RSS Feed Print
Children of parents with Early onset/ other dementia
Mimi S.
Posted: Saturday, September 28, 2013 9:47 PM
Joined: 11/29/2011
Posts: 7027


Lonna, next time you want to use connections, try calling the help line: 

1-800-272-3900 and ask for the person to walk you through the process. 


angelnc
Posted: Monday, September 30, 2013 10:57 AM
Joined: 9/26/2013
Posts: 2


Lonna, I sent you a message on Facebook but the window said it went to your "other" message folder. My name is Angel Snipes Shankle from Rockingham, NC on Facebook. I would love to connect with you if you would like to add me to your Facebook page, thanks
struggling
Posted: Thursday, October 3, 2013 12:11 PM
Joined: 9/29/2012
Posts: 50


I rarely browse the boards anymore, not finding it particularly helpful.  HOWEVER...

I do find the plate throwing idea VERY enticing!  I think it is great idea.

 

I am one of those parents with early onset.  I hate, hate, hate it!  But your suggestion was great!  

 

Just imagine a gathering of frustrated people, old, young, and in between, having an absolute blast while releasing some of their frustration.  

 

Maybe it could become a nation-wide yearly event!  Something to look forward to, and possibly to keep living for.

 

We could attach some money to this:  All those who do not have Alz are required to bring at least one plate (or whatever we choose to require).  

 

Us Alz people will bring or not bring a plate, depending on the circumstances. 

 

 

What do you think? 

 

(Please add suggestions and/or potential problems)


Iris L.
Posted: Thursday, October 3, 2013 6:31 PM
Joined: 12/15/2011
Posts: 18519


I'm sorry you don't find the message boards helpful, struggling.  I am concerned that fewer patients are using the boards than in earlier days.  Do you have any suggestions that could help make the boards more helpful for youself and other patients?

Iris L.

js181
Posted: Sunday, October 6, 2013 5:28 AM
Joined: 10/6/2013
Posts: 2


I want to know how you deal with it. My mother is 52 or 53 and im 33.
js181
Posted: Sunday, October 6, 2013 5:29 AM
Joined: 10/6/2013
Posts: 2


KSkelly430 wrote:
Hi! My name is Katie, I am a 22 year old primary caregiver for my 50 year old mother. I was looking around to see if there was anyone else in a similar situation between 15-30 taking care of a parent. I am looking for peers to connect with; I started going to a local community center to reach out but it seems that I may be the only one looking for more of a therapeutic support group rather then a social hour. If anyone our there is looking to form a new connection and to go through the process with some outside opinions I would embrace it with open arms. looking to start something new for myself and to grow as a individual.
How do you deal with it and what do you do is there any help???????

Iris L.
Posted: Sunday, October 6, 2013 3:38 PM
Joined: 12/15/2011
Posts: 18519


As a patient who has been diagnosed with cognitive impairment nos along with other medical conditions, I deal with this by FIGHTING FOR MY LIFE!  I sought out any thing that was treatable, correctible, reversible or modifyable, and worked on it.  I'm still working on it.  I have made much progress. 

I rely on the members of this message board for suggestions, advice and encouragement. 

I work on not fearing the future, but on living my life to the fullest now.

I rely on God for help.

Iris L.

Lonna
Posted: Monday, October 7, 2013 12:47 PM
Joined: 5/12/2013
Posts: 75


js181, my name is Lonna. A couple other younger caregivers and I have found more success connecting on Facebook. You are NOT ALONE. Feel free to friend or message me on FB (Lonna Whiting) or email me at lonnawhiting@gmail.com. I'm not worried about stalkers, obviously. Please connect!
Lonna
Posted: Monday, October 7, 2013 3:04 PM
Joined: 5/12/2013
Posts: 75


Iris, you continue to inspire me, and your courage and optimism is contagious! I took my mom to Mayo last week, and her diagnosis was "statistically" closest to Alzheimer process (even though she doesn't fit the symptoms), so basically dementia, NOS. Our nurse navigator says there are about 80 different kinds of dementia that haven't been defined yet, and mom likely could be categorized in one of them. At any rate, even with the unknowns and the answers we may never get, and the wondering and worrying, it's people like you who we all need to listen to for the RIGHT way to believe, think and behave. 

