Help

[Equinney]

Sorry guys, I don’t really have anyone else to discuss this with. (I can count my friends on a closed fist) Looking for advise. Ever since my symptoms really started to show and worsen, my wife has grown apart from me. She initially said she had to start viewing herself as a caregiver instead of a partner. My symptoms are not that bad. (I do all the cooking and cleaning also, and keep a small business going). I used a cane, and finally progressed to a walker. Yes, I do have ED issues, but have about a dozen doses of Tri-Mix in the freezer for that. I would say it’s been at least 9 months since any sexual activity. And probably 2 years since I’ve had a lip to lip kiss or even a romantic hug. We got a king size adjustable bed about 1-1/2 years ago that has been split apart and on opposite sides of the room for about 8 months. She said it was so she could sleep with my legs jerking. Have any of you dealt with your wife growing apart from you like this, and how/can it be reversed?

[nan17]

Hi, I'm a woman who had a legs jerking partner who would help with the cooking and cleaning, as long as everything was done his way. Can you talk with your wife about your feelings and ask her about her feelings and what she wants for the future? Maybe she's scared of what the future will bring. I would suggest getting the help of a counselor if feelings don't come easily on your own. Good luck.

[COwithAMN Administrator AMN EASIER Volunteer]

So sorry hear of you being in this situation. It's bad enough having AMN without also having a partner or spouse who seems to be using it as a distancing mechanism.

But well done for raising the issue and asking for support. Partners or spouses do often ultimately have to take on something of a carer role, but that does not mean that the normal intimacies of life with your partner should cease. Often it needs a bit of adjustment but a good relationship should be able to ride over such problems.

All situations of living together involve a lot of give and take, but if you love each other, it is ultimately worth it. Presumably, that's where you started.

We and our partners need to remind ourselves that humour can be an important way to address difficult situations which, while not life-threatening, do impact our normal routines.

I think you have to consider having some proper counselling sessions with your partner as there could be other issues getting in the way.

I do hope you can find a way through this.

Chris

[deengo]

Thats a tough situation, sorry to hear your going through this. I got diagnosed when I was with my first wife. The worst thing she said was "when we get old will I have to push in you in a wheelchair like grandma does grandpa?" It made me think about our relationship hard

[mariagno]

My wife often felt that way early on. A lot of it was not knowing the outcome which involves death or how much she was going to take on.

It took a few years to adjust especially with two young kids but things got a lot better. She began to appreciate how I could overcome the hurdles myself and my drive to remain self sufficient.

I would suggest counseling with you neurologist and including her in your appointments so she can ask questions, too. Keep her involved so she doesn’t feel isolated. Keep doing things together. Dates, outings, walks, trips, and all the things you did before.

I withdrew too because I was very worried. Once it became a normal routine of our lives, things settled down.

Best of luck