Don’t Contradict the Person with Dementia

I am glad to see that a lot of dementia communities are seeing the importance of not contradicting people with dementia. There are a lot of ways to say this but my favorite is my brother’s. When our mom (who had dementia) was still alive he would always say, “You need to live in her world.” Let me give some examples of how we did this with our mom.

In order for my examples to make sense, I will give you a bit of Mom’s history. She and dad retired at our family’s summer lake home and would travel to their condo in Florida during the winter. After Dad died and her dementia had progressed, she spent all of her time in Minnesota so my brother could take care of her.

When I would call Mom I would usually start a conversation about the weather because this was one of the topics that she loved to talk about. (Weather is a big topic of discussion in Minnesota.) One day during the winter, after I told her that in Tucson it was nice and sunny, she said, “Well it’s not nice and sunny in Florida; it is actually snowing!” Then she went on about how unusual it is that Florida was having snow. I knew she was in Minnesota, but I never corrected her. As far as she was concerned she was at their condo in Florida. I thought it was amazing that she was focused on the oddity of it snowing in Florida, but as she looked out at the snow on the lake outside her window, she could not see herself as being in Minnesota.

While training in England with Penny Garner, I got to observe a person with dementia being transitioned into a memory care facility, so of course I was the logical choice to transition our mom into a memory care unit. I stayed with Mom the first three days of her transition, ensuring that she stayed contented. During that time, she would say of her new room in the care facility, “Isn’t this a nice condo? You know your brother Jeri bought it for me!” The majority of the time she thought she was in a nice new condo (which she loved and was very proud of how it was decorated), and I did not contradict her; in fact I built on what she said. I would answer, “Yes, this is a lovely condo, Jeri did a great job I also said many times how nice and warm it was (she loved being toasty warm). I would admire how everything matched and point out what a lovely view she had from her window. Seeing her so happy and proud in her “condo” warmed my heart. What difference did it make that it was actually a room in a care facility? If she was happy and proud, I wasn’t about to shake her reality.

Here is one of my favorite memories of my mom: A few months after I transitioned her to the memory care facility I went up to Minnesota to check on her. During my visit I realized just how happy Mom was. She didn’t know Dad died because his death happened late enough into her dementia journey that she never took in the fact of his death. I learned never to contradict her when she said something about Dad coming home soon. It would only have made her unhappy. She just expected my dad to walk through her door at any time, and she was happy in that expectation. As I reflect on that day, I am comforted to know that because I didn’t contradict her by explaining that Dad was dead and he wouldn’t be coming home, and instead just let her live contentedly in “her world,” it definitely created a safe haven for her and kept her at peace.

I would love to hear stories from others with loved ones who had or have dementia and how they joined their loved one to “live in their world.”

 

 

 

Learn from the Expert (the Person with Dementia)

In the early days of our training in the SPECAL method of dementia care with Penny Garner in Burford, England, my sister Margo and I learned how important it is to learn from our mom (the expert) who had dementia.

After Dad died, when Margo and I would call Mom, one of the first things she would say is, “I wonder where your dad is.” Before we met Penny we would use the common sense answer, “Mom, Dad is dead.” After she heard that answer from me, at times she would ask if she had been at his funeral and who else was there. She seemed to have no recollection of having been at the wake or funeral service. I would tell her that she had in fact been there and tell her about the service, highlighting a few of the people who were there.

Common sense tells most of us that filling in the facts for someone with dementia is a good thing to do, but it became pretty obvious that filling in the facts for our mom didn’t help at all because a few minutes later she would ask, “Where is your dad?”

Besides just not being effective, this filling-in-the-blanks practice also chipped away at Mom’s self-esteem. After months of continually being corrected, her confidence was low.

We learned from Penny that Mom was not taking in the facts of what we said when we tried to “set her straight” about our dad, but she was taking in all of the feelings of sadness. Our truthful answer was making her feel sad and having no positive effect whatsoever.

Through Penny’s insight we learned that we needed to find an answer that mom would be content with, easing her anxiety. We also learned that if we tested a few answers and listened closely to her responses, she would “teach” us what the best answer was.

Once we opened ourselves to the idea of providing our mom with an answer that would keep her content and not contradict her world-view, through trial and error, we eventually found the best answer for Mom. We tried, “Dad is fishing,” and, “Dad is at the grocery store,” with fairly positive results, and we tried a few other answers that didn’t seem to provide much comfort at all.

One of the things we learned in this process is that the best answer for our mom would have to be an answer that accomplished two things: 1) it would make her feel that Dad was safe and well, and 2) it would provide a very easy-to-accept explanation for his absence.

Our dad used to own a heating and air conditioning company in Minnesota. He was on call 24/7. During the winter he had a lot of calls in the middle of the night, so we tried, “Dad is on a service call,” and it worked beautifully. When we used that answer Mom would usually say something like, “Oh, that’s right.” At that point we would change the subject to something Mom liked to talk about. After we started providing this new answer for only a short period of time, she started asking, “Where’s your dad?” less and less often.

We still had a lot to learn from the expert (Mom), but it was with that breakthrough that we knew we were on the right path to creating a safe haven for our mom.

If you are interested in learning more, I would suggest getting the book Contented Dementia by Oliver James. It is all about Penny Garner’s highly effective SPECAL method of dementia care.

I would love to hear other’s thoughts around this topic.

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.

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.