The Timing of a Tide

I hope this month’s title isn’t too upsetting. I wanted something to convey the whole experience of personality loss. It can be harder to deal with than ordinary bereavement.

Those of you looking after your family member or life-long friend will know. Those of you tasked with caring for someone losing or who has already lost themselmselves, may find it hard occupying who you’re working with.

Recently, I was approached by a volunteer with a charity that supports Alzheimers patients. She wanted advice on coming up with activities. This month’s post is my response. For her and anyone coping with anyone with dementia symptoms, e.g. via Lewy Bodies (DLB) – a form of Parkinson’s. I hope it helps.

Colour Joy

(I used to know a lovely lady called Joy.)

 

5 Top Tips

1. Shape activities in the here-and-now in ways that match their long-ago.

Activities that mimic what a person used to enjoy physically. If someone used to work for the Post Office, ask them if they’d like to help you sort through paperwork that needs shredding and paper that can go straight into recycling.

Activities that draw on past knowledge. E.g. Maths quizzes using old money.

2. Make activities sensory.

If someone’s attention / perspective comes and goes, conversation is a challenge. Your own sense of engagement with who you care for needs support from them. Resources that stimulate memories or stories can help. E.g. listenning to old 45’s or 12-inch singles together. (I’m assuming you young’uns out there know what they are. Vinyl is back in fashion after all.)

Activities can also be about the look, feel and smell of something. (D’you know there are some people who still prefer the smell of a well thumbed novel to the feel of a Kindle.)

3. Encourage teamwork.

Maintain, or at least slow the loss of social skills. Anything requiring co-operation is good. Discussing methods for doing a jigsaw puzzle (“corners and sky first”, for example) is unnecessary. It is enough to let the picture emerge as you compare and contrast each piece together.

4. Make it physical first… (As far as possible.)

Gentle movement is enough to keep the circulation going; there’s no need for a sweaty workout down the gym’. How about kicking or throwing a giant sponge ball between two, three or four people? If someone is chairbound, they can still join in if they want.

5. Be present

Be prepared to connect with your patient or loved-one’s reality as they perceive it. N.B: I DO mean “as they perceive it”. And be prepared to be persuaded that their way to do something is the better way!

To better understand what an Alzheimer’s personality goes through, here’s another helpful link.

For more general information and assistance about Alzheimer’s and Parkinson’s, click on the logos below.

alzheimers-logo-desktop

ParkinsonsUK-1b

That’s it for February.

Take care.

The Power of Zen (Part Two)

Spaceballs02

Hello all. I hope you’re as well as can be.

Thank you to the couple of you who’ve emailed and commented on last month’s post.

To answer the question posed by one of you (What is “The Power of Zen” about?) it is about that thing we have that says: “I am”. It’s about that sense we have of being ourselves whatever the state of our brain.

In Part One I explain Zen is an interface – not the whole computer. Those of you who clicked on Zen’s picture may have noted that it gives a running commentry for its / the ship’s systems as they happen. And it is in this way, the ship acquires an ego-like quality.

Here’s a favourite “Blake’s 7” quote:-

BlakeBlake:  Seven of us can run this ship properly.Vila

Vila:  Six, surely.

Blake:  You forgot Zen.

Avon:  You’re not counting that machine as a member of the crew.Avon

Blake:  Oh, what do you say to that, Zen?

Zen:  Please state course and speed.

Blake:  Very diplomatic. Set a course for Centero, speed standard by two.

Zen:  Confirmed.

We have our identity and we know we exist. But how much power over our brain injury does our identity give us if our identity is influenced by that injury?

When we actively own our personality as something more than our brain injury,  to whatever measure possible, we can increase the likelihood of change. Zen’s power is will power.

Existing with a Brain Injury

Another thing I did in Part One of this article is put us in the passenger seat of our spaceship. Why? I’m going to answer with a case example. The clent is fictional. The circumstances are real. Some of you might relate to this example straight-away.

(Justine)

Justine takes medication for her epilepsy. She often needs reminding to drink fluids because when she forgets, she gets really bad headaches. She easilly gets fatigued and doesn’t show much emotion. Although she can hold a conversation much of the time, she gets frustrated when her voice doesn’t produce the words she tells it to. Also, she has difficulty reading and writing.

She says: “I know what I want to write but it’s frustrating. I know where I want to put my pencil’s lines – how to do them – but my brain changes them while I’m writing.”

She goes on to describe both sides of her brain arguing. Justine finds it “fascinating”, “scary…” and “…not really scary… more frustrating”. She is eager to improve.

