Hi everyone,
June is Alzheimer’s and Brain Awareness Month. To recognize this, AlzAuthors.com is holding an e-book sale. I’ll be joining them and putting the Kindle version of my book, The Dementia Handbook – How to Provide Dementia Care at Home, on sale for $2.99 for the week of June 21 – 28th.
Join DAWN and the team at AlzAuthors in helping raise awareness of Alzheimer’s and dementia. Together we can help those on the journey find comfort, support, and guidance through reading.
Judy Cornish
The experiential self is that part of us that remains, despite dementia. It is the part of us that is aware of what is happening in the present—through our senses. The best way to increase companionship and decrease stress in the caregiving relationship is to become more aware of the experiential self and to understand how to support it.
Focus on the present. Most of us live in the past and the future more than we live in the present. Our remembering selves are constantly recalling what happened the last time we stood in this spot, ate this food, spoke with this person. Our rational thought constantly leads us to compare, interpret, analyze, and draw conclusions—and leads our thoughts into the future with anticipation and planning.
We can, however, choose to join our companions who have dementia. We can enjoy the respite that living in the present provides, with a little practice. We can use our senses to tune in to whatever is around us. This is where someone experiencing dementia has no choice but to live.
Think about what your senses are telling you. What can you smell right now? What do you hear? If you turn away from your computer or phone, what do you see within a foot of you? in the distance?
Here at DAWN, most of our time with our clients is spent outside the home or care facility. We take them walking outdoors when weather permits and in the mall when it doesn’t. We go for drives. We poke around antique stores, fabric stores, hardware stores, coffee shops … wherever we can find something to touch, smell, listen to, or taste. We want our clients to reach the end of the day full of the good experiences we’ve found for them.
Our brains need stimulation, and continue to receive stimulation through the senses, long after dementia has taken away the ability to identify, label, or talk about what is being experienced.
Search for beauty. Beauty is magical. For my clients, it seems to nourish their sense of well-being. Beauty exists in melodies, colors, and scents. It is easy to find in clouds, flowers, vistas, and machinery. Even in a cracked city sidewalk, you can find a dandelion blossom. When we, as caregivers, focus on finding beauty, both we and our loved ones enjoy the benefits.
Search for gratitude. Gratitude is just another form of beauty. Gratitude is beauty in action. When we look for a silver lining in a situation, we are creating beauty. Gratitude is uplifting, soothing, and energizing. When our clients here at DAWN are distressed by something, we look for some aspect that will turn their negative feelings into gratitude.
In our culture of technology and busyness, with our focus on accomplishment and production, we forget to enjoy the simple things that surround us in the present. Spending time with someone experiencing dementia will enrich your life, if you see the value in being experiential.
When we as caregivers become more aware of what is happening in our presence, we become more aware of what is affecting a loved one who is experiencing dementia. Consciously shaping the present, and using our own memory and rational thought on behalf of our loved ones, is not only a great kindness but also the best way to enhance companionship.
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We all know that people who are experiencing dementia are losing memory. I often hear people say that when someone has lost their memories, they have lost themselves. Is that true?
I don’t think so. With our healthy brains, we are not only the sum of our past experiences. We have the ability to experience the present as well as recall what has gone before.
This morning I am sitting at my desk with sunshine streaming in the window, warm on my shoulders. I can hear children playing in the yard next door. I hear the garbage truck down the block and a car pulling up at the stop sign at the corner. Starlings are chattering in a lilac bush outside the window and a crow is cawing from a treetop across the street. I can smell the lilacs and the scent of the green tea mingled with ginger that I’m drinking. I am fully myself, experiencing the moments that are mine in the present.
I can also recall what happened earlier this morning. I went to the gym, came back home and made an espresso (well, two), showered, chatted on Skype with my son who is traveling in Portugal, read my email, replied to email, and renewed my internet security subscription for another year. And I can recall what happened yesterday, last week, last month, last year.
Am I more fully myself in my memories or in my experience of the present? Am I any less myself when I pay attention to what is around me? I think not. With both my sensory skills and memory skills intact, I am blessed with two selves—two ways of interacting with my world and my life.
Paying attention to both our selves. When we are living or working with people experiencing dementia, it becomes essential that we recognize the duality of our human existence and experience, because the person with dementia is losing only one form of existence. In dementia, the experiential self—the part of us that lives in and experiences the present—carries on.
What happens when only our experiential selves remain? When we live as experiential beings alone, we become more aware. Without memories to distract us, or rational thought to interrupt us with comparisons or analysis or anticipation, we are more fully engaged by and with the information our senses deliver to us.
Even when someone has lost the ability to interpret or explain what they see, hear, taste, smell, or feel, they are still receiving sensory input. We, as their companions and caregivers need to realize this and be careful of what happens to them in the present. We need to truly focus on them as individuals—individuals who are still fully themselves. What they are experiencing will be the source and cause of how they feel, react, and respond to us.
When we are aware of our two selves—the experiential self and the remembering self—it is easier to spend time with someone experiencing dementia. Companionship is enhanced.
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The fifth step we can take is in helping our loved ones with dementia retain a sense of self is to give them opportunities to be kind and helpful. There is nothing more uplifting and effective at making us feel better about ourselves than being able to do something for someone else.
When we create opportunities for our loved ones to give something to us or do something for us, we are helping them achieve contentment and well-being.
Give a chance to be helpful. Having dementia means becoming less able not only to do things for ourselves but also for others. And yet, being able to offer something of value in our relationships is essential for us to experience quality of life.
Look for ways to make it possible for your loved one or client to be helpful, even though losing rational thought and memory makes it increasingly difficult to perform tasks.
One of the skills lost in rational thought is being able to perceive sequences or steps in a process. This means that your loved one will become unable to do such tasks as making coffee, setting the table, or washing a load of laundry. They will not, however, become unable to perform single steps with a little gentle direction. Although he cannot make coffee alone, you might ask for help in setting out or filling two mugs, or carrying them to the table. Although she might be unable to set the table entirely, she may be able to put a plate at each place. Folding a laundry basket of tea towels or facecloths is a task that makes many people feel helpful and needed.
Recently, one of our clients had to transition from home into a memory care facility. We were careful to arrange for her DAWN caregiver to continue to visit her there. Her family arranged to take turns visiting her each day. However, when they took her to her new home she was delighted. She had been a nurse for many years and, upon walking inside, she looked around and said, “Wonderful – thank you for giving me my job back!” Her transition from home to care facility was painless because she believed that she had been appointed as the administrative nurse to oversee the care of her new housemates.
Give a chance to give. Having dementia means being the constant recipient of attention and assistance, yet we all need to be able to give as well as receive. Even if it is only a hug or a listening ear, we need to be careful to give those experiencing dementia the opportunity to give back to us.
At DAWN, when we see that a client needs a hug, we say we need one and ask her to give one to us. She gets the hug and physical reassurance she needs, but she also gets the pleasure of having helped someone else. During the holiday season, we carefully make the selection and giving of gifts a part of our care plans, so that our clients can enjoy being gracious and generous. Giving is an essential part of maintaining and enjoying a sense of well-being.
This concludes my five-part series on how we can help our loved ones and clients continue to retain a sense of self, despite dementia. I hope it’s helped you lower your stress as a caregiver and increase your loved one’s sense of wellbeing.
The fourth way we can help our loved ones retain a sense of self despite dementia is to destigmatize forgetfulness and confusion through making it a shared experience.
Ongoing loss of memory and rational thought is unavoidable and incurable (at present) for people with dementia. We can’t change that for them, but we can make the experience less lonely and more comfortable. We can be teammates rather than superiors.
Be a little forgetful yourself. There’s nothing worse than always being the person in the wrong—the person who loses things and forgets appointments and is confused about what’s going on. We can’t help our loved ones or clients develop a better memory. Reminding them or jogging their memories won’t bring back the skills that dementia is taking away.
Instead, we can make forgetfulness and confusion into something that is a normal part of daily life rather than something that is upsetting. When it’s time to go out, say what you might be thinking internally out loud: “Hmm, now where did I leave my keys? Not in my purse—maybe in the kitchen? I’d better go and look.” When an appointment is overlooked or a deadline missed, rather than being upset and dismayed by the error, react to it with complacency, as a normal part of life. After all, if we’re living or working with someone who has dementia, we do need to accept such mistakes as inevitable and normal.
Blame a third-party. When our loved ones or clients lack rational thought, we can’t expect them to understand our explanations for why they should or shouldn’t do something. Often our clients lose their understanding of hygiene or sanitation. It becomes very difficult to get them to wash their hands or take showers, because understanding that germs can cause sickness or poor hygiene can cause skin issues requires the ability to see cause and effect, as well as sequence or process—rational thought skills they are losing or have already lost.
Instead of attempting to change someone’s behavior with explanations even though they lack the ability to use analysis, change the situation into something you experience together and can commiserate about.
Here, we’re always looking for a distant third party to blame for causing us to do something. We wash our hands with our clients because we don’t want to catch the flu from “strangers” who also use the bathroom. We get out of the hot tub together because “the insurance company” enforces a 15-minute rule. We take our vitamins or eat our vegetables because we don’t want the doctor to be concerned.
When someone lacks rational thought, you don’t have to propose entirely logical reasons for doing something. What’s more important is that you and your companion with dementia are both required to do whatever it is, so that you can act as teammates in complying.
Destigmatizing forgetfulness and mistakes is a very valuable way to help our loved ones retain a sense of self, despite dementia.
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The third step in helping our loved ones retain a sense of self despite dementia is to balance safety with their need for autonomy and dignity.
In his book Being Mortal, Dr. Atul Gawande points out that in this country we seem to confuse prolonging life with preserving quality of life when someone is experiencing an incurable condition. As caregivers, we need to be careful that we do not forget that retaining a sense of self and well-being is vitally important when our loved ones are experiencing dementia.
Become an accommodator.
The third way that we can preserve a sense of self for our loved ones and clients experiencing dementia is by being careful that we respect the things that are a part of their personalities and the earlier life experiences that have shaped their preferences.
Recognize elderhood. The people who develop dementia are adults and usually our elders. They have lived for decades with the freedoms and responsibilities that accompany adulthood. I cringe when I hear someone say that people with dementia are like children or speak to them in patronizing tones. Losing rational thought and memory does not make someone into a child. Dementia impacts the ability to communicate and retain information, not maturity. Our loved ones continue to be our peers and our elders and we should be careful to treat them as such.
Respect beliefs and cultural preferences. We each arrive at elderhood with a very personal array of preferences, beliefs, values and understandings. As caregivers of people who have dementia, it’s important that we learn about these things that shape who our loved one or client is. There will be some beliefs that we cannot agree with, but we need to be aware of them so we can avoid confrontations. There will be other things we can support, such as cultural and religious beliefs. Helping someone retain a sense of self includes helping them keep in contact with the activities, habits and preferences that have shaped their lives.
Support personality traits. When someone is a night owl, we cannot expect them to be ready for breakfast first thing in the morning, nor can we expect them to fall asleep in the early evening. Some people need silence while others need to have a television playing in the background before they can relax. One person needs to eat slowly in a peaceful setting while another does better standing in the kitchen with commotion all around. When we pay attention to these kinds of personality traits, and accommodate them, we increase quality of life for our loved ones and reduce our own stress.
Providing person-directed care means getting to know as much as we can about the person who is experiencing dementia. We should treat them respectfully, as adults and our elders, but also with admiration. It takes a lot of courage and tenacity to negotiate daily life without memory or rational thought.
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Last week I described how we can be storytellers for our loved ones who have dementia—recounting happy memories for them. When we do this for people experiencing memory loss, we give them a valuable gift: an experience in the present of whom we know them to be, even though they cannot recall their own pasts.
There is great comfort in knowing that you have experienced good times in the past, especially with someone who happily recounts them for you.
Become a skillful listener.
We can help our loved ones experiencing dementia retain a sense of self in other ways as well. The second way to enhance a sense of self is to accept what they say as valid, without judgment or correction.
Listen. Truly listen. What does it mean to listen when the speaker has dementia? Someone experiencing dementia is losing rational thought but not intuitive thought. This means that their skills at reading facial expressions, body language and intonation remain intact, while their ability to interpret meaning from words and syntax is fading. This makes eye contact and nonverbal communication more important than usual.
Be careful that you are truly paying attention. Preoccupation, worry or impatience is easily read in expression and posture. Even when our clients or loved ones lose vocabulary and become unable to form sentences, they continue to be able to read and interpret our nonverbal signals. And, without rational thought or memory, they are not able to assume reasons beyond the present for our preoccupation or worry. They can’t help but take our moods personally.
Allow pauses to happen. When someone is gradually losing vocabulary and the ability to organize words into logical sentences, more and more time is needed to find words that accurately express what s/he wants to say.
In the earlier stages of memory and language loss, it’s kind to allow pauses as your loved one searches for the needed words. As time goes on they will be less successful at finding the right words and it becomes kinder to offer suggestions. Eventually, it becomes difficult to interpret what someone with dementia is trying to say. At that point, we need to become careful and attentive observers—looking for intention and needs in the situation and surroundings.
Hear feelings, not words. When a baby begins to experiment with language, the entire family welcomes its efforts and enthusiastically searches for meaning in mispronounced and misused words. We should do the same for our loved ones who are experiencing dementia. Their feelings and intentions remain intact, hidden behind failing vocabulary and syntax. Just because someone cannot remember the word for pain does not mean s/he is not feeling it.
Truly listening to our loved ones even though their ability to use language is failing is the second step in helping them retain a sense of self, despite dementia.
Last month, Glenda Hawley, my friend and a psychologist here in Moscow, traveled to Chicago to present the philosophy behind the DAWN Method at the ASA annual conference. We stayed for the entire week and enjoyed being able to talk with many of our peers in the worlds of senior care and dementia care.
Here is a link to the highlights of our presentation:https://www.youtube.com/watch?v=JPwIUoPQRDA.
If you’d like to see the entire presentation, it’s available on the DAWN Method YouTube channel. Here’s the link: https://www.youtube.com/watch?v=7vXtVCWrDSc.
At DAWN, we see ourselves as being both remembering selves and experiential selves. We know that people with healthy brains are able to both live in the present (experiencing what is happening in the moment) and also to use recall to remember and reflect on things that have happened in the past. We know that a lot of what gives us a sense of self—that story of where we come from and who we now are—comes from our remembering selves. It is also our means of feeling nostalgia and recognition, and of sensing the familiar.
Our clients are not so lucky. With dementia, because they are losing not just memories but also the ability to use memory, they lose their remembering selves. The past experiences and memories that have shaped who they are become unattainable. They become unable to recognize what is familiar and feel perpetually not at home.
Become a storyteller.
When we understand this, we can help our clients and loved ones feel more comfortable and at peace in the present by bringing to them their happy memories. We can tell them their memories and recall our mutual good times for them—in the form of stories.
If you love someone who is experiencing dementia, become their personal storyteller.
Be the person who comes with joyful memories rather than sorrow. Instead of hurt feelings over what they can’t remember and concern about their failures, bring stories of earlier times. Be a companion who cheerily recounts good times and happy stories from their childhoods and earlier years.
This is the first step toward helping someone who is experiencing dementia retain a sense of self. Over the next four weeks, I’ll detail four more areas in which we can help our loved ones and clients feel more comfortable and at ease.
I often hear this question from family members. It makes us uncomfortable to find ourselves in a conversation with someone who is not making sense.
There are two reasons for why your loved one may make a statement that is nonsensical.
An altered sense of reality. When people with dementia say something that doesn’t make sense or cannot be true, it may be sensible according to their personal sense of reality even though we know it is nonsense in our reality. The problem in this case is that they are losing rational thought and memory, which is skewing their ability to properly understand what is going on around them.
Without the ability to recall facts or events that have already happened, people experiencing dementia misinterpret what is happening in the present. Without the ability to use analysis, see cause and effect, or use comparison (rational thought skills), they arrive at even more erroneous conclusions.
If our response is to correct them, we are asking that they accept our version of reality – something different than their brains are telling them is true. But because they have dementia, they lack the very tools needed to consider and accept our version of the truth. That’s why their reactions are usually resistance and denial.
When people experiencing dementia are in error about reality or truth, it’s wiser to accept their version of the truth and try to work with it to make them more comfortable. It’s a kindness to refrain from asking them to use cognitive tools they no longer possess.
Loss of language skills. Someone with dementia may also make nonsensical statements because dementia is affecting the part of the brain that enables them to use language to express themselves. If you’re in the grocery store shopping with a loved one who says, “You’re spending all my money,” she might actually be trying to say, “My, everything seems so expensive – we’re spending an awful lot of money right now.” The first statement is an overly simplified version of the second.
On the other hand, she may actually believe you have been spending her money against her wishes – a misinterpretation of reality. When you’re dealing with a false sense of reality, the best response is to not demand acceptance of your reality (i.e. “No, I am not – I’m doing everything I can to preserve your resources and spending my own on you!”). That would be trying to discuss facts with someone unable to do so. Better would be, “Oh, Mom, I worry, too. Everything seems so expensive.”
The better response is always to respond to the emotion behind the words. Someone who says, “They stole all my jewelry!” is expressing loss and indignation, whether factual or not. If you avoid the factual issues and respond to her emotions, you’ll avoid a fight. A nonfactual response would be, “Oh Mom, I’m so sorry … I felt so badly for you when that happened,” and then to move the conversation on to a happier topic.
When our clients’ ability to express themselves falters, we ignore their incorrect words or sentences and focus on their intonation and facial expressions. Their nonverbal communication displays the emotion they want to convey, which helps us discern intent and meaning.
When I respond to my clients in these two ways – accepting their version of reality and listening for the emotion and meaning hidden by their impaired vocabulary – they begin to feel safe talking with me, and feeling safer means less questioning or striving to be understood.
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