Or could this concept of letting things be mean that we are not giving up, that to the contrary, we are feeling empowered? We can let go now because we understand that there is much that we can do: we can change our attitude, we can change our language, we can look for and build on strengths, and we can celebrate small moments, tiny victories. We can work at living in just this moment, being thankful for the smile, the laugh, the squeeze of our hand, the shared moment.

We cannot change how other people feel about life with dementia. We cannot make them stop pitying us. We cannot make them stop feeling afraid, or uncomfortable. It is hard enough to control these feelings in ourselves, we cannot hope to try and control these negative feelings in other people. We just have to let it be. While you cannot change the condition of dementia, you can change how you look at it, how you live with it.

How you live with dementia depends completely on your own attitude. We cannot change the condition itself, but we can change how we approach this enormous challenge in our lives. We are still in a relationship, even a partnership with the person we love who has dementia. However, we are the only partner in this relationship who can decide how to think, how to behave, what to believe, how to cope. The person living with dementia, obviously, is being propelled on a journey over which they have very little or no control.

We still have control (even though we may often feel that we don’t). We can still make attitude adjustments, course corrections, seek help and ask for respite for a few hours or a few days. The person living with dementia has none of these choices available to them. We have to let that be.

Caregiving is some of the most difficult and demanding work that we will ever do. It demands great patience and strength of character. It is not a role for wimps or martyrs; it is a role for the courageous and the optimistic. You will probably have many moments of sorrow, even despair, but you will never, ever regret taking on this very difficult work. For the rest of your life, you will know that within you lives a hero.

You will carry with you moments of tenderness and joy that can only come from the intimacy of caregiving. You will know that you faced the most daunting challenge of your life and met it head on. Even through your sadness and loneliness, you will gain comfort from the knowledge that you have done and are doing the very best that you could for the person you love. That is all any of us can do, just our very best and then we have to let it be.

You are learning in this caregiving journey the very important lesson that all of us must learn: You know that we can’t control or influence everything in our world. Those things we can’t control or influence, we simply have to learn to LET IT BE!

I do find it interesting that my body registers the time of year before my mind seems to. Perhaps it is the cooling temperatures, the cobalt blue of the sky, and the shorter daylight of autumn that signals something deep inside of my subconscious and brings on this plunge into melancholia.

Once I remember why this is happening to me, then I begin to recover and climb out of the pit that I fall into every year at this time.

Recently, as I was pulling out of this annual malaise, I had an intense desire for fried chicken and biscuits with honey. We don’t usually eat meat these days, and rarely eat anything fried, but this craving would not go away. So, I bought some chicken, soaked it in buttermilk, dredged it in flour and fried it up and served it with homemade buttermilk biscuits and honey. Tom was surprised at the dinner I cooked that night, but he enjoyed it as much as I did.

And then I remembered why I wanted to prepare fried chicken and biscuits. Every autumn, when I was a kid, our school closed one day so that we could all attend the Texas State Fair in Dallas. It was a wonderful day for us, my cousins, sisters and me. We would ride the caterpillar and scream when the cover closed over us as we raced around the track. Then there was the roller coaster and the double Ferris Wheel to make us scream some more. We would take a break from the Midway and poke around the barns that housed the farm exhibitions. Then, it was back to the noise and the rides and we would dare each other to sit in the very last car of the roller coaster one last time.

The day always ended the same way, standing in line to buy our box of fried chicken with biscuits and honey from the wonderful restaurant, Youngbloods. They were famous for their authentic REAL southern fried chicken and biscuits. The boxes had holes in them so that the steam from the food could escape from the box (steam would make the fried chicken soggy). The steam rising from that little box was intoxicating. We sat on the grass of the fairgrounds by the duck pond, listening to the music from the band stand as the autumn sun was low in the sky, and the lights from the midway were beginning to twinkle. Later, we would meet our parents, aunts and uncles by BIG TEX, a giant cowboy statue who stood in the middle of the fair grounds. Of course, everyone else at the fair had made plans to meet by Big Tex so there was always a scramble of people trying to find their families and friends for the drive home.