Also ... does anyone else HATE the term dementia? UGH!


mcquown
Posted: Monday, October 7, 2013 6:24 PM
Joined: 8/14/2012
Posts: 7


i am 39 and just lost my mother to the same thing alzhimer's
mcquown
Posted: Monday, October 7, 2013 6:26 PM
Joined: 8/14/2012
Posts: 7


yes
Shink
Posted: Thursday, October 10, 2013 10:30 PM
Joined: 10/10/2013
Posts: 1


I am 30 years old and my mother is 61. She has had frontotemporal dementia for 8 years, and January will make 9 years since onset of symptoms. She is in end stages of the disease and we are essentially at a point of watch and wait. It is incredibly difficult at any age to deal with and cope with a loved one suffering from Alzheimer's and dementia. It is a different experience though going through it at any earlier age and being the primary care giver. I just joined tonight but anyone feel free to message me or connect.
Lonna
Posted: Monday, October 14, 2013 11:44 AM
Joined: 5/12/2013
Posts: 75


Shink, welcome. I look at this message board every day for updates, though many on this thread haven't communicated in a while. It would be nice to hear how everyone is doing! Feel free to connect with me here or on FB!



Myriam
Posted: Monday, October 14, 2013 9:27 PM
Joined: 12/6/2011
Posts: 3326


Welcome, Shink. Am sad for the reason you have to join us, but glad you did. Looking forward to hearing more from you.
littlerabbit
Posted: Tuesday, October 22, 2013 11:06 AM
Joined: 5/30/2013
Posts: 18


Hi Lonna,

Sorry I haven't been on the boards for a while. I was really busy studying for the LSAT. Going to law school next fall....Sometimes I take a break from the boards too because I feel I need to escape a little. My mom is diagnosed with AD but she has had MRIs and they show some vascular dementia features too so I can't be 100% sure. I feel just like you do. I'm sad for my mom and scared that the same thing will happen to me. Some days are easier than others though. I'd definitely love to connect on FB too!


juls1887
Posted: Monday, November 4, 2013 8:49 AM
Joined: 11/4/2013
Posts: 1


Hi all,

This is my first time ever writing about my situation - I saw this topic and wanted to share my story as well. I am 26 years old and have been taking care of my mother with dementia since I was 18 (with help from my father and brother as well). My mother is my best friend, she is the best person I have ever known with a true heart of gold; unfortunately she was only 50 years old when she was diagnosed with this horrible life changing disease.

I live at home with my father and we both take care of my mother, who is now at a late stage needing constant care. (we also have a caregiver that comes during the day while we are at work).

For the first few years I was very strong about what was going on - I didn't want anyone to feel sorry for me or my situation so I never shared my story, even at the time when I was away at college I never let my friends know why I was going home every other weekend to see my mom. As I finally started to open up over the years, I have found how lucky I am to have friends and other family members that truly care so much. However, lately I have found that almost ten years later I've been more sad than I have been before. I miss my mom. I often wonder what it would be like to have her in my life right now in a different capacity, able to have conversations and spend time together as adults.

I am at this point in my life where things are changing; friends are now getting married and starting their own families, people I know have been embarking on new adventures in their lives. Half of me is sad that I don't have my mom there to share these times with, and the other half of me feels sometimes resentful that this disease has changed what maybe my life would have been if this situation didn't happen.

I would love to talk to someone who is in the situation who understands all of these feelings. I hope someone else can relate to this as well, I appreciate your time for reading. 

