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Children of Parents Diagnosed with Early Onset
MindfulViv
Posted: Tuesday, March 12, 2019 11:10 AM
Joined: 3/12/2019
Posts: 7


My brother has EOD, one pre-teen girl, a teenage girl and a teenage boy. Those children have witnessed their grandma (from their mother side) suffering from EOD and now they see their father with it.

Now my family is all concerned with my brother, who is in his mid 50s and there's no space for other terror-inducing thoughts... but I'm scared for those kids, too. 


Smilesyourway
Posted: Wednesday, March 13, 2019 1:42 AM
Joined: 1/11/2019
Posts: 70


Iwantmymomback~

I am the same age as your mom and have a daughter your age.  My input, would be to tell you what is happening to her from a mother prospective.  When I was diagnosed, I became depressed, scared, had fearful thoughts of the future while still trying to be MOM to my adult children.  It was the Elephant in the room.  I think we were all in denial.  Well to be honest there is a grieving process and various steps that happens with anyone diagnosed with a terminal illness.  While she processes this life diagnosis.......keep an open dialog.  Ask her how she is doing out of the blue.  Have some family meetings and show your love and support, because as MOM she is giving her support to you.  That's what we do.  Know that many many moms and dads with young on set live  long and fulfilling lives.  I've met many folks that have maintanined for years in the early and mid stages.  Prayers to you and yours.  

Smiles


tinydreamer13
Posted: Tuesday, May 21, 2019 11:03 PM
Joined: 11/27/2018
Posts: 5


Hi. I've sent an invite to many of you who have posted in this forum. My dad is doing all right--he still goes to work and can still drive, but when he drives, someone else must be in the car with him to give him directions, and my family has to make schedules for him so that he remembers what he's doing every day.

It's been a few months since I've posted here, and things haven't gotten easier, but I'm still living with it (and so is my whole family, especially my father). To ANYONE who has posted in this thread, I'd be incredibly happy to talk to you. One of the hardest things about this diagnosis is that I don't know anyone else who can relate to me (besides my sister), and hopefully this forum can help that.


clureharris
Posted: Friday, May 31, 2019 12:33 AM
Joined: 5/31/2019
Posts: 1


Hello,
I am so glad I found this discussion board, I have been struggling for awhile and thought I was the only person feeling everything you all have said. I am 22, just graduated college and my mom was diagnosed with EO in January 2019, she is 54. I feel so alone and isolated dealing with this and this last semester of college was the hardest time to pretend I am ok around my friends and pretend this news didn't just destroy my family. As a 22 year old I don't know anyone that is going through something similar, it's hard watching everyone else go off to different countries and move states to follow their dreams post college, knowing I cannot do the same right now. And I don't want to after hearing my mom's news, I just want to be there for her. I am cherishing every moment with my mom and just being here and being in the moment with her and my family. I'm scared for the future and frustrated this disease is hurting so many people...we need a cure! 

BorovatzMa
Posted: Sunday, June 9, 2019 4:16 PM
Joined: 2/24/2015
Posts: 35


Hi! I'm 22, my mother is 62. She was diagnosed when I was 13/14. I've been writing on a blog to cope, so maybe some of you guys would relate to it (diaryofaforgottendaughter.com). I'm also just trying to get more people to talk to since I now have more time to talk about things.

I'm in Georgia. And it's pretty hard to find others who have the same situation. I had one classmate in college who's father recently passed from complications from Alz, but other than that it feels pretty lonesome. I think the best way is to connect with your local chapter of the association! They really helped me understand and cope when I was in middle school. I would visit ever few months to check in and get questions answered. A lot of the other people are older than us, so it makes it hard to relate. But they are very supportive and can also help you plan for the future.

Just know you aren't alone in these hard times. Maybe we should make a smaller chat room for us younger children? It may help us just to vent.

 


tinydreamer13
Posted: Friday, June 14, 2019 11:24 AM
Joined: 11/27/2018
Posts: 5


BorovatzMa wrote:

Hi! I'm 22, my mother is 62. She was diagnosed when I was 13/14. I've been writing on a blog to cope, so maybe some of you guys would relate to it (diaryofaforgottendaughter.com). I'm also just trying to get more people to talk to since I now have more time to talk about things.

