Meet Richard Taylor, a Person Living with the Symptoms of Dementia (and Writing about It!)

Richard Taylor:

Richard_TaylorMany physicians have told me “Richard, you have dementia, probably of the Alzheimer’s type.” For many years I believed them. I let many of the stigmas associated with the label Alzheimer’s disease eat up my time and energy and feelings, and frankly eat up parts of my mind and heart and myself.

After listening to hundreds of people living with a diagnosis of this or that type of dementia; after listening to hundreds of “dementia experts;” after listening to myself – I have come to see my cognitive disabilities (I forget more than others, I am easily confused, I have little sense of what I am going to say because my ability to recall and organize my thoughts has seemingly slipped away) not as a disease, but as a natural occurrence of growing older. After considerable effort trying to understand what it is I actually have, I have come to the conclusion that I am simply growing older every day. I am the same as everyone else my age, and I am different from everyone my age. I am more similar to some than others, but I am unique to all human beings as they are unique to me and each other.

Yes I have more of some things in my spinal fluid than others. Yes I probably have more amyloid plaques and tau protein in my brain than others. But many of the Nuns in the famous “Nuns study” and many folks in the most recent large sampling of brain cross sections had more than I will probably have, yet they had no symptoms of dementia.

So what is it I have? I have me. I have the consequences of the food I ate, the air I inhaled, the parents who created me, the schools I attended, the culture I grew up in, and most of all the number of days I have lived.

I believe our brains are way behind evolving to meet our needs as a 70 year old person. Some brains are better at coping with this fact than others. All brains are still expecting life expectancies in the 30-50 year range. They haven’t caught up (evolved fast enough) with the fact they are going to have to function an additional 20-30 years more. They are stressed as are our hearts, kidneys, bones, joints, hair, teeth, eyes, prostates (for males), etc. Each of these parts of us copes with this stress as best they can. Some break down, some break, others fall out, some become misshapen, and some grow larger for no apparent reason. And, this happens unevenly across any age group.

Some folks don’t seem to grow older after this or that age, while others seem older than their age. Some seem to slow down aging’s effects through physical and mental exercise, through better eating habits, through yoga, more education, palates, meditation, plastic surgery, positive thoughts, coconut oil – and the list goes on and on.

The brain in its own unique way copes with growing older. The language of thought seems to slow down a tad to a lot. The management functions seem to not only to slow down, but sometimes they produce confusing and confused conclusions.

There are clearer and clearer indicators for some of the forms of dementia. All the forms are not caused by aging, in fact there are probably more multilayered, multi-interacting, sensitive to genetics, genetic changes, the environment, and so on and so on. Growing old is complicated. Growing really old is even more complicated.

My stars we are looking an molecules right now in our search for the magic bullet that causes Alzheimer’s disease. Add to all this complicated cause and effect/interaction our brain tries its best to cope with the results of the strains that are placed upon it. So we each grow old in a manner slightly but importantly unique to each other and we each cope with this process in our own slightly but importantly unique to each other ways.

Is there a single cause for all this stress/change/adaptation—NO. Will there ever be a single pill, shot, drink to reverse, halt or prevent all this aging—NO! Are we still spending billions of hours, dollars, and efforts looking for the contents of the holy grail of growing older? YES.

What a waste of time, energy, and money—multiplied by the fact there is a finite amount we are willing to invest in the understanding of this phenomena. When we dump everything into the bottomless cure research pot we end up building extravagant carts while the horses deteriorate awaiting for the magical carriage to carry them to The Magic Kingdom where on one grows old.

I am still and will always be Richard. I am still a whole human being, as is everyone on the planet. We will all continue to be the same in this sense until about two minutes after we all draw our last breath. In a sense we will all ultimately continue to be the same, dead!

Must we be crowded into boxes, with stages and sub-labels etched on our foreheads and medical charts in order to make it easier for you to understand us, study us, relate to us? I think not. Stop thinking about a guy’s name who lived a hundred years ago. Close your donation check book.

