The Dementia Connection

Creating Joy & Meaning for the Dementia Patient by Ronda Parsons


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Dementia: Facing the Truth

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When the early stages of dementia begin to present themselves it is a particularly devastating time for the patient and their family. Because symptoms can be so subtle and seem to appear and then vanish, family members often undervalue the severity of the problem. After all they look the same don’t they? There is no visible sign of their disease. And to make matters more confusing there are times when they are perfectly rational and able to function beautifully. This feeds into a family’s collective wishful thinking that none of this is really happening. They tell themselves, ‘We are overreacting. It is just a bad day. Soon things will be back to normal. Maybe this is just a rough patch. They are getting older after all.’ Driven by fear they create a kind of grand illusion that in the final analysis only wastes time, creates conflicts and delays constructive goal setting. Fear in this situation not only blocks us from reality but can place our loved one in jeopardy.

Helplessly watching someone you love slowly change and slip away is unfathomably sad and frightening. Each new symptom is like a punch in the stomach. The slowness of it only adds to your agony and increases your fear of what the future holds. I know this first hand, because I spent nearly ten years looking after my mother-in-law Nan, as she plummeted down through the chasm of this disease.

Fear is an odd and deceptive emotion, a chameleon of sorts. One minute it can appear as anger; the next as frustration. It has a negative impact on our behavior and feelings. When fighting dementia, fear often outruns our patience and taints our common sense, leaving us to march in futile circles around the same mountain again and again. Fear stifles our compassion and constructs insurmountable walls against the truth. Fear clouds our vision leaving us to search in the dark for answers that were in front of us all along.

In order to be effective in any sorrowful situation, we must face things as they really are, accept what we know to be true and keep moving forward one step at a time. Don’t feel defeated if you have spent too long consumed with worry for your loved one. It is never too late to work through your fears and quiet the negative voices that play in your mind. By sharing my experiences I hope to show you how to move forward in this process. I want to encourage you to offer yourself the same patience and compassion that you shower on your loved one. For it was only when I stopped being afraid of Nan’s future and how it was going to impact me, that I was able to accept her prognosis and open my eyes to the many blessing still present in her life.

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The Real Truth Behind Caring for a Dementia Patient

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When someone you love dies you miss all the elements that make them unique – their quick wit and depth of spirit or their wicked sense of humor. You miss seeing their smile, holding their hand, or looking into their eyes. You miss every element that encompasses the totality of their person, both physically and emotionally. And for a long time, even after they are buried, your subconscious continues to search for them. Everywhere you go, there is a part of you that hopes that they will turn up and it was all just an awful practical joke, a great mistake.

I cannot count how many times after I lost my father that I thought I saw him on a street or in a crowd. A fierce flash of longing would overtake me until an unfamiliar gentleman would turn and show his face, leaving me bewildered and swallowing hard to push down the lump in my throat.

This is very similar to what it is like to be with a dementia patient every day. You see them sitting in a chair looking much the same as they always have and your heart leaps, thankful just to be able to spend time with them. And yet again that glimmer of hope pushes up from your heart. Maybe, just maybe, things aren’t what they seem. But soon, before you know it, an odd remark or unnatural gesture pulls you backward and reminds you that they have indeed changed. This momentary hope only makes the reckoning all the harder and the path forward a steeper climb. It is like a wound that is never permitted to completely heal.

I wish I had a way to spare you the highs and lows of the acceptance process. I wish that I could catapult you past the pain and make you see the happiness that is possible even in the light of all that you are facing. But I know that this is impossible. So instead, I will work each day to offer you the lessons that I have learned along my journey and hopefully they will make a difference.

Dealing with my mother-in-law’s mental decline has been a balancing act of epic proportions. While grieving the loss of her personality, I have worked tirelessly to celebrate the continuation of her physical life. Over time I have learned to see those rare moments when her old personality peeks through, not as evidence of her restoral, but instead as the fuel I need to keep moving forward. Those moments motivate me to work even harder to keep the connection alive. They have become the joys that have helped me overcome my frustrations. By being honest about her prognosis and dissecting my feelings as a caregiver, I have been able to direct my energies in a positive direction. By accepting her situation, I have braced myself for what I know lies ahead. By deciding to drink in every minute of our long good-bye, I’ve created a new hope that our journey will continue for a long time to come.


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MIDWEST BOOK REVIEW

Creating Joy & Meaning for the Dementia Patient 

Author: Ronda Parsons

Published by:

Rowman & Littlefield

ISBN: 9781442227552

Creating Joy & Meaning for the Dementia Patient offers a positive new approach to handling dementia patients and stems from the author’s ten years of experience. It’s designed to help fellow caregivers understand the stages of dementia and how to create connections and positive experiences through them all.