I'm in Georgia. And it's pretty hard to find others who have the same situation. I had one classmate in college who's father recently passed from complications from Alz, but other than that it feels pretty lonesome. I think the best way is to connect with your local chapter of the association! They really helped me understand and cope when I was in middle school. I would visit ever few months to check in and get questions answered. A lot of the other people are older than us, so it makes it hard to relate. But they are very supportive and can also help you plan for the future.

Just know you aren't alone in these hard times. Maybe we should make a smaller chat room for us younger children? It may help us just to vent.

 

I think starting a smaller chat room would be a great idea!


BorovatzMa
Posted: Sunday, June 16, 2019 2:12 PM
Joined: 2/24/2015
Posts: 35


Thanks! I'm kinda just lost in my own world right now. Also with just the normal "adulting" things, so it would help getting advice from people who are older than me and how they balance personal life and their careers.
River48
Posted: Sunday, June 23, 2019 7:23 AM
Joined: 5/19/2019
Posts: 11


My daughter was 22 and her dad was 57 when they said he had a form of dementia.It changed rapidly,She had a very hard time and I advised her to take the offer of getting an apartment with her friends.Her dads' progress was rapid. Our local ALZ society had nothing for someone that age and the doctors kept changing the diagnosis.There was no family history.They said FTD LBD,ALZ. He died last November 2018 at age 58.The autopsy showed none of those things except possible CTE.She moved home and we are trying to pick up the pieces.Good luck to you
MommaJae
Posted: Tuesday, October 13, 2020 5:11 PM
Joined: 10/13/2020
Posts: 1


Hello, my husband is 64 and had a massive heart attack when he was 59. After that he has never been the same.  After a diagnosis of amnestic MCI it has officially changed to Alzheimers.  We retired in 2018 after trying to keep it hidden for as long as possible for insurance reasons.  We have 3 daughters aged 25, 23 and 19.  My youngest was 14 when all this started and I feel like she has been forgotten.  We took care of his mother for 5 years with Lewy body Dementia and his father had Alzheimers so I guess there is a strong genetic element.  It is very lonely, watching him slip away and now we are so isolated because of COVID.  He gets mad when I tell him to put on a mask, so it's just easier to not go somewhere.   Anybody else having trouble with the mask issue?
BAH1982
Posted: Monday, November 16, 2020 8:08 PM
Joined: 11/16/2020
Posts: 2


My mother is 61, diagnosed at 59. I am 38, my sisters are 37 & 34. I have just now been dipping my toes into support systems online.  I have spent the past 2 years learning what I could about EO and dementia. I will be happy to share anything helpful I come across. You are also welcome to message any time, I have very young children and will get back to you as soon as I can.
rubberduck
Posted: Friday, December 11, 2020 11:13 AM
Joined: 12/11/2020
Posts: 2


Hi, 

I'm 27 and my sister 30, going on 31 and our Dad was diagnosed this past Feb before he turned 62. I get where you're coming from about it feeling like an island sometimes. None of my friends know how to support me, and I feel like the only people I can turn to are people my parents age who are dealing with people my grandparents age. 

I live in South Carolina near Charlotte, NC.. but I'd love to talk if you'd like. 

I haven't found anyone near my age to be able to talk to who can relate besides my sister - and even we're processing everything differently.

-M


acsmith412
Posted: Monday, December 14, 2020 9:31 PM
Joined: 1/17/2020
Posts: 19


Hi! I am 31 and my father was diagnosed just over a year ago at 63. I still don't know how to process everything. He just started a clinical trial at Columbia in NYC. I am in the Albany, NY area but would love to talk if you would like to inbox me! I have 2 older siblings and its like he was diagnosed and we all moved on and never discuss it. I feel like talking to someone would really help..
jk356520
Posted: Saturday, December 26, 2020 10:29 PM
Joined: 12/26/2020
Posts: 2


Hi! I'm 22 years old and my dad has shown signs since I was 12. He was 53 when it started and is now 62. We had our fair share with it too!
Jill351
Posted: Friday, January 1, 2021 7:47 PM
Joined: 1/1/2021
Posts: 1


Hello,

I had seen your post and my mom was diagnosed at 65 with Alzheimer’s in 2015  and from what the doctors said, she had mild symptoms showing 3 years prior. My dad had passed away in 2009 and I was her caregiver at 39yrs old. 