-Julie


Myriam
Posted: Monday, November 4, 2013 3:21 PM
Joined: 12/6/2011
Posts: 3326


Julie, it's why they call Alzheimer's the Long Goodbye. Hope you find some comfort on these boards. Hugs to you.
Ohmyheaven
Posted: Friday, November 8, 2013 8:40 PM
Joined: 11/8/2013
Posts: 1


Hi Mom! Myriam is my Mom.

It was so good hanging out & talking with you on your way to Saint Louis. I am glad that your flight was diverted but I am sorry for keeping you up so late.

I can't wait to see you again!

 

*hugs, love & kisses*

 

 

 

 


Myriam
Posted: Friday, November 8, 2013 10:50 PM
Joined: 12/6/2011
Posts: 3326


Love you, too. Your hugs were so great. :x lovestruck
Geegee
Posted: Saturday, November 9, 2013 1:01 PM
Joined: 11/29/2011
Posts: 514


Myriam, I think this is the first "family reunion" we have seen on the boards!


Ohmyheaven, welcome welcome.  Your mom is such a wonderful advocate for all of us who have this dreadful disease.  We are glad you are here.  You will learn so much for everyone here.  The caregivers and people like your mom will help you with insight and information to understand this experience.


Come back often and be a part of our family.  Hugs!


dbarbero
Posted: Wednesday, April 9, 2014 11:55 AM
Joined: 4/9/2014
Posts: 1


Hi!  My name is Dana.  My mom Pam is 59 and was just diagnosed with Dementia.  I am looking for support and other children of people who are still young that have been diagnosed with Dementia.
jerogjai
Posted: Monday, April 14, 2014 2:34 PM
Joined: 4/14/2014
Posts: 1


Hello, 

I'm 29 and taking helping take care of my 61 year old father. I would also like to reach out and talk to folks about all of this. Words fail me becuase there is so much involved in this situation. Take care and feel free to message me. 

-Jai


heehee0617
Posted: Sunday, April 20, 2014 11:16 PM
Joined: 5/13/2013
Posts: 2


Dear Kelly,

I live in NYC and my dad has early onset. I am 36 and fine myself angry and guilty all at the same time. I would like to connect.

Alison


heehee0617
Posted: Sunday, April 20, 2014 11:19 PM
Joined: 5/13/2013
Posts: 2


Sorry I meant to write Katie not Kelly
Iris L.
Posted: Friday, May 2, 2014 1:02 PM
Joined: 12/15/2011
Posts: 18519


You need permission from the Alzheimer's Association.

Iris L.

Myriam
Posted: Friday, May 2, 2014 1:12 PM
Joined: 12/6/2011
Posts: 3326


Hi, Caitlin. It's wonderful and commendable what you're trying to do. You will probably get great information from the Alzheimer's Association. If you haven't contacted them yet, please call 800-272-3900. It is the Association's helpline, but if you call them during working hours (they are in Chicago...Central Time) and explain what you would like to do, they will transfer you to someone whom can help you. Hope this helps, and thanks for your enthusiasm and desire to help.
Cknapp
Posted: Friday, May 2, 2014 1:25 PM
Joined: 4/15/2014
Posts: 1


Okay. Thank you. I reported my post so that it can be removed. I will contact the Alzheimer's Association.
kristy160021
Posted: Friday, May 16, 2014 6:37 PM
Joined: 1/12/2014
Posts: 3


Hey Kati,

I'm in a very similar situation. My mother is 55 yrs old and suffers from early on set Alzheimer's disease . I'm 29yrs old and have the help of my dad and brother. I know exactly how you feel because I can tell you I feel the same way.. thinking that no one understands the situation because most people with this disease are way older. To tell you the truth I vented on her about finding younger people my age with the same situation. I had someone contact me and there is actually a facebook group dedicated to what we are going through. It has been a life saver. The group is called adult children of early on set dementia victims. I suggest you check it out ....

-kristy