It Was Mum’s Fault
Nicolle shares her journey about how her mother influenced her specialism supporting people living with dementia and ignited a passion to spread dementia awareness opening our services to those who are often “hidden” within our communities.
WORDS Nicolle Mitchell
It was mum’s fault that I unwittingly began to specialise in bodywork in a way I had never imagined and inspired me to teach.
Looking back, I see me as a child laughing on the sofa rubbing my thumbs into mum’s stress-tight shoulders, her sat purring on the floor in front of me. Although my short-lived massage was crude, it was enough to release our feel-good hormones like oxytocin and dopamine deepening attachment, trust and connection. These were foundational moments given mum could be emotionally unpredictable, helping us navigate mother-daughter conflicts throughout our relationship.
When I started studying complementary therapy we spent golden, hazy days winding down together by the coast. Mum a willing volunteer trusted me to practice my newly acquired massage skills on her. Once she said, “I feel so selfish. When you’ve finished, I just want you to go back and start all over again.” It highlighted how important nurturing touch was for her even if she hadn’t always found it easy. This boundaried touch enhanced our relationship and my understanding about how important massage could be for those who struggle with affection helping us navigate relationships more smoothly.
Mum got a job a nursing home, and convinced the manager that massage would be beneficial for some of the residents living with dementia, especially those who felt isolated due to lack of visitors or their presentation. At the time there was a widespread lack of insight on how to communicate and meet the needs effectively for a person living with dementia which only worsened agitation. I felt very out of my depth, so motivated by my commitment to meeting my clients’ needs in a way that suited them I read voraciously around the subject. I sought out training but found none within the complementary health sector which was when I decided to develop my own course. I discovered so much especially from my clients about communicating compassionately and meeting them where they were in the moment. I learned to listen deeply, becoming more attuned to nonverbal cues.
Sadly, after mum introduced me to this rewarding work, she too developed a mild cognitive impairment which later progressed into early onset Alzheimer’s disease. She started to struggle at work slipping into depression describing it as being down a dark hole, not knowing how to get out. She was generous about sharing her insights to inform my work especially as she knew I was teaching my peers and receiving recognition for providing the first course of its kind in the UK.
Mum’s regular massage gave her a safe place to share her feelings, be validated and enjoy treatments on her terms. This was substantiated by Kilstoff and Chenoweth’s study illustrating that massage provides connection and improves relationships through feeling understood.
Mum’s disease progressed and her needs changed. What a person can cope with one moment they may struggle with the next, affecting their presentation and mood as they navigate a world with fluctuating cognition.
I clearly recall the treatment where mum no longer tolerated the face cradle and panicked. I gently reassured her we could massage her prone and adjust the couch. Adaptability is key for all clients’ comfort which includes being able to offer alternative ways of working enabling our client to comfortably retain autonomy. This becomes more crucial when the very nature of dementia threatens to strip agency from you.
As mum’s ability declined, I provided respite where opportunities arose to weave reassuring touch into daily routines like intimate care, providing a touchstone of safety when she became distressed. At night a light hand, and gentle voice guided the way as darkness further disoriented her thoughts. Later in my career, Fung and Tsang’s clinical trial confirmed what I knew in my heart, that validating mum’s needs through therapeutic touch helped reduce her turmoil and improved communication.
Mum’s confidence waned and her world shrank. Back massages became unfeasible, and she preferred the ease of hand or foot massages with manicures and painted nails. Sometimes, she would take my hand and rub it saying, “that’s better,” fulfilling her need as a mum to nurture. I often get this response in my treatments with people living with dementia. I think it is vital to allow space for a person to feedback in way that suits them, fulfilling their needs to nurture, acknowledge or reciprocate. The connection we make when reassuring and nurturing another person strengthens our sense of belonging, otherwise our rejection response can present as anger or dissociation. The Nicholls et al. study concludes when touch is initiated by carers or family members and reciprocity occurred, it forms positive relational experiences for both people involved.
Sometimes I get creative with clients, threading in extra aspects to their therapy. I encourage people who attend my course to do the same, e.g. face massages can become a beauty treatment, or a stripped back version of a barber’s shaving routine, creating a familiar context that makes sense and feels safe.
Now as mum experiences the final stages of her disease, her care is increasingly palliative, and my relationship with her is based in our senses. Following her lead is crucial when we touch or vocalise. I knit intensive interaction techniques (vocal reflection) into our natters, reflecting her touch back to her, slowly downshifting the tempo to help regulate her emotions, increasing understanding without words.
I am grateful for mum’s faith in my work, her trust, the insights she shared with me intentionally or otherwise, that listening with presence means we can be guided to fulfill people’s needs aptly. The therapeutic skills and specialism I have developed by listening to mum and my clients who live with dementia, have improved my relationships and service across my whole practice. I have become more inclusive offering my service to people who are often “hidden” in our community. When we consider that dementia has been the leading cause of death in the UK since 2012, it is vital that we open our services up to people to support them to live as well as they can with the disease.
As mum enters the reflexive “Pearl Stage” of her dementia, our space becomes one where comfort, gentleness and a vocabulary of love are the core of our experience together. My anchor hand encompasses hers while my other hand strokes her cheek the way a parent might with their child. Less is more now. One of the more powerful lessons I have learned is that sometimes, it is absolutely right to do less and say nothing, but be with and “when words escape us, touch says it all.”
Nicolle Mitchell
Massage Practitioner and Trainer
Innovator of Massaging Persons Living with Dementia, UK
References:
Fung, J.K.K. and Tsang, H.W. (2017). Management of Behavioural and Psychological Symptoms of Dementia by an aroma-massage with Acupressure Treatment protocol: a Randomised Clinical Trial. Journal of Clinical Nursing, 27(9-10), pp.1812–1825. doi:https://doi.org/10.1111/jocn.14101.
Kilstoff, K. and Chenoweth, L. (1998). New Approaches to Health and Well‐being for Dementia Day‐care clients, Family Carers and Day‐care Staff. International Journal of Nursing Practice, 4(2), pp.70–83. doi:https://doi.org/10.1046/j.1440-172x.1998.00059.x.
Nicholls, D., Chang, E., Johnson, A. and Edenborough, M. (2013). Touch, the Essence of Caring for People with end-stage dementia: a Mental Health Perspective in Namaste Care. Aging & Mental Health, 17(5), pp.571–578. doi:https://doi.org/10.1080/13607863.2012.751581.