This story was kindly submitted to us by Lesley MacCulloch as part of a series to mark Carers UK's 60th Anniversary in Scotland.
Lesley is a full-time carer in central Scotland. She looks after her mum who has dementia. You can find out more about Lesley and her work here on her website.
This is part 2 if Lesley's story - you can catch up with part 1 here.
On the afternoon of Saturday 16 November 2024 I was out the back battering a garden fork so hard against a rock, and with so much rage, that it broke. Only three months earlier I had spoken of mastering mindfulness and turning corners. Only three months earlier I’d been rising out of the tentacles of victimhood and bureaucracy into emotional liberation and … what? Complacency?
Saturday 16 November was three days before my nine-month anniversary as full-time carer for my now 82-year-old Mum and her dementia. Mastering mindfulness and self-care was proving to be an experiential work in progress. I felt like I was going three steps forward and two steps back. It was proving to be a journey of continual self and social awareness, self reflection, and course correction. The humiliating and forsaking reminder that if Mum didn't wake up tomorrow, would I be happy with what I had last said or done. The grounding reality of the vulnerability and truth I see when I look into Mum's eyes.
The tears I could shed for not presenting as that better human being I spoke of becoming, 24/7.
The guilt I could drown in for ever reacting with scorn, impatience, or anger to Mum's vulnerability, inability, dependency, and mesmerising decline.
The knots of sickness I feel inside when I remember I can’t undo what I just said or did.
Yet, having said all that, mindfulness makes sure there is much less of all of this than there used to be. The mastery unfolds, day by day, week by week, as I continue to be conscious of, and own, my words, my thoughts, and my behaviour.
So, what brought me to exploding out in the garden? Three months earlier I’d written of turning a corner. Three months earlier I was calm and taking back control from the system. What I didn't state explicitly, three months earlier, was that at 11.30pm on the night of Sunday 18 August 2024 I had been smashing my fists against, and roaring into, cushions. I had been out the back, kneeling on the grass with my face planted, pounding the ground with everything I had. I had been marching round the block trying to stamp my anger and emotion out of me. If we didn't have neighbours, I would have been screaming. In fact, it was elevating my frustration levels that I couldn’t scream. That, in itself, is oppressive and it added to my constriction – not being able to get explosive emotion out of my body when it needed to come out. Indeed, it is one of the biggest problems in humanity. Suppressed emotions. But that’s a different story.
After I’d been out walking for a while, I felt better and came home and went to bed. My friend was here and had kept Mum safe from my emotions and ultimately my absence.
My grounding daily reminder continued to be that ‘a person with dementia may not remember what you said but they'll remember how you made them feel’.
So what had happened between 19 August 2024 and 19 November 2024? In August, I had shed a layer of deep stress and emotion. I know that when we allow ourselves to feel our feelings, those suppressed emotions start to peel away, just like the layers of an onion. I knew my melt-downs weren’t about anything that was happening in the present. The present was what was triggering the deeper repression inside my body. We all have this. It presents in all sorts of different ways. But that, too, is a different story.
I turned a corner the eve of my six-month anniversary as a full time carer, after my late-night explosion, because getting all that deep stress and those stuck emotions out of my body helped me to come back into balance. To reset and re-centre. To move forward with confidence and assertiveness, and not as a victim. Mum had been being verbally abusive and antagonistic. Very suspicious and intensely paranoid. Convinced I was conspiring behind her back. For fixated hours at a time, for days at a time, for several weeks up until that night on 18 August 2024. She was prescribed risperidone, which did something to help the deep, dark, constant fear.
We travelled along reasonably smoothly after that, for quite a while, through September and into October. But gradually, instead of antagonistic, Mum became very needy and dependent on me. During October 2024 she upped the ante and became intensely clingy. She would physically hang onto me, not wanting to let me go, and literally watch the minutes passing if I went out, impatient for my return, fearful that I wouldn’t, always looking for me. Mum has always been very independent. She didn’t allow us to be clingy children. I found the neediness very hard to take, and immensely claustrophobic, and began to find it very, very difficult to cope with this latest version of her fear. Her pushing me away had morphed into her literally not wanting to let me go. I could feel my insides constricting so much at times from her dependency that it felt like I was burning. It was after weeks of this that I broke the garden fork, and shed the next, even deeper layer of stress and emotional wounding from my body.
