Communicating from what remains

These days we are most specially thinking about our dear friend Bego, one of the souls who gave shape to Moving Your Soul – Another way of living with Alzheimer’s. We want to dedicate a special memory to her, as it is a year ago now that she left us. We herewith copy a text that she published in the blog she wrote for the Economist, in a post that specifically spoke about Moving Your Soul and in which she explained a very endearing anecdote. She left us, but she also continues to speak to us from what remains, from what she left behind… and we will be forever grateful…

“These weeks of absence from writing my blog, have been dedicated to ‘Moving Your Soul. Another way of living with Alzheimer’s', a web project, www.movingyoursoul.com, we have just launched between four female coaches committed to making the world a little bit more of a comfortable place to inhabit. On this website, a lot of testimonials share their experiences of communicating with their family members who are affected by Alzheimer’s or other dementias. What is innovative is that this website emphasizes maintaining communication and a relationship with what remains, not what has been lost through dementia.

I have thought so much about this proposition and, as I need to experience in order to gain insight, I headed to various care homes and centres to find out about the reality of Alzheimer’s and how some people manage to overcome the barrier of what is so terrible and embark on a relationshop with their family member. Some days I would return home happy with the progress of my own research, and others I would return broken by having witnessed scenes of such pain. And one day I met a man, Antonio S. who every afternoon went to visit a woman. They used to be lovers when they were young. Then, he emigrated to South America and continued his life, until he retired, childless, unmarried, and decided to return to Spain.

How thoughtful you are. Both times I have seen you, you have brought flowers!, I said to him one of the days we shared the lift. Are you visiting your wife?

No, and I’m not visiting, he replied serenely and with a very clear gaze. I come to be.

For an instant I thought of the film ‘Son of the Bride’ and felt a tear brimming, and I suddenly asked him “What do you mean by that?”

It’s the difference between coming to see her or to be with her, in the place where she is now, he replied simply.

Please forgive me, but I feel there are contradictions on this point because I don’t know if the woman even knows where she is, I openly declared my doubts.

I have nothing to forgive you, - he said expansively - Only if you listen, touch, feel, be, can you communicate with people who suffer from this illness. They haven’t gone, nor do they wander around like penitent souls in Limbo. They are still here or do you think they are invisible, he raised his voice in protest and waved his hand. It’s like a painting, sometimes the painter doesn’t need to fill in all the outlines to paint a portrait. And yet, the spectator never feels that any lines are missing to complete the work.

I felt a little breathless for a few minutes as I listened to this man of scant height yet immense wisdom and then with a small voice, I said: Is that how you see your loved one?

Yes, it is. The flowers make her enter into the beautiful love story we experienced together and which we have somehow resumed. For me, she is still the brunette who used to sing from the window of her house, back there in Lavapiés. And I don’t need any more lines to know that the beautiful women I once had to leave, is still here.

There are few romantics like you left. Please allow me to call you Antonio, I said.

I only expose it, everyone else silences it because it’s frightening to experience reality as it is. Crude, tough, tremendous, but also very powerful, very beautiful. You have to want to see it. This is what the geniuses do. Transcending moving from where they are, like Picasso. Excuse my simile, but this is my passion, my profession. I was an art history teacher for 20 years.

Do you think we could all experience what you speak of?, I remained curious and hooked on his wisdom.

Yes, I am sure of it. Of course, it requires honesty with oneself and parking our ego. The one that is full of masks and stereotypes. But look, we will all be old one day, decrepit, ugly, wrinkled, forgetful, sick and we will still continue being people. Although in order to remain so we need to be seen, listened to, dignified.

María is the luckiest woman in the world, having a friend who actually sees her, the way you see her.

My regret is not having taken her away from her parents home and taken her with me to Venezuela. So my advice is to always enjoy what remains and what is there right now, as it will always be much more than what has gone. He left the lift and headed for the lounge, where the people with Alzheimer’s were.

Standing in front of Maria, dressed in blue and sat on a chair with her head to one side, he gave her a white lily and said to her:

You are the love of my life, brunette..

Referencia: http://www.eleconomista.es/blogs/coaching-todos/?p=722

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

Loving like children

With my mother it was a progressive physical and mental deterioration; she started to lose some faculties, but there was one that she never lost, in fact it grew, and that was her ability to love and be loved. We were lucky enough to be with her until she was 92 years of age. During my mother’s last few years we once again found that candour, that charm, those cuddles received as a child, and that her fragility allowed us to give back to her. We could stop behaving like adults.  I think of her and I become emotional thinking again about that enormous LOVE and I give thanks for those aged years which enabled us to return to the love we felt as children. Perhaps the role had changed, but we were once again able to demonstrate that love like children, without inhibitions, with cuddles, with laughter and with smiles, with humility.  Thank you, mum.

Patricia Ferrando

Connecting beyond the words

In the words of Dr. Dan Siegel “We come into the world wired to make connections with one another, and the subsequent neural shaping of our brain, the very foundation of our sense of self, is built upon these intimate exchanges.”

Creating and being in relationships is a crucial part of our development, our well being and our identity, our sense of self. We relate to each other by communicating with one another and we all can distinguish the difference between simply transferring information and communicating. When we feel seen, listened to, spoken to according to who we are, it is then that we feel another communicates with us – connects with us, meet us and then a dialogue is possible; when there is a common meeting space with others to express ourselves.
Continue reading

From reason to emotion

I feel especially connected to my father in the moments when I get him to smile, and that tends to happen when he comes to greet me, when I arrive at the home. It also sometimes happens when he shares his jokes with me. His sense of humor is pretty incoherent, but it’s still there.

I can perceive how strong my father’s need to communicate is. To a great extent, he’s aware of his cognitive deterioration; he knows he has difficulty expressing himself and that it’s an effort for everyone else to understand him. My tactic is to be especially attentive to everything he says. He sees the effort, and appreciates it, which helps take the conversation that much further. Knowing what he likes and his points of view also helps me immensely. Thanks to that, starting from words that don’t seem to be coherent, I manage to get what he’s saying and maintain a certain level of dialogue.
Continue reading

Entering her world

Communication ended up being the most difficult part. I have to admit that it was really difficult for me to put myself in her place and internalize that, as the disease progressed, she moved backwards in terms of knowledge, language and behaviour. I never did understand that what she could do one day, with total normalcy, she wouldn’t know how to do the next. I rebelled a few times, and I even yelled at her, thinking that if I said something in a louder voice, she’d understand me better, when nothing could be further from the truth – the impact was actually the opposite.
Continue reading

Skin on skin

Ever since the illness really began (except for those first few moments of denial), our relationship has changed. My mother was always very independent, and was an excellent housewife, in all senses; she could be extremely demanding and authoritarian, but also very tender. Well, that aspect of her personality has gradually been disappearing, giving way to another which is more dependent, but closer to us.
Continue reading