Upstate
New member
- Joined
- Aug 9, 2019
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 01/2018
- Country
- US
- State
- NY
- City
- Albany
This is my first post . I have hesitated because of how everyone will view my situation...My husband and I have been married for 5 years. It is a second marriage for both of us. We dated several years before but we were still in the throes of teenage children and decided the time was not right and we went our separate ways. Fast forward about 6 years when he reached out and shortly thereafter we were married. There are other details I will leave unsaid but a couple of years into the marriage I started to think I may have jumped too quickly into the marriage thing.
I was trying to work through my feelings and was ready to start to have the "separation" conversation when he started to show symptoms of ALS. (His Dad died of ALS at 48). We went through several diagnosis and just as many different treatments when the final ALS diagnosis came two years ago.
I have not had any romantic feelings toward him in a while (even before the diagnosis) . I love him , he is a terrific guy, but the romantic, intimate feelings have left me completely. The day to day caregiving( toileting, feeding, showers eat) have not helped change my state of mind. I have tried to explain this too him several times pre & post diagnosis but it gets us nowhere.
So here I am ... I cannot leave him - there is no one to step in and take up the slack, besides I took a vow! I ended up retiring so could take care of him full time. But this is not the retirement I planned. My life is not my own , I am basically at his back and call. At first I WAS overwhelmed with resentment and anger but I have been able to temper that over time.
And that leads to another issue I live with daily ... GUILT.... how can I be so selfish. this is not the person I thought I was. Do not get me wrong, I take care of everything and I am a good caregiver. But the disease and my pre-existing feelings are just a giant rock in between us. He is dying and I am more concerned about myself than him.!!! What a horrible person I am and I I am not just saying this. I want to give him everything he needs and he desperately wants a love connection (who wouldn't) but it is just not there for me.
I am trying to dig deep and be there in every way I can.
I was trying to work through my feelings and was ready to start to have the "separation" conversation when he started to show symptoms of ALS. (His Dad died of ALS at 48). We went through several diagnosis and just as many different treatments when the final ALS diagnosis came two years ago.
I have not had any romantic feelings toward him in a while (even before the diagnosis) . I love him , he is a terrific guy, but the romantic, intimate feelings have left me completely. The day to day caregiving( toileting, feeding, showers eat) have not helped change my state of mind. I have tried to explain this too him several times pre & post diagnosis but it gets us nowhere.
So here I am ... I cannot leave him - there is no one to step in and take up the slack, besides I took a vow! I ended up retiring so could take care of him full time. But this is not the retirement I planned. My life is not my own , I am basically at his back and call. At first I WAS overwhelmed with resentment and anger but I have been able to temper that over time.
And that leads to another issue I live with daily ... GUILT.... how can I be so selfish. this is not the person I thought I was. Do not get me wrong, I take care of everything and I am a good caregiver. But the disease and my pre-existing feelings are just a giant rock in between us. He is dying and I am more concerned about myself than him.!!! What a horrible person I am and I I am not just saying this. I want to give him everything he needs and he desperately wants a love connection (who wouldn't) but it is just not there for me.
I am trying to dig deep and be there in every way I can.