Open your minds and hearts up to those around you who are showing signs of what seems to happen to most of us as we celebrate more and more birthdays. We all grow older. We all need enabling support. We all need an evolving sense of purpose. We all need to meet all the needs we needed to meet when we were babes in someone’s arms, children living in a village with a family, and onward through the stages of living.

Richard

“The single biggest problem in communication is the illusion that it has taken place.”
- George Bernard Shaw

Learn more at Richard Taylor’s website, click here.

Margo Karsten Partners with Baylor Health Care System

Baylor logo
Baylor Health Care System’s Center for Learning and Innovation and Practice is hard at work creating free eLearning modules on topics related to geriatrics. I have had the opportunity to partner with them on the following modules related to dementia:

  • Dementia Strategies: How to find out about someone without asking questions
  • Dementia Strategies: The Care Card and Wrap Around Care
  • Dementia Strategies: Three techniques to reduce agitation and anxiety in patients
  • Dementia Strategies: Using the ping-pong technique

To view the modules, go to www.bhcsclip.org  and click on “Online Learning.” Once there, you will have to create an account and you’ll be able to access all the modules. (Look for modules that feature Margo Karsten.)

Enjoy this free resource!

Wisconsin Takes Innovative Steps to Increase Dementia Awareness

Memory cafe

This is one of the most inspiring things I’ve seen in a long time. As the numbers of people with dementia increase, creative caregivers are looking for and finding brilliant solutions for including and accommodating people with dementia rather than isolating them!

To read the article, click here.

Our colleague in Watertown has been an bold, appreciative leader on this front:

“I just want to add how proud I am of Watertown for going forward with this. We have several businesses who have already set up training for their employees and are excited about how they can help increase dementia awareness and a number who have pledged to become dementia aware. The response to this has been overwhelming, across Wisconsin and from other states. This lets me know that people are looking for support and tools to have this conversation grow. It is all so exciting.” 

Jan Zimmerman, RN,
Administrator/Director of Nursing of Assisted Living at Heritage Homes.

The Psychology of Kindness…in EVERY Place

It turns out that compassion for others and compassion for self are not just a nice idea. There’s new science that proves they lighten our load.

“Jay Narayanan points to a clever experiment showing that grudge-holders perceived a hill as steeper than did people who had been asked to recall a time they’d forgiven someone…”

The work of those caring for people with dementia is endlessly challenging. As you read the following article, keep in mind that a method of caring for people with dementia that reduces stress for everyone involved, is going to do a lot to keep caregivers fresh, engaged, and grounded in the beauty of the valuable service they provide.

Link to the article:

The Psychology of Kindness in the Workplace
Scholars explain why a culture of caring and compassion must be cultivated.

Don’t Call My Mom Demented

I remember it like it was yesterday. My mom was sitting in the living room, my children watching TV, Dad reading the newspaper, and me on the laptop. Out of the blue, my mom looked up from the paper and said, “Now why are they advertising ‘after Christmas’ sales when we just had Thanksgiving!?” The room went silent; my kids looked at me with such puzzled faces….we had just celebrated Christmas the day before. The tree was up, the presents unwrapped, and Granny couldn’t remember what happened yesterday.

I calmly looked at her and said “Mom, we just had Christmas, remember?” Her stare back at me was one of confusion, embarrassment, and fear. She escaped back into the newspaper, hoping that no one would notice.

From that visit on, I paid close attention to her comments and her expressions. After very little observation, it was becoming clear to me that my mom was showing signs of Dementia.

Dementia. I didn’t even like that word.

