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Looking for teens willing to share their Alzheimer’s experiences
Internal Administrator
Posted: Thursday, January 5, 2012 8:10 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: still missing grandad

Hi everyone! My name is Celia Caffery, and I'm 16 years old. I'm writing a guide for teens on how to interact with people with Alzheimer's disease. I'm looking for teens to interview who are willing to share their stories and experiences.

I lost my grandfather to Alzheimer’s disease when I was 12. He was diagnosed a year before I was born so I never knew him free of the disease. Therefore it was important for me to develop a relationship with him through his disease, but it was difficult and sometimes painful for me to visit him.

For the past year, I’ve been volunteering at the Alzheimer’s unit in a local nursing home, and I’ve noticed that very few teenagers visit the unit. I understand the intimidation of visiting people with Alzheimer’s, so I decided to write a guide to facilitate teenager’s visits with their loved ones, based on the experiences of other teenagers.

This August I am traveling across the country to interview teens from different backgrounds who have relatives with Alzheimer’s disease. I want to include their stories in my guide along with any strategies that have proven to be helpful to them for both dealing with the emotional hardship of having a loved one with Alzheimer’s and making the most of their interactions. The guide will also tell teenagers what to expect and give them tips to make their interactions go more smoothly and the whole experience less daunting. With over 5 million people in the United States today diagnosed with Alzheimer’s, there are many teens who would benefit from hearing the stories of other teens.

Thanks,
Celia
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Rebecca Groves

Hello Ceclia,

Thank you for taking on this task. You are one of the rare people who have a very kind and loving heart. I know your efforts eill be rewarded.

Maybe you next effort can be to help educate adults.

I have vascular dementia and I am 59 years old. I am constantly searching for information.

You are a brave and smart person.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: voluntee007

Hey Celia! I am glad that I read your post! I am currently volunteering at a Hospice as well, working with Alzheimer/ Dementia patients. I am 19 and a half, does that count? I only been doing this for four weeks. None of my family members have dealt with this diease (for which I am grateful), therefore I know very little about it. Sometimes I feel that I often do not know what to do and interact with the patients. Most of my visits consist of me just feeding the patients who have poor motor skills or none at all. I tried to read to the patients, however, that doesn't work very well. Perhaps I am reaching this a wrong way. Most of my time, I just provide social interaction with my patient. It is very hard to communicate clearly. The patients really enjoy massages (on back/ shoulder) and hugs. I think these simple gestures go a long way. Female patients like it when they get their nails done or if you comb their hair. I guess beauty has no age limits . Well I hope this help you. Let me know when your pamplet comes out! I'll be sure to read it! My email is star791706@yahoo.com.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Sierra1995

quote:
Originally posted by gperko:
hey, my name is grace. i'm 15 years old and my dad has alzheimer's. i'd be happy to answer any questions you have




Hey my names Sierra. Im fourteen and my mom has had alzheimer's for five years now. We just put her in a home in July. Its just me and my dad now and our relationship is totally strained. Im just totally lost and I dont know what to do anymore. I find myself watching home videos of her ever night.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Jezza

Celia,

Please visit this post:

Help for 15 year old with Dad...
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Emily83

Hi Celia,

Did you ever write this? I think it is a great idea, as my cousins and I could have used something like it when my grandmother was diagnosed. I am writing about how 20-somethings could get more involved with Alzheimer's research/awareness, and I'd be interested in hearing your thoughts.

Sincerely,

Emily

quote:
Originally posted by still missing grandad:
Hi everyone! My name is Celia Caffery, and I'm 16 years old. I'm writing a guide for teens on how to interact with people with Alzheimer's disease. I'm looking for teens to interview who are willing to share their stories and experiences.

I lost my grandfather to Alzheimer’s disease when I was 12. He was diagnosed a year before I was born so I never knew him free of the disease. Therefore it was important for me to develop a relationship with him through his disease, but it was difficult and sometimes painful for me to visit him.

