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Children of Parents Diagnosed with Early Onset
iwantmymomback
Posted: Thursday, July 20, 2017 5:06 PM
Joined: 2/7/2017
Posts: 9


Hi All,

I'm curious if there are any other children (young adults really) who have a Mom or Dad whose been diagnosed with Early Onset? My mother is 58 and was diagnosed this May after struggling with short term memory and cognitive problems for over a decade. Doctors kept ruling out ALZ until we went to the Mayo Clinic this year. 

Anyway, I am having trouble coping and being able to find others my age (I am 28 and my siblings are 30 and 24) who are going through the same situation. Most of the people I meet in the support groups have an older parent or spouse in the same situation. I can appreciate what they are going through and it's still very helpful to meet and talk through our experiences. But I am having trouble coming to terms with such a large age gap. It can be hard to relate when my mother is so much younger. 

I am also wondering if anyone has found any helpful resources besides support groups? There is so much out there but again, about 90% of it is catered towards the older ALZ which doesn't necessarily apply to what my Mom is going through right now. I know it eventually will but I'm trying to find applicable information for EO specifically. 

Just wondering if there is anyone else out here in the Nashville area in their 20s or 30s with a parent on this situation. I really feel like I'm on a lonely island most of the time...


jfkoc
Posted: Thursday, July 20, 2017 5:25 PM
Joined: 12/4/2011
Posts: 16783


I think there are some on the caregivers forum.
EmancipatedToes
Posted: Friday, July 21, 2017 11:59 AM
Joined: 4/25/2017
Posts: 104


I'm not in the Nashville area (I'm in the Seattle area), but my mom is EO at age 60, and I have had struggles finding resources/support that fit the unique aspects of EO. That said, these boards have been very helpful for me in a lot of ways. I'm happy to talk about things-I will send you a connection request.
Tjahnke
Posted: Friday, July 21, 2017 1:28 PM
Joined: 7/6/2017
Posts: 19


My husband is 46 diagnosed with FTD PPA. We have a son who is 15 and a daughter who is 18 and like you, I wish they had some personal connections to be able to talk out their feelings with others who are experiencing the same thing. Absolutely no one knows how hard this is or can relate unless they are actually experiencing this head on. Let me know if you are on Facebook and I could get you connected with my daughter.( she is a bit younger) It may be a way to connect and encourage one another through this tough journey.
alz+
Posted: Saturday, July 22, 2017 2:18 PM
Joined: 9/12/2013
Posts: 3415


as we have to invent our own treatments, looks like you have to invent your own support networks.

One of my things has been to gripe about thinking their parent "is not there" anymore. You love your Mom and want her to enjoy her life and be with you through the events of your life.

There may be a treatment which helps her become "her old self".

Meanwhile, with most of us there comes a time when we become more responsible than our parents for their ability to live their lives. As trite as it sounds we have so much to be grateful for that we sometimes expect life to carry us to a graceful end in comfort. When you get back to appreciating her even in a decline (as far as we can guess) you will have your Mom even though she is changing.

The greatest gift is acceptance. You learn to give back what she taught you over your life. It is the circle of life. Make the most of it.

Good for you reaching out and I bet you start a great group before long. Wishing you the best.


Jo C.
Posted: Sunday, July 23, 2017 11:12 AM
Joined: 12/9/2011
Posts: 9672


Dear Friends:   This Message Board has "Connections" where folks can speak privately off the Message Board.

 CAVEAT:   There are so many non-Members who come onto this site to read, and so I would be remiss if I did not mention what most of you already are well aware of.

PLEASE be extra cautious when posting personal information.   Please be extra cautious about who you let into your own private spaces.

Sometimes not all is what it seems despite nice prose and nice photos.  There are lurkers who spend time looking for people of vulnerability and they are willing to wait and forge relationships over time in support of their own agendas.    We have seen that here upon occasion in the past.

This is especially most important for very young Members.  I recall one young lady, who was supposedly in High School who was luring another young person to meet up with her.

It turned out that the one initiating the meet up was not a high school kid but someone with bad motives.    Thankfully, that was caught.

This happens, so please do be cautious and do think about creating your own Connection, or Special Group off the main board at this site, or Chat Room availability.   And more than anything, please be cautious about posting personal information on an open site.

