This Christmas weekend, we want to thank Patti Barr Hagadorn, who was diagnosed with Early Onset Dementia (EOD) a few years ago, for being a major contributor to this blog. Patti, who we first met in 2019, was writing a column for the Fort Wayne Sentinel, a well-known Indiana newspaper in America's Heartland, and used that column to document her descent into the dark world of dementia. She continues to be a friend and supporter of Connelly Law Offices and the work we do here - not only for our elder law services but also for the support and advocacy that Attorney Connelly and his staff give to those with Alzheimer's and other forms of dementia and those organizations and individuals who work with them.
"Shortly after meeting Patti, she became increasingly plagued by the progressive symptoms of her EOD and sundowner's syndrome," stated certified elder law Attorney RJ Connelly III. "She no longer had the vigor to put her thoughts to paper but then an illness affected her daughter and her frustration with what she was witnessing in our health care system pushed her to once again muster up the strength to provide readers with her insight and we are glad she did."
In Patti's latest column, she writes about a medical appointment she attended with her husband Jim recently and her exasperation with the doctor who seemed to ignore her and only addressed his questions to Jim. For Patti, this was the ultimate in disrespect and felt like she was being treated like a child who was unable to speak for herself. Patti immediately documented this event in an essay to share with others.
Some days are good, some days are bad. The bad days usually involve doctors’ appointments. It seems as if I become invisible sitting there in the chair, overlooked and ignored to the point of being insulted. Maybe because I have dementia, they don’t listen to me, and maybe you’ve had this experience. One recent incident, in particular, hurt me.
"It seems as if I become invisible sitting there in the chair, overlooked and ignored to the point of being insulted. Maybe because I have dementia, they don't listen to me... --- Patti Barr Hagadorn
There’s one particular doctor who will completely ignore me. When my husband and I are in the office with him, he will not talk to me alone because he doesn’t think I’ll be able to tell him what’s going on in my life. I approached him a couple of months ago with a problem we were having with my prescription. It was causing me to have tremors and I was diagnosed with tardive dyskinesia as a result of taking this particular medicine.
As I tried to explain my concerns to him, he would not look at me, he did not acknowledge me, he just spoke only with my husband Jim! I raised my hand and tried to get his attention that way in order to be able to speak with him. I got the one moment please finger, and he was chatting with his nurse, chatting with Jim but never acknowledged me. I decided just to talk to myself so I said that I was going to have baby elephant twins, mind you in three weeks, and I wanted to know if he wanted to be there at the birth.
Yet again I got the one moment please finger as he continued to talk to Jim and his nurse and refer to his computer. As he was speaking with Jim, I decided to turn my attention to that conversation because I knew I was never going to be allowed to speak. Jim told him how this medicine had made me very, very ill, and I had not slept in one week. I shook so badly it kept Jim awake.
As we were leaving the appointment, I looked at the doctor and I said, “You promise you will never ever prescribe that medication again.” He looked at me and said, “I promise you, ma’am, I will never prescribe that medicine again.” Jim went to the pharmacy to pick up my prescriptions, brought them home, and began to fill my daily and nightly pill containers. As he was doing so, he noticed a pill that looked familiar. He looked at the bottle and found out that it was trazodone, the medicine that had made me so very, very ill.
I was furious! Not being acknowledged was bad enough, however, the fact that he did prescribe that medicine and not listen to Jim, either, made my blood boil! It was too late in the day to do anything about it, but the very next morning, I woke up, called the group of doctors that he is associated with and I fired him!
I am not the kind of person to do these things but I had to watch out for my health. If Jim wouldn’t have noticed those pills, I would have taken them and become very ill yet again. So now my chart is flagged at the pharmacy to be watchful if this pill is ever prescribed again.
If you are in my situation and have been diagnosed with early-onset dementia, I beseech you to please take someone to your doctor’s appointment with you and make sure that you are listened to and the doctor acknowledges you and that you feel like you were heard! Please have someone in your corner. Jim is in my corner and he takes such good care of me! I don’t know what I would do without him. I pray that everybody in this situation has someone there to protect them, their rights as a patient, and their rights to live a good life!"