This autumn, I think I have finally learned the lesson that our memories are stored not only in our minds, but also in our bodies. I hope to bring this new understanding to the work that Tom and I do with people living with Alzheimer’s. Giving people the opportunity to engage their senses (even if some or all of those senses may be degraded) is such a powerful pathway to memory, re-connection and reminiscence. We remember not just with our minds, but through our bodies. We remember (body, spirit, mind) those things we tasted, smelled, felt, heard, saw, experienced. Our whole being remembers. We are not just those things that our minds may or may not remember clearly; we are walking encyclopedias of colors, emotions, we are living libraries of stories. Our minds may grow confused and forgetful but the whole of us, our essential selves, somewhere, somehow, we will always remember.
big tex

Sinsinawa Mound Center, Wisconsin

We will be speaking at the Senior Behavioral Sciences Conference at the Sinsinawa Mound Conference Center in Southwestern, Wisconsin on October 27th, 2011. Please contact Jayde Doering for further information @ DoeringJ@southwesthealth.org or phone 608-342-3002.
We will be speaking about our experiences in the application of the Montessori Method for Alzheimer’s Care. Please join us, if you can, at this beautiful setting. There will be CEU’s given for medical staff, social workers and front line staff. Hope to see you there!

Did you know that there are different memory systems at work in our brains?  One of those systems is the declarative memory system. This is the memory system that affects short term memory, language, facts, recent episodes and executive function (the ability to make large and small decisions.)  This is why a person living with Alzheimer’s often cannot remember things that happened five minutes ago, or remember the names of loved ones, or struggles to make the simplest decisions. Just as the lyrics from the old song describes:

“It seems we stood and talked like this before. We looked at each other in the same way then, but I can’t remember where or when.”

For someone living with Alzheimer’s, it is as though someone walks in every five minutes with a magic wand, waves the wand, and poof, everything that just happened to them in the last few minutes disappears. This disappearing act happens every few minutes, all day long. Can you imagine how frustrating, how frightening, how aggravating this must be?

It is often made even worse by well-meaning caregivers who insist that the person:

“Just ate dinner ten minutes ago, don’t you remember?”

“Just saw your daughter this morning, don’t you remember?”

“Just went outside for a walk, don’t you remember?”

The problem is, of course, that people with Alzheimer’s don’t remember these episodes that just happened. That magic wand wipes the slate clean again, and again, and again.
To make our lives and the lives of people living with Alzheimer’s a bit easier, we recommend that you lose the word “remember.” This is not an easy thing to do. In the course of a conversation, it is very natural to ask each other if we remember a person or event. But, for the person living with Alzheimer’s, asking them to remember is like asking them to jump up and fly around the room. It is an impossible request and we must be vigilant in avoiding direct requests for information recall. When people with Alzheimer’s are asked to remember something, this request can make them anxious or frustrated and may cause them to become very angry, depressed or withdrawn.

Declarative memory also affects language, and that is why people living with Alzheimer’s often struggle to remember names of people or names of common objects.
We all do a little of this ourselves in our daily lives. We’ve all had the experience where a word is right on the tip of our tongue but we cannot find it. Later, sometimes in the middle of the night, we’ll bolt up in bed and shout, “Calculus! He was good at calculus,” finally remembering that elusive word. This is very common, especially in our overloaded and frantic lives. But, for the person living with Alzheimer’s, the constant struggle for words can be exhausting and enraging.
Many times when we are working in a nursing home or an adult day center, we will hear family members or friends pleading with their loved one who has Alzheimer’s,
“You remember, Mom. They lived next door to us for forty years! You have to remember them. She was your best friend!”
Because of the impaired declarative memory, people with Alzheimer’s are often not able to remember names or faces of people they have known most of their lives. Trying to convince them otherwise is not going to help. We have to understand what they are dealing with; there are parts of their memory that are simply gone.
As is often the case on the Alzheimer’s journey, just when we think we have a handle on understanding, something wild and unexpected happens. We may have worked hard to forget the word “remember,” when suddenly the person we love remembers us or some event from their lives. This may last only a few seconds, or a few minutes, but it is like the sunlight breaking through the clouds when it is happens. For a fleeting moment, we have the person we knew and loved with us again. Then, heartbreakingly, it is gone; the light goes out, the cloud descends.
To keep the ones we love in our life, it is important to understand that these fleeting moments of recognition or remembrance are causes for celebration, not despair. Rather than constantly mourning the loss of the person we knew and loved, we must learn to appreciate these brief encounters, these moments of connection. We must learn to see them as little gifts that flash brightly and leave just as suddenly as they come. If we can learn to enjoy this flash of connection, these little moments, we can have the people we love in our lives again, not, of course, as we used to have them in our lives, but still with us, one brief moment at a time. These moments of recognition, of connection, are like little jewels that are strung on the necklace of time.

