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Message board for teens?
ThereBmonsters
Posted: Thursday, November 15, 2012 11:54 PM
Joined: 11/15/2012
Posts: 21


My boys need an outlet. My wife has Alz and I get lots of offers for help, and of course here.  Does anybody know of a message site, or Facebook page maybe, where they can vent?
Iris L.
Posted: Friday, November 16, 2012 12:00 AM
Joined: 12/15/2011
Posts: 16606


Welcome, ThereBmonsters.  Your boys can post on the General Caregiver's board, as well as any board, but they will receive more responses there. 

Often there are teens and young adults who post.  Your boys may also benefit from reading what an older caregiver has to say to them.

In the summertime, some of the chapter have Camp Building Bridges for children and grandchildren of dementia patients.  You would have to check with your local chapter to see if it is offered.

Please invite your wife to join us on this board.  We want to meet and support her too.

Iris L.

ThereBmonsters
Posted: Friday, November 16, 2012 8:14 AM
Joined: 11/15/2012
Posts: 21


Thanks.  I am spreading the word through the family but I am not sure anybody else has joined.  I don't mind their being anonymous but I would like to see them reach out.
DeeDeeDaddysGirl
Posted: Friday, November 16, 2012 3:41 PM
Joined: 11/14/2012
Posts: 9


Hi ThereBmonsters,

 

I'm so sorry to hear about your wife--sending love and hope your way.

 

In regard to your question, I've been searching for something similar. I'm not a teen but I'm 25 and my Dad was recently dianosed with Early (Younger) Onset Alzheimers at age 57. Although I haven't found anything thus far, I've been exploring the idea of creating an outlet for teens and early adults. Perhaps we can collaborate?


Iris L.
Posted: Friday, November 16, 2012 7:52 PM
Joined: 12/15/2011
Posts: 16606


Welcome, DeeDeeDaddysGirl.  If you scroll through the General Caregiver's board, you will find threads by other young adults who wanted to connect their peers.  However, these threads were from a few months ago. 

You can post on the General Caregiver's board with a title such as "seeking 20-something caregivers of AD parents".  You will likely get fresh responses.

Iris L.

jklewis
Posted: Friday, November 16, 2012 11:47 PM
Joined: 11/16/2012
Posts: 4


Hi there my name is Jess. I am 18 and I have been searching for that same outlet (no luck). Starting a facebook page might be very beneficial.
Iris L.
Posted: Saturday, November 17, 2012 2:02 AM
Joined: 12/15/2011
Posts: 16606


Welcome to the message boards, Jess.  I'm going to start a thread just for you on the General Caregiver board.  Look for a thread called "For teen caregivers".   You can hook up with other teens.

Iris L.

ThereBmonsters
Posted: Saturday, November 17, 2012 4:38 PM
Joined: 11/15/2012
Posts: 21


Thank You!
ashnicole
Posted: Thursday, March 14, 2013 3:34 PM
Joined: 1/24/2012
Posts: 17


Hi all!

 

I started a private group of teens and 20-somethings dealing with a parent with EOAD, but can't seem to figure out to make it a public thread. I am 25 now, and have been dealing with my mother's diagnosis since I was 16 years old. She was 57 at the time of diagnosis.

 

I just created a facebook group and will be posting on the boards to make teens and young adults aware and to join. Please spread the word! In facebook just search for the group name "Alzheimer's Support Group for Teens & Young Adults". There will be a picture of a flower next to the group name when it pops up. My name is Ashley Santillo and I am the administrator. Hopefully this group grows and will be a great outlet for us children dealing with a mother or father with the disease.

 

Together in the Fight,

Ashley


Iris L.
Posted: Thursday, March 14, 2013 5:47 PM
Joined: 12/15/2011
Posts: 16606


The Alzheimer's Association went to a lot of effort to create a mechanism for members to form their own groups on THIS site.  I am not comfortable with people using this site to draw away members to FB.

Iris L.

ashnicole
Posted: Friday, March 15, 2013 2:44 PM
Joined: 1/24/2012
Posts: 17


Iris,

 

While I would never want to make you or anyone uncomfortable, I believe we can never have too many outlets when dealing with AD. I understand the efforts of the Alz. Assoc. in making this online message board, and I will continue to these boards as a means of communication, but for us teenagers and young adults, Facebook and social media is an easier and more practical means of communicating with one another. I look at it as a support group since I have yet to come across an in-person support group tailored just for our age group, at least in New Jersey that seems to be the case.

