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!
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.
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.
4 Steps to Take After You’re Diagnosed with Dementia
By Vee Cecil, Wellness Coach & Personal Trainer
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.
- 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.
The Importance of Staying Engaged
May 26, 2015
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.