Living With Dementia

The Day My Dream Sank

By Michael Ellenbogen, DAA Advisory Council Member

I have been a very lucky person. I have had the opportunity to own 5 boats in my life time. The last boat I had was about 17 years ago.   I sold it because my wife and I had no time to use it because of our jobs. I really did not have the time again due to our work schedules.

Then came my diagnosis of Alzheimer’s disease (AD) in 2009 at age 49 (after struggling to get a diagnosis for 10 years)  and I was forced to retire. The thought of having a boat never left my mind and I kept looking at boats; but I had the fear that I would decline in another year or two and would no longer be able to control a boat.

I once had great skills and could easily control a twin-engine boat and move it sideways into any position I wanted. That requires lot of knowledge and multitasking. I was fairly sure I would not be able to do that anymore because of my AD. Over the years I kept looking at  boats every chance I could. I just had this dream to buy another one; but I was so afraid of the added limitations that have been placed on me. Then I realized that the two years were now 4 to 6 years and while I did decline it was not as bad as I thought it would be. I guess I am also lucky there, if one could ever look at this disease as lucky!

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Lewy Body Dementia

BY VICKI KAUFMANN

Little people. Children. Small furry animals. Intruders in the house. These are some of the common visual hallucinations that persons diagnosed with dementia with Lewy Bodies (DLB) experience during the course of this very unpredictable disease.

Read more…

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Fighting Alzheimer’s
with a Song and a Prayer

My mom, Frances “Fran” Cooper, was diagnosed with Alzheimer’s in the late 1990s, and for a time nothing seemed to change. But little by little, the disease started to take a big toll on my parents. Eventually, my sisters and I started to provide Mom with companionship and care, taking her on outings and preparing meals for her and Dad.

We all have different ways of reacting to an Alzheimer’s diagnosis. When Mom started to get forgetful and neglected her timeworn habit of writing in her journal or letters to family and friends, I served as her voice. I launched “Jottings by Fran,” a family newsletter for those who cared so deeply about this woman whose life was turned upside down by this progressive disease. I prompted her, asking about her day and about her cares and feelings. It’s a privilege to help give voice to a loved one.

During the Alzheimer’s journey, we were in for a startling surprise: Mom retained her sense of humor and ability to sing and sometimes play the piano, and could voice her deep love of family and reverence for God. What a blessing that turned out to be!

It’s simply not true that Alzheimer’s steals everything. As memories fade, the mind still ponders the wonders of life. The heart still loves intensely. The spirit still worships and prays. And the urge to sing is stronger than ever.

“Fran’s Song: My Mother’s Triumph over Alzheimer’s” by Ron Cooper is a story of hope, prayer, song and one family’s loving devotion to a woman who refused to give in to this terrible disease.

Click for more information on “Fran’s Song.”


“To suggest people cannot live meaningful lives with dementia is a big mistake. I believe it is possible to live a good life even with dementia, with purposeful and personally meaningful engagement.” ~ Kate Swaffer (April 2015)

“I am Richard who seeks to live a purposeful and purpose filled life up to and through my last breath. I am Richard, and I have Alzheimer’s disease.” ~ Richard Taylor (August 2009)

Kate and Richard are two individuals with dementia who became internationally known for their advocacy efforts about LIVING with dementia. They helped co-found the Dementia Alliance International (DAI), an international organization created by and for people living with dementia.

People living with dementia around the world are adamant and vocal about the fact that they can and do live full and meaningful lives with dementia.

 

CORE BELIEFS ~ Dementia Alliance International

  • Well-being (quality of life) with dementia is possible.
  • Everyone has the possibility of having value every day of their lives, no matter what stage of the disease they are in.
  • People with dementia must be included in all decisions affecting them: Nothing About Us, Without Us.
  • People with dementia are role models for each other and should learn from each other.
  • People with dementia and the wider community must focus on what people with the disease CAN do rather than on what they CANNOT do through all stages of the disease.
  • Language must not devalue people with dementia.
  • People with dementia still have capacity.

 

Dementia and Me

Kate Swaffer / November 28, 2015

What the hell happened to my brain
Diagnosed with dementia when I was much too young
My children still at school
A deadly, terminal disease effecting
Memory, thinking, perception, judgment, language and speech

But worse than that, effecting my
Life, family, friendships, my sense of self, my identity
And a bucket load of guilt
Truckloads of stigma, discrimination and isolation
Loss of dreams, and grief
Sadness, disbelief, lost employment

And yet a new purpose of advocacy and activism … read more

 

4 Steps to Take After You’re Diagnosed with Dementia

By Vee Cecil, Wellness Coach & Personal Trainer
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Receiving a diagnosis means big life changes are ahead, but it certainly doesn’t have to be devastating. By taking certain steps, those who’ve been diagnosed with dementia can thrive. Read on for four important steps to address when you find out that you’re living with dementia, including Alzheimer’s disease.

  1. Acknowledge your feelings and take care of your emotional needs. That’s right; just because there are important tasks that must be addressed doesn’t mean you should neglect your emotions. It’s critical to allow yourself to feel the range of emotions that may come up after a diagnosis. These may take the form of anger, denial, or resentment, or even depression. Or you might feel relief that you finally have a reason for the symptoms you’ve been experiencing.

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The Importance of Staying Engaged

May 26, 2015
Jennifer Bute

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Jennifer Bute is a physician who retired when she learned she had dementia. Her website, Glorious Opportunity, provides information about living with dementia from a personal perspective including a 7-minute video about the importance of staying engaged. www.gloriousopportunity.org.

Positive interactions are key to supporting the personhood of those living with dementia. These interactions become truly magical when multiple generations in the family visit; engage their loved one with personalized activities; and surround them with smiles, laughter, and love.

My name is not dementia: people with dementia discuss quality of life indicators

May 26, 2015

People with dementia are feeling increasingly able to speak up and speak out about what they’re going through. This includes the stigma they have experienced and the impact that the diagnosis had on their lives. Much of this began with Alzheimer’s Society’s 2008 report Dementia: out of the shadows. To further this, in 2011 Alzheimer’s Society commissioned research into quality of life in dementia. The report My name is not dementia presents the findings…

People with dementia often feel that dementia becomes the only thing others know about them. But they remain individuals in their own right and dementia is not the most important thing about them. Many are still able to do what they did before despite their life changing and some things becoming increasingly difficult to do.

The ability to lead a fulfilled life doesn’t stop on diagnosis. A good quality of life can be maintained and that is what this report will help us to understand. Many people have given thought to how we measure the quality of our lives. By listening to those who live with dementia, this piece of work begins to bring together what they think is important. Read more at Alzheimers.org.uk.

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