Boyfriend just diagnosed

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Reneeo

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My heart is breaking for the man that I love and his recent (late Feb 2022) diagnosis with ALS. We are both in our mid-40's and have two kids each from previous marriages. We'd been together almost a year when I ended things with him about a month ago because things had dramatically changed between us.

It turns out that the reason he was detaching and things changed so much is that he'd been so terrified of this diagnosis since he'd scheduled the appointment in June. I get it, but now that he's shared it with me (and so far only me) he wants to be emotionally honest and have better communication. And in the 10 days we've been talking again, he's doing an amazing job at it, but I am so confused. It's so easy to fall back into old patterns of affection, texting and calling.

And although it feels amazing, like the relationship we had 6 months ago, I don't want to give him false hope of a future together because I don't know what to do right now. Without the diagnosis, I'd most likely give us another shot - after all, we have something so special and I'm in love with him. I had been alone as a single-single-mom for 6 years before him and he was such a welcome addition to our little family (with me and my boy, 13, and girl, 9.). He's the first person I've let into our lives since my kids' father and my son adores him and is already so attached.

But I've got to be honest about all the thoughts going around in my head. After 6 years of being a full-time mom, working and going back to school during covid, I felt like my time had finally come. It was my turn to coast on what I'd built in my life and enjoy it. After so many years of hard work, hustle being alone, and alot of tears, I am looking forward to the freedom that my mid-40's have on the horizon. But now there's this and I feel like I've lost my barrings.

I feel selfish for the idea of choosing me and not getting back together with him even though I still love him so much. I'm not even sure that's the right decision. And then I try to imagine not even having him in my life and that feels even worse. We've developed such a bond that I feel I can't just walk away from him - nor do I want to. But I don't know that I can commit to him either and what taking care of him would entail. What would it mean for my kids? I am so confused. I feel so much love and compassion for him right now and he has no one else to talk to. I'm the only person he's told about his illness so far and I'd feel so guilty not being there for him. But it's taking its toll on me emotionally when I'm not sure what I can offer without giving him false hope. How can I navigate these waters and still respect him and the bond we share? No matter which choice I consider, it hurts so much.
 
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lgelb

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Hi Renee, so sorry to hear about your boyfriend. There are a number of options between "walk away" and "primary caregiver." After you've had time to process, which it sounds like you haven't yet, you will want to consider and discuss those options (like what his resources are, what his home is like, what his current needs are, the course of the disease), knowing that may change going forward. For example, you might be a supportive friend. Or you might decide on one or the other extremes. Don't decide on anything today.

Above all, I would be honest about your concerns and encourage the same from him. His knowing what support you are able to give is obviously important to his own planning, and this is a diagnosis that benefits from up-front thought. You don't want him making plans or building expectations that can't work out. You don't want him thinking you will combine households at some point if you will not. He might consider moving somewhere that support is more accessible to him, if yours will not be enough. You will want to manage your kids' expectations as well, since you say they are close. I would not tell them about the diagnosis until you both have signed on to a plan.

The fact that he hasn't told anyone but you suggests that he's still doing his own processing, which is all the more reason to be transparent from the get-go. You can help him process and enter the next step, but it sounds like you have to separate your relationship from your caregiving commitment to a certain extent. Even in a marriage, one doesn't really depend on the other. Spouses can and do walk away. Committing to care for someone with ALS the whole way through, as you have indicated, is its own ball game. But you can also be in a "committed to the end" relationship that does not entail primary caregiving, if you structure it that way and both of you are content in it.

As a friend+, if he is still terrified, I would encourage him to seek counseling if he needs it to begin the communication strategy and life planning that this entails. And the same goes fo you, if you need decision support. It's better to take your time and be sure that you're at least going in the right direction. Because this will be unavoidable trauma to the kids, their teachers and principal should know as well, and they may need support also.

I'm glad you acknowledge your uncertainty, because false certainty is much worse than none. Whatever level of support you undertake, we will be here to support you and, if he chooses, him.

Best,
Laurie
 

Bestfriends14

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I agree with Laurie. You can still be a supportive friend but not the primary, or even secondary, caregiver. The costs to ALS are outrageous in several aspects. First, the financial costs to the disease are in the 6 figures annually, second, it's the hardest thing one will go through on an emotional level, last but not least, the physical toll caregiving takes on your body is hard. The sleepless nights, the aches and pains, and the damage to your back, arms, etc., is long-lasting. These are very real things you must consider before choosing a direction to go. I've made it sound very dire, but seeing as you also have two children to consider, they would be a part of the factor, as well. I'm so sorry about your friend. Hugs to you.
 

Dwest

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Hi ReneeoI also agree with the previous gals. Being primary caregiver for my husband, 24/7 for just over two years absorbs your life entirely. I can’t leave the property longer than an hour. I do not want to sound selfish as I am not. I am 100% committed. I have been off work for the last two years and yes all this costs so much money. Our daughters are on their own and we have a granddaughter. I sometimes care for her and taking care of both at the same time is nearly impossible. You still have two young children that need your attention. I couldn’t manage this if my daughters were their age.
We have been married for 29 years this year. Caring for him on this level is trying. Thank God I love him because sometimes I wring his neck!!!! We get through with humour.
Be his friend but not his caregiver. Depending how his ALS is progressing, he could have anywhere from 3-5 to 10 years. There is nothing easy for anyone where ALS is concerned. Just be strong for him.
 

Mary2

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My PALS and I have been married 30 years this year. There was never any question that I would take on the caretaker role. You are certainly in a more difficult place with the decisions you need to make. For me, I would need to seek counseling if I were in your shoes. This would stop me from going around and around in my head and ruminating about the situation. This is a great Forum and no matter what you decide there is support here for you. I don't believe there is a perfect answer to your situation. I believe you are going to have to take some time and feel this out and move on from there. My respect and empathy to you as you do this.
 
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