The Power of Dementia Chats!
The Power of Dementia Chats!
Click on the logo below and then scroll down the page to all recorded sessions.
Below is a comment that is usually kept private in Memory People on Facebook, but I asked permission as the power of these words I believe might be able to help others. They brought tears to my eyes. I hope they touch you as well. I want to thank Lucy Rawlings and her family for her comments and willingness to share this touching story with us.
This is the note authorizing permission to print, but also has a great message wrapped in Lucy’s words as well.
Sure Lori, please do. If you just knew how my kids just did not want to know about their Grandfathers AD. It was taboo to even raise the topic in family conversation. Dena helped them to see that young people get this disease too and one of my daughters is 15 years old just like Dena’s so when she heard that on this Chat she cried so hard. But they fact that they are speaking with their friends about AD and they are at the point where they are sharing their experiences with my Dad and learning from their friends experiences just blows me away. This taboo subject is now being talked about. Dena connected with them in a way I never could. I want them to be involved in our family discussions about my Dad, not be be afraid or run away. Now they are. I am so appreciative for this everybody.
Her is Lucy’s original comment:
Hey everybody, I just wanted to say that my family watched the recording of this weeks Dementia Chats with Lori La Bey this morning and we were blown away. Wow what an amazing discussion. My Mom hangs on every single word you say Harry Urban, she loves to hear you speak and asked me to tell you this. My teenage kids who up until they saw Dena Soseman Dotson on Dementia Chats, would not even discuss their Grandfathers AD (My Dad) with anybody as it was an older persons disease only in their minds. Now they have watched their second Dementia Chats with me and my daughters are so taken with Dena and have learned so much from listening to her. My youngest daughter came home from school Friday to tell me about her friends grandmother who has AD and how they talked about it in school! So Dena you have given my kids the courage to learn and speak about dementia, thank you. And Steve Ponath, you are such an amazing and powerful speaker. You have suffered so much with your EOAD and our country has been so cruel to you. Your personal account was so powerful. Anybody who has not heard this webinar you will find the link to the recording on Loris page. Please listen. The four most powerful advocates I have ever heard speak! Thank you for all you guys do.
Lucy’s comments in wrapping up:
I needed to say this because I want other families to benefit from the Dementia chats like we did. My Mom was so upset at Christmas when Dad did not want the tree and decorations in their home. When she listened to Harry speak on the Dementia Chat that focused on the holidays and how he can have some difficulties with the extra noise and lights….she was not so scared anymore. She understood more. We all did. And now my kids are talking with their friends about their Grandfathers AD and learning about their friends family members whose lives have been touched by dementia too…has changed the entire dynamic in my family about AD. My youngest daughter now realizes that this disease can touch everybody regardless of age and that its ok to have Ad and its nothing to be scared of, but its important to speak about it and discuss it.
Click here to get the last recording which is referred to above.
You can find more resources provided by Alzheimer’s Speaks by clicking on the logo below:
Because of the way the brain must function in a bilingual individual, those who speak multiple languages may also have a decreased risk for early-onset dementia and Alzheimer’s disease.
Keeping that mind active is so important. Thank you for your comment
Lori
Great blog. And great chats. Thank you.
Thanks you love your blog!
Lori
I feel really desperate to speak to anyone in a similar situation. My husband has early onset, he was diagnosed just over 2 years ago. He is now 60. We have a young family, children between the ages of 5 -12 years. I am finding it harder and harder to cope with as he has got worse. Each child is struggling with their fathers illness. So far I haven’t had much support with this as where we live, quite rurally the adult services and childrens services don’t seem to cross over. I haven’t yet met anyone in the situaion we are in and neither have our local agencies. Please be in touch if you can share experiences.
Gina
I am actually going to repost your comment to see if we can get you connected to some people. I would personally recommend connect on Facebook with Memory People. It’s a closed group with a variety of people and situations. Also Dementia Chats is a webinar that is free if you can join us live you might be able to connect to a few people there as well. The live sessions are held the 2nd and 4th Tuesday of each month from 3pm EST, 2pm CST, 12pm PST. This link we take you to the information. Just scroll down the page until you see Dementia Chats. http://alzheimersspeaks.com/become-dementia-friendly
Lori
one day while in the depths of despair over this, I bemoaned to my husband that it would be easier to take this dementia if my mother totally forgot who I was. He looked at me and said, “She already doesn’t know who you are if she believes that you would steal from here!” That really hit me, yes, indeed, she DID NOT know me if she thinks that I would ever even consider stealing from her. Likewise your mother doesn’t know who you are now if she thinks you would steal from her.
This information is provided from the Alzheimer’s Association Australia Help Sheets. Although the vast majority of people with dementia are elderly, there are often young children and adolescents in the household – or close by – who are strongly affected by the illness of someone they love. It may be their grandparent who is affected by the illness or, in the case of younger onset dementia, their own parent. At a time when they are trying to cope with their own growing up, they find that they also have to cope with a family member who is ill.
Thanks for writing Elliot. Alzheimer’s Australia has some great resources.
Lori
My mam died a few weeks ago at the age of 76. She had suffered from dementia for about the last 5 or 6 years of her life. For most of that time, it was minor forgetfulness, but my sister who is trained as an aged care worker picked it up quite early. She had brought us kids from England to Australia in the mid 70s with my dad leaving behind her network of support (a large family of brothers and sisters). She was selfless in her devotion to giving us a great start in life and I loved listening to her stories of events past. She was the best storyteller in that Irish/Yorkshire way. Hilarious. When the dementia started to hit, she lost her confidence to tell stories. She was unable to remember the little details that made them so entertaining and as a result went very quiet, relatively speaking. In the last few months of her life, her dementia meant that she imagined her brothers and sisters were on their way over for dinner, even though most of them had died by then. She often woke up at night and started packing to go and see her mam and dad. The silver lining to this was that she started making stories up. They were obviously not true, but her sense of humour shone through and she told some great stories in the last few weeks of her life and we sensed she was enjoying herself.
Thanks for sharing. I’m so glad you were all able to move with the disease and still maintain your relationship.
Lori
We all need to communicate with other people. Communicating our needs, wishes and feelings is vital – not only to maintain our quality of life, but also to preserve our sense of identity. This factsheet gives tips and advice for communicating with someone with dementia and on how to encourage the person to communicate in whichever way works best for them.
Hi Linda
Thank you so much for writing. I appreciate you taking the time to share your feedback about Dementia Chats with us.
Lori
I needed to say this because I want other families to benefit from the Dementia chats like we did. My Mom was so upset at Christmas when Dad did not want the tree and decorations in their home. When she listened to Harry speak on the Dementia Chat that focused on the holidays and how he can have some difficulties with the extra noise and lights….she was not so scared anymore. She understood more. We all did. And now my kids are talking with their friends about their Grandfathers AD and learning about their friends family members whose lives have been touched by dementia too…has changed the entire dynamic in my family about AD. My youngest daughter now realizes that this disease can touch everybody regardless of age and that its ok to have Ad and its nothing to be scared of, but its important to speak about it and discuss it.
Thank you for sharing. Your comments are so encouraging for us to continue our work with Dementia Chats
Lori
I found this site very awesome and I just wanna thank you for that. I hope you keep up the good work!
Thank you for your comment
Lori
U have a very nice weblog over here. I just wanna say thanks for all the interesting info on it. I’ll follow your blog if you keep up the good work!
Thank you I”m glad you like the blog
I look forward to you visiting again
Lori