The extent to which this is possible for Justine is unknown. Coping with the unknown is hard. What Justine is showing us for sure is that she is able to make real-time observations of what she perceieves her brain to be doing. She is frustrated by her lack of control over how her writing looks.

In other words, getting back to the good ship Personality, she is eager to move from her passenger seat to her pilot seat.

How Existential Therapy (E.T.) Might Help

How about we look at Justine’s case in light of the E.T. goals I ended with last month?

(Understand Unconscious Conflict)

Justine has a sense of one half of her brain arguing with the other half. Given the opportunity via therapy, her strength of personality – that bit of her that’s feeling frustrated might get to the bottom of what it is those halves are arguing about.

(Identify Unhelful Defensive / Coping Mechanisms & Discover their Destructive Influence)

I’m unsure how this goal applies to Justine. Perhaps a more applicable goal would be to focus on something practical. With her therapist’s support, she could experiment with aids and techniques to improve letter and word recognition and hand-eye co-ordination for writing.

(Diminish Secondary Anxiety)

If and as her communication skills improve – more and more of her intended words coming out right, her confidence might grow. Getting anxious about being anxious (panicking) could happen less often.

(Righten Restrictive Ways of Dealing with Self & Others)

With better communication and her own creative ways of getting around problems, Justine might help others wanting to help her improve.

(Develop other ways of coping with primary anxiety)

Always, each new achievement raises new unknowns, new possibilities. Fearing the unknown is healthy. Quality “me time” helps. Justine might later develop a new passtime that helps her chill out when she needs to. Who knows?

 

Now for a demonstration. For a quarter hour example of an E.T. session with an ABI client, click here. N.B: You’ll probably want to turn the volume up a tad; the sound quality is rubbish.

That’s all for now. Cheery-oh.

Sean

The Power of Zen (Part One)

Spaceballs01Hello there. Welcome back for what I hope is another entertaining and helpful read.

Imagine you and me in a spaceship. Neither of us know exactly where we are going, but we’re happy to just head out into the galactic lanes and follow a scenic route to the closest picnic planet to lunchtime. Our  ship’s name is “Personality”.

“Who am I?” is one of the most difficult questions we ask ourselves. Here’s another, maybe an even more difficult one to answer: “Where am I coming from?”

Some of us human beings display no e-motion after a brain injury. Some of us even become unaware that we are unaware; we don’t know that we don’t know. (In the second case it’s unlikely we would have the curiosity to ask the “where from?” question at all. Importantly, we would not have the choice to not choose something.)

But let’s assume you and I are still curious. Having a brain injury, we’re blissfully looking out into the depths of Space in our passenger seats on the good ship, “Personality”. Sharing the piloting are Vilayanur Ramachandran and Rollo May.

Neurology

World famous neurologist, Dr. Vilayanur Ramachandran is one of my inspirations. He begins his Ted Talk (“3 Clues to Understanding Your Brain” (approx. 23 min’s) with the following…

He says: “Here is this mass of jelly – this three pound mass of jelly. You can hold it in the palm of your hand and it can contemplate the vastness of intersellar Space. It can contemplate the meaning of infinity. And it can contemplate itself contemplating the meaning of infinity. And there is this peculiar recursive quality that we call self awareness, which I think is the Holy Grail of neuroscience…”

(Already I hear in my mind’s ear, a chorus of 2 1/2 year-olds chanting “But why?!”)

Zen

Anyone remember “Blake’s 7”? Basically, it was kind of Robin Hood / Dirty Dozen in outer space.One of the seven outlaws was a computer expert called Avon. In a remake of the series, he gives an alien computer an “interface” called Zen which allows him and the computer to exchange information; Zen becomes the computer’s personality.

Personality is our awareness and voice in action.  It allows us the chance to know each other.

Existential Therapy

Okay, having stopped off for a bite, or dare I say “byte”, on planet Neurology, back on board our spaceship, psychologist, Rollo May decides to take us for afternoon tea on his homeworld – Existential.

But let’s not go there straight away. Let’s visit next month in Part Two. I’m pooped and I’m guessing you are too. For now, let’s have a quick flick through our metaphorical tour guide.

In it we see the goals of Existential Therapy are:-

  • To understand unconscious conflict
  • Identify unhelful defencive / coping mechanisms
  • Discover their destructive influence
  • Diminish secondary anxiety
  • Righten restrictive ways of dealing with self & others
  • Develop other ways of coping with primary anxiety

Bye for now,

Sean