Video with the Learnings from Alzheimer’s

At Moving Your Soul we have been collecting for years stories from great people who have discovered how to find in Alzheimer’s, beyond the pain and sadness, a reason for joy, growth and learning in their own lives. A few weeks ago we decided to ask a new question through the social media:

What have you learnt from Alzheimer’s?

In this video you can see the inspiring responses we have received, selected and translated with all our best intention and gratitude. Lots of people from different parts of the world have shared in few words a hopeful message from dementia/Alzheimer’s. Thank you everyone for participating!

Enjoy the video and if you know someone who can appreciate it, please share!!

The Role of Status in Alzheimer’s disease Interactions

As we love this article posted by Evan Bass on his blog, we have asked him permission to share it. And we love it because it talks about something very common in the relationship between family members or caregivers and people with Alzheimer’s: the difficult balance between taking a responsible role to someone who loses her capacities, and giving her all the respect that she deserves.

The Role of Status (Relative Social Position) in Alzheimer’s disease Interactions. Posted by Evan Bass

When approaching relationships in the context of improv theatre, it is essential to keep in mind how your status relates to the other person’s. Is the character you are playing higher, lower, or of equal status in relationship to the other? A butler is lower status to the person he or she is serving. Two butlers are essentially equal status—unless one is the butler in charge and the other is his subordinate. There is definitely a higher and lower status in the roles of a father with his young child. Each interaction we have with others reflects a specific status relationship.

Status is not a passive condition; it affects how we talk to and act with someone else. In general, a person of higher status may “talk down” to someone of lower status, and may not necessarily feel he or she needs to listen well to the other. Someone of lower status almost always listens well to the person with higher status, often attempting to placate him or her. Two people of equal status generally demonstrate mutual respect for each other.

We rarely think about this concept day-to-day, it is almost intuitive, but it is always present. When performing improv in front of an audience, improvisers who want to create believable relationships and situations need to actively think about status in every interaction. So how does this transfer to Alzheimer’s and why is it important? How you relate to someone living with Alzheimer’s—how you enact your status relationship—significantly changes how your interaction plays out.

Try to recall how you felt in an interaction where you assumed you were equal in status with someone, only to find that person “talking down” to you. It immediately makes you feel like you have lost control and, by the end of the interaction, you feel less important. It is natural for a caregiver of someone with Alzheimer’s to feel the need to “take care of” and “protect” the person in times of confusion. When this “protector” takes charge and starts making all the decisions, it results in that person in charge adopting the “higher status” role in the situation and naturally “talking down” to the person being cared for.

While every care partner takes special consideration to avoid treating the person with Alzheimer’s like a child—infantilizing him or her—we inadvertently assume the higher decision-maker status and infantilize without meaning to. An individual who once had control over his life can be lead to feel inferior if that control is completely taken away from him or her. 

Parents of very young children usually dress them, feed them, and make decisions for them while rarely asking the child’s permission for all of the decisions made on his or her behalf. Those with Alzheimer’s are often treated this way as well—having others make most decisions for them. Being grown persons, they not only lose much of the control they once had but also acutely feel that loss.

Returning to the question of relative status and its effect on the person with Alzheimer’s, clearly making decisions for those with Alzheimer’s without asking permission and without getting consent, exerts status dominance over the person. Not surprisingly, then, individuals with Alzheimer’s withdraw from such interactions and communication.

An amazingly simple way to counteract unintended infantilization is to approach every interaction with the idea of “status” in mind. Always treat an individual living with Alzheimer’s as EQUAL to or HIGHER status than you. This means always asking permission before acting on their behalf and never making decisions for them without asking for their consent. This includes, of course, never treating them in a way that would ever be construed as disrespectful (i.e. doing something to that person like dressing them, feeding them, or putting them to bed without their permission). A person can still respectfully help someone in daily tasks, even going to the toilet, by asking permission and allowing the other to do as much as she can herself—giving control back to her (or him).

To ask permission means asking a question, and questions can be overwhelming and cause confusion in those with Alzheimer’s. However it is not questions themselves that are confusing, but rather how the questions are presented that cause the problem. While complex sentences and open-ended questions can cause confusion, avoiding questions altogether leads to removing all control from an individual with Alzheimer’s.

