A Poem by Norman

Artful Approach, Purple Angels

In preparation for tomorrow’s Lewy Body post, I want to share with you a poem that was written by Norman McNamara who what diagnosed with Lewy Body (Bodies) Dementia at age 50. He is, in addition to the founder of the Purple Angel program, the author of the book, The Lewy Body Soldier

Please do not Mock Us

Do not pity me because i have dementia,
Nor must you mock me because i have lived so long with it,
You would always choose to live well over not doing so, wouldn’t you ?
So why cant i do the same?
Thing is, i have no choice in the matter
I have no idea how i will be on a daily basis,
I cannot make plans for the future
The uncertainty of what the next day brings is unrelenting,
I dont know why i have lived so long with this illness
I dont know why i am still able to do what i do,
But i do the best i can do,, wouldn’t YOU ?
i am sure you would do the same,
My time with my family and friends is precious,
Yes the fear of not knowing hangs over me,
And yet, i carry on, best i can, brave face and all that,
Though I weep when my friends pass away,
Especially those who were diagnosed after me,
The guilt is all consuming and yet, and yet
Here i am, there are you, not that much we can do
Enjoy your lives in the knowledge you are special,
No need to mock me or others who live their lives under this dementia cloud,
We are no different than you, maybe just a little more grateful from day to day

Norrms McNamara

Purple Angels at Work

Purple Angels

I am currently back in Wisconsin, and this weekend while making a trip to Piggly Wiggly, I stood in the checkout line behind a man with dementia. As he was getting ready to pay for his watermelon and pineapple, he struggled to make the correct change and with a tone of embarrassment in his voice,  stated he forgot how to count out his change. The cashier moved closer to him and helped make the correct change needed in a way that I wish we all could learn from. She was patient, transparent, she did not try to demean him, or roll her eyes while he stared at the change in his hand and struggled to figure it out. This Piggly Wiggly location is a Purple Angel. This means that their employees have gone through a training in working with dementia as it relates to a grocery store, and it was beautifully at work that afternoon. We cannot always count on our employees and the employees of the establishments we visit to know instinctively how to serve those with dementia. This woman may have known what to do, and how to engage with this person with dementia without training, but we cannot count on that.  This is why having an organization like the Purple Angel can drastically change our community. It may take some effort, but it is minimal compared to the impact our collective dedication will make. I walked out of that store with my Pellegrino in hand filled with great joy when reflecting the work the PA Ambassadors are doing across the globe. The care this woman took gave me hope that someday the stigma of dementia will be erased, and the level of care for those with dementia and their caregivers will far surpass what it is today. Please, if you own a company, organization, or place of business, consider becoming a Purple Angel. If you work for one of these places, share the program with your boss and invite them to make your workplace a Purple Angel. And if you think you would like to become an Ambassador take the time to discern the role. As always, thank you to those who already have become Purple Angels! Your dedication does make a difference.

If you would like to learn more about this program go to the Purple Angel tab in the top menu bar to read more and to be directed to the Global Purple Angel website. If you have any questions feel free to comment or contact me.

Sunday’s Story-A Sunny Day, History of a Man, Man is Not Alone

Timeslips Story

A TimeSlips story shared with permission.

 

A Sunny Day, History of a Man, Man is Not Alone.

Zero Henry Amos, is going for a walk through the gardens to church, then to the bank to deposit money. He is coming from a nursing home/home out in the county. It is a beautiful, sunny, bright summer Sunday in June. He enjoys walking. He is a little unstable, but independent and able to still go for these walks. He’s an outdoorsman. Overall Zero is a happy, cheerful man who doesn’t act old, but although he is having a good day is a little grumpy right now. He is 50, or 65, or 30. We can’t tell. He is wearing a black hat, gray cardigan, and navy pants.
He doesn’t see the butterfly behind him. He has walked past it so many times it doesn’t register with him that it is there. What a shame! The artist of the butterfly is unknown, but we can tell it was done by a professional, self-taught artist who loves to paint on walls. We wonder if the scale of this butterfly has something to tell us. It sure is beautiful with its yellow, red, blue, green, and purple colors. Sad the man no longer sees it. He lived a good life. Never went to jail. A Packer fan. A teacher at a local high school. He was at that one school his entire career teaching Science, History, and PhyEd. His hobbies include agriculture, hunting, and bowling. He loves Friday Fish and chicken. Did we mention he loves agriculture and he studied at Texas A&M? His whole family loves the outdoors. I wonder if he is thinking of them now. His wife is no longer living, but the rest of his family lives in town. His brothers and sisters. His 4 children. He is a good grandpa. For him, the family is the most important thing. I wonder if he would like a second wife.

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Our Definition

What Is Dementia

To begin, we define.

According to the Mayo Clinic, “Dementia isn’t a specific disease. Instead, dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Though dementia generally involves memory loss, memory loss has different causes. So memory loss alone doesn’t mean you have dementia. Alzheimer’s disease is the most common cause of a progressive dementia in older adults, but there are a number of causes of dementia.”

