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.

Are You REALLY Listening to your clients?

A Touchy Subject

Nicolle Mitchell explores the ethics of touch, consent and boundaries as a modern therapist

WORDS Nicolle Mitchell

“As professionals, we hold a power dynamic, and it’s crucial to take that responsibility seriously”

Touch can be a powerful therapeutic intervention, but it can also be used unsafely, unprofessionally and compromise boundaries. What may feel therapeutic, appropriate and safe for one person may trigger a negative response in another. This is an initial exploration into some of the ethical considerations therapists need to employ to provide an inclusive, safe and person-centred service. Managing a client’s expectations, setting boundaries and allowing room for flexibility to truly meet a person where they are through therapeutic touch requires a broad range of skills, knowledge and understanding.

Setting Boundaries for Safety

Initial Consultations

Setting boundaries is important for building a trusting alliance before a treatment, preventing misunderstandings from the outset of your therapeutic relationship. This process begins with your client’s record card; whether you choose to have them complete it before treatment or opt to do it together over the phone, via video call or face-to-face, you begin to build a safe space for therapy. Personally, I prefer having potential clients complete forms before their treatment. This allows me to carefully review contra-indications, seek further input from other health care professionals if needed and consider how best to work with the client and their wider support system. I also send them a welcome email that manages my expectations in writing, outlining the treatment’s type and length, offering pre and post-treatment advice and providing a link to my terms and conditions – including my cancellation policy. However you choose to conduct consultations, it’s key to remain open and curious about your client’s expectations, clearly communicate the services you offer and agree on the goals for the therapy’s progression and expected outcomes. As with all relationships, you may need to remind clients of these boundaries in a professional manner to retain a safe therapeutic space where you both feel comfortable.

Continued Consent

Before beginning a treatment, it’s important to ensure a person feels a sense of complete bodily autonomy. I encourage my clients to let me know if they feel any discomfort at any point during the session. This includes aspects like the pressure applied, the massage style and the specific areas being addressed. It’s important that they understand they are in control of how they are touched, and that I work within my professional limitations guided by frameworks such as the Code of Conduct. In addition, it’s important to hold in mind relevant laws, such as the Equality Act 2010 and the Human Rights Act 1998, which safeguard both practitioners and clients, outlining rights in terms of how they are treated.

In Nina McIntosh’s book The Educated Heart, she states: “We owe our clients our care and attention. We may not connect with a person right away, but if we cannot imagine ever having a caring attitude toward a particular client, we shouldn’t work with him or her. We need to be on the alert for anything that interferes with our abilities to touch a client in a respectful, non-judgemental way. We are not just touching bodies – we’re touching spirits.” Given that this quote was first written in 1999, to be respectful of the current standards of inclusivity and non-judgmental language, as outlined in today’s Equality Act within the UK, I would apply this statement to individuals using pronouns such as him, her, or they.

Considerations of Touch

Maintaining Sexual Boundaries

As professionals, we must maintain clear sexual boundaries to retain trust and uphold our profession’s reputation. If a client compromises those boundaries and expresses sexual attraction, it is perfectly acceptable to discontinue treatments in a professional manner. Similarly, if we develop sexual feelings for a client, it is our responsibility not to act on them and to cease further treatments if we believe our feelings will impact our professional relationship. A useful framework called The Intervention Model by Daphne Chellos (Benjamin and Sohnen-Moe, 2014) can help navigate such sensitive situations assertively. Consideration should also be given to how we touch our clients off the table, if at all. If you have a high-touch background or are overly familiar, it could send mixed messages and blur boundaries.

We also need to be mindful of the sex or gender with which a client feels comfortable. Historically, some of my clients have shared discomfort with a therapist of the opposite sex or gender, or with the same sex or gender massaging them for different reasons, and some may choose same-sex practitioners to avoid sexual tension. Ultimately, a person needs to feel secure with their therapist, and therapists need to feel safe with their clients. Part of managing this involves conducting a risk assessment and undergoing training to take measures to keep ourselves safe too. After all, we need to feel comfortable about whom we touch; otherwise, we risk not being able to hold therapeutic space well and may inadvertently transfer anxiety onto our clients.