Thanks for listening,

J.


plopez0409
Posted: Sunday, August 13, 2017 7:08 AM
Joined: 12/21/2015
Posts: 2


I am 32 and my mom is 59. She was diagnosed 2 years ago after 3 years of being tested for everything under the sun. We knew it was ALL because of a family history. I sent you an invite to connect up.
kep20
Posted: Monday, August 21, 2017 4:10 AM
Joined: 9/4/2012
Posts: 12


Hi,

I am so sad to hear about your mom. I can absolutely relate. I'm 28 and we just put my 71 yr old dad in AL-MC. He was diagnosed 6-7 years ago.

The first thing I would do would be to schedule a care coordination meeting with your local Alzheimer's Association chapter. It was great for resources, making decisions, and having an open and honest conversation with family. 

This disease is the worst disease imaginable and there are so many levels of pain to it. I am a little ahead of you in the process, so if you ever need anything or just want to vent, I am here!


kmedavis1
Posted: Friday, August 25, 2017 8:37 PM
Joined: 7/7/2017
Posts: 8


Hi Tjahnke,

You are the only person I have come across in my situation, so far.  I am 52, my husband is 58 and was diagnosed in May.  We have a 16 year old daughter who, I am certain, feels like she is the only kid in the world dealing with this.  Our local ALZ chapter does not offer any support for these kids.  I am sure it's because they are so far and few between. Surely we aren't the only ones. I have also been talking to them about adding in some social activities other than art museums! 


Linz8241
Posted: Monday, September 4, 2017 1:15 PM
Joined: 8/23/2016
Posts: 1


 My mom was diagnosed a few years ago-she's 68. I'm 34 and know exactly what you mean about feeling like you're alone. I went to a support group for the first time a few weeks ago and was the only person there under 60. Getting tips and such from them was nice, but I wound up feeling worse thinking about how I have to deal with this now, while they are all dealing with it much later in life. Which I instantly felt guilty about, of course.

 


Tjahnke
Posted: Monday, September 4, 2017 2:29 PM
Joined: 7/6/2017
Posts: 19


I am hearing about younger cases all the time especially in FTD and the decline is usually rapid. It is really hard on teens and kids in general. I agree that there needs to be more resources for these kids.
LSheed
Posted: Thursday, July 26, 2018 11:52 AM
Joined: 7/26/2018
Posts: 1


I am not in the Nashville area but have a very similar story to you.  My mom went to many doctors and was denied to be seen by a few due to her young age.  She finally got a diagnosis a few years ago after struggling with symptoms for a few years before.  I have a younger brother and we both are married but I am still learning to cope with the fact that she won't get to do that "grandma" thing or "retirement" activities like traveling with my dad.  I live in Iowa but would like to make a connection with you or any other young adults out there in the same situation.
alz+
Posted: Thursday, July 26, 2018 5:47 PM
Joined: 9/12/2013
Posts: 3415


Jo C @warning on making connections off the boards:

It is becoming a new thing online, targeting people who are open about having a cognitive problem and being scammed or enticed into revealing information.

Also fake postings and other problems. Be smart, be cautious.


Mama Bear # 1
Posted: Thursday, August 16, 2018 2:14 PM
Joined: 8/16/2018
Posts: 3


Hi there. I am a 44 year old single mom of my 16 year old son and I have early onset dementia that I think is likely LBD. My son and I could really use a friend in this too. Maybe you could mention him to your kids and see if either of them is interested in an online friend that really "gets it"! My dementia goes back and forth and I know that my son feels a lot of the same stresses and worries especially since he is the one that often has to pick up the slack when I forget to make dinner or put something on the shopping list or whatever. I'm sorry for what you and you whole family are going through. I know it's so hard. If they want to they can set up their own message board?

 


Mama Bear # 1
Posted: Thursday, August 16, 2018 2:16 PM
Joined: 8/16/2018
Posts: 3


Hi there. I am a 44 year old single mom of my 16 year old son and I have early onset dementia that I think is likely LBD. My son and I could really use a friend in this too. Maybe you could mention him to your kids and see if either of them is interested in an online friend that really "gets it"! My dementia goes back and forth and I know that my son feels a lot of the same stresses and worries especially since he is the one that often has to pick up the slack when I forget to make dinner or put something on the shopping list or whatever. I'm sorry for what you and you whole family are going through. I know it's so hard. If they want to they can set up their own message board?

