Caregiving Backstage

A Glimpse from Inside Dementia – Part I

Originally published June 9, 2013:

One of the things that one must do in order to sell the books that are written is, well, interact with the public.  Actually, this is not such a bad thing since I am a firm believer that there is backstory (fiction) and research (nonfiction) everywhere you look.  In my case I am becoming aware that people actually want to hear about my experiences and to learn something from them.  Thus, through the endeavors of my husband’s weekly “assistant” and care giving companion, I have ventured back into the world of the spoken as well as the written word.

I am told that dementia is reaching epidemic proportions in our country as well as other parts of the western world.  There is no shortage of information available about the possible whys, the possible treatments, the possible outcomes; well, you get my point.  We are still in the realm of “possible” and not quite at the place of knowing provable practices that prevent or mitigate the disease or of having assurance regarding treatment once the diagnosis is confirmed.  Part of the problem in arriving at definitive causes and treatments is that each and every case is different in some small or great way.  Each person afflicted responds in a different manner and that, in part, is due to the response of the care giver.  Given the job of providing a talk on such a diverse subject, where does one start?

My book, Who I Am Yesterday, records the story of the first year of my adjustments to my husband’s condition.  There were signs before the diagnosis, but the book starts at that point in time when I could no longer hide from the realization that he was no longer the person I had met, fallen in love with, and married.  It is my journey.  It was shared in hopes of providing others some help in finding their own way.  In order to provide meaningful information for people seeking help, my talk had to center around issues I could see as common if not universal to the disorder.

After thinking on it and watching more carefully the relationship that my husband and I now navigate, I was able to arrive at a perspective that seemed useful. My goal would be to convey some sense of what a patient with dementia must contend with so that people sorting through their own path to coping with the disease could do so with understanding.  Such an approach takes some of the stress out of the situation and makes it easier for both the caregiver and the person receiving care.  To me, those critical points were: abstracts, time perception, hallucinations and humor.  This is a rather long presentation for a single blog, so I will make it a multi-part post.  We begin with abstracts.


I would like you to take a few moments and close your eyes.  Think of your most favorite place in the whole world.  Visualize every detail.  Flowers – their color and smell.  Is there sand or dirt or concrete beneath your feet?  Is it warm or cool, sunny, or cloudy?  Is it a building?  Where is it?  What do you smell?  Are you eating something?  What is it?  How does it taste and does it taste like that anywhere else?  Think of every detail you can recall and focus on that for just a moment.  When you have that vision locked with all five senses, open your eyes.  Considering this is a post, the exercise might have a different outcome if you happen to BE in your favorite place.  You will have to do your imagining on the second part.  To avoid confusion I will assume the first scenario.

Now, look around you at the things you can actually reach, touch or smell.  Can you describe the place of your vision using only the objects available to you where you are?  Can you build your mental picture using only the colors, surfaces and lighting in the place you are?  You cannot use “like,” “bigger,” “smaller,” or other comparative adjectives.  In other words, you cannot use phrases such as, “it is red but brighter, deeper than this.”  “It is soft like the carpet but slightly damp and sticks to your feet.”  You can only point, touch, taste or smell.  Can you use what is before you and describe that scene you so vividly saw in your mind?  Not well, or not at all?  Welcome to the world of dementia, a world without abstracts.

This is not a concept we stop and think about even if we do, in some ways, “get it.”  But think about when you ask a person with dementia to go get something, or when you say that you will be traveling to a certain place.  Imagine my conversations when I try to explain I work for a company in Calgary, Alberta and I do the things they need done through the internet connections on my computer.  I’m aware that not everyone works virtually, so how about a conversation where you are trying to explain that you must work in order to provide shelter and food.  One answer I have received is “what rent, why do we have to pay rent?”  In other cases it might be, “yes, we can get that, but we must wait for our retirement checks.”  A mind that has fallen victim to dementia loses the ability to conceptualize the abstract.

Keep in mind this does not mean that a person with dementia cannot visualize.  They can and can do so quite vividly.  The problem is they cannot connect the picture in their mind with the reality around them with any consistency.  The picture is vivid, but the time frame may be different, the location may be different, and the people involved may change.  However vivid the picture, it just doesn’t “connect” with reality.  It is a movie version of the book with several chapters left out or plot lines changed to meet the director’s needs rather than the author’s ideas.

You will have far greater success navigating as a caregiver if you keep this front and center in your mind.  Develop a modified version of charades.  Rather than getting frustrated and aggravated because he or she cannot locate something when you have told them “exactly where it is,” (many, many times) go get it or physically show them where it is.  Avoid pronouns whenever possible unless it is “you” and “me.”  Don’t get concerned if there doesn’t seem to be any understanding about where you are going to get whatever it is accomplished.  Keep things simple and direct.  Address issues without providing unnecessary background or commentary.  Be mindful of a world that no longer provides the ability to compare what you see with what will be or to visualize some future event or condition.  It is no longer possible to discuss finances or work choices or even, “where shall we live” kinds of things beyond the simple “here” or “not here.” Even explaining when something will be delivered or picked up can cause a great deal of confusion.  Focus on the here and now and form your conversations around concrete and present concepts that can be touched, seen, heard, or smelled.

Abstracts have such far reaching implications in how we communicate and how we manage our day to day needs that it really is important to really understand this issue.  What about you?  Are you a caregiver and do you see moments of frustration caused by this type of problem?  Does this point of view make sense when you think about your experience or a situation you have observed?  Love to hear from you; just can’t guarantee your input won’t end up in a talk somewhere along this new road I’ve taken.

Who I Am Yesterday is available on Amazon in paperback and Kindle.  See you next time with Time, the biggest abstract of all.


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