Resilience and Alzheimer’s

Old woman looking out of a window | Caring for a loved one with Alzheimers | Petros | Resilience

What caring for a loved one with Alzheimer’s disease is teaching me about stress-free living.

Twenty-three years’ ago I did a PhD at the University of York under the supervision of Dr Derek Roger.  I was investigating the psychological impact on staff of working therapeutically with offenders and wanted to know why some staff seemed to thrive whilst others were seriously psychologically injured by their experience.

Derek had been researching stress and emotion for many years, essentially asking the same question, but on a global scale!

Why do some people seem to sail through life unimpeded by the trials of daily living, while others find every hurdle a major mountain to climb?

Derek’s findings led him to develop an extraordinary one-day training programme called The Challenge of Change™. Based on robust research evidence and drawing on psychology, philosophy, neuroscience, physiology and very healthy dose of common sense, in 2002 I became accredited to deliver this training and have been doing so ever since.

Quite simply, the programme is life changing.

Practicing its principles turned me from an anxious, stressed-out climber of daily mountains to someone who can fundamentally navigate most hurdles with equanimity and calm (I hope my family and friends would bear witness to this).  I am so much better off for it.  It is not just the foundation of my daily living, but also of my business and this means for the sake of credibility, let alone my own well-being, I get to practice those principles every day. So, what are they?

Step one is to Wake up

We’ve all heard people exclaim that they feel that they’re sleep walking through their life.  What they’re really saying is that they’re unaware of what’s going on around them because their mind is elsewhere.  If your mind isn’t present, there are only two other places it can be, in the past, or in the future – and usually without any supervision.  An unsupervised mind can get up to all sorts of mischief, and not always of the fun sort.  Instead, it makes up horror stories – the fodder of stress and anxiety and it’s called rumination.  Being awake, or having your mind present, is like having a superpower that halts rumination in its tracks, thereby saving you from a lifetime of misery. Once awake, we can decide what to give our attention to.

Step two is to Control your Attention

Controlling your attention is being able to focus in, or give your attention more broadly to what’s going on around you, it means your mind doesn’t have the capacity to make up its own entertainment.  We are fully in control!

Step three is to Detach

This is quite hard to describe but in its simplest form it’s being able to keep perspective and not become overwhelmed by the emotion of a situation. Imagine being stuck in grid lock when you have a flight to catch, but also knowing that no amount of stressing is going to move to traffic, so you can sit there calmly.  That’s detachment.  We are all capable of it – it just takes practice!

The fourth and final step is to Let Go

I’ve always considered this the ability not to carry around negative emotions, past hurts, or future anxieties. But caring from my mum who has Alzheimer’s has taught me that there is so much more to “letting go” than this and here’s what I mean:

My mum was formally diagnosed six months ago in April 2023, but the symptoms had been present for some considerable time before that.  For anyone NOT familiar with the symptoms, they are so much more than forgetfulness.  For example, one morning within one hour, I had to inform my mum no less than 30 times (I counted) that I was travelling to Leamington Spa later that day. Nearly every inquiry she makes about my day; the well-being of my daughter; how work is going; what I’ve been doing other than work, is on repeat.  And for probably 90% of the time I answer as if for the first time.  Sometimes I’ll tell her that I’ve answered that question a few times and can we talk about something else.  She apologies profusely for, “being a bore” it’s heart-breaking.

Recently, she has become more confused.  I can receive 10 voicemails in quick succession, asking me where she is, telling me she’s run out of loo roll (there are 12 new rolls in the cupboard), panicking because she can’t find her dog (who died of old age a few months ago).  Last night I woke up to 10 missed calls.  She can’t remember making them. I think most people would agree that these circumstances could be beyond stressful. My mum is vulnerable, demanding and dying.  But what this experience is doing for me is reinforcing the steps of the Challenge of Change™ and value of stress-free living.  It has also deepened my understanding them.

When I visit my mum, I take my mind with me.  If my mind goes back to the past and ponders how awful it was last time (because I had to repeat Leamington Spa 30 times in 60 minutes – the name will never sound the same again in my head), or anticipate how difficult it will be this time, I am pre-empting a situation over which I have no control, but so much influence!  Getting impatient and frustrated with mum makes her feel dreadful and why would I want to add to her distress?  So, I try to be fully awake when I’m with her. I answer every question as if it’s the first time she’s asked it because it benefits both of us, and in the wider scheme of things what does it matter if she asks a million times? At least she’s interested!

If I think about losing her, which I inevitably will, it’s horrendous.  Detachment allows acknowledgement of the feelings but stops them becoming overwhelming.  The result is that my mum doesn’t have to handle my distress in addition to her own and for that I’m grateful.

But the step that Alzheimer’s has truly altered my understanding of is letting go.

Because letting go isn’t just about letting go of feelings or painful memories.  It’s about letting go of your sense of “self”, and far from that being scary, it is totally freeing.  When my mum first started showing symptoms, it was often in the form of misremembering.  She might claim no-one had called her for three days, when in fact me, my daughter, her brother and three friends had all logged calls on the group chat.  The drive in me to put her straight, to correct her error, was so powerful that I was unable to resist.  This caused nothing but arguments and pain for us both.  So where on earth did this drive come from?  From a strong sense of needing to be right probably!  But there was no value AT ALL in that course of action and over time I have learnt to soothe my battered ego and just respond as neutrally as possible.  I think I got quite good and was then presented with the next challenge.

Those with experience of Alzheimer’s sufferers will probably have been on the receiving end of fury, vitriol and often very personal, even sometimes physical abuse.  Psychological pain is every bit as real as physical pain. The desire to defend yourself is primal.  Controlling that desire can sometimes take superhuman effort, especially when you’ve turned your whole life around to take care of your loved one and they’re telling you how thoughtless and cruel you are for abandoning them.  So now I think the true meaning of “letting go” is of the need to defend myself. Because the thing is, it isn’t my mum behind the tirade, it’s Alzheimer’s, so what exactly am I defending myself against – a malfunctioning brain?  Then there really is no need.  It’s not about “me”.

Alzheimer’s provides daily lessons in applying the principles of the Challenge of Change™ and has taught me even more about living a stress-free life. 

I’d love to say I practice successfully all the time – but that would be lying.  What I do think is that the principles continue to help me navigate one of the most emotionally demanding and sad experiences of my life with calm and compassion, and more than anything, that’s what my mum needs right now.

Written by Professor Jo Clarke, Director of Petros, find out more about The Challenge of Change™ one-day programme.

You’ll find support and information on Alzheimer’s disease from the Alzheimer’s Society website.

Image by Freepik