DAI Board member and co host of many peer to peer support groups Maria Turner, diagnosed with younger onset dementia aged 48, presented today with her son Rhys Dalton at the ADI Conference in Chicago. We have many blogs to share, so watch this space... so far, we simply have not had the time!
Congratulations to them both for a truly courageous and candid presentation from a young career woman and her 25 year old son, who along with his fiance Kayla, they are both now her primary care partners. Their speech notes are below, and we will add their ppt slides when we upload the video.
Maria's story
SLIDE 1
Hi! I am Maria Turner and I am so privileged and honored to be here today with my son Rhys!
SLIDE 2
The key messages today are about the impact of receiving a diagnosis of younger onset dementia at the age of 48, and how this has impacted on my son and his fiancé.
SLIDE 3
It has been truly inspirational to see the growth and development of Dementia Alliance International, and to have been a part of that growth. I am very proud that DAI has become the most important global advocacy organisation of, by and for people with dementia…
SLIDE 4
First, I must say that public speaking terrifies me!
I’d be happy to try sky-diving, but put me in front of people, I literally just freeze, so please bear with me.
I am also here today because of two things. Like so many others, I went to Dr Google, and I found Kate Swaffer and DAI, and then through attending an AFTD conference, my precious friendship with the late Susan Suchan. Susan was one of the very first people I met in person at a conference, just a month after my diagnosis.
It was her zest for life, not just a passion, but a deep intense burning for all things good for all. Her attitude & love for life will stay with me forever, and the responsibility she passed on to myself and others in some of our last conversations together.
SLIDE 5
The last thing she said to me was...
“Please stand up and fight for those who cannot and you can not give up. Find your happiness; share it with everyone. Life is to be enjoyed as the gift it was meant to be. There is too much for you to do, and remember, knowledge is only power when you share it.”
SLIDE 6
A little about me - I retired from my work as a registered nurse after 30 years. I have spent my life taking care of others, mostly in a critical care environment, and I am determined to not let my diagnosis change that. I have always been passionate about volunteering ever since I was 8 years old, and am still actively volunteering for the American Red Cross and as a very active board member for Dementia Alliance International.
Although I was diagnosed with FTD in 2016 at the age of 48 and with ALS shortly thereafter, I do live a full and positive life. I host weekly peer-to-peer support groups all over the world for DAI, and I am determined to help those who currently may not have as many resources as those of us who are attending this conference this week.
DAI and I want to see a stronger and more inclusive community by reaching out to those who are recently diagnosed so that we can emphasize the fact that we must plan for and be excited about our own futures even after a diagnosis.
If I can just walk alongside one person and prevent them from having to walk this path alone, I will know that I had a part in breaking down barriers and helping end the stigma a dementia diagnosis can and will bring.
I am here today with my son, Rhys Dalton, and we are going to talk to you about the challenges… and the rewards… of having a parent-child caregiver relationship and about the profound impact that Dementia Alliance International has had on all of our lives.
I am also here today because this is not only my story or Rhys’s story. I want everyone to use our story to improve not just the outcomes for the future of people with dementia, but also improve their quality of life today.
When Rhys came home to the U.S. after college in the U.K., it was a complete shock to him, although he quickly analyzed the situation and began to figure out his role in supporting me.
We soon came to realize that it is really important to find a life outside of dementia.
Rhys, Kayla and I are now “roommates”. We get along the way roommates do…not always in agreement, but always respectful of each other’s talents and contributions.
Although there are some things that they do FOR me, there are more things they do WITH me.
We realise our little family haven’t changed that much as except that they are being responsible for some things which enables me to live my life happily, keep pursuing my hopes & dreams with the goal of taking care of myself and fulfilling my mission to educate others.
Do not let dementia dominate your life.
Never let dementia define you, or who you are.
There are two things I want for you to take away from my presence here today. The first is for carers to become educated in being care partners instead of custodians.
Life doesn’t end with a dementia diagnosis, but a different life just begins.
It’s a life where you often have to make compromises. For examples, as a lifelong nurse who cared for others, it was hard for me to learn to be open about and ask for help.