My mom had been living with me, my husband and young children since 2012. . She had language impairments, and her thoughts were scattered, she was losing her fine motor skills during the early stages. It was devastating to watch someone you love, losing there abilities as time went on, and the thing was my mom knew she was losing her abilities she was still aware of it. Her memory didn’t go til a few years later. As time went on, the paranoia and mood swings came into play which were very hard, especially when she was in the moment of having an episode. Medicine had helped somewhat but it wasn’t a cure. 

 My mom said, earlier on in her disease that when things get worse with the disease do not let the grandkids see her like this. So, in 1/2018 she moved into a memory care unit, which was nice because it only had 17 residents and private rooms that looked like apartments without the kitchens. Yes, were the residents way older then my mom of course they were, I expected this. I had to leave her there and trust she would be taken care of, which she was. I think I cried all the way home that day. I visited as much as I could and still took her out and tried to do as much as she could tolerate. As time went on she suffered many falls and breaks because she never sat still and was always a mover and shaker. See in her mind she still thought she could walk around and do things. Her vision became distorted and she would bump into things as well.

As the disease progressed further, it was time to move to a nursing home in 8/2020, which with Covid was horrible on top of it.  She passed peacefully on 10/2/2020, ten days before her 70th birthday. 

It doesn’t get any easier, you have to take each day as it comes and remember to make time for yourself. You take the good days and bad days as they come. Cherish the good days you to do get with her.

I always say, I had 2 moms the one who cared for me and raised me and the one I took care of when she couldn’t. Every persons situation is different and not everyone will experience the same things with their loved one going through this disease. Take each day as it comes and enjoy the time you have.

My mom lived 5yrs with the disease.. You grieve the loss of the person even when they are still living. 

 


spx1026
Posted: Friday, January 15, 2021 2:32 PM
Joined: 12/11/2020
Posts: 4


Hello!

My mom was recently diagnosed with with EO, she will be 51 in March. I would love to connect with you. 

I am 24 and my brother is 21.

Thank you! 


MandaLaura
Posted: Monday, January 25, 2021 9:07 PM
Joined: 1/25/2021
Posts: 1


Hi,

I am 33 years old and my mom was diagnosed with Primary Progressive Aphasia about 3 years ago. Last year it was confirmed she has early on-set Alzheimer’s. She is 58 years old. I’d love to connect with anyone. Hard watching my mom decline, my dad struggling and my younger sister’s denial.


theoldestdaughter
Posted: Saturday, February 13, 2021 4:36 AM
Joined: 2/13/2021
Posts: 1


Hi! I just moved from Georgia. But I love the idea of starting a group for the younger children.
LilBellaBear
Posted: Saturday, February 20, 2021 8:15 PM
Joined: 2/20/2021
Posts: 1


My first message, but it was nice to read your post! I can totally relate...I’m 38 and my mom is only 69. Just diagnosed...neither of us thought we’d have to deal with this since she’s so young. Hang in there. Lmk if you want to talk

Emily 


Rebokeefe
Posted: Thursday, March 4, 2021 8:51 PM
Joined: 3/4/2021
Posts: 1


Hey! My mom was officially diagnosed this past fall at the age of 67 although she’s been struggling for a few years now. Although not quite as young as your mom and I’m 35 (not quite as young as you) but I can still relate to what you’re going through. Feel free to reach out! I’m also looking for others going through similar struggles,
Mountainsofjoy
Posted: Tuesday, March 9, 2021 10:49 AM
Joined: 1/21/2021
Posts: 1


My mom got diagnosed a year ago at age 57. I was 33. I am really struggling. It's heart breaking seeing how this is affecting her but it's also affecting me and my children. They are 16 and 9. She stays agitated and doesn't want them to be kids laughing and playing. They don't understand this and don't really want to be around her but have no choice because we had to move in with her. They want time with just me but my mom has to go everywhere I go. She refuses to stay alone. She has developed severe anxiety and constantly fearful and agitated. She is still partly herself as we are still in what I think is the earlier stage. I know it's frustrating for her but for us also. I feel so smothered and pulled a thousand directions. I'm exhausted and we haven't even got to the really bad parts yet. I just wanted to hopefully get on here and maybe someone out there can relate.
Janitsa
Posted: Friday, March 12, 2021 10:11 AM
Joined: 3/11/2021
Posts: 1