 


Mimi S.
Posted: Friday, August 17, 2018 8:24 AM
Joined: 11/29/2011
Posts: 7036


Welcome to our world I want my mom back.  Unfortunately, in spite of the activity on this board, Younger Onset is not common. I would suggest contacting your local Alz chapter (ask at help line:1-800-272-3900) for the name of a social worker. You must have someone who is familar with your problems.

As time goes on, you may get some solace from local support groups. Regardless of age, the problems faced are similar and you will be educating other caregivers about your plight.


mabbs210
Posted: Thursday, August 30, 2018 11:04 AM
Joined: 8/18/2018
Posts: 2


I get it. I am 38. My mum started having noticeable memory problems back in 2008/2009. They started before that; she noticed while she was still working, but only spoke to my father about it. My mum was in decline before she even retired at 65. She's now 74 and now in stage 6. I totally understand what it feels like to want your mother back. My mother was sweet and gentle and funny. This disease has made her aggressive and paranoid and unhappy. A couple years ago, I was in the grocery store before Thanksgiving and I didn't know where to find an ingredient for the gravy. I took out my phone to call my mum. Before I even dialed I realized she would have no idea where it was or even what I was talking about. I had a complete meltdown in the grocery store. She finds such little joy in anything anymore.
Jen77
Posted: Thursday, August 30, 2018 8:13 PM
Joined: 9/23/2017
Posts: 67


My DH and I have 3 children ages 16,13,10 and my husband is 55 and was diagnosed with early onset last year.
John1965
Posted: Monday, September 3, 2018 7:45 PM
Joined: 8/19/2016
Posts: 282


My wife was diagnosed 3.5 years ago - “happy 50th Birthday, you have Alzhimers!”  Our kids are now 23 and 17. The only advice I can give is to let your school aged kids’ teachers and principal know. There may come a day at school when your kid needs a break (time away from class, an extension on an assignment, a hug).  I’ve sent emails to my daughter’s teachers asking for awareness and understanding - not special treatment. My wife’s desire for privacy (denial) complicates all interactions.
Despera-termined
Posted: Tuesday, September 4, 2018 8:38 AM
Joined: 4/2/2015
Posts: 45


john1965...how is your wife now doing?  Mine was "happy 52nd birthday" although I had been being treated for it for 3 1/2 years.   



LadyBirdBrittney
Posted: Thursday, October 4, 2018 4:55 PM
Joined: 10/4/2018
Posts: 1


Hi there! I know exactly how you feel- I came to this website because lately I'm really having a hard time processing my dads diagnosis. We found out in August 2017, after he started acting strange- my stepmother was very determined and had a million tests run. I thought he was just having a midlife crisis, hoping to god it wasn't Alzheimer's. He's only 56 now. I'm 27 and my siblings range from 26-32. I live in Austin Texas but spend a lot of time in Nashville ! If you ever see this and want to meet up next time I'm there I would love that. Everything is catered to older Alzheimer's- EO is so different. 

It's hard to find the light ya know. Like it's just very very depressing that my dad worked hard his whole life, took care of his health- was working towards that retirement and boom - all that just to lose your memory. I feel like I'm in a state of avoidance, almost compartmentalizing it. Because it's so emotional to think about the future. That my dad won't be there when I'm a parent. I miss him everyday and think about my childhood often. I feel such guilt for sometimes being unable to call him, to visit, to deal with it. It just feels so bleak. Ok enough venting. That felt good. Thanks for posting and hope to hear from anyone!

Brittney 


riajean
Posted: Sunday, October 7, 2018 7:25 PM
Joined: 1/26/2015
Posts: 172


Dear iwantmymomback

Don’t know if you’ve connected with anyone yet who can be a friend as a child of someone with ALZ but our son who just turned 29 in early September is having a lot of trouble dealing with his fathers early onset.  My husband was officially diagnosed with Amnestic MCI in the fall of 2014.   Something was wrong as far back as 2012 but we didn’t recognize that it might be a problem or something sinister.   The Dr just kept saying I’m sorry.  He was 61.   Hindsight showed this whole thing started way before that diagnosis.   