In the Scripted-IMPROV study and the “I’m Still Here” approach, we generally find that asking simple, often binary questions —that is, questions in which two possible answers are provided (e.g., “Do you want to wear your red shirt or your blue shirt?”) – creates a sense of control for the individual with Alzheimer’s. By making the request simple enough for the individual with Alzheimer’s to fully understand and respond, the individual maintains control. You offer the options. They make the choice.

The other type of question that enables the person responding to maintain control is one that allows them to answer with a simple yes or no response. “Let’s eat some breakfast. Would you like that?” is such a question. You first set up the goal in a very simple way, but instead of telling an adult what they have to do, you lead them into it and ask their permission so they can give a simple, “Yes” or “No”, either answer actually controlling the outcome.

When you consider anyone at all at a higher status than yourself, including a person with Alzheimer’s, you naturally do the respectful thing. Even when treating someone as equal in status, you would never talk down or do something without their permission. As we try to “help” others, we unconsciously take on the role of the person who can help, and thus place those being helped in a lower helpless status to ourselves. It is unconscious, and we never mean anything negative by it, but it greatly affects how someone with Alzheimer’s feels around you.

People living with Alzheimer’s already question how much control they have in their lives. Their failing memory can make them even more self-conscious and worried about the control they have over their lives. When we respect a person with dementia by speaking to him or her in a way that makes him/her realize that he/she is of equal or higher status, it goes a very long way. Instead of hurting their self-esteem, we boost their self-confidence. This allows us to forge a meaningful relationship in which they are given the respect that they deserve.

Evan Bass

Image: Liz West

Things are not what they seem

I have had the pleasure to work with people with Alzheimer’s. During that time I realized that every person is unique, and that there is always something to learn from every one of him or her. As I learnt from Maria with this anecdote I want to share with you:

One morning I entered Maria’s room, she had a gossip magazine on her bedside table. On the cover page was Mr. X (a famous politician). As every day, I asked her how she was feeling, how she had spent the night and how the previous evening had been. She told me her daughter had brought this magazine for her. She also told me that Mr. X had been her university classmate as well as her suitor.

I doubted weather the story was real or just the fruit of her imagination, nonetheless I have always understood that the relationship with the caregiver, me, can never be one of incredulity; there is no point in telling her that her story is a nonsense, no matter how absurd you may find it is. Who are we to break the happy feeling of telling that story on and on!

A few days later, Mr. X appeared on the news again, because he had, unfortunately, passed away.

That morning, as I was assisting María just like every morning, she spoke to me about him again and told me how sad she was for his fatal ending. It was she who took some of the heat out of the issue saying: “poor him, he was very old and he was very sick”. I changed topics.

During a staff meeting after a few days, I learnt that Maria had been a classmate of Mr X. Since that day, I am well aware that the stories told by people with or without Dementia can or cannot be real, but they are true for them and that is what matters. We have to respect that.

PS. The name “Maria” is invented but the story is real. And this is a gift that we, caregivers, receive from Dementia patients. We give them love and affection without their being part of our lives, and they finally become a part of it, in a way.

Maria: wherever you are, receive this big hug from Juan, as she used to call me. I will never forget you. Thank you for helping me improve as a caregiver and as a Person.

Joan Chias

@jfchias

A moving book for living with Alzheimer’s

There are books that change our lives, and there are books that can help us in difficult moments, like when we are diagnosed with Alzheimer’s or if we have a person we love with this illness. “I’m still here”, by John Zeisel, is one of these books that help and inspire…

Written by a Ph.D., president and co-founder of Hearthstone Alzheimer Care, this book is very inspiring because it offers a different point of view about Alzheimer’s and dementia in general. Dr. Zeisel’s shows the possibility and benefits of connecting with an Alzheimer’s patient through their abilities that don’t diminish with time. Even with Alzheimer’s, people can understand music, art, facial expressions, and touch. By harnessing these capacities, and by using other techniques, it’s possible to offer the person a quality life with connection to others and to the world.