Hi everyone,
My mother is 59 years old and she was diagnosed with AD a few years ago. I feel like she has progressed very quickly. In approx 3-4 years she has gone from still being independent to needing round the clock care. She can no longer feed herself, she cant dress herself, she is basically non verbal (she mumbles and we can only make out maybe 1 or 2 words she says) and cannot bathe herself properly. My father is her main caregiver who feeds her her meals and gets her dressed (he is 74). My sister lives with them and helps the best that she can as well to make sure my moms hygiene  is at its best and she gets all her meds (My sister is 30). I live outside of the home and I pass by the house as much as possible to assist any way that I can (I am 31). We are having a hard time with this situation because we feel like none of the medicine is helping her and she continues to decline more and more. Its becoming more difficult to care for her and she gets agitated easily. We are needing to convert the bathroom to become handicap accessible and get bed rails so she does not fall out of the bed while she sleeps. We feel like the insurance is no help at all with providing assistance (We dont understand much about how insurance works) We would love to have a home health aid come to the home a few days a week for a couple hours to assist with her and give my father a break. We would appreciate any advice that you can offer. We just feel so alone

French
Posted: Friday, March 12, 2021 2:47 PM
Joined: 6/13/2020
Posts: 543


Young daughters, if you need help for insurance and other practical things, I think you can directly ask questions about that in the spouse ou caregivers forum. caregivers who already managed that will help you I an sure . As I live in France I cannot unfortunately, but I read a lot of advices on this topic in the spouse forum. Don’t hesitate even if you are not a spouse !
Oines51
Posted: Friday, March 19, 2021 12:08 PM
Joined: 10/10/2018
Posts: 4


My husband was diagnosed with EOAD at the age of 52 in 2017. We have kids that are 24, 21 and 17. As his disease progresses, it is getting harder for all of us to cope. Our 21 year old daughter and 17 year old son are starting to show signs of depression. My husband is still home and has progressed to stage 5. I have to dress him and do most of his grooming. I would love to connect with someone who is going through the same thing.
Stefannypants
Posted: Sunday, March 28, 2021 7:42 AM
Joined: 3/28/2021
Posts: 1


This is almost the exact same story as my mom.

My step-dad died from cancer in fall 2017. My mom was his primary caregiver, and started experiencing aphasia at this point. We all thought it was caregiver burn out, but after about a year, she started the process of having it investigated—speech therapy, basic imaging, cognitive testing. Tests were not conclusive and they told us it was not progressive.

Fast forward to last year when we were finally able to get insurance approval for a PET scan. This, in conjunction with an LP, led to her Alzheimer’s diagnosis. She was 67 at the time of diagnosis, but her symptoms started at 64. It’s so hard to watch the progression. 

I hope you are taking care of yourself in ways you can. 


HowDoYouDeal
Posted: Wednesday, April 14, 2021 8:09 PM
Joined: 2/17/2019
Posts: 380


I was 41 when I learned that my ( estranged ) Dad was dying of Early Onset. Because it runs in our family, I got in touch with DIAN, or the Dominantly Inherited Alzheimer Network. They are used to dealing with younger people.

 

https://dian.wustl.edu/for-families/

  • For Families
  • Registry
  • Genetic Counseling & Testing
  • Family Conferences
  • Webinars
  • DIAN EXR Newsletter
  • Video Gallery
  • Family Voices
  • Resources
  •  

    In Canada, it took 8 months to get tested, in all it was a year between finding out my family had the PS1 gene, and finding out that I did not inherit it.

    Since I am really stubborn, while I waited, I looked for something to help because this whole 'no cure' thing had me trying to figure out how I'd decide when to roll out my own 'Still Alice' ending. 

    I couldn't handle that so instead I searched everything I could find, often missing the best information following webpage after webpage of into an infinite rabbit-hole, only to get a link emailed to me by a friend the next day, from some big news source.

     Some believe that a few types of Light Therapy (PhotoBiomodulation) and /or  MRI Guided Focused Ultrasound could be very helpful for people with Neurological Conditions, including those caused by brain injury and inherited medical conditions.