Our son is our only child together.   He has stepsisters and step brothers. He is devastated at his father’s condition and lives close to us because of choice. He could really use someone as a friend as a confidant someone because going through the same things as he is.     If you are interested let me know, and maybe we can connect. It’s very important that siblings have support. And he has been feeling very very alone with us.   

 I wish you the very best with your mothers illness. I know it’s not easy for us. I am my husbands sold caregiver and I’ve known him for 45 years. This is devastating and very hard on all of us. He is progressing and it’s very hard to watch. But again, connecting with people who are going through the same thing it especially in your age group would be very very helpful I believe.  

Much love and support.  We are in Western NY.   


ComeBack2Me
Posted: Wednesday, October 10, 2018 5:28 PM
Joined: 1/25/2018
Posts: 27


"Support for Young People who's Parents have Alzheimer's"

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147530648&boardid=77




Chelsea650
Posted: Tuesday, October 30, 2018 1:55 PM
Joined: 10/29/2018
Posts: 1


Hi. Im 34 and my mom got diagnosed with ftd a couple of years ago. Shes 70 now. Yeah I understand being among the younger caregivers.  It sucks and I wish there was a cure for all these nasty diseases.
Jo C.
Posted: Tuesday, October 30, 2018 2:23 PM
Joined: 12/9/2011
Posts: 9672


This is a very old Thread from July of 2017.

For those who are new and would like to share, please go to the green button at the top of the Message area and start a new Thread.   This will get you many more responses and they will be current and more easily responded to.

J.

 


goaskm0m
Posted: Monday, November 12, 2018 1:34 PM
Joined: 11/12/2018
Posts: 1


Hey there

I'm 23. My brother is a sophomore in college. My grandma had dementia and now we believe my mom does too. I would love to talk to you more about what you have gone through/are going through. I'm pretty lost and confused right now. 

 


tinydreamer13
Posted: Tuesday, November 27, 2018 10:09 PM
Joined: 11/27/2018
Posts: 4


Hey! I'm a 21 year old college student, and my 54 year old dad was diagnosed with EOAD this summer, although he's had symptoms for about 2 years before that. I have a 15 year old sister as well, and I know we've struggled in the months since to come to terms with the diagnosis. I know I've found it super hard to come to terms with the fact that my dad really will only be a part of my childhood and not my adulthood--that he may not be there to see me graduate college, get a job, be at my wedding, etc. That goes doubly for my sister, who might not even have dad at her high school graduation.

Obviously, this all depends on how quickly his symptoms progress (they're mild right now), but even so, it's been really hard to find other people to talk to about this, or other people who get what I'm going through. Good to know that there are other young people dealing with this. I'd love to connect with any of you (adults or teenagers, if they're comfortable).


John1965
Posted: Friday, December 7, 2018 11:08 AM
Joined: 8/19/2016
Posts: 282


tinydreamer13

My family is in a very similar circumstance. Your worries are not unfounded, but may be a bit pessimistic. Each case is different, but the disease usually progresses somewhat slowly. Given your age and your sister's age I really feel for you. My wife was diagnosed at 50 when our kids were then 13 and 20. As their dad, I want their lives to be as normal as possible and to make the most of college/high school/early career years. Given your dad's recent diagnosis and being in the early stages, I recommend trying to have experiences with him that YOU will remember fondly. If your family can afford it, travel to favorite (or new) places. Be there for your mom as much as you can, but try also to live YOUR life to its fullest. 


Cheremvp
Posted: Monday, December 10, 2018 8:32 PM
Joined: 12/10/2018
Posts: 6


Great advice. Enjoy every moment. My husband is declining quickly. He was diagnosed with Early onset at 54. We have young children and my daily goal is to just keep their lives as normal as possible. He thinks they are his siblings and now calls me mom. This disease is just horrible.
pwill96
Posted: Friday, January 4, 2019 11:09 PM
Joined: 1/4/2019
Posts: 1