Dementia seemed like a negative label, and I could see a future where that ugly label was being placed on my mom, a woman filled with dignity and grace—a woman who’d spent her life beautifying everything around her. Looking at the word more closely only made it worse: Dementia (taken from the Latin, originally meaning “madness,” from de- “without” + ment, the root of mens “mind”) My mom was not “mad”; she was not without mind; she just seemed to be having moments of blankness in her memory. But here we are, diving into this murky new world head-first, and we’ve got to call it something.

Everything in me wants to call it something appropriately descriptive—something neutral and non-judging, like “age-related cognitive impairment.” I hope with all my heart that one day our language will evolve, and we’ll be using grace-filled words to refer to the terrible disease these none-the-less grace filled people are suffering from.

Until then, dementia it is.

Only a short way into the process of getting my mom diagnosed, we found out that she was experiencing vascular dementia. Vascular dementia is the second most common cause of dementia, accounting for 20 percent of all cases. It was challenging to know what was happening to my mom’s mind. Her physician explained that she was having “mini strokes,” medically known as transient ischemic attacks (TIAs). A TIA is when blood flow to a part of the brain stops for a brief period of time. These TIAs were apparently the cause of her vascular dementia. I wish I could say that this information was comforting, but it wasn’t. At this point we knew the cause, but the diagnosis also made it pretty hard to deny that my mom was in fact losing her memory, and that there was little (or no) hope of recovery.

After the pieces were put together, and I realized that we were in for a journey with my mom and her dementia, I began to research everything I could find on the Internet, in books, in journals, etc. Certainly, I thought, there must be an approach that preserves her dignity and wellbeing. What I found was very discouraging. Many books had been written, several resources were available, but the overall message was very distressing. Of all the approaches I found there was not a single one of them that could be called “hope filled.”

Fortunately, a friend of mine heard I was struggling with my mom, and she gave me the book Contented Dementia. I devoured the book as voraciously as I’d devoured any book in my life. And then I read it again. This woman (the source of the content of the book, though not its author), who had cared for her own mom, seemed to have an approach that allowed her to have a positive, respectful, relationship with people with dementia—she was actually connecting both joyfully and productively with people suffering from severe memory loss.

The first chance I got, I began to try various techniques from the book on my mom. When I did, the experience was wonderful. My mom was happy instead of frustrated and confused. After those first experiences, I could not learn fast enough. For the first time, I had hope that my mom’s diagnosis didn’t mean that she was condemned to live out the rest of her days in confusion, frustration, and discomfort.

I emailed Penny Garner, the woman in England who had established a loving relationship with her own mom. She and I communicated several times, and I was so taken by her approach, that I decided to travel to Burford, England and train under her. After a couple of visits, I realized that she had discovered many techniques that were effectively helping people with dementia to be content. The more I learned, and then implemented what I learned on my own mom, the more I witnessed the relationship I had with my mom as being positive, and it actually preserved her dignity and well-being at the same time.

At the same time, my colleagues, Mary Koloroutis and Michael Trout were finishing writing their book See Me As A Person: Creating Therapeutics Relationships with Patients and their Families. The behaviors they wrote about, seemed to integrate perfectly into Penny’s approach with those suffering from dementia. See Me as a Person invites clinicians (which, in the world of dementia care, includes family and friends who care for the dementia sufferer) to “attune” to the people in their care. In so much of traditional dementia care, where the main objective seems to be to get the patient to cooperate, the idea that you would actually try to tune in to what the person is experiencing gets completely lost. If the person with dementia is not experiencing “reality,” why would we want to tune in to that? (As you’ll see, as this book continues, we do it because it works!) See Me as a Person also identifies three therapeutic practices: wondering, following, and holding, which I could see immediately would help me keep my mom emotionally safe, allowing me to become for her the “sturdy” presence that Mary and Michael wrote about in their book.

My mom lived with dementia for about five years. Discovering this new way of connecting lovingly, respectfully, and authentically with people who have memory loss was a journey, and I’m grateful every day that for at least some of the time my mom lived with dementia, she was happy.

