Partner with early signs of dementia & APOE 4 breaking up with me

@gilkesl I can only hope. He is really a nice decent guy who I've known for many years. It's a sad situation......thank you for the kind thoughts

He texted some news from the doctor, sharing it was not the best news. He also asked me not to respond.

I am grieving this breakup, and I am grieving this man. And I respect his need to go through this health exploration alone.

He was so grateful to finally have a doctor who was responsive. He was relieved to have a plan to get some data about his health. He’s experienced a handful of terrifying memory lapses since he got the APOE4 two copies. He hoped it was just stress related.

I don’t fully know what the results mean (see below). He does not want to go through what his mother and brother did. He wants to retain his sense of purpose and meaning and dignity. I’m heartbroken for him and for me.

I’m sharing the news of our breakup with my family and close friends, though I’m not sharing the reason with them in order to protect his privacy. They are so confused. They know we love each other so much.

This from his doctor…
…your results are attached and show the following
- Your pTau-217/AB42 ratio was positive/ slightly
elevated. Your Beta Amyloid 42/40 Ratio was low. both
these results are consistent with the start of Alzheimer
markers.

I’m grateful to have a private place to share this. Thank you.

Even though my boyfriend ended our relationship to sort out this medical exploration on his own, he is still reaching out occasionally to share updates and connect. We talk about how much we love each each other.

He has shared that he both doesn’t feel like he knows what he’s doing and at the same time is finding some peace in between taking action steps. I’m glad for the periodic peace because he is also feeling terrified that he will follow the path of his mother and brothers.

He has a neurologist appointment in New York City to better capture his status and monitor his health.

He has also continued to make lifestyle changes as recommended in the Dale Bredeson protocol.

It has been 30 days since he said goodbye to me.

I am grieving, and I believe that all of you in this group know about grief.

I read about handling grief by taking all of the love that we pour into the other person and start pouring it into ourselves. That’s a good lesson for me.

Hi all, I am at day 55 since he ended the relationship. He shared that his labs are getting worse. He will see the NYC neurologist next week, finally, and he thinks he is eligible for clinical trials because he is not doing well. He does not sound hopeful. In fact, he sounds terrified. Understandably.

He said the breakup was intended to protect the memories of the 8.5 years we had together from the next phase of his life. He said the 8.5 years together were the best years of his life. And they were of mine, as well.

He doesn’t want to be tottering around behind me with me watching and worrying like he saw his brother go through before he died. And he thinks he will go fast like his brother did.

I had shared that I knew of a story of someone with similar genetic coding as him, who was forgetting people and places at age 50. She has since reversed her Alzheimer’s diagnosis and started a foundation to educate the public. My intent in sharing the story was to give him some hope because he appears to be despairing, and he is going through this alone.

Before I told the story, I asked his permission. Since he has been clear that he does not want me in a caretaker role, I didn’t want to be sharing information if it was not wanted.

I respect his choice to preserve his dignity. It is hard not being with my love. This is the hardest thing I’ve ever done in my life.

@ a23studio I am so sorry for what both you and your boyfriend are going through. It has to be incredibly painful for you not to be with him when you love him and want to be supportive. I think he must love you so much to want to spare you the dementia journey with him. This must be all so new and frightening for him and for you. For now I think all you can do is what you are doing. I think that his sharing of updates is reassuring in that he is keeping you in the loop so to speak and you don't have to imagine what is happening with him. As he is able to process this devastating news he may be able to give you more of himself. You are both in my prayers. May God give you what you need to cope with this. Keep posting here. We all understand how awful this is.

MCI is now controlled with infusions to rid of the plaque on the brain so MCI doesn’t get worse. He needs to speak with a neurologist who knows about the newest infusions and shots for MCI asap.

@a23studio Sometimes I'm reluctant to respond, as I'm not sure my response will be well taken. I read these threads a few times, and I'm confused as to why after 8.5 years someone would want to terminate a loving relationship with their partner. And yet, still want to keep you fully apprised of what's happening to him. It would almost be kinder and far more supportive if you were still there by his side, helping him go through it. He doesn't want you to be a caregiver, yet, you're immersed in him anyway, and what's happening to him. Which makes it so hard to turn the other cheek to it all especially with his medical updates. You can't make someone want to be with you, but I think, when you love someone, and they love you back unconditionally, through thick or thin, you figure out together what you can do as a couple. The above post on treating it early, is key, and you both sound young, where there is time, hope and faith. And to where you both weather through it together as a couple and you are no longer a "sending you updates" sideline. Hope this isn't upsetting. I just think it's sad when one can't see that two heads together, are far more supportive and beneficial than trying to go it alone.
Best, Karla

Doctor diagnosed as delirium. And 3 weeks later he is back to his old self. Very strange. He is in hospice now, don't know how much time he has left.

@kjc48
Yes Karla, Go Away-Come Here - Go Away is painful and maddening, but I can relate to how the guy can be very conflicted and ambivalent.
"I want to spare you the experience. But I am scared, and there is no one I want with me except you. But then I see the sadness in your eyes and I want to spare us that, But ....."
I wish things could be more resolvable, but sometimes (too often) Life is not like that. I can feel their pain. It's the definition of tragedy.

@shmerdloff Two sides of the story and two viewpoints are always good and well grounded.
Best Karla