Our situation sounds so similar. I’m 21 and my mom was just diagnosed with Alzheimer’s. For about 5 years we’ve been seeing doctors about speech, analysis, memory and cognition problems. We were told it was a stroke but she kept getting worse. I have 2 older brothers and a dad in the picture but we’ve never been a very close knit family...always on good terms just not super communicative. The diagnosis has hit all of us in unique ways (my father the hardest, who now has to undertake a new role as both business owner and caretaker). I go to school in VA and they live in FL. I had plans to go to law school in DC. Now, I question whether I should or if I should go home. My mom has an appointment in February that’s supposedly going to give us an estimation of how much time she has left. Anyways, I’ve been having a really hard time and haven’t really opened up to my friends because it’s almost like if I don’t tell them, then they’re my safe space where I can run and hide and have fun and pretend like my world isn’t actually upside down. We started seeing symptoms when I was young ... around 15 or so and I will admit I hated being around my mom because she kissed me off as a teen. I thought she didn’t care about me and would forget what I told her. Little did I know. Now, I have a hard time taking others advice to cherish her because when she struggles o just get so angry even though I KNOW it’s not her fault ...... any advice?
Mimi S.
Posted: Saturday, January 5, 2019 12:40 PM
Joined: 11/29/2011
Posts: 7036


Welcome to our world, pwill. I'm so glad you found us.

I'm sorry but the disease takes the time it takes. No one can predict how long.

I'd urge yo to go ahead with your law degree. Depending upon the specialty you hope to pursue, there might be a law school closer to where she lives.


Birdies
Posted: Saturday, January 5, 2019 9:52 PM
Joined: 7/3/2018
Posts: 44


Hi pwill, sorry to hear this, as you and your mom are young.  AD knows no boundaries or discrimination, and it seems that many younger people are getting diagnosed.  It sucks.  

I’m older than you and my mom was 75 when she started to exhibit symptoms (she’s 78 now), the disease has been tremendously difficult on my mom and our whole family.  I spent a year crying, and decided that was not going to be of much help to anyone or myself.  I have decided to “cherish” the time we have left with mom.  You will never regret doing that.  

We are trying to keep mom happy, busy and comfortable at home.  It is hard, but it is life for us now.  Laughing (with mom... about mom), makes the disease and situation easier to handle.  We have learned to go into mom’s world and not vice versa... I often joke that I “speak” Alzheimer’s.  Music and singing make mom feel great, walking everyday (if possible) is very helpful.  I’m going to start a weekly “sing-song” for Alz patients and their caregivers/LO’s where I live... this has shown to have a powerful impact on those with AD and the caregivers.

Also, since you are in FL, consider getting your mom a medical marijuana license.  We started my mom on THC at night for sundowning and it has helped with the agitation and sleep.  She also takes a small amount of CBD oil during the day.  Everyone’s chemistry is different, so you have to adjust doses.

This board and the kind people have been helpful to me.

Also, i just read that Holland America cruise line is sponsoring a week cruise for those with AD and their caregivers/families leaving from the east coast of FL this spring.  The premise sounds great and helpful.


Kgaines09
Posted: Monday, February 4, 2019 8:30 PM
Joined: 2/4/2019
Posts: 1


Hi my name is Kourtney and I live in Louisiana. I’m 24 years old and my mom is 44. My mom has  dementia caused by a brain tumor . It’s a hard thing cause my family doesn’t understand what my mom is going though. I understand it a little then them because I work with people who have it. I have to  constantly tell them or explain to them why she say the things she say. Or repeat her she self. I knew something was wrong with my mom for two years now. I had a hard time getting the dr to check my mom out. Conversation are not the same. My mom has got lose, don’t remember who people are, for things that happened long ago. And as I said repeat over and over. I let her say what she needs to one or two times. Then I change the conversation. But they don’t understand that. It’s hard
anm424
Posted: Saturday, March 9, 2019 5:16 AM
Joined: 3/9/2019
Posts: 1


Hi there.

This is all completely new to me. I am 27 and my 57 father has eod. Around the moderate 5 stage. He was only recently, like yesterday, diagnosed even though we have been looking for this answer for years now. I currently reside in Ca while my father and my step mother moved to OR a year and a half ago. I’m struggling with extreme stress and anxiety over pretty much everything. I can’t seem to wrap my head around this disease. I call my step mother everyday and we are each other’s support system right now. I just wish I could do more from California.


Vik
Posted: Saturday, March 9, 2019 7:12 AM
Joined: 2/26/2019
Posts: 172


First of all, i am SO SORRY about ur situation!  Please know that it is not only good for u and ur readers to see ur posts, but everyone is SO SUPPORTIVE!   You mentioned in ur post about a test to see how long the disease will last.  Im wondering if you would b willing to tell us about that test especially the name of it. Thank you in advance...
 
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