Merriam-Webster defines dementia as, “ 1: a usually progressive condition (such as Alzheimer’s disease) marked by the development of multiple cognitive deficits (such as memory impairment, aphasia, and the inability to plan and initiate complex behavior) … dementia is diagnosed only when both memory and another cognitive function are each affected severely enough to interfere with a person’s ability to carry out routine daily activities. — The Journal of the American Medical Association 2:  madness, insanity a fanaticism bordering on dementia.”

And the Alzheimer’s Association says this when defining dementia, “Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia.”

When you look at the Alzheimer’s Association website they list the following as types of dementia:

  • Alzheimer’s disease
  • Vascular dementia
  • Dementia with Lewy bodies (DLB)
  • Mixed dementia
  • Parkinson’s disease
  • Frontotemporal dementia
  • Creutzfeldt-Jakob disease
  • Normal pressure hydrocephalus
  • Huntington’s disease
  • Wernicke-Korsakoff Syndrome

“Dementia itself is not a disease – it’s actually caused by lots of different diseases. The word ‘dementia’ is just an umbrella term for the symptoms caused by these diseases such as memory loss, confusion, and personality change. Alzheimer’s disease is the most common cause, but other dementias include vascular dementia, dementia with Lewy bodies and frontotemporal dementia.” – World Health Organization

As we read these definitions, they are blunt, medical, and negative. I am not encouraging us to ignore, or toss out these definitions, but to expand on them. Adding our own definition as it pertains to our experience as a person with dementia, a caregiver, or a loved one. These definitions talk about what a person will lose, but what about what they can still gain? Still achieve? Still give? I know from my work, that those with dementia are still learning, still teaching, are still telling us their stories, and are still helping in service of another. Their dementia does not erase the person they are, it merely places a veil over them that we as caregivers and loved ones need to see through.

As many people there are living with dementia, that is how many journeys, ways of progression, and definitions we can create. We define dementia, but it needs to be a flexible one, one that will change with our experience. I invite you to share with me your definition of dementia.

I also would like to ask you two questions:

1. What do you think what I say the word, “dementia?”

2. What is one thing (or more) that you would like to learn about dementia?

In my opinion, no one can better describe the different types of dementia than Teepa Snow. But over the next month, I will highlight different types of dementia and encourage you to pop in with your comments if you have had experience with one or more types of dementia.

 

 

Dementia | Signs, Symptoms & Diagnosis. (n.d.). Retrieved May 25, 2017, from http://www.alz.org/what-is-dementia.asp

Freitas, J. J. (2015). The dementia concept: understand, connect, engage. Massachusetts: Blue Sail.

Dementia. (2016, April 05). Retrieved May 25, 2017, from http://www.mayoclinic.org/diseases-conditions/dementia/home/ovc-20198502

Dementia. (n.d.). Retrieved May 25, 2017, from https://www.merriam-      webster.com/dictionary/dementia

Her Signature

Personal Story of Dementia

My Grandma Marie’s signature is on everything I do. Well, you can argue that all of my grandparents and parents have their signature on my life as well, but when looking specifically at dementia, it is my Grandma Marie. My grandma had Vascular Dementia and lived with the disease for 6 1/2 years (a diagnosed 6 1/2 years). I always ask myself whenever I am about to develop a program, lead a training,  or sit with someone with dementia, “How would Grandma Marie need me at this moment?” For as many people there are with dementia there are as many forms the disease takes, but with my grandma in mind I am always reminded that this person is not dementia, they have lived a life I do not know and have stories that far exceed what I see before me. With Grandma Marie’s guidance and in remembering her, I have set forth into this work. These “pages” will be filled with stories of my personal experience with dementia, but primarily filled with information that may become a resource for us, to better communicate, care for, and sit with those living with one form of the disease or another. I seek to make sure the voices of those diagnosed with dementia are present, and that this may be your guide through the often difficult journey of dementia.

In April I went to visit an assisted living where I once worked and the phrase Bonae Memoriae fit with all that I was thinking about regarding dementia. It is the working title, and one that I hope becomes a reminder for myself, and you the reader about what I believe to be the current running through dementia work. Of Happy Memory. A person with dementia may not remember what they ate for breakfast, or what they did an hour ago, but they will remember how they felt, and the impressions the individuals around them left. So let’s help them make it a happy one.

Thank you for coming here, reading, and hopefully sharing with me and others your own experiences, thoughts, and questions. As my knowledge of dementia grows, and as we as a society and field learn more about dementia I will make updates to any information that becomes out of date, or no longer best practice. I will share with you resources I use and have come across.  I hope to balance information learned from the lens of the artist, the creative arts therapist, the medical professional, and most importantly the person with dementia.

All of us are living with dementia, and a cure is not certain (at least not in our lifetime), but we can care, we can give, and we can learn from the millions of individuals with the diagnosis of dementia and their caregivers.