Throughout this trying journey, it was important for me to see my mom not only as the aging, vulnerable person she was becoming, but also to remember who she was in her finest hour, prior to the onset of dementia. She was a woman filled with grace, beauty, dignity, personal pride. She was an exquisite homemaker who loved to travel the world, and she was the loving mother of six children. When I kept both faces in front of me—the face of who my mother the dementia sufferer and the mother I’d known and adore for my entire life—I was able to be in a loving relationship with her that filled both of us with happiness and contentment until her dying day.

MaryAnn’s Family Bill of Rights

As a colleague shared with me a piece called Joan’s Family Bill of Rights, written by Barbara Lewis, my mind went right to the journey I had taken with my own mom. My mom had dementia, and although Barbara’s experience was in a hospital setting, I see such a crosswalk between her insights and mine from a memory care unit perspective, that I decided to write my own family bill of right’s, in honor of my own mom and our journey together.

MaryAnn’s Family Bill of Rights

Staff who care for the elderly, especially the frail vulnerable population that has dementia, are the greatest people on earth. They take care of our loved ones and provide compassion and care “24/7.”

Throughout nursing care/memory care/skilled care facilities are posted “Residents’ Bill of Rights and Responsibilities,” which outline the expectation of residents. Nowhere did I see the rights of the families who spend long hours at the side of their loved ones, sometimes watching them slip slowly away from them, until their final breaths. After spending months being with my mom, MaryAnn, in a memory care unit, here are my suggestions for caregivers when dealing with families:

1. Don’t treat elderly people like they are children. They have endured many many years of hard work; this is a time they should be treated like wise, priceless individuals.

2. Don’t treat elderly people like they are objects. Shouting at them and pulling them around by their clothing is not humane; they most likely are some one’s most priceless gift, treat them with loving kindness.

3. When you enter the room, first notice what the person is doing. If he or she is resting, exit with quiet respect. If family is present, don’t make the family invisible by not making eye contact and ignoring them.

4. When the fall alarm goes off, have a sense of urgency when you respond. We as family members can hear it ringing in the hall and are afraid some frail person may be hurt. Laughing at the desk or making light that the alarms are going “off again” is neither funny nor reassuring.

5. Don’t complain about anything. We don’t care if you are short staffed, the computer doesn’t work, you can’t find what you need, etc. Family members don’t want to hear your complaints, no matter how valid they may be. We want the room filled with as much love and tenderness as possible.

6. Don’t see the family’s involvement as meddling in your work. Some people can only cope with the loss of their loved one’s identity by trying to feel in control of a world that feels like it’s eons away from everyday reality.

7. Determine the families’ energy level before you make a high-energy entrance that may feel chaotic or disrespectful to others. Your energy level should match the resident’s and family’s. Know when to laugh and when to be quiet; the emotions we feel vary from sweeping sadness to gratefulness just to have our loved ones with us one more day. We appreciate when you know where we are in the spectrum of emotions. Meet us where we are, not where you are.

8. When you care for the elderly person with kindness and compassion it is the best gift you can give any family. We worry all the time; we carry guilt, remorse, sadness, regret and many other emotions. Your ability to make our loved one smile and feel content, gives us unbelievable peace.

9. Remember we are grieving. Our loved one is no longer our mom, dad, uncle, or aunt, as they have resorted back to a different time. Words cannot describe what it feels like when your own mother looks at you and doesn’t know who you are. Ask the family what they need, how they are, and what you can do for them. Sometimes just asking is enough.

10. At the end of the elderly person’s life, demonstrate concern for his or her family. Although you may think the family will be at peace to be at the end of their difficult journey of having a loved one with dementia, this may not be true. The realization that they will never have this person in their life again is overwhelming. Their emotional pain is internal, and there is no cure. Your kind words can soothe a breaking heart.

*Adapted with appreciation from Joan’s Family Bill of Rights (www.joansfamilybillofrights.com) by Barbara Lewis.