It was, and has been from the start, very important to me that Mum doesn’t see my emotional meltdowns, but the aftermath of this one opened my eyes much wider. You see, even though Mum didn't see any of what went on in the garden, nor did she hear it, she felt my anger and frustration so deeply within her own being that she even remembered it the next day. I felt very small indeed.
When I’d come in from the garden that Saturday afternoon, we had had a coffee together and I told her how difficult I was finding everything. We held each other and I cried, and she stroked my head like she was back in the role of being my mum again, and I was back being her wee girl, and she was helping to make it better. She acknowledged – because somewhere inside herself she understood – that she hadn’t allowed us to be clingy children. Somehow, she was able to acknowledge her behaviour and apologise for it, because she has a level of awareness that it’s happening but no control over preventing it.
This is absolutely the most humbling journey I have ever been on.
So, what does any of this have to do with mastering mindfulness? For me, mindfulness is about taking accountability for your actions, and choosing not to be a victim. It’s about looking for the message in every situation. Because I was conscious of everything that I was doing, and I was owning my behaviour, I was taking stock and reviewing after every episode. I review after every day, every interaction, every word I say. I am aware throughout the day of what I’ve said and how I’ve said it. I remember that I choose to look after Mum, and that nothing is happening ‘to me’, everything just is what it is. The other part of mastering mindfulness is being conscious, of becoming more and more present and in the moment, and continually being aware of and contemplating how I can create a better experience the next day, or in the next hour, or in the next five minutes.
During each of my two meltdowns I was conscious of what I was doing, what feelings I was feeling, and that I was finding a way to explode in private. This is what mastering mindfulness is about. It’s not, and is never about not feeling, or not expressing emotions. It’s about allowing ourselves to feel our feelings and express our emotions consciously (mindfully), and choosing not to project them onto other people. When we unconsciously (mindlessly) project our anger, our frustration, our tension, our anxiety, our worry, our irritation, and so on, onto other people, all too often they unconsciously react, and emotional chaos, conflict, and deep disturbances prevail.
The magic of mindfulness is that I continue to get so much deep-seated, repressed emotion out of my body, and safely, that I’m constantly re-centring and re-balancing my nervous system and therefore my whole being. Not by having melt-downs every week, but by paying attention to my feelings, and to who and what I’m being, what I’m saying, how I’m behaving, and how I might be being perceived and felt by Mum. And also by being honest with Mum, and not judging her or pretending to myself that she wouldn’t understand what I was feeling. By still treating her as my mum, as well as a human being – as well as the way I would like to be treated if the roles were reversed – we are both able to speak openly, honestly and freely, and to understand, acknowledge, hug, cry, and move on from hic-cups in a way that is healthy and healing for both of us.
I find that when I’m centred and my nervous system is intact, I naturally have patience, and I don’t have to pretend I’m being patient. When I’m centred, I am present and emotionally available. I accept my situation, and I respect the relationship I am able to have with Mum so much that I feel the honour, the privilege, that is the gift of looking after her. I achieve so much more because I’ve slowed right down, everything is so much simpler, I’ve no weight from stress (because the stress has disappeared somewhere safe, like into the grass, the pavement, the tree, or the garden fork, and not onto somebody else), and the energy is flowing more freely around my body.
I’ve found, with both Mum and Dad, and other people I have spent time with who have lived with dementia, that people with dementia are often much more attuned to their senses, albeit unconsciously. My feeling is that this is because as their brain no longer works the way it’s meant to work, senses that have been mostly numbed throughout their lives become heightened as a way of understanding and processing situations. So, becoming more open and sensitive, along with the loss of inhibitions, can actually make for some deeply moving and very beautiful conversations and experiences with our loved ones. It can also create a lot of pain, as their own emotional wounds start to be unconsciously released.
For this reason, too, I see caring as a journey in mastering mindfulness and personal growth. It teaches us, if we allow it, to look deep within ourselves for what we’ve suppressed, so that we can connect more fully with our loved ones, and move into more of our full potential as human beings.
This story was kindly submitted to us as part of a series to mark Carers UK's 60th Anniversary in Scotland.
You can find the other stories in this series at the links below.