Tuesday, August 16

I Have Mid-stage Dementia. Here's What I Truly Need.

LIVING-WITH-DEMENTIA VIDEO:

Christine Bryden was diagnosed with dementia at the age of 46. A single mother with 3 girls, as well as Senior Executive to Australia's Prime Minister, she has since married, published 2 books and become a grandmother. Six years into her dementia, see her talk about what it feels like and what you can do to help.


Following her diagnosis with Alzheimer's disease, Christine wrote her first book, "Who Will I Be When I Die?" (published by HarperCollins in 1998 under her maiden name of Boden, with a revised edition by Jessica Kingsley Publishers in 2012). Since then, she has been a strong advocate for people with dementia, addressing conferences around the world and appearing in the media.

Continued below video...

She married Paul 4 years after her diagnosis. Elected to the Board of Alzheimer's Disease International, she served with distinction for 2 years. Slowly declining, she managed, with Paul's help, to continue to talk about what it feels like and what you can do to help.

Mrs. Bryden published "Dancing with Dementia" under her new married name. This was in response to many requests for updates on her new life in the slow lane of dementia. In fact it was commissioned by the Japanese publisher of her first book, for launch at the international conference in Kyoto. It talks of how she met Paul, and describes what it is like to have dementia and what you can do to help.

Mrs. Bryden now has lived long enough -- defying all medical expectations - to become a grandmother. Life in the slow lane of dementia has become fulfilling in so many ways.


SOURCE:
  • Australian Aged Care Quality Agency

9 comments :

  1. Are we able to have access to her PowerPoint presentation? I would love to have one at my fingertips to refer to while at work...

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  2. This amazing presentation by Christine Bryden is categorically the finest and most empathetic I have ever had the privilege to view and experience.
    She is so spot on and these 28 minutes of a perfectly delivered speech was a very moving experience for myself having had to make this dreaded decision for my dad almost a year ago.
    I thank God that He provided such an amazing specialized care facility with small intimate cottages that were each carefully designed and engineered for residents with this most challenging disease.
    My heart still breaks after each visit because this is not how I want to enjoy my dad's company but this disease is no respecter of persons, however I am so grateful for the peace and harmony that his unique home provides to him and loved ones visiting.
    I will recommend this powerful video presentation to the care home manager as hopeful mandatory viewing for each care aid and to the social worker who engages the families who have the brutal and often quick decision to make, when a bed finally becomes available. I will also recommend it to the local Alzheimer support groups, as it is so superb for so many that are hanging emotionally by a thread!
    Thank-you so much for posting this wonderful video declaring this most difficult placement decision by Christine Bryden, and the careful and thoughtful process that must be considered for our loved ones, if we can consider it with a measure of true empathy...very well done Christine! :-)

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    Replies
    1. This was just a wonderful presentation. I looked after and cared for my 56 year old son who had dementia and a year and a half ago was diagnosed with cancer. In June of 2015 I was left with him in a nursing home and I was promised pallative care but didn't get it. I had to clean my son up while he was dying and look after two other men who was in his room, get them back to bed as well as hold my son's hand while he passed. He fell out of bed three times and all bruises.One time he had to go to the washroom and he fell out of bed and the woman that was putting the laundry away found him on the floor an hour later. I went everyday to make sure they would give him his needles and he was so good natured. He sat by the elevator waiting for me to come. I have chose to dye with dignity even though it's against my belief as I don't want to go through what my son did. I loved my son so much that I have no regrets and I'd take him for drives that part he just loved until he couldn't walk anymore. I could relate to every part of this presentation that was presented so well. Both my son and I were/are Christians. At least he is in no more pain and safe in the arms of Jesus. I miss him so much. It's been a nightmare for me to get over. I know you have a wonderful husband who will look after you and when the time comes I know he will make sure you're in the best place where you will be cared for. God Bless you and I just showed lots of love to my son and I know you will have the same care and loved. Loved your video. I hope it goes viral.

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  3. My husband and I are very close to going into a new home.I am still fighting to not go into one. Im getting where I am uncontrolable now and hes getting scared of me. I used to be a nice person,but now Im not..We have been married for 40 yrs and I hope we Pass togeather.I have had this for 9 yrs now and so has my husband.
    Mrs. Bryden, You have touched my heart so deeply and I respect and Love you for this. You have made my spirits rise up.I truly wished that our people in our world had a heart. It saddens me greatly, the way people treat us. My mother died with this and my hubby and I took care of her until her passing.I understand exactly what your going through. I have to ask my hubby how to spell every word and how to cook alot. Im so scared to go into a home, So is Ken. Here is my email if you want it. Can you keep me up to date on how you are doing. My husband is my only friend because of this disorder. God be with you in each and every step of your journey I hope that I never forget who God And Jesus is. Thank you for this gift you gave me today, God Bless You my dear, Hugs from my heart, Diane Hill.

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  4. Thank you so much for this video. I was dx'd 4 years ago with Early Onset Dementia, probable Frontal Temporal Dementia. I did a lot of advocating, but slowed way down on that now. You so eloquently described what we need. I really think the way we do with this disease has a lot, even more than just a lot, maybe everything with how we will live with this disease. As you describe and I have seen others function....the caregivers can correct most of the behaviors they find so unbearable if THEY would just change the way they do things...and our environment is such a huge part of this...their body language...and in the correct environment where someone slows down enough to read what we need and provide it makes it so much better for us.
    God bless you...I wish I could just reach out and hug you...thank you.!!!

    I don't know what all these publish choices are so will just have to do anonymous, but you can contact me at tberry9655@msn.com.

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  5. Until we make some tremendous changes in the way we run aged care, it will remain impossible to implement the care recommended here. Aged care facilities run with such limited staff that there is only time for the care of physical needs. Whilever private enterprise is running aged care and needs a profit margin there will be no money for all the extras such as staff who can slow down to meet your emotional and spiritual needs or those meaningful activities which are often supplied from fund raising by staff. Aged care should be solely government run not just government funded. This way those huge profits going into private enterprise coffers could instead be spent on direct care. I believe it is extremely immoral that companies profit from our aged population while underpaid staff work to the point of exhaustion and our elderly are left needing. Private enterprise have such a hold in our aged care system that sadly I don't think we will ever see the much needed changes

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    Replies
    1. You are sooooo right. The care of another person(s) is very difficult--physically & emotionally. This is spoken as an RN & as a daughter of a mother who had Alzheimer's ---I watched the care given with sooooo much love & caring as well as the physical effort required--not just to my mom but to all the patients on the unit. Salaries AND work conditions definately need to be improved.

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  6. Pretty good post. I just stumbled upon your blog and wanted to Say That I Have really enjoyed reading your blog posts!

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  7. Thank you so much for sharing this wonderful message

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