Boyfriend recently diagnosed

[brilligone]

Hi, my boyfriend of only two months was recently diagnosed. We have been getting very close and I feel that he is a man I could spend the rest of my life with. He has suggested that perhaps we should stop seeing each other as it wouldn't be fair for me to be tied down to someone with ALS. Can anyone share their experience with a boyfriend/girlfriend with ALS?

 

[hunterross258]

Sorry to hear about this. How old is he?

 

[affected]

Why are the DIHALSers running around threads outside of that section?

 

[lgelb]

Brilli,
My husband and I committed to each other months after we started dating, and I knew he had an often-fatal genetic disorder (not ALS; he got that later, though his surgeries for the other disorder went into the double digits during our marriage). So I have a hint of what it's like to have your relationship in many ways defined by illness from the start. Zoohouse (Paulette) does as well, and Music67's partner, and others I'm forgetting -- please chime in, and apologies.

Only you know if this relationship is worth the candle. But I, recognizing how hard your boyfriend's life with ALS will be, would be sure before you commit to it. Read up on ALS, spend time with him, and the right answer for you will be clearer. But we can't tell you "what it's like." That's most defined by the people involved and their feelings for each other, not the disease(s) that they have.

Whatever you decide, you can still be special to each other for the duration. It is not, "commit or walk away" unless one of you wants it to be.

 

[brilligone]

Thank you for your insight. I am at a loss at to how to comfort him, I tell him that I care for him and that I am there to support him. I read up on ALS and the road ahead for him and those around him scares me. I worry about who will take care of him - he is single with only an ex and a young son living in the area. He has told me if I wanted to leave, he is ok with that, but that doesn't feel right to me, we are at the stage where we have begun to love each other although we have not been together very long. I take comfort in your words about it not being commit or walk away. I am struggling with how to proceed, guess there is no pat answer to that, but it would be helpful to hear from others who may have had a similar dilemma. Thank you for your comments.

 

[JimInVA]

Brilligone...

I can't offer you any advice, but I can tell you... from my perspective as a caregiver... what this ride has been like. ALS is truly a sucky disease. It takes away a pieces of a person's ability to do things for themselves on a daily basis. We CALS (Caregivers of those with ALS), pick up as many of those lost pieces as we can... but we're never able to pick them all up, regardless of how much we'd like to and how hard we try. For my wife of 30 years (Darcey)... and for myself... the greatest challenge has been to not get sucked up by the dreadful part of this disease. With each thing lost or taken away, we've tried to replace it with something else. We have found new ways to find things worth smiling about and laughing at, for and with. We have learned just how insignificant so many of the little things in daily life really are. We have learned to live and love more fully and with more respect and appreciation for each other during this time than all of our previous years combined. I know we are both better people for this... but it has not come without its cost and toll. For as much as we've lived and loved, we've also shared many tears and fears. Emotionally, I'm strong one moment and am then a wreck at some unexpected next moment alone. I'm physically stronger from all the lifting I have to do... and yet feel years older and constantly am much, much more tired. The tired affects me mentally, as I have so much more to remember to do... and less time in which to do that so much more... and am much too hard on myself when I forget something. Frustration is a regular companion. I want to scream... I want to run... I want to be gone - until I walk around the corner and see Darcey look up and smile. And at that moment, I want nothing more than to do whatever it takes to keep that smile on her face a moment or two longer.

We understand what ALS promises to those with this disease. As caregivers, however, we will live beyond ALS... but we WILL be forever changed. I wish you every bit of courage and wisdom for the life choices in front of you. Pick the path that you know you can walk... yet know that all paths in life come with their own inherent and unexpected challenges... and rewards...

Jim

 

[sisterpain]

Jim, you are such an amazing man! sunch an inspiration to us all!

 

[brilligone]

Jim your insight is wonderful. If I had more than just a few months of history with my boyfriend, I wouldn't even be wondering how to deal with the situation. For now I think I will continue on with our new relationship and see what the future brings. It is not in me to walk away from difficult situations in life, but I also have an adult son with severe depression, and I wonder how bringing a terminally ill person into our lives will affect him. So now I have a man in my life who wants to live and another who doesn't. Life is full of irony.

 

[brilligone]

I have a question for those who have gone before me, how can I offer him comfort and support? He does not believe in God. I have told him that I care for him and that I am here for him. I have given him the same affection and love as before the diagnosis. We have sat together and cried it out too. I just feel so darned helpless.

 

[Barbie]

do not underestimate the difficulty of being a cals. it is not for the faint hearted...I know of cals who were exes and came back to care for the Pals, just friends, boyfriends, girlfriends, spouses, kids, parents. what I am getting at is that it is not the relationship status that you have, it is that your eyes are open to what it means to be a caregiver for someone with als. it could be a short journey with him, or it could be years and years. both are very hard, so you should really do some soul searching before you make a decision.

Barbie

 

[Music67]

I got married a month ago to a wonderful lady (I call her a gift") after an engagement of 14 months. In the middle of that engagement I was diagnosed for ALS although I had had symptoms since early '12. We are doing okay considering. But it takes commitment !

 

[lgelb]

Music,
Belated congratulations on your wedding!

 

[Nikki J]

I am sorry about your bf. You do not indicate your age. You need to think even if you do not make a romantic commitment if you commit to be a primary caregiver that this could continue for a long time which might keep you from a relationship with children if that is your wish. It is true that PALS have had children after diagnosis but it must be extraordinarily difficult for the CALS partner. Really try to think about what you want because unfortunately there is going to be an after that is going to be a long time.

 

[brilligone]

We are in our mid fifties. My kids are grown and he has an eleven year old.

 

[brilligone]

I am struggling with how to best help and support him. I want to be with him as much as possible to help him cope emotionally with what the future holds for him. We have had a couple of hug and cry it out sessions.

But on the other hand I do not want to smother him or get in the way of his dealing with his existing family and friends. I wonder if continuing to behave as his new girlfriend (going out for dinner, hiking, going to new places together, etc.) will help by keeping a sense of normalcy in his life. Would it be a welcome break from having to dwell on the future? And I have read where people diagnosed with ALS wanted to go out and enjoy life while they were still physically able. Or will it just be another stressful thing for him to deal with?

I've never dealt with anyone close to me who has had to come to grips with such a difficult prognosis. In 3 months we have gotten quite close in a short period of time and I want to support and love him the best I can. I suppose the best answer is that we need to talk about what he needs and hope that he can be honest about what is too much and what is too little in the way of my support for him. And eventually I need to start considering my own emotions, how to deal with the heartbreak and how to keep strong so that I can continue to support him.

Would anyone recommend that we start attending an ALS support group at this time?

Thank you all for your kind responses.

Joy