Flower Arranging

with Alzheimer’s and to prime the pump of memory is also one of the most simple: put something meaningful in a person’s hands.

Dorothy was a small, wiry woman we met while we were working in a locked dementia unit. Dorothy was the community scourge; she was constantly going into other people’s rooms and taking things that did not belong to her. She was very bossy and argumentative. She would say hurtful things to people, both residents and staff. Her family was embarrassed by her behavior, often apologizing and telling us that this behavior was not at all like their mother; their mother had been the soul of politeness and was well liked in her neighborhood and church. They could not understand Dorothy’s aggressive attitude and her constant pilfering.
Dorothy’s family told us that she had loved flowers and was known as the “flower lady” of their small town. Based on this knowledge of her personal interests, we decided to bring in real flowers and some vases for Dorothy to do flower arranging. We also brought a pitcher with water so that she could fill the vases with water for the flowers. When Dorothy saw the flowers, she rushed up to them and snatched them up in her arms, holding them against her chest with a look of challenge in her eyes. We told Dorothy that we brought the flowers for her to arrange for the dining room tables.
Instead of using the safety scissors that we brought for Dorothy, she began to break the stems in her hands. Crack, crack, crack, the ends of the flower stems flew all over the dining room as Dorothy worked feverishly, arranging the roses, lilies and daisies in various vases. As time went on, Dorothy began to work more slowly, with more care. She would turn the vases to see if the flower arrangements were balanced. She carefully poured the water into the vases; if some spilled, she wiped up the spilled water. A sense of calm and purpose came over Dorothy as she worked with the flowers. When she finished the task, Dorothy had a table filled with beautifully arranged flowers, each arrangement different, and each lovely. We asked Dorothy if she would like to put the flowers on the dining room tables. At first, she hesitated, but then she told us,
“That lady who sits there (pointing at a table) likes roses. I will give her this one with all of the roses.”

Dorothy became the flower lady again, this time the flower lady of the dementia unit. She still had problems with pilfering pretty things from other people’s rooms, but her attitude began to change. She may not have remembered that she was the person responsible for the beautiful flower arrangements in the dining room, but she loved looking at the flowers every day. We think that somewhere, deep inside, Dorothy did know that she was once again making a meaningful contribution to her community by providing their dining room with her special flower arrangements.

Through the years, as we have worked in retirement communities, adult day centers and memory clinics, we have discovered some simple but powerful tools for engaging people who are living with Alzheimer’s. One of the first ideas that we broach when we are consulting with families or training staff is this one very simple thing: put something meaningful in a person’s hands. This meaningful object can be something that the person loved, or it could be something from nature, or it could be a small sculpture or a beautiful photograph.

We all have a bond with nature, even those of us who live in cities. There is a resonance when we hold something made of wood; the wood takes on the warmth of our hands. Even something as common as a smooth stone can take on special meaning when placed in the hands of a person living with Alzheimer’s. Leaves, flowers, a cup of snow can bring forth a torrent of memories for elders who are now living in locked dementia units, or who rarely venture outside.

To answer that question, we have to take a look at our own lives. When you think about it, all of us live our lives in fleeting moments; we nod and smile at someone at work, we give a quick kiss to the people we love, we catch a glimpse of a beautiful sunset, we hear a much loved song on the radio. Our own lives are lived moment by moment.
Our own memories are fleeting as well. We remember snatches of conversation, a scene from the past, a familiar gesture, the taste of a favorite food. We, whose memory and mind may still be strong, are able to hold long conversations, sit through a two hour movie, or read an entire book. What do we, with our intact memory systems, remember from these events? If we are lucky, we remember the thread of a conversation, a few scenes from the movie, and the theme of the book. We are all of us, those who live with Alzheimer’s, and those of us who do not yet live with Alzheimer’s, all of us live our lives moment by moment. When we try to connect to those of us who have Alzheimer’s, we are doing something that is not so very different from the way we live our own lives every day. We just need to be more conscious of the immediacy and the momentary nature of life when we reach out to people living with Alzheimer’s.

Living in the moment is not a bad way to approach life. This moment is, after all, the only time we have. With our intact memory systems and our highly functioning cognitive abilities, we tend to race from one event to the next. People living with Alzheimer’s teach us the importance of slowing down; they teach us the essential lesson that there is only this moment in time.