     I am one of those people. There aren't that many of us, but if you want to learn more.....

    https://sunnybrook.ca/education/media/item.asp?c=2&i=2238&f=focused-ultrasound-alzheimers

    Here, for instance, is a comparison of two Light Therapy devices..

     

United States, Arizona University of Arizona

  Not yet recruiting

 Tucson, Arizona, United States, 85721

 

 United States, Florida University of Florida

 McKnight Brain Institute

  Recruiting

 Gainesville, Florida, United States, 32610

  Principal Investigator: Adam J. Woods, PhD

 

 

     Granted, this trial is for older people, who are in 'community living', but by reading their precis, you can see what they are getting at.

      https://www.clinicaltrials.gov/ct2/show/NCT04018092?term=LED&cond=Alzheimer+Disease&draw=2&rank=3

    The study on Gulf war Veterans with PSD produced very similar results to to the Boston University trial on mice. (spoiler, it reduced symptoms, reduced behaviours)

    These are same type of results  Li-Huei Tsai found with mice, Ismail showed for some participants, and reinforces results from Saltmarche case studies, also Nadler.

    https://www.bbc.com/future/article/20200519-alzheimers-can-flashing-lights-provide-a-new-treatment

     ClinicalTrials.gov and search 40Hz ( or PMB or NIR).

     It takes a bit of searching to get all the data together, because this is all so relatively new, that is, since 2016  ( Bringing Gamma Back) https://picower.mit.edu/node/704

     by Li-Huei Tsai, of Harvard, that industry hasn't even agreed on precisely what to call it.

     

    It has been a while since I dove headfirst into this, to save my own skin, actually. my own brain.

     It was my husband that got to me, when he said

    "if you have this gene, it not only means I will most likely have to bury my wife, but there is a chance I will have to bury our daughter as well"

     

     

     

     

     


lwalke7
Posted: Monday, April 26, 2021 2:18 PM
Joined: 4/22/2021
Posts: 1


Does anyone know of any support groups for younger people who are caregivers for parents with early onset? My mom is now 68, I am 26 and have been her primary caregiver for the past two years. I was living in another city about two hours away and ended up having to move home because my older sibling who lived close would not take her in when we started noticing that it was getting bad and she could not handle living by herself. At first it was a major struggle getting adjusted to giving up my life and the progress I had made to come back home and take on this position...I was in major denial for a long time that this was even the reality for me or for my mom. Things have gotten worse and my mom needs more help with everyday hygiene task and she’s gotten to the angry stage so things have been really hard. The stress is almost unbearable and putting her in long term care costs sooooo much! I feel like I can’t even properly grieve because the task of caregiving takes so much of my energy and thoughts and feelings.
Smarie55
Posted: Wednesday, April 28, 2021 5:24 PM
Joined: 4/28/2021
Posts: 1


Hi!

To say I’m happy to be joining this conversation would be a lie. I wished for a different outcome for my dad, but it seems inevitable. However, I am very grateful to have this platform to be able to chat with other people that are struggling with a loved one being diagnosed with Early onset. My dad will be 59 this year. It started with him seeming to tell the same story over and over. Also he seemed to lose his train of thought more often and eventually struggle with putting words together. It took too long for his diagnosis. They treated it as a depression, having he lost his brother and then his mom. So, of course they put him on meds for that which I hated, who knows if that was a positive or a negative. Anyways, he was diagnosed in 2019 and is now starting to really show the signs. My mom is really struggling with trying to work and make sure he is ok at home. I am 1 or 2 children, I’m 37, my brother will be 40 this year. It’s tough. I look forward to hearing others stories and finding new resources.


Melodious bird
Posted: Thursday, May 20, 2021 8:15 PM
Joined: 5/20/2021
Posts: 9


My husband was diagnosed in his early 60’s and my children were 16 and 17 at the time. We have been having difficulty finding resources. Everything seems more geared towards spouses who are retired and can care for their LO or older children. This is not our case at all. I have been looking and working with SW for almost 5 years without any luck. If you find anything please let me know. My kids are 20 and 22 now and it has been difficult for them.

