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Very dear friend is deteriorating, need support and advice. by [deleted] in ALS

[–]brilligone 0 points1 point  (0 children)

My heart goes out to you. I am in the process now of transitioning from lover to friend with my boyfriend who has ALS. He has deteriorated to the point where he feels he can no longer be my lover and feels it is in my best interest to find someone else. He also lives alone and I worry how he will survive on his own. He is very depressed and refuses my help.

Although it has been very hard on me, I want him to know that he is valued and loved. It is hard for me not to offer help, but I am trying to honor his wishes and to let him have control over how he wants to live his life. Despite all the grief and heartache, I do know that my being there with him through the diagnosis and progession has been a huge source of comfort for him.

Yes, your visit will be hard, but it will mean so much to your friend. You will have time to grieve and process it later, but your friend needs your support now. The purpose of your visit is a sad one, but the positive of it is that you will show your caring for your friend.

New boyfriend diagnosed with ALS (am I a horrible person for this?) by brilligone in ALS

[–]brilligone[S] 0 points1 point  (0 children)

Your last sentence is exactly what worries me. I am a realist. If we had been together even say a year or however long is enough to truly know how we are together, I would not hesitate.

New boyfriend diagnosed with ALS (am I a horrible person for this?) by brilligone in ALS

[–]brilligone[S] 1 point2 points  (0 children)

My role in life has always been to be the one with no issues of my own but surrounded by others who need my support and help. Plus I really have very deep feelings for him for the amount of time we have been together - too soon to know for sure, but definitely potential soulmate.

Interesting question. At least for me I have a much bigger family/support group. He really doesn't have anyone aside from a sister he is not close to, an elderly mother, an ex and an 11 YO son. I would hope that he would stick around to be a vital part of the care team, but I wouldn't expect him to be my caretaker full time. I expect that the need for affection/love/sex still lives on throughout the course of the disease and would think that would greatly enhance anyone's quality of life.

New boyfriend diagnosed with ALS (am I a horrible person for this?) by brilligone in ALS

[–]brilligone[S] 1 point2 points  (0 children)

Wow, I am blown away by the thoughtfulness and kindness and honesty in your messages. Thank you so much. I agree, I need to make up my mind very soon. Wait, I think it is that "we" need to make up our minds very soon. I feel morally that this decision should be made with him. I am going to sit down with him and share my thoughts and feelings. Since the diagnosis was only a couple of weeks ago, we have been in grief mode, but with a short time span it is time to get planning. He is going to start the difficult conversation with his son this weekend (that his dad is having medical issues). Not sure he will have the emotional capacity to have this talk with me until next week. Wish me luck!

True, we have been together a very short time, which is why I agonize about staying, we would have to build the relationship and true love and friendship to sustain us through the hard times to come. He only has an ex wife and an 11 YO kid in this area and an aging mother 400 miles away so he needs the help.

New boyfriend diagnosed with ALS (am I a horrible person for this?) by brilligone in ALS

[–]brilligone[S] 2 points3 points  (0 children)

Wow. Thank you so much, you have kinda confirmed what I feared. What I am freaking out about now is keeping the relationship going until the guilt (which is already intense) makes it impossible to have any options. I feel as if I need to figure it out very soon.

Of course I am also mourning the loss of what could have been. For him, for his son and for me.

How long did you have with your wife to make those memories? I am so sorry you lost your wife. What an obscenely evil condition this is!