Relationship is gone

[Tracy500]

I don't know of anyone else is experiencing this or has. It's been 2 years and I'm his caregiver, not wife. We are married, but he is basically paralyzed but all mind. Beside
Being mean to me. He yells every night when I don't lay with him. I don't want anything to do with that part. I wish I could leave. But in sickness and in health, this situation takes the cake on in sickness part. He is so mean if he was healthy I would have left. But now I can't, I'm stuck. I wish there was a way out. And no I don't want to hear from anyone, how if I were in his shoes crap, b/c they don't live with this monster. I'm sad this is happening to my family, but I'm not happy, I don't have the patience for disablitites. I'm strong enough to admit it. It's not for everyone. What am I to do?

 

[WendyWooG]

Hi Tracy
You are not the only one who feels like this. From the day the first neurologist told us that they thought what I had was motor neurone disease, my husbands connection with our relationship changed. He moved into the spare room for sleeping and distanced himself from our marriage. I don't want you to get the wrong impression he is always supportive, and he and my daughter look after me wonderfully. It's just that the partnership side of our life seems to be gone in that way. I am now someone to be loved and cared for but not to be, " in love with"
If I ask for a hug he will hug me but that kind of contact is never volunteered.

This is something that should not ever be demanded or forced, if you don't want to do something don't! I can see both side of this and you should do only what you feel comfortable with. It is putting too much extra emotional stress on you as a carer.

I am still going through the diagnostic roller coaster and am in the middle of Ivig treatment trial, it doesn't seem to be working but I hope that if it does thing may change.

I don't want anyone to get the wrong impression, I am not angry about my situation, just a little sad, I feel that he is kind of grieving in advance and protecting himself, it is his way of dealing with a horrible situation. He is here with me supporting me and is kind and caring and funny and helping me the best way he can in the same way that I am dealing with this in the best way I can. We all cope in different ways and I think being understanding is the key.

I am quite a private person so have found this quite a challenge to write. I sincerely hope it helps you a little.

Wendy x

 

[KimT]

Was he mean before the disease? If so did either of you get counseling? Sounds like you need a break and maybe some counseling.

 

[Ells]

Tracy,

I applaud your honesty.

You say "I'm not happy, I don't have the patience for disablitites", by staying with him your relationship will only get worse and become toxic, which would take a heavy toll on the mental health of you both.
I guess at this stage, you've discussed your feelings w/ him, even if he didn't listen to you and that FTD isn't the cause. If you left, would one of his family step up?
Where you go from here is up to you.

Ells.

 

[jayswife]

Tracy - I am so sorry. I am going through the same thing right now. I understand and I know how awful it is.

 

[kmarie]

Tracy, I thought I was the only one that feared not having the patience for disabilities. My hubby is still mobile and involved in daily life. But I fear that in the future when he needs the real care, I will be too selfish to care for him.
I hate hearing how your husband treats you. I was in an abusive relationship in the past. It is very hard to break the cycle, adding ALS to that is overwhelming. Please find a counselor, even a lay counselor if you can't afford a certified one. You need someone to listen to you with out judgement and offer you support. Someone to guide you, not tell you what to do, but help you see the best path for yourself.

It is early in our journey, but I should listen to my own advice. LOL

Be strong, you are obviously a survivor, you have made it this far.
Be kind to yourself.