Parent with Early Onset Alzheimer's

tcc413

Hi, I'm looking for a support group specifically for adult children of parents with early onset alzheimers. My mother is in her mid-60s and was diagnosed a couple years ago. As she is beginning to decline more and more I want to connect with others in a similar set of circumstances. Most people I speak with are dealing with elderly people. I have two young children and am also supporting my father as he supports my mother. I'm also definitely grieving not having my mom around to help with my young kids the way I'd hoped for. Anyone else in somewhat similar circumstances? Any recommendations of a support group? I'm in Massachussets but would be happy for something online. Thanks in advance!

M1

welcome to the forum. Hopefully you can find what you’re looking for, but FWIW this forum is by far the best support I’ve found, even though it’s not specific. Hope it can provide at least part of the help you need.

kblau

hi there! In a similar situation. My mom is 72 with ALZ. My father passed away at 65 from 9/11 related cancer. I’m married with a 4 year old :-) so yeah I wasn’t expecting this at this point in my life. You’re not alone here! Also grieving the loss of my mom while becoming a mom myself, dealing with the frustration of no one to ‘help’ me out and sad for my daughter.

Editing to add: I also have found this site to be the best support out there. Everyone has been extremely helpful.

psg712

Hi, my mom is elderly, but because I became a parent at a much older than average age, I also have a minor child. I also had my MIL move in with me for care (not dementia) when my child was an infant. So I get the sandwich generation situation all too well. I also empathize with the sadness for my child not having a grandparent who can do special things with him or share her parenting experience with me. I've had to get my support and advice elsewhere. I agree that this forum has been the best guidance for dementia caregiving. But there may be support groups in your area - call the hotline and see if they can help direct you.

kmama39

Hi there! I am in a very similar situation and would love to connect. I'm a 39 year old mom of two, and my mother has early onset dementia. She has had it for years but is quickly declining. My dad told me today that she doesn't really know who I am anymore. She still lives at home with my dad as her caretaker, but he can't do it much longer. I'm happy to send you my contact info if you ever want to chat 🩷

sandwichone123

I'm not in your situation, but do want to make sure to mention this. With dementia people often have personality changes. They don't mean to, but sometimes they can target a child and say very harmful things, especially if they have moved into the family's home. Please don't let the fact that she is your mother blind you to her behavior, and make sure to protect your children if that does become an issue. Your own children need to remain your priority even as you try to help your parents in this difficult situation.

Ang799

Hi I'm also in Mass and struggling my mother is 68 and diagnosed last year would love to chat

silentzia

Hi, I am in NJ, my mom-72yo who lives in a different country was recently diagnosed with vascular dementia - moderate stage-. My dad is the main caregiver right now, but I struggle with accepting the diagnosis, while parenting a 12 yo.I guess I am still processing the news. I noticed some memory deficits but couldnt imagine although my mom's brother passed in February from parkinson with dementia. I would love to connect with others who have a parent with this terrible illness.

amax90

> @tcc413 said:
> Hi, I'm looking for a support group specifically for adult children of parents with early onset alzheimers. My mother is in her mid-60s and was diagnosed a couple years ago. As she is beginning to decline more and more I want to connect with others in a similar set of circumstances. Most people I speak with are dealing with elderly people. I have two young children and am also supporting my father as he supports my mother. I'm also definitely grieving not having my mom around to help with my young kids the way I'd hoped for. Anyone else in somewhat similar circumstances? Any recommendations of a support group? I'm in Massachussets but would be happy for something online. Thanks in advance!

Hey!
I just recently joined this chatroom and your post resonated with me. Me and my partner have a big family, we have a blended family with kids between 15 yrs and 7 months old. When my partner and I had our 1st baby in 2020, his mom was diagnosed with early onset Alzheimer's and she was in her early 70s. She was pretty with it, could drive, coordinate daily obligations, appointments and really function well overall. She had a medical emergency and in the last two years, she has progressed into the end stages of Alzheimer's, specifically late 6th stage. She has lived with us the last two years and has relied on us to prepare 3 meals a day, do her laundry, and structure her Dr appointments, essentially coordinate her life. The last 6/7 months have been life altering- she has progressed to needing me to bathe her, dress her, and provide entertainment for her as her ability to figure out what's going on or what to do has dissipated entirely. She lives in a state of confusion 24/7. She doesn't remember who we are, and she has no memory of her son, who he is to her in any capacity. I am struggling to live my life without being consumed by caring for her, and my partner is consumed by the devastation this disease brings. If you'd like to chat, I understand what you're going through and likely what's to come.

amax90

Also I'm sorry if this is a lot to the in, we were in the same boat as you when we first found out and do much has changed very fast. I quit my job to caregive so I do that full-time now, let me know if you need anything.

allit

https://alzconnected.org/discussion/70300/parent-with-early-onset-alzheimers

Duke has several support groups. My wife and I are in the Early Onset group. You don’t have to be a patient at Duke to join. They are online. And there are members in the group who are children of parents with early onset. https://dukefamilysupport.org/support-groups/