“The person is there. The person knows she’s there. It is up to others to remember and recognize this always. As the disease progresses, other people are the keepers of that person’s personhood. Those who overlook this contribute directly to the person’s anxiety, agitation, aggression and apathy. Acknowledging the person by words and actions reduces these symptoms.”

John Zeisel has a foundation with the same name of the book, where he develops and evaluates innovative non-pharmacological approaches for people with cognitive challenges. They’ve been more than a decade focusing on creating and implementing inclusive, community-based arts and culture programming.

Which books have helped you? Tell us about one of them! Be social and leave a Reply!

We’ve got an appointment for December: “How you are to me”

alzheimers

I often lose myself on the Internet, browsing from one website to another, until I realise I have wasted half an hour without achieving anything. But other times one “magic click” puts me in touch with what I had hoped for and fills me with inspiration.

That is what happened to me last week, when I came across Evan Bass’ project on a crowdfunding website via which they were trying to source the funds they need to carry it out. It is a film. This is how they describe their project:

The short film centers on a couple, one living with Alzheimer’s and the other his wife who is his 24-hr caregiver. The story is a single day in their lives, at the crucial point past the early stage of the disease, when the caregiver is at the point of being overwhelmed from what she can handle solely on her own. The story follows the difficulties of communication but also highlights the pure joy that can still be found even when someone is in a later stage of the disease. From the realities of day to day living with the disease to the use of arts and earlier life experiences to create connections, the story is the roller coaster that is the average day of someone living with Alzheimer’s and for someone who is a caregiver. And yet, that is not all there is to this story, at the same time the film also has the additional layer of integrating in techniques, when utilized, that help people better connect and communicate with individuals with Alzheimer’s

Yes, this is the type of initiative so much needed in the world of Alzheimer’s and other similar dementias.  Because not only do we have to create awareness about how difficult it is to live with or look after someone with this disease, but we must go far beyond this and learn to relate to each other in different ways. By so doing we will discover the “pure pleasure” of a more honest and profound connection that can take place between two human beings.

If you have some money in your pocket and want to do something worthwhile with it, from Moving your Soul we encourage you to invest it in this wonderful idea.

How you are to me, the Project

Olga Romanillos

Your father is late today

“Hello mum”.

“Hello Darling.  Here I am, waiting for your father who is late today”.

“Don’t worry mum, he must have had a late meeting.  You know he is always longing to leave the office to get home to you. (When she hears this, Maria’s face lights up)”

“Yes, he is a very good man; when we were dating there was never a day when he didn’t come and see us when he left the office and it was a long way away too.  What a man!  (Maria has a big smile on her face)”

“But he’s late today…….I’m going to start laying the table (her expression becomes worried)”.

“Yes mum, let’s go into the dining room, I’m getting hungry”.

“You have always been such a good girl, you take after your father.  By the way, it seems that he is late today”.

“Yes, it’s strange; he must have had a late meeting.  Because he is always longing to leave the office to get home to you. (Maria’s face once again lights up, while her daughter Raquel gently takes her hand and leads her to the care home dining room)”.

It is not unusual for someone with dementia to become immersed in scenes from their past.  At those times – minutes, hours or days – it can difficult for us, their family members, to communicate with them; because even with the best intentions in the world, we think our only option is to correct our loved one’s “error” and bring them back to “reality.”  To our reality.

But, what error?  What is reality other than the present moment?  That sigh that follows on from the previous one and that never returns and never left.  And what about if we were to travel with our mother to where she is? If she has an 8 year old daughter and is impatiently awaiting her beloved to eat dinner, why can we not open our minds and meet her there?  Let us become that 8 year old girl who, with her mother, excitedly awaits the arrival of her father.  And let us enjoy the brilliance and wonder on Maria’s face when she realises how much her husband loves her.

Susana García

Moving your Soul

A wedding at the care home?

¨Mum’s talking nonsense¨, said Marisol to her sister Juani, ¨she says she has been at a wedding!!¨ ¨Well, don’t worry, she is 92 years old and such lapses are normal..¨

But no; Soledad, the mother of the two sisters was not talking nonsense, even though she is living in a care home where most of the residents suffer from Alzheimer’s or similar dementias.

