with it." OK, so neither of us knew what this dx could lead to, but I educated myself. He didn't, until we went to marriage counseling. Pastor was shocked, so much so DH was (very kindly & gently) read the riot act about not educating himself about this disease. Ever since then he is more understanding -- only took almost 2 yrs!

[soccer3]

out of frustration

I guess that when things get really hard we vent here. You are right 22 years of the good and bad means alot. I know if things were reversed I would always be there for him.

It is just so hard on the hubby and kids from my perspective. I have always been the one doing everything for everyone that's why this is a tough one to swallow.

Thanks Tommylee for reminding me what these marriage vows were meant for!!
LInda

[rubberlegs]

I perfer to think that I would rather have the kind of Spouse -
who is willing to end the relationship IF-

The spouse is going to begrudge the MS silenty, while looking like a good caretaker in the public eye. Forget it!