28 and my mom just got diagnosed

juliehass

Hi,
My name is Julie. I'm 28 and my mom just got diagnosed with Alzheimer's. It wasn't really a surprise. My Nana (her mom) had it and it was pretty severe by the end.
My mom has aged pretty rapidly in the last 5 years. When Covid was going on she got lyme disease and some other blood borne disease (I don't remember what it was called, started with an "A") and it progressed quite a bit. At the time it was hard to get care because of Covid. I think she had it for over a month before they fully diagnosed her and she was able to get treatment. She got really sick and almost died. Thankfully she didn't and was able to get treated, but she lost an insane amount of weight and hasn't been able to gain it back (though I don't think she's too upset about the weight loss lol but I am). It was like I watched my mom age 10 years in the course of 1. She's always been a bit forgetful but it just seemed to get worse after the lyme disease.
In 2023 she also got diagnosed with breast cancer. She underwent radiation, chemo and surgery. She takes a whole roster of drugs now (every hour on the hour) that's related to the cancer. She's currently cancer free but I think all the treatment (especially chemo) also progressed the alzheimer's quite a bit. It was very rapid and it seemed like it was no longer her memory that was affected. I don't know how to explain what else was affected, but it just seemed like SHE had changed.
I'm having a hard time with her Alzheimer's and all the changes. I can't be around her or my family anymore without bursting into tears and hyperventilating, which seems dramatic but it's extremely involuntary. I'm not even out of my 20s and I have to deal with this. She and my father had me late in life. I watched them deal with this kind of stuff with their parents about 8 years ago. Now I have to do it and they still see me like a little girl so they're very resistant to help.
So the last month or so I haven't seen much of my family while I try to get myself together so I can see them without all the involuntary stuff happening. And I know while I'm taking this time she's still aging. I wanna get this part over and done with so I can go spend time with her again without making her feel guilty about how I feel. I mean it's happening to her, she can't feel great about it. A lot of the avoidance is to protect her I suppose.
The irony is I wish I could talk to her about it. She's probably one of the only people that could understand what I'm going through. Or at least she used to. I miss my mom and she's still here. It's a paradox.
My therapist suggested I find a support group or a forum where I can talk. I've been looking for a support group, they just haven't worked out for me yet. So I'm here, posting about my mom, my favorite person in the world, losing herself. I'm hoping opening up here will help me process what's happening, because right now I've had to shut down any processing just to function like a normal person and that seems unproductive.

SDianeL

welcome. So sorry about your Mom. We know how you feel. It’s terrifying and heartbreaking. This online community helped me so much after my husband’s diagnosis. The sadness you feel is normal. We grieve because of what we’ve lost. Come here often for info, support or to vent. Your Mom needs you now more than ever. She’s lucky to have you. Learn all you can about the disease and caregiving. It will help you help her. Read the book “The 36 Hour Day” which was recommended by a nurse. Search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. Sending hugs. 💜

Anonymousjpl123

Welcome to the forum and wow I am so sorry you are having to deal with at such a young age! Im in my fifties and it’s hard. I can’t imagine having to deal with this at a time when you’re really just starting to build your own adult life.

This is a very supportive community. You mentioned your dad - is he able to be her primary caretaker? If you get along well enough with him and are comfortable, it may help to talk to him about it. If he’s like my dad he’ll probably share next to nothing, but it is good to open the dialogue.

You are still in shock I’m sure as that sounds like a fast progression - which often happens with early onset dementia.

it’s ok to stay away for a while. As @SDianeL said she’s lucky to have you. Read the posts here. It will help give you some idea of what to expect.