For the past year, I’ve been volunteering at the Alzheimer’s unit in a local nursing home, and I’ve noticed that very few teenagers visit the unit. I understand the intimidation of visiting people with Alzheimer’s, so I decided to write a guide to facilitate teenager’s visits with their loved ones, based on the experiences of other teenagers.

This August I am traveling across the country to interview teens from different backgrounds who have relatives with Alzheimer’s disease. I want to include their stories in my guide along with any strategies that have proven to be helpful to them for both dealing with the emotional hardship of having a loved one with Alzheimer’s and making the most of their interactions. The guide will also tell teenagers what to expect and give them tips to make their interactions go more smoothly and the whole experience less daunting. With over 5 million people in the United States today diagnosed with Alzheimer’s, there are many teens who would benefit from hearing the stories of other teens.

Thanks,
Celia

Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: gperko

hey, my name is grace. i'm 15 years old and my dad has alzheimer's. i'd be happy to answer any questions you have
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: msdaughter

HI /celia,
I am not a teen, but saw my grandmother go through this when I was a very young adult and am now dealing with my mom. You are a very resilient young lady and channeling your feelings in such a positive way! I have teenage children who don't understand this disease and there is very little information our there that comes from a teen's point of view. There is a need for what you are doing.
I will forward this information to my kids and nephews hope that they will respond.
joni -california
Good Luck to you in
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Tori_P

Hi Celia,

I am glad I found your post. I will be 14 in june, my great aunt has alzheimers and she still knows who I am but gets bad mood swings. My mom was very close to her when she was young so it is very hard for her to handle and I was around 6 when she was diagnosed so I don't remember her without alzheimers very well. My aunt lives with us, so it is very hard to handle at times. I have a ton of respect for you.

Tori
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Rita's girl

I'm interning at the local chapter of the Alzheimer's Association, and we have talked about creating a teen forum. I think most teens are uncomfortable asking for adult advice, but it's different talking to someone your own age.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: still missing grandad

joni and voluntee007- I'd love to meet with both of you if you have the time. I'm going to be all over California from August 10-12. Where in California are you?
voluntee007 I'll email you-thanks.
joni- could you send me an email so I can get in touch with you? celiacaffery@yahoo.com
Thanks!
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Johanna C.

I just realized that this discussion was held in 2007 and 2009. Whoops.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Rita's girl

I know it's almost a year and a half later, but I'm doing a similar project for the local Alzheimer's Association. My grandmother was diagnosed when I was a baby and she died when I was 12, so I had a very similar experience. If you are still looking for stories or if you finished pamphlet e-mail me at bzgirl835@aol.com

Claire

p.s. I'm 17 now
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Carolina Songbird

My mind may be a teenager's at times, but my body is way way older. Frowner But I wanted to say how excited I was to see how many people posted to this thread who don't post often. I would love it if we had more teens and 20-somethings on the boards to add a new perspective to all us gray-haired folk. Are there things that could be done to the website to attract more younger folk?
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: rnk567

I live in Wisconsin so we couldn't exactly meet up but I'm 16 and my dad was diagnosed around a year and a half ago.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Pam W.

I am so glad to see teens reaching out to teens. I will tell my 18 year old about you all. She has been an advocate for EOAD in the Tulsa area.
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: Carolina Songbird

Tori, welcome to the board. I'm so glad you found us here so you can learn more about your great-aunt's condition and how to cope with it. The folks here have lots of ideas and experiences to share.

You may want to come visit the Caregivers forum, for you are a caregiver, for sure! Caregivers come in all ages, relationships, shapes and sizes. The conversation over there is much more lively than here. (Or come check out the chat rooms in the evenings -- they are pretty quiet during the day.)
Anonymous
Posted: Thursday, January 5, 2012 8:10 PM
Originally posted by: still missing grandad

Thank you for your kind words Rebecca. Please know you are in my thoughts and prayers.
 
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