This guide is highly recommended for caregivers and professionals who deal with dementia and Alzheimer’s patients on a daily basis. Where other guides may talk about communication and management, this book reaches beyond these subjects and addresses the fundamentals of life – joy and meaning – and emphasizes patient individuality; not a ‘one size fits all’ program.

Chapters empower caregivers by exploring their key roles in defining and imparting this sense of meaning and joy in everyday interactions, and they outline the types of experiences that lend to not just better understanding, but alternative ways of interaction that achieve better, more positive results for everyone.

In many ways Creating Joy & Meaning for the Dementia Patient fills in the gaps created by similar-sounding books by discussing the complications of memory changes and the psychological reactions of patients and caregivers during the process. Each chapter concludes with tangible insights, communication tips that emphasize flexibility and understanding, and approaches that lend dignity and joy into every encounter.

Compelling and satisfyingly specific, Creating Joy & Meaning for the Dementia Patient offers what few others have achieved: a sense of renewed purpose and concrete approaches that go beyond ‘handling’ and move into areas of positive experiences for all involved.

*D. Donovan, Senior Reviewer, Midwest Book Review


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When is it Time for Mom & Dad to Leave Their Home?

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Recently I set up a Google-alert so that I would be informed each time that an article about dementia or Alzheimer’s disease was circulated on the internet. Yes, I’ve seen articles on breakthrough drugs focusing on the hope that soon this dreadful disease will be eradicated, and others touting the importance of diet and exercise. But I have also seen countless essays encouraging you to keep your loved one at home long after they have been diagnosed with dementia. My fear is that they are gaining popularity at the expense of well-being.

Granted, in a perfect world this is exactly what we would wish for ourselves and our loved one, but I think that it sends the wrong message to insist that it is possible at all stages of this disease. As you know I was the primary care coordinator for my mother-in-law for 10 years, so I know a bit about how this disease works. In my opinion many of these articles leave out a critical component – an honest assessment regarding the cognitive deterioration of your loved one.

In the early stages it is possible to hire a ‘helper’ from an outside company who will come to the patients home, do light chores, keep them company, and basically look after their daily needs. However, it is important to note that most companies will not allow their employees to administer medications, which I found was a primary area of confusion for my mother-in-law, even in the early stages of the disease. The fear that Nan was not taking her medication properly was probably the greatest source of concern for her entire family. Although a hired aide is able to monitor a patient’s physical safety, the consequences of un-monitored drug administration can be incredibly perilous.

I suggest that instead of dreading the day when our parents need the care of an assisted living or nursing facility, we choose to make wise and informed choices regarding their need for additional care. This is no time to be overly emotional. In order to protect the overall safety of your parents, you have to put your feelings of sadness aside and if necessary, place them in a safe environment.

And here is another important consideration – the socialization factor. Studies have shown that patients who are engaged in multiple social activities tend to remain engaged and connected longer. Memory facilities offer interactions that are difficult to create in a home environment where many caregivers plop their loved one in front of the television set.

I know that these words are hard to read and even harder to implement. But I am challenging you to stand back, put your emotions on the shelf, and truly consider what is in the best interest of your loved one.


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Goodreads Book Giveaway

If you’d like to win one of two autographed copies of my book, now is your chance. Just click on the link below or check out my book ‘Creating Joy & Meaning for the Dementia Patient’ on Goodreads. You have until the end of June to enter the drawing!

Creating Joy - High Res. Cover

https://www.goodreads.com/giveaway/show/140626-creating-joy-and-meaning-for-the-dementia-patient-a-caregiver-s-guide-t


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Creating Joy & Meaning for the Dementia Patient

I am pleased to announce the publication of my book Creating Joy & Meaning for the Dementia Patient by Rowman and Littlefield Publishing. It offers a positive and innovative approach to dementia care. As the disease progresses, the patient’s world grows smaller and smaller. Time for them no longer consists of weeks, days, or even hours. Eventually their cognitive life is reduced to small increments of time, mere moments of memory. By understanding this and seeing the world through the eyes of a sufferer, the caregiver is better able to create an environment of mutual joy and contentment.

Based on ten years of caregiving experience, the techniques offered here honor the patient’s individuality, interests, and previous accomplishments. This approach is fresh and inspirational, and recounts a personal journey filled with relatable experiences that readers will find uplifting and brimming with hope. But most importantly, it honors the unique individual that still resides deep inside every dementia patient by offering techniques enabling them to continue to experience the simple joys of everyday life.

To purchase please click:

http://www.amazon.com/Creating-Joy-Meaning-Dementia-Patient/dp/1442227559


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Honorable Mention at the 2015 New York Book Festival

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It is with great joy that I announce that my book,

Creating Joy & Meaning for the Dementia Patient,

has received an Honorable Mention at the 2015 New York Book Festival!