In spite of any compromises, your different life can be as vital and exciting as YOU choose to make it.
Always remember that.
SLIDE 7
Rhys's story
Hi! I’m Rhys Dalton and I’m Maria’s son. I am 25 years old and will be getting married to my mom’s other “care partner,” Kayla Whitten, in November.
My mum was diagnosed with young onset dementia while I was finishing up my senior year at the University of South Wales in Cardiff UK. As you might imagine, I wasn’t able to come home on the weekends too much, LOL….so I wasn’t really aware of the extent of the problems my Mum was being faced with. I got my degree in aircraft maintenance engineering and I was really looking forward to starting my career in that field as soon as I could after I got back to the states. I was 23 years old at the time and thought I had my life pretty well planned out. I was wrong.
The past two years have been all about learning that life doesn’t always allow you to plan anything out. Kayla and I have spent a lot of time learning everything we can about Mum’s disease in general and about her needs in particular.
People often talk about the “role reversal” that caregivers and loved ones go through, using phrases such as ‘my mum has become my child’ or ‘I have had to become the parent’. As we learned more about what mum WAS able to do, our picture of our roles as “Caregivers” changed dramatically. Now, some of this may be due to my mum’s character...she is VERY determined and believe me, once she sets her mind to something, it gets done.LOL.
Well, she was determined that she WOULD get healthy, despite what her Drs had all told her & and to be positive, so she is EXACTLY that 2 years later, I never doubted her.
It’s not that the diagnosis didn't throw up for a loop that first year because trust me it REALLY did.
There was, and still is, a lot of trial and error about how we live and handle everything from grocery shopping to paying the bills to going away for the weekend. But we have persevered & will perserver with the intention of maintaining a good, healthy, happy and loving relationship.
We have not had the stereotypical experience, that most people expect and we do still feel like Marias son, daughter-in-law, and best friend.
We have fought to keep our roles of parent and adult child separate from dementia, so that we can focus on our love and relationships, rather having them being defined only by dementia.
We define ourselves as we always have, meaning Maria is still my mother and I am still her son, and Kayla is still her daughter in law or will be in days, but who’s counting!!
Dementia entered our world, we didn’t not invite it. It was no one’s choice.
Dementia has simply been the road we have had to go on, so we are dealing with it as positively as possible. One of the keys has been to not treat each other any differently- still act like her children and Maria still be our mother, and treat each other with love and respect.
Though I have taken on many of the physical responsibilities my mother once was able to do, it has never felt like a ’caregiver thing’ – it is just who we are now. We act like roommates, and talk about everything, including dementia, in great depth.
Kayla really treasures the time that she and mum are sharing together. Our relationships have become a lot stronger, and deeper, and in fact, because of dementia, we spend much more time together than we ever did before.
One of the biggest influences on all our lives has been DAI. Life for Mum since joining DAI has been like the difference between night and day. It gives her structure, and enriches her life through intense and very special friendships.
Through DAI, mum has been able to fulfill her goal of helping others by giving her a platform to talk to the newly diagnosed. Her responsibilities as a board member keep her sharp and focused. Peers have taken the place of her patients, and through the support groups, she is still helping so many other people.
DAI has been crucial to understanding that life was not over and there is still much to be done in research and advocacy. DAI has not only been essential to mum, but to Kayla and me as we learn to be partners with my mum in giving her the freedom she needs to live a healthy and productive life. They have become family.
Though I wouldn’t have said so earlier in my life, it helps having a determined, dare I say it stubborn parent, ol
That being said, we are all stubborn in our insistence that life is to be lived to the fullest and we are determined.
SLIDE 8 – SHARED STATEMENT – MARIATO READ THE STATEMENT
Rhys: As Susan taught US all, Life is to be enjoyed as the gift it was meant to be….
MARIA:
"With my son Rhys and his beautiful fiancé Kayla, both living with me, and supporting me to live positively with dementia, we have learned to love more, laugh more often, and show the world that we can all still pursue our hopes and reams, in spite on dementia.”
SLIDE 9
THANK YOU