One thing that has been helpful is going to counseling so they at least have someone to discuss their feelings with. I am sorry if this isn’t helpful


tinydreamer13
Posted: Monday, May 24, 2021 1:01 PM
Joined: 11/27/2018
Posts: 5


Hey, coming back to add an update. It's been a few years since I've posted here and my dad is still doing relatively okay, I guess. He stopped working about a year and a half ago, and quarantine has been really hard for him, since all the activities he planned to do (volunteering at the local YMCA, etc) were closed down due to COVID. He's still super physically active, though, which is nice. His biggest issue at the moment is trouble with conversation, he's got some moderate to severe aphasia and can't remember even simple words sometimes. He understands them, just can't say them.

He's going to be at my sister's high school graduation, which we're really thankful for.

Anyway, I relate to so many people here in that I haven't found any good resources for young people whose parents have Alzheimer's. I wonder if us here on this forum could create a support group somehow, or a group chat?

noakes
Posted: Tuesday, June 29, 2021 12:32 PM
Joined: 6/29/2021
Posts: 1


I have been having the same issue as most of the people on this message board it seems. My mom was diagnosed with EO when she was 53 and I was 21. I’m now about to be 24 and am struggling to find anyone who can understand what I’m going through. She was my best friend since I am an only child and she and my father divorced when I was 6. I’m thankful that my grandma and my aunt can care for her on a daily basis (she lives with them) but I have to do everything else regarding financials, medical appointments, conversing with doctors, caring for our 5 animals, etc. It’s been incredibly difficult having to help my family members deal with her illness while also dealing with it myself and feeling like I have to be the most responsible one in the family because no one else can do it. I struggle with losing my best friend and not being able to start a family due to stress and the future unknown. It kills me that she will not know her grandchildren (if I’m ever able to get that far) and for me knowing if it’s even okay to be thinking about trying to start a family and considering a timeline when that would even be feasible. If anyone is in NC that can relate I would love to have someone to talk to.
Jo C.
Posted: Tuesday, June 29, 2021 1:35 PM
Joined: 12/9/2011
Posts: 13332


Tiny dreamer; don't know if you are familiar with it, but you can start a private group here and choose who will be able to join.  Just go up to the top of the page; click on the word, "groups," then click on the green box to create a private group.  This may be one way to start a sharing group in like circumstances.  There are chat rooms, but they are not always easy - you can find that link at the top of the page too.

Of course there is Facebook, etc.; so it might be that you can get a group going that will serve everyone best.

J.


OhioState32
Posted: Thursday, July 1, 2021 9:46 AM
Joined: 7/1/2021
Posts: 1


My wife was diagnosed at the age of 50, our two daughters (17&15) are really having a hard time with their mother and her condition. My youngest was baker acted a few months ago threating suicide and has really disconnected from everything. Our oldest daughter likes to just stay away from it all, looking for every possibility to be away. I try to be supportive of them and my wife but the girls cannot do anything but argue with their mom because of her lack of communication; that is she cannot communicate verbally (its all mumbled) and her memory loss. I try to play the part of being a mom trying to fill in for my wife but it is hard. I feel for the children dealing with a mother or father who has this terrible disease.
Kalbert
Posted: Monday, July 12, 2021 8:03 AM
Joined: 7/12/2021
Posts: 1


Hello All,

My mother passed away two years ago from EO FTD. She began with Primary Progressive Aphasia. I was 18 when we began to notice symptoms of FTD. She passed away when I was 28. She suffered for roughly 10 years with the illness. I went through a variety of emotions regarding the situation, denial, anger, sadness and eventually acceptance. I have not found younger individuals that went through what my family went through. I am interested in finding connections with people that can relate to this situation and offering support to those going through what my family went through.

 


Mari23
Posted: Thursday, July 29, 2021 1:16 PM
Joined: 7/29/2021
Posts: 2


I’m 22 and going through the same thing with my mom. I just started posting here so I’m not sure what kind of support I’ll find, I’m open to anything.
Cherjer
Posted: Sunday, August 1, 2021 12:36 AM
Joined: 8/30/2016
Posts: 140


I am so sorry to her about your mom and early onset. I felt the same way as you when my husband was diagnosed and went to support group of people who had parents and grandparents with AD. I could not relate as this was my husband and so different from a parent or grandparent. I never went back but found a group of people who were like me with spouses that had AD. Perhaps you can reach out to others who have parents with EO and you can form your own support group. I think the commonality is so important...you  have some work to do to find young people with the same issue as you but it will be so helpful.