Addressing Intimate Areas and Accidents

If I intend to address tension in a more intimate area, such as the groin, I clearly communicate this during the consultation and during the treatment to ensure ongoing consent. For some clients, touching more intimate places may be inappropriate for a number of reasons. They may not be able to understand your intention, or it may trigger historical abuse.

Accidents happen, and sometimes, we may touch a person in a way that is deemed inappropriate during their treatment. This could include accidentally brushing against an intimate part of their body. Acknowledging and apologising immediately, along with offering to adjust draping to make them feel more secure, can help repair any temporary rupture in trust. Recording such incidents in your notes is a good safeguarding policy. Additionally, it is also worth considering how you touch a person in other ways during their treatment. For example, if you are leaning into someone with your belly, a client may find this disconcerting, even if your intention is to give them a sense of security. Communication is key, especially when introducing something different during a session or when it is the client’s first treatment.

Considering History and Trauma

Issues may arise during the consultation or treatment that highlight a need for sensitivity, particularly when someone discloses experiences such as sexual abuse, rape, assault, neglect, trauma-related stress or struggles with intimacy or eating issues. In such cases, I ask about any areas or types of touch to avoid, emphasising that preferences can be changed at any time, encouraging open communication. It’s key to remember that trauma survivors may experience triggers differently, and what may not be a trigger one day could be on another, depending on their current circumstances.

I also pay attention to non-verbal signs of discomfort, recognising that some individuals find it challenging to express themselves, especially if they have used compliance as a survival tactic. As professionals, we hold a power dynamic, and it’s crucial to take that responsibility seriously, never abusing our position. Regular check-ins, curiosity and a reminder that their comfort is paramount can encourage clients to provide necessary feedback for adjusting or stopping their treatment.

Breaks in the treatment are absolutely okay, as this honours your client’s bodily autonomy and pace. Similar considerations apply to people who have undergone operations, including transgender surgery. Ultimately, we are seeking permission to touch a person at every moment of their treatment, which is why we need to be constantly present.

Offering Further Support

We must always consider the limitations of our role. Collaborating with other professionals, who can provide therapeutic support in other ways, may be appropriate to help clients process or manage their trauma safely. Working with psychotherapists, counsellors or EMDR practitioners can be vital in helping a person’s healing journey. Sometimes, I recommend that clients discuss specific issues with their psychiatrist, acknowledging my lack of qualification in that aspect of their journey. Bodily held trauma can be navigated more effectively when therapists and clients work together.

A psychophysical model, pioneered by Robert Timms, PhD, a psychotherapist, and Patrick Connors, C.M.T., a massage therapist, illustrates the benefits of combining skills and insights to support the healing process. Timms stated: “Often I find clients are better able to make cognitive connections in psychotherapy sessions that follow bodywork sessions. In most cases, the client’s characteristic resistances are lowered, and she or he is more available for therapeutic insight.”

Inclusive Practice

Promoting Equality

Individuals with disabilities or additional care needs may understandably be sensitive to touch due to past encounters with ableist attitudes or a lack of involvement in their treatment and support. To ensure equality of access to our services, it’s essential to consider and address various needs. Simple steps, such as indicating wheelchair access in promotional materials, offering home visits or highlighting trauma-informed practices, contribute to an inclusive environment.

As therapists, it is our responsibility to clearly communicate our intentions and agree potential outcomes in a way the client can understand. This may involve completing additional training in communication approaches such as signing, learning augmentative and alternative communication or developing dementia friendly techniques. I encourage my clients to share any considerations to help them feel more at ease during treatments. In one instance, with an autistic child, even the placement of my oil bowl became a significant factor in creating a conducive and comfortable space for therapy.

Adapting Communication Methods

During a massage, I gently define the area of the client’s body about to be massaged using my hands. This approach is particularly reassuring for individuals with communication difficulties or sensitivity to touch. For example, applying gentle but firm pressure through a towel on a leg communicates my intention to address that specific area. I repeat this action when uncovering the leg, especially for clients who are particularly sensitive, autistic, live with dementia or rely on touch as their primary form of communication. I am always led by the client and, where appropriate, their carers or supporters.

In some instances, we may be treating a vulnerable person, including those whose capacity to verbally consent is partly or completely compromised, such as individuals with dementia. It’s essential to be aware of the signs and signals of non-verbal consent, pausing and validating any expressed distress by checking in with the client. When working with individuals with dementia, addressing agitation with reassurance, a calm demeanour and adapting our approach in line with the client’s wishes can be effective. Seeking input from family and caregivers who know the person well is valuable for understanding unique communication styles. Regardless of how a person communicates, consent must always be voluntary, never coerced and as informed as possible, presented in a way that the client understands best.

Cultural Considerations

Finally, we also need to consider cultural influences around touch when working with clients. Cultures, whether defined by geography, ability, sexuality, work or ideals, represent a collective of people sharing beliefs, behaviours, ideas, values or customs. While certain cultures may have general and historical contexts regarding touch, it is fundamental to treat each person as an individual. Generalisations about different cultures can lead to preconceptions and prejudice, especially considering the presence of subcultures within larger cultural groups.

The key is to remain open and curious about cultural differences, embracing diversity and fostering inclusivity in our practice. For me, what it always comes back to is the importance of building trust, requiring the flexibility to meet each person where they are, while maintaining consistency to convey safety. It’s also about withholding judgement, suspending preconceived ideas and being guided by our clients.

This foundation is created within a relationship, and, as with any healthy relationship, we need to be willing to learn from each other, have humanity when we get things wrong and the confidence to repair and agree on ways forward to ensure continued safety.

Our clients are the experts in their own experiences, often being our best teachers, directing our learning and enabling us to meet their needs more mindfully, creatively and professionally. To achieve this, it’s wise to remain curious, open-minded and to listen deeply with our ears, eyes, hearts, hands and conscience.

Bio: Nicolle Mitchell (MFHT) is a holistic therapist, based in Cornwall since 1998. Although she has a general practice where all are welcome, she specialises in treating people living with dementia, supports people living with cancer and enables people living with additional needs or trauma to enjoy massage. Find out more at thelittlemassageclinic.co.uk

For references, please visit fht.org.uk/magazine-references

References [In house]:

The Human Rights Act. (1998). [online] Available at: https://www.legislation.gov.uk/ukpga/1998/42/contents.

The Equality Act. (2010). [online] Available at: https://www.legislation.gov.uk/ukpga/2010/15/contents.

Benjamin, B.E. and Sohnen-Moe, C. (2014). The ethics of touch : the hands-on practitioner’s guide to creating a professional, safe, and enduring practice. Tuscon, Arizona: Sma, Sohnen Moe Associates, Inc.

Mcintosh, N. and Allen, L. (2017). Nina Mcintosh’s the educated heart : professional boundaries for massage therapists and bodyworkers. Philadelphia: Wolters Kluwer.

Oh Bugger! Pete’s in a rage?

The strung out and overworked carers around him and the duty nurse Steve were all on high alert. You could see their chests rising as their breathing increased pace ready for the fight/flight response being channelled to intervene to keep Pete, the other residents and themselves safe. The next stop would be the reaching for the medicine trolley for some heavy duty “Calms” for Pete.

Pete lived with dementia and in my years of visiting his home he was usually a gentle soul and in recent years had become mostly non-verbal.

Pete wasn’t one of my clients, but I did massage his good friend Percy each week and Pete would often come and sit with us. We would sit together, quietly enjoying each other’s company. I sometimes brought in newspapers or a memory box to share. Both friends enjoyed a paper and Percy particularly used to enjoy going through the items, occasionally perching a hat on my head and feather boa round my neck. We had some giggles about that especially as I sat massaging Percy in my fancy garb.

Anyway, I digress, today Pete whirl-winded past me, shaking his fists in the air and headed straight to a locked door which led to the front foyer and started banging on it. I wondered if he wanted to get out. I kept a safe distance checking with him, “Pete, you seem angry.” I caught Steve’s expression, his eyebrows raised, looking slightly panicked as if to question my feeding into Pete’s outburst. I don’t think the Steve felt comfortable dealing with emotions. The way I saw it though, was that the proverbial can of worms was already open, spilt on the floor and was wiggling away in a frenzy in all directions.

Pete spun round to face me, raised his hands aloft and shook them. Maintaining my distance I asked, “Pete, is it your hands?” Pete, normally non-verbal remember, stated clearly in his anguish, “yes!”

“Oh Pete,” I say gently, “OK, I’ve got something for that,” and I ask if he wants to follow me. As we head to sit in the lounge area, I quickly ask Steve if he is happy for me to give Pete a cream to help with the pain in his hands and, at the end of his tether he agreed with a ‘whatever’ wave of his hand.

I asked Pete to come and sit by me. Percy was already sat down, he was next in line to be offered a massage that day, so we sat next to him. They shared a lovely quiet relationship of understanding and acceptance.

I quickly got to work mixing some chamomile essential oil into a mild calendula cream offering words of reassurance to Pete, explaining what I was doing and why. Once it was suitably mixed, I presented the blended cream to Pete and gestured that he should rub it into his hands to ease his pain. He did exactly that and I monitored his safety while readying to treat Percy. Pete rubbed the cream round and round massaging his own hands.

While he did that Percy had rolled up his trouser legs in anticipation of his treatment and I had got to work massaging his lower legs. After about 20 minutes or so of rubbing his hands together, Pete got up and went about his business calmly.

In a review of hospital patients living with dementia in China, Zhao, Gu and Zhang, (2020), concluded that “long-term massage therapy in combination with aromatherapy, was more significant than other combinations of therapies in controlling behavioural abnormalities.” Now, although I’m not keen on the language in this quote, because I don’t think we should control behaviour but enable needs to be met, I think you get the picture, that massage and essential oil use wrapped up in a compassionate approach is a kinder therapeutic intervention.

Studies by Zhao, Gu and Zhang, (2020); Fung and Tsang; (2017) and Liu, Liao and Song (2022) illustrate how massage can calm a person and reduce carer stress, and that includes professional carers. Feedback I have received constantly over the years is that when I go to work with people, the room calms, quietens and this makes life easier for the carers working there, especially because the effects of the massage last long after the treatment has ended. I think there is a valuable role of therapeutic touch interventions within health and social care settings. These studies also show that a qualified massage therapist could quickly and easily work with teams of health and social care professionals to pass on skills so that we can all be working in more therapeutic ways weaving positive touch into our daily lives.

Acknowledging Pete’s distress and pain was key, as was addressing his pain. Enabling Pete to have agency in alleviating his own distress I think was hugely important given that dementia can strip us of so much control in our lives. Co-regulating then giving Pete space to self-regulate meant he retained his dignity. It also affirmed the power of massage (albeit self-administered) and essential oils and how they can be used to ease pain with their mildly analgesic and anti-inflammatory properties. There are other things we can reach for before we reach for the medicine trolley, or as Kirsty (@Justacarehomeg1) coined it recently, “reach for people not medicines”.

As always, names have been changed to protect people’s identity.

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

Liu, Y.-C., Liao, C.-N. and Song, C.-Y. (2022). Effects of Manual Massage Given by Family Caregivers for Patients with dementia: a Preliminary Investigation. Geriatric Nursing. [online] Available at: https://www-sciencedirect-com.plymouth.idm.oclc.org/science/article/pii/S0197457222001185 [Accessed 2 Jun. 2022].

Zhao, H., Gu, W. and Zhang, M. (2020). Massage Therapy in Nursing as Nonpharmacological Intervention to Control Agitation and Stress in Patients with Dementia. Alternative Therapies in Health and Medicine, [online] 26(6), pp.29–33. Available at: https://pubmed.ncbi.nlm.nih.gov/32088672/

Would I lie to you?

Ian looked utterly bereft. Shocked.

This can’t be right I think as I try to offer him comfort.

I have just told him, again, that his wife died. Ian grieves her loss, again, as fresh as the first time. I feel his anguish. I too am in knots because he had forgotten she’d died and each time he is told he grieves anew.

Ian lives with Korsakoff’s, a condition which comes under the dementia disease umbrella. It’s usually caused by drinking too much alcohol which stops the body getting enough vitamin B1.

Ian usually enjoyed his massage each week and would happily sit while I smoothed away tension he held in his upper back. It was also a chance for him to natter and tell me about himself, his work, his past life. Recently he had been talking about his wife more and asking where she was. I have wondered since if deep down he knew something was amiss, but that the painful truth wisped away before he could fully grasp it.

When I first started working in a nursing home back in the noughties, a staff member gave me a 3-page handout on dementia and how to treat people who lived with it. It was all about reality orientation, telling people living with dementia the truth no matter what. I discovered the hard way that it could hurt a person over and over again. That it was often brutal and left the person in a state of illbeing no matter how gently I tried to speak truth.

After the second or third time of sending Ian reeling into a state of fresh grief I tried another recommended tactic. I tried diverting his attention, but Ian became agitated at being dismissed, and rightly so. As a therapist and fellow human, I felt awful that my client’s wellbeing was being compromised by my approach.

Imagine my relief when I discovered another way to handle Ian’s question. This approach eventually became widely known as “therapeutic lying”. It was deliberately lying to a person living with dementia to avoid hurting their feelings and the consequent fallout.

Therapeutic lying was widely justified, described as lying to be kind. I too adopted this tactic. After all, one professional justified, we lie all the time to our children about Father Christmas. Feeling more comfortable, I adopted the technique and for a while it seemed like a less painful way to navigate a tricky situation.

When Ian asked where his wife was, I would answer that she was at the hairdressers or had gone shopping. I would teach this as an approach in my course, for people living with dementia whose capacity meant they struggled with retaining recent information. Some students rightly challenged me and affirmed those niggles.

This was never more apparent when I used therapeutic lying to appease my grandma who lived with Alzheimer’s & vascular disease. We were trying to take our leave one day, but ensure she was settled first. Grandma wanted to come with us, but having already been out that day, we knew it would be too much for her to come out again. If she did too much in a day it could overwhelm her and she would become increasingly disorientated, confused and anxious. I remember the discomfort of the deception as I tried to soften the anguish of our leaving. She accepted my words on the surface, but I could see she was questioning them. Grandma was shrewd like that, but she was struggling with the details and how to call me out.

When words escape us, we often rely more on our body language, facial expression and tone of voice. When we are not truthful, lies leak out somewhere. So, when our mouths say one thing and our bodies say another, that incongruence screams out. This may be picked up more acutely by someone who has become practiced in non-verbal communication. If incongruence is the message they pick up, trust fails and when trust fails, we don’t feel safe. When we don’t feel safe, our behaviour reflects that (see my previous blog, A Symptom or a Human Response? (Link to dementia care cornwall (massagefordementia.co.uk)).

I think that was what grandma was picking up on, and why Ian was unconvinced. Grandma, Ian, I’m sorry.

I believe now, having listened to people who live with dementia, that when a huge bereavement occurs, those feelings are held in our bodies if not our brains. I think we hold it within our very bones, flesh, cells and chemistry.

Thankfully, I found other approaches such as compassionate curiousity and gentle validation which I feel are kinder yet remain in truth. It was also about me maturing as a therapist, as a fellow human to sit with others’ discomfort, grief, sadness, all the uncomfortable, inconvenient stuff.

Nowadays, depending on the person, I may ask, “Ian, are you missing Sandra? Tell me what you miss about her?” or, “what do love about her?”, “where do you feel it when you’re missing her?” It really changes the power dynamic in the relationship. It can open a therapeutic conversation that enables a person to work through their feelings, rather than holding them inside or channelling them as behaviours which can be misinterpreted as symptoms of dementia.

For me, improving my practice and teaching has been rooted in reflective practice, being endlessly curious especially when something doesn’t sit right and trying new ways. It’s about listening deeply with my ears, eyes, hands, and heart to the experts and most often, that’s the person living with dementia. I am always listening, re-evaluating, and that is why I am always “tweaking the manual”.

With love, Nicolle x

A Symptom or a Human Response?

Doris sits in her wheelchair by the edge of the dining tables, a busy thoroughfare, grasping at people as they walk by her, each one swerving, avoiding her grabbing hands. Each one another painful rejection.

I am stood with a group of carers watching her as I ask to catch up with one of them to get an update about one of my clients.

“Watch out for Doris today,” I am warned, “she’s being really aggressive and lashing out.”

I thank the carer for the warning, observing Doris as she becomes increasingly agitated with each person avoiding her hands hitting out.

Agitation comes under the umbrella of Behavioural & Psychological Symptoms of Dementia (BPSD), such as depression, apathy, wandering and other states of being. Agitation itself means worried or anxious and/or that a person often wants to change their situation through protest or argument. It can present as behaviour which we find difficult to deal with. When you consider though that behaviour is a form of communication conveying unexpressed needs or feelings that may be hard to verbalise, surely it is reasonable to suggest that agitation is not a symptom but a human response to a horrible or scary situation, a response to pain. That pain can be physical, mental or emotional. Maybe the person feels they need to change their situation. I think Doris did.

When we look for the reasons behind the agitation we can think of ways to support Doris to have her needs met more humanely.

Brene Brown considers anger in her book “Atlas of the Heart” as a gateway emotion which masks other emotions. Look deeper, be curious and enquire about the emotion behind anger and we may discover grief, betrayal, disappointment, anguish, guilt, confusion, embarrassment or shame. I could go on, but you get the picture.

I think agitation is similar to anger as a gateway feeling or state, there are emotions or needs behind it.

People who are seen as having symptoms are too often medicalised and then medicated. Who is this serving? Our inconvenience and lack of resources, training, understanding or the person’s needs? Our discomfort at seeing another person in discomfort or pain? Are we stripping a human being of being able to express emotions which may be because they feel rejected, terrified because their reality makes no sense or ashamed because they have lost control of ability to function as they used to? Really all we need to prescribe is time, curiousity, compassion and humanity and where possible enable them to change their situation.

I excused myself from the group of carers and approached Doris, my hands outstretched, a huge smile on my face, “Doris! Hello! I love you!”

Imagine the deep feeling in my chest when she pulled me in and said, “Oooh, I’ve missed you!”

I don’t think it was me particularly that she missed, but what I represented, human connection and love. The feeling that she mattered.

Each time she was avoided she felt the pain of rejection. What happens when we feel rejected, we can counter-reject, defend ourselves by becoming angry or agitated or we shut down and disconnect presenting as what we call a “vegetative” state, another BPSD which I think can most often be prevented with a good old dose of loving human connection. Thankfully, Doris still had fight in her being an ex-union rep and was willing to fight for that connection, trying to tell those around her that her voice still mattered. Someone just had to hear her, really hear her.

I understand that dementia can affect tour brain and in turn that can affect our behaviour or can be seen as a symptom, e.g. delusions, hallucinations and maybe becoming more emotionally labile, but more often than not I absolutely feel that a person’s behaviour is more to do with a natural human response. We need to address this first, before dismissing it as a symptom and we need to learn to sit with that person’s discomfort as we would with a friend or family member, with dignity, respect and with love.

Are you Avialble? (Yes, it is spelt incorrectly!)

It’s 7am on a December morning. I’m checking messages across all my media. This is my best quiet admin time.

The phone rings, but I ignore the unrecognisable mobile number. They tried calling the previous night too.

I see my sister has messaged me and ping her a response. I wonder if maybe she’s changed her number for some reason and ask if that was her calling me adding it was either her or some “dirdy perv” wanting extras. I’m wondering if everything is OK with her, with mum maybe? So the next time the number calls at 7.25am I pick it up thinking maybe she needs to talk.

“Hello,” I say

Instead, I get a breathy man’s voice who I do not recognise, “Hello, who’s this?”

I can feel my Catherine Tate’s inner nan rising inside my head, “Ere we go!” but respond, “hello, who are you?”

“Who’s this?” the breathy man asks again.

“Well, you rang me. Who are you?” an uncomfortable prickle builds inside as my senses establish that it’s one of those calls. Colleagues agree with me that we have learned the subtle tell-tale signs over the decades. My senses are in quiet fight mode.

“This is James,” he says.

“Well James, why are you ringing me?” I say in no-nonsense mode.

“Your number was in my phone,” he says justifying his call.

“Well James, surely you should know why my number is in your phone.”

“Where are you?” he presses.

“Cornwall,” I state keeping it general

“What Newquay?” he asks in a sleepy, groany voice which I feel repulsed by.

“No. Listen James, I don’t know you. You don’t seem to know me. I suggest you remove my number from your phone. Bye James.”

I hang up and immediately block the number.

I sigh. I really could do without this waste of time and energy. I see James also texted me, badly, “Are you avialble? Call out or is it wrong number?…” Does James have any idea how this impacts my mood? Compromises my sense of safety even though I rationalise he is probably too lazy to follow it up with any further predatory type behaviour.

I ping my sister another message saying, “Ah it wasn’t you … I really did have a ‘ditty perv’ called James just call me up.” I’ve tried lightening the moment with one of our ‘familyisms’ as I call them.

James, what you didn’t think about in that moment was that I have other things to think about than your desire for sexual satisfaction. James, you could have been someone from the hospital saying my frail mum had been admitted again. James, it could have been my sister or brother for any number of concerning reasons. James it could have been my vulnerable teen who had recently left home. James did you think about how this impacts other men? How the sensitive ones feel they have to walk on the other side of the road to ensure a woman feels safer, or to change their route so as not to be walking behind a woman on their way home. This behaviour ripples more widely than you thought James.

I understand that Jame’s issues of a sense of entitlement are part of a deeper cultural shame where masculinity has been distilled into unhealthy “power” stereotypes and there is little scope for healthy emotional expression and femininity is objectified and devalued, seen as weak. This shame and entitlement was further highlighted in Ellie Flynn’s brave piece of investigative journalism in Dispatches, Undercover: Sexual Harassment – The Truth #C4SexualHarrassment. However, I still feel anger at James, at all the Jameses I’ve had to deal with. That my colleagues have had to deal with.

I want to be clear as Ellie was clear in the documentary that I gave no indication of wanting to offer anything sexual. I have worked meticulously over the years ensuring all my promotional material gave no inkling that I offered anything other than therapeutic massage. I mithered over every word and image on my websites to ensure that I came across as the professional therapist I am. However, much as Ellie and women should not have to think about how they dress, their routes home or going out after a certain time, I should not have to think so carefully about how I present my service. I don’t believe male body therapists would have to work so hard to prevent sexualised attention.

But still the calls happen.

I monitor the top search terms in my analytics. They make for eye-rolling reading. I won’t repeat them here or the internet may funnel more to me by mentioning them in this blog.

Interestingly, during the last two years, and in particular during each lockdown, the number of dodgy calls sky rocketed. Colleagues reported similar patterns. I put it down to “touch starvation” and “isolation” how some desperate men thought they would take their chances. Again, only thinking of their needs, not the risk they may put someone in. Not thinking for one moment that they are causing me more stress when my anxiety levels were high as they were with most of us during the pandemic. You know mum in hospital, family members having mental breakdowns, money worries, bereavements. You’ve all experienced your fair share of similar stress. I was stressed yes, but also furious!

So I channelled that fury.

I had noticed that when the government rolled out who could return to work, and under what terms for each industry during the pandemic, they used dated terminology that would only inflame the perception of the massage industry (frankly this doesn’t surprise me given the lack of respect this government shows and is a measure of their own debauchery in my opinion). This terminology also filtered down locally to councils embedding the seedy perception further.

I wrote to George Eustice my local MP and Cornwall Council telling them about the work I do in the community and across the UK, including the service and training I provide for people living with dementia. Language matters so I quoted government and council terminology such as “parlour” and “masseuse”, asking them to replace these terms with maybe “massage centres/providers” and “massage professionals”. I copied in my professional association The Federation of Holistic Therapists (FHT) to amplify my voice. The FHT collaborated with other professional associations within the health and beauty industry as well as government to change the wording. Language matters. George got in touch with a Paul Scully MP, Minister for Small Business, Consumers and Labour Markets, and I noticed the language in the government updates changed. Cornwall Council also took the time to change their wording.

So when you hear something that demeans women, be that strong person, call it out. If it doesn’t sit right when you hear, “typical man”, be curious. If you see an eyeroll when someone talks about not sitting within the binary gender “norms” be open-minded. There is more to gender than our external presentation or stereotypes. Let’s normalise a culture of respect. This work starts with ourselves. Collectively it’s about collaborating and joining our voices to send a strong message that respect is nurtured, needed and the next time I answer the phone or walk down