 

Ashley


Johanna C.
Posted: Friday, March 15, 2013 5:21 PM
Joined: 12/9/2011
Posts: 11214


I understand trying to find or build a good place where kids and young adults who are facing a loved one with dementia will have a forum where they can express themselves and share.

 

When there are young kids and teens involved, great care must be taken.  There is that grave concern about who is on the other end of the electronic tether talking to the kids.  Safety is the priority above all else.

 

As wonderful as most people can be, there are always predators looking for windows of opportunity and one of the evil dynamics used is to find kids who are troubled, grieving, or in homes with severe problem issues and then to become the kids friend, grooming them and manipulating in order to meet their own grotesque ends.

 

Predators know that a kid who feels lonely, misunderstood, troubled, etc. is more likely to respond to someone reaching out to them, even if they don't know that person.  The predator knows he can use that need and trust; he depends on it.

 

Some males pose as females, some older people pose as young and so much more, but no matter the approach, the goal is always the same.  Often, the predator is willing to wait long, long periods of time, always grooming and manipulating the situation.  It's part of their game. They are also often willing to travel significant distances to manage to meet up with a kid they have convinced to meet them.

 

How this can be overcome is just a very real huge area of concern which cannot be overlooked or taken lightly.  While there are risks with many things in our lives, this is not one to be minimized.  It is a particularly huge risk that has been growing and growing as a problem issue often with tragic outcome.

 

Support groups for children (kids and teens) facing a life threatening chronic illness of a loved one including dementia and bereavement groups for kids are just so hard to find; they are sorely lacking.

 

One thing that can be done if one does not want their kid online is to contact local churches, community centers, city halls, kids centers, and any other valid group and try to get funding or other support to begin a support group right in your own community.  One can even contact their own local Alzheimer's Assn. and ask if they would be interested or to receive guidance on how to go about doing this.

 

I just wish all online groups could be risk-free and safe for our beloved kids who do not yet have mature judgment and reasoning .  We are the ones who must be the protectors.

 

Johanna C.


Iris L.
Posted: Friday, March 15, 2013 8:20 PM
Joined: 12/15/2011
Posts: 16606


The groups were designed to be social media for this site in lieu of FB.  Is there a reason why a teen group can't be started on this site?  I'm just wondering.

Iris L.

Kizziejane
Posted: Monday, March 18, 2013 9:51 PM
Joined: 3/12/2013
Posts: 2


I will pass this message board to all three of our children.  Ages 16, 15, and 12.  My husband, their dad is 52 and possibly has FTD with motor neuron disease.  They really need a place to put their thoughts, fears and whatever else.  Blessings to you all...
wendala128
Posted: Monday, March 25, 2013 10:45 PM
Joined: 3/4/2013
Posts: 4


It would be wonderful if there were a facebook page...My husband was just diagnosed this month with EOAD at age 55.  Our youngest daughter is 20, still at home and not dealing with this well at all.  As an adult with many more years on her, I have a lot more coping skills in place to handle this.  My heart breaks for my husband, but more so for myself and my three girls.  If something comes up, please let me know.  I may mention the facebook idea to my daughter.  She is creative and this might be a good outlet for her.
legoguy161
Posted: Tuesday, March 26, 2013 9:53 PM
Joined: 12/26/2012
Posts: 20


Well if your boys have any questions sir they can talk to me.  I am an 18 year old who comes from an EOAD family. My mother had it and passed away when I was ten.
legoguy161
Posted: Tuesday, March 26, 2013 10:15 PM
Joined: 12/26/2012
Posts: 20


feel free to add me on facebook.   www.facebook.com/brandenleider
mindysue
Posted: Tuesday, March 26, 2013 11:12 PM
Joined: 8/2/2012
Posts: 2


I am 21 and My dad has alzheimers, I too want just a group of people my own age that know what I'm going through.
Myriam
Posted: Tuesday, March 26, 2013 11:33 PM
Joined: 12/6/2011
Posts: 3326


I posted this reply on another message.  Maybe it'll help connect all of you who may be interested: 

 

If you want, those of you who are teens and twenties may want to communicate directly with each other through connections. See the tab above between inbox and groups. If you have a problem figuring out how to connect, there is a users guide in the connections tab. Hope this helps you! 


cd1335
Posted: Wednesday, March 27, 2013 10:34 PM
Joined: 11/19/2012
Posts: 42


I have kids also(12 & 6) that when ready ..at least for our 12 yr old might benefit from others in the same boat. Their Dad was just diagnosed with EOAD in Nov - he turned 57 in January.

 I prefer this forum for my kids -for now,  as I am not  ready to let even the oldest go on Facebook yet. Thanks.