A Matter of Trust
"Patti's utter frustration can be felt in the words she penned," said Attorney Connelly. "When we feel sick or know something is not working for us medically, we visit our health care provider with the trust that they will help us solve the problem. But what if we feel that trust isn't returned? Or they look past us like they did with Patti, or even worse, having dementia and already struggling to communicate and being treated as if you don't even exist? What do you do?"
"Patti describes something that I see more than I want to -- because someone with dementia is struggling to communicate verbally, they are treated as if they no longer have anything to contribute," said Attorney Connelly. "But as we see with Patti's writing, her ability to convey her thoughts in a cogent manner on paper still exists. People with Alzheimer's or other types of dementia continue to be a valuable part of our society, with many of them continuing to possess the wisdom and ability to advocate for themselves in the early stages of this disease or even beyond."
Sadly, the vast majority of people don't understand the disease nor do they know how to communicate with someone with dementia. It has been suggested that this is the result of a societal view that those suffering from the condition have lost all abilities to think, reason, and communicate -- a stereotype that is perpetuated by media and societal beliefs.
In a piece of research done by BMC Geriatrics, they reviewed cultural expectations and media representations of those with dementia. They found that "depictions of dementia in popular culture are associated with negative images and feelings, and social distance between people with dementia and those without. These correspond to dementia stigma in the public and as experienced by people with dementia." In other words, nearly all media portrayals of those who are very old or suffer from dementia are negative which contributes to the stereotype that old age and its conditions equal an unproductive and dependent group of people.
"Just like others who have special needs, those with dementia have the right to be able to communicate their wants, needs, and fears to receptive ears and minds," said Attorney Connelly. "After all, who knows what is needed individually and as a group more than those who are afflicted with this condition?"
"Just like others who have special needs, those with dementia have the right to be able to communicate their wants, needs, and fears to receptive ears and minds..." --- Attorney RJ Connelly III
"I carry this belief over into my practice. When I meet with families who have a loved one newly diagnosed with Alzheimer's or another dementia, I tell them that now is the time to develop an comprehensive estate plan with them while they still have a voice in their own journey," Connelly emphatically stated. "If done early, when they reach the point where they can no longer advocate for themselves, their wants, needs and desires will then live on for them in the plan they developed for themselves, and not left to others or the state to decide what is best for them."
They Do Know Best
"Patti is one of the rare people who once diagnosed, decided to take control of her situation and advocate for herself and others with a newspaper column and by contributing to our blog," stated Connelly. "But for many with dementia, once their symptoms become apparent to others, their voices would have already been quieted as the disease took their ability to form words and communicate with us. They will no longer be able to advocate for themselves and their own basic needs. Thankfully, for them, their are people and organizations that have their best interests at heart."
One of those advocacy organizations is called "Best Friends Approach", founded by David Troxel MPH, an internationally known expert in Alzheimer’s disease and memory care, and Virginia Bell, MSW who has lectured widely on dementia care nationally and in more than 30 countries including 27 Alzheimer’s Disease International Conferences. They developed a "Dementia Bills of Rights" using a "Best Friends Approach" that suggests what a person with dementia needs most of all is a friend, a “Best Friend.” This can be a family member, friend, or staff member who empathizes with their situation, remains loving and positive, and is dedicated to helping the person feel safe, secure, and valued. Given that, below is their "Dementia Bill of Rights":
Every person diagnosed with Alzheimer’s disease or other dementia deserves:
To be informed of one’s diagnosis.
To have appropriate, ongoing medical care.
To be treated as an adult, listened to, and afforded respect for one’s feelings and point of view.
To be with individuals who know one’s life story, including cultural and spiritual traditions.
To experience meaningful engagement throughout the day.
To live in a safe and stimulating environment.
To be outdoors on a regular basis.
To be free from psychotropic medications whenever possible.
To have welcomed physical contact, including hugging, caressing, and handholding.
To be an advocate for oneself and others.
To be part of a local, global, or online community.
To have care partners well trained in dementia care.
"We should all be proud of Patti and other's like her for having the courage to advocate for themselves and others with dementia," said Attorney Connelly. "When interacting with anyone, but especially those with dementia, we need to be respectful and honoring of them, and not speak to them as if they are a child or even more devastating, look right past them. How you choose to communicate with someone who's living with dementia can go a long way toward giving them the dignity they have earned and continue to deserve."