We had this lesson brought home to us on a warm summer afternoon as we sat under the umbrellas of a sidewalk restaurant watching the world stroll by. Next to our table was a young family, mom and dad and two little boys. While the boys enjoyed their handmade ice cream cones, we couldn’t help but notice that both of their parents were completely immersed in their hand held devices. Both parents were turned away from their children, and turned away from each other, staring fixedly at the small screens in their hands. This moment: the lovely summer sky, the colorful people walking by, the yellow and green umbrellas of the restaurant, the flower boxes in full bloom on the sidewalk railings, the ice cream, and the little boys’ enraptured faces,
were all lost to the two people staring into their hands.

We live in a marvelous age of great leaps in technology, almost a renaissance period of change and growth. But if we surrender moments of engagement, moments of relationship to this technology, we will begin to lose pieces of our lives. These moments are usually just ordinary things, a family dinner, a run by the lake, a child in our arms. But these are the moments that matter; these are the moments that make up our lives.

When we were parents of young children, it was hard to make the time (even five minutes) to just talk to our children one on one and to really, really listen. But those five minutes, those quiet talks, those little moments are how we build and grow relationships, memories, our lives. People living with Alzheimer’s teach us to pay attention; look at the faces of the people you love, listen to the music of your life, feel the wind on your face, taste the ice cream. These moments are the jewels of our lives strung on the necklace of time.

Someone you love has just been diagnosed with Alzheimer’s. You may feel that this is the end of life as you know it. You are probably awash in the ocean of negativity that is out there when people speak of Alzheimer’s. There is the look of pain, of sympathy, the “there but for the grace of God” attitude that well meaning friends and family feel they must convey to people living with Alzheimer’s. You will be told over and over and you will read over and over again about the walking dead, the long good bye, the loneliness, the exhaustion, the fear, the dread, the…
STOP! There are always choices in life. You still have a life and you can still make choices. You can choose to be a victim, or you can choose to be victorious. Of course, there is no cure for Alzheimer’s, but there is a path, a way for you through the magical mystery tour that is Alzheimer’s world.
Having Alzheimer’s does not have to mean that your life is over; it does mean your life will be different. We make our plans for our life: when we get to be this age, we will do this, when we have accomplished this, then we will be able to do that. Life has a funny way of changing and re-purposing our grand designs, our hopes and dreams. Alzheimer’s is not a condition that anyone wants to face or deal with, but you have been dealt these cards and now you must find a way to live with Alzheimer’s and to continue to live your life to the very best of your ability.
The magical mystery tour of Alzheimer’s is all new territory, and it is different for each person. You will have to decide how you are going to take this journey, but you should know that you are never alone, no matter how wild the ride, how frightening the road. It is important to reach out to friends and loved ones and invite them to take this trip with you. You will have to be the one who reaches out; when friends and family hear the word Alzheimer’s, they often don’t know how to react, they don’t know what to say or what to do. People sometimes react to the news of Alzheimer’s the same way they deal with death; they become mute, they feel awkward, they want to flee, they sometimes act as though it is catching! You will be the one who has to assure friends and family that the Alzheimer’s journey is not about death, it is about life. You will have to tell people you trust and love that this is not the time to say good-bye, this is the time to say hello. Invite people just to show up, to visit, to talk, to play cards, to eat a meal, to go for a walk. This is not about the end; this is about a beginning. It will be up to you to engage your friends and family, to tell them what you need and when you need it.
Your ego, your pride and even parts of your privacy will have to be thrown under the bus before you can begin this tour. This is understandably hard for many people. We are all trained in this culture to be fiercely independent, to be strong and capable. Many of us believe that asking for help is a sign of weakness; we don’t want to burden anyone. Sometimes, when you ask another person for help, or when you tell another person how you are truly feeling, you give them a great gift; you give them the opportunity to be compassionate, to come to the aid of another human being. In our increasingly isolated and busy lives, many people don’t often have the opportunity to practice that most human quality, coming to the aid of another. When we ask for help, we also give someone else the chance to be in a state of grace, the grace of giving of one’s time, or energy, or compassion.
You will need to travel light, and learn how to be flexible, to find new routes to familiar places, to throw away all of the old maps, all of the old guides. You are on a trip that will demand all of your patience, your stamina, your love. There will be tremendous sadness and frustration and weariness on this tour, but there will also be amazing magic and wondrous mysteries and yes, even joy.