And the thing is, the day following our wedding near Madrid last June, my new husband and I wanted to share our joy with the residents, family members and staff at the care home where my mother has been living for almost five years.  We put our glad rags back on again, grabbed some bottles of cava and off we went, because our wedding would not have been complete without this second celebration.

Looking at the photo that illustrates this text, I don’t think I need to add any words to describe the special experience that this celebration involved, during which we even repeated our first dance from the day before!

The white dress, the bride’s bouquet, the first dance, the toast… These symbols that in our culture are linked to one of the most joyous rituals, so imbued with significance from the cycle of life, are engraved upon our memory at the very deepest level. A level at which forgetting is simply not possible, despite the cognitive deterioration of people with Alzheimer’s.

Some told us about their own weddings, with tears in their eyes.  Others, with a lost gaze and the closed expression of those who have retired to their own little corner of solitude, broke into a smile that touched our hearts.

How about if we remembered a little more often that people who live in care homes are not parked in life?

What effect would it have on them?

What impact would it have on us?

And why am I speaking about “them” and “us”?

What have we invented that creates separation instead of the togetherness and connection that we all crave?

Olga Romanillos

Moving your Soul

Happiness within misfortune

For some people their lives go by with ups and downs, but they are essentially happy from childhood to later life.  Friends, family, work and also their love lives combine to form a positive vital and chronological whole in which bad times, those that there are, remain eclipsed by the happiness experienced.  This is how my life has been for 75 years, during which I enjoyed a happy childhood, an uneventful adolescence, a settled adulthood and satisfactory work, all of which was crowned by meeting Carmen at University, who would later become my wife and the mother of my two children. All told, 48 happy years together in which, as well as excellent communication, we shared joys, plans, a few uncertainties that I can barely even remember, and all this as a whole gave us a happy life.

When this life was at its very peak, in later life when all the sharp edges have been worn away, when retirement offers freedom without the responsibilities of education, as this is provided to the grandchildren by the children, who we in turn educated, those grandchildren who are such a boon to happiness, however at that precise moment, without any preamble, misfortune strikes. Just when you have made the most plans with which to add the finishing touches to a happy life, everything crumbles around you with the appearance of Alzheimer’s. When you notice a slight forgetfulness in your loved one that then becomes significant, anxiety in the face of the first time they get lost in town, incoherence during conversation, incontinence etc., everything collapses around you, the plans with which to crown a happy life are over and a new stage begins for which you are ill-prepared. The suffering, feeling of guilt and sadness become inseparable companions. When you have spent months experiencing these sensations, you begin to reflect and to approach things differently, within your misfortune you realise that the world isn’t going to end, that it shouldn’t end, that simply a new and final stage has begun, an unwanted one, but one which must be gone through, and that you must not let yourself be consumed by despair. Much strength is required for this and you feel as though something inside you is pushing you onwards and renewing the inner strength you thought lost, adding to this is the lost gaze of your loved one who is no longer there, who no longer exists, her smile dimmed, the contact of her hand, a gentle embrace in which you notice her body close to yours and an almost furtive kiss, like when we were young.

The sensations all this produces are new and lead to a new happiness, different to the life you previously lived, but happiness nonetheless. The feeling of guilt from having taken her to a care home disappears, you accept she is no longer the woman you married; she is a different human being who inspires in you great tenderness and a new kind of love. You are happy taking her out for a walk and strolling hand in hand, having a drink and seeing how happy it makes her, you even notice how she wants you with her when you speak with someone else, as if she were jealous and didn’t want to lose you. Seeing how she reacts when you go and visit her, she probably doesn’t recognise you, but she does recognise in you someone who gives her affection, kindness, protection and tenderness, which makes her smile faintly.  All this softens the misfortune and you get hopeful every afternoon and you begin, even though it seems contradictory, to experience a different type of happiness and love. You return home alone, but the loneliness no longer buries you, it no longer depresses you, there is sadness but it is different now, it is no longer devastating and deep down you are longing for the time to come when you can see her again to experience that new sensation. Being with her is no longer a burden, it is no longer an effort, it is a new romance, it is a new sensation of love which reawakens feelings you thought had long gone.  Deep down you feel happy and joyous, it is happiness within misfortune.

Manuel Costa

Valencia, Spain