DAI member Christine Thelker from Canada presented on Day 2 of the ADI Conference in Chicago recently, opening the proceedings for that day. Her speech was incredibly powerful, and we are proud to be able to highlight it here, with the recording and her full speech notes. Thank you Christine for allowing us to share it; we are all very proud of you, and extremely thankful for your passionae advocacy for our rights, for better services and support, and for everyone to truly work together. The issue of living alone with dementia was also coveredwell,and it is such an important one.
Stigma - A Mark of Disgrace
I didn’t ask to have dementia. I didn’t get to choose if I want to live with it or not.
But, YOU have a choice about how to respond to me and my illness. I want to live in a world free from the stigma of you misunderstanding my truth.
Initial reactions to dementia
When you have Dementia, most friends and family don’t want to know, they don’t ask, they don’t want to see. Immediately the picture is formed in their head of someone sitting in a facility staring into space, drooling. You’ve seen the pictures many times. I still remember the conversation with family, about whether it was a good idea or not to let people know of my diagnosis. What ???
It’s better not tell the kids, they won’t understand, it will scare them. Don’t tell the adults, they might be embarrassed - Right!!!
The effects of the stigma start the minute you get the diagnosis. What is amazing to me is when someone is struck with another serious illness like MS, Kidney Disease, everyone is notified, the troops are called in to help ensure everything that can be done is done. So why does Dementia not warrant the same response?
You have friends who say “Oh don’t worry about it, it happens to me all the time.” What is happening to me is NOT happening to them!
Other people think they alreadyunderstand everything so when you try to explain what’s going on you get “I know all about it”.
One of my nursing friends said she knows and gets it because she’s worked in nursing for years so no one has to explain to her. I looked at her in disbelief and told her she didn’t have a clue. Such people act un-teachable.
The stigma also means you are no longer included in the planning of events. Or, if like myself, you were always the designated planner, now trying to orchestrate an event becomes difficult, not because of your own limitations, but because others immediately perceive your abilities are now non-existent.
A case in point: during my working career and every year since I have organized an annual luncheon for a group of nurses and other professionals in the Health Care Field. This year we had an invitation list of 248 people. Up to now I have always done all the planning and organizing on my own, this time I asked a friend to help, because I get fatigued more quickly and my eroded self-confidence makes me feel like I shouldn’t be doing these things on my own anymore.
Even though both our phone numbers were on the notice, mine listed first, all of the people who in past years have contacted me directly to RSVP now bypassed me and reported to my friend. Without them having to say it, it was because they were not comfortable with my Dementia or having a conversation with me. These were all people who should know better but only 5 or 6 actually did.
Recently a friend said that it really hit her in how others were reacting towards me. They ask how I am instead of visiting with me directly. They ask with pity, “Does she still know who you are?” When she suggested they go see me they made it clear they were not comfortable doing that. I told her they don’t realize I understand exactly what they are doing and why, but that doesn’t make it any easier to take. She said in her conversations she could tell the people who were asking about me, the person, versus me, the Dementia Patient. She said the difference was so obvious it sickened her.
Some of my friends and family have fallen by the way-side because of their own lack of knowledge and willingness to sit down and ask me what a day is like for me.
They not only hurt me because they have this view of what it means to have Dementia, it hurts them because they are missing out on some very special times with me.
They are afraid, but they are afraid because of my Dementia, what they hear and are led to believe. They don’t see me anymore, they see my disease and I feel it each and every time it happens.
It’s heartbreaking to know that even those closest to me are forming opinions and walking away from years of relationships
People with dementia: self-advocates
It is in part the responsibility of the person diagnosed with Dementia to advocate and educate, talk about and learn about their illness. It is equally the responsibility of their family and friends to learn all they can to ensure their loved one can live their best life. Without people living with Dementia being willing to step up and advocate and work with organizations, none of them could exist.
Health care professionals
The medical profession has a lot to learn as well.
On a recent visit to the emergency room I told the nurses I was having a TIA and had been instructed by my specialist to go to ER for monitoring at such a time. The nurses said they didn’t believe that was happening to me. They then went around the corner as though I wouldn’t be able to hear and decided I was likely confused by my dementia and really couldn’t know if I was having a TIA. I wanted to get out of bed and hit someone I was so upset. I was left unattended for hours, finally realized they were not taking me seriously and went home to live through it on my own.
I worked for our Provincial Health Authority for 13 years in Dementia Care. I sought out my own specialized training that was current and up to date. Many of my colleagues respected my advocating for the patients. Yet the day my diagnosis was handed to me the ‘powers that be’ said, “forget about your job…you’re done”. No one was willing to assess my abilities and see how my position could be revamped to allow me to continue working.
Telling us to go home and die…
The doctors tell me to ‘live your life while you can and get your affairs in order’. I am grateful for that piece of advice, however, statements like that take away a patient’s hope; it is a stigma that is perpetuated by the medical community who should be there to offer support. Lack of hope, at some time, effects every single person living with the illness. We need to educate the medical community to provide support from diagnosis onwards. Yes, they must be truthful about our illness but they can be honest without taking away hope. This will go a long way to help end the stigma around the illness.
YOUNGER ONSET DEMENTIA AND DISCRIMINATION
The importance of education and incidence of DISCRIMINATION is highlighted by a phone call I received about a year later, from the very people I worked for in the medical community.
“Because of your vast knowledge and skills working with Dementia Clients, would you volunteer your time to help our clients and staff?”
WHAT????
Yup there it is … an absolute insult. I’m not fit to work because of my dementia but I should give my knowledge away to the very people who turned their backs on me.
I am not working because of the deep-rooted stigma and entrenched discrimination that surrounds dementia even in the medical pofession, and also most other employers.
I still feel sick about a recent statement made by a bright young woman who is taking a care aid course. She was preparing to go out on her first Practicum when I enquired if she would be working with Dementia Clients.
She made this statement:
“Yes, but it won’t be a big deal because I’ve learned that people with dementia have brains that are shrivelling up and what I do doesn’t matter because they won’t know or won’t remember.”
This statement is not the fault of this young person but does show the lack of understanding and knowledge even our current medical teachers have. We desperately need more education on all levels to help the health care community realize dementia is not the person.
But this continued and all too common ignorance deepens the stigma and discrimination towards all people with dementia.
RE-INVENTING THE WHEEL 4 CHANGE
I don’t believe in re-inventing the wheel, I do believe sometimes the whole wheel needs to bereplaced.
The medical profession has to start listening to those who have Dementia for they are their best teachers. They can and should have a voice in all curriculum used and how it is taught throughout the medical profession.
Then there are the organizations who profess to help us.At one of my first coffee get togethers hosted by a lady from the Alzheimer’s Society I sat in a room with 6 other people battling dementia. She gave us rules for how the coffee time shouldgo and regulated our conversation. I asked one of the men what type of Dementia he had. I was immediately told that that was not an appropriate question and the doctors no longer tell patients what type of Dementia they have, just that they have Dementia or Alzheimer’s. I know this is false, because my doctor has been very good at keeping me informed about my particular diagnosis.
During one of our latercoffee meetings an old gentleman who hadn’t been responding turned to me and said, "I’m fascinated by you”. I laughed insurprise. Then he said, “I’ll talk to you!”
So, the dialogue began. He opened up about trying to come to terms with his dementia diagnosis. By me accepting and listening to his verbal and non-verbal cues, he found the ability to voice what he was feeling.
Because of the facilitators lack of training she was trying to run the coffee time as though it was a professional meeting and left this man out.
I also did an interview for CBC Canada at a local radio station and a bit later they created a web story about me. Someone atCBC contacted the Alzheimer’s Society to get their reaction to my interview. I had clearly stated I would not go into a care facility because they don’t promote quality of life. Her response to my opinion was to completely try to negate my perception by stating “It’s Not That Bad!” (It is! I worked in those facilities and know them too well.) When I emailed her to let her know how I felt, knowing that she had never worked or stayed in one so had no authority to make the statements she did, she did not respond.
Instead I received an email from one of her peers explaining to me how much the Alzheimer’s Society does for Dementia.
She gave me the script they give to everyone. I responded to her about the lack of willingness to even converse about the incident and I have never heard anything more.
Again, trying to bridge between the work we do and the Alzheimer’s Society does, I reached out to see how we could help each other. I told them of my speaking here today, and our fundraising efforts to help make it possible. I was told that they would not help because they want the money they raise for themselves. WHAT!!!
WE NEED A COMMON GOAL
And here I believed we had the common goal of helping people with Dementia live better.
I continue to reach out to try to work with them for the common good but I can tell you it is really difficult.
These kinds of incidents are perpetuating the stigma and causing isolation.
Other organizations are seeking funds and deciding how and what the funds are being used for under the auspiceof it being for the Dementia Clients without any input from the clients themselves. This perpetuates the agendaof the peoplemaking the decisions and has little or nothing to do with us the actual peopleliving with the disease.
LIVING ALONE WITH DEMENTIA
Is a widely untouched but very real reality for many of us. we often hear how we : shouldn’t be living alone, can’t live alone” another perception that creates more stigma. Living alone means we have to work harder to ensure we are one step ahead of our illness. Living alone provides me with the ability to make choices for myself, without having to have a caregiver who wants to help but inevitably takes away my abilities.
I also am forced to use my brain, because I cannot become dependant on any one else to catch or ensure mistakes aren’t made. It is essential we find tools and ways to stay independent from using Technology ( Alexa), to help us with reminders and appointments, to meal planning and preparing and safety issues. ( I have a life line that is good anywhere in Canada with a build in GPS). Isolation is a bigger risk factor. Staying connected with others, (for me it is with Dementia Alliance International), who together we collectively check in on each other, the education and support groups are a life saving tool for someone who is alone. It was life saving for me.
I would like to bring to your attention to DAI and its members who work to help people living with Dementia, fight the stigma by writing blogs, doing webinars and holding on-line support groups. We do this with no staff and little to no funds from any of the organizations proclaiming to support Dementia.
DAI is an under utilized Organization by all other Organizations. This has to change.
From all over the world I receive these kinds of comments on a regular basis:
Thank you Christine, you are the voice I need to hear. MB
Christine you are an eloquent writer, you invite us every day into your intimate space. We laugh, cry, grieve, and wow with you. For me your daily journaling has only made me a better caregiver. I use what you teach me to reach my clients, meet them where they are; I listen, participate, and dance. Thank you. C.F
Your blogging is helping so many people now & in the future. You are a blessing to humankind! A.P.
So in closing I would like to thank ADI for the opportunity to open today’s proceedings, it is an privilege and honour. Also thank you to my DAI family for being my beacon of light through my darkest hours, you truly saved my life. So today I ask you to help change the stigma by changing the way diagnosis is delivered, change it from there’s nothing we can do to “ here’s a nutrition & lifestyle plan, here is DAI, an organization that can offer support, education to you, and here is the information for organizations to help your loved ones.
Leave the stigma behind.
Help us Provide the Hope
Help us thrive.
THANK YOU
SEE THE PERSON NOT THE DEMENTIA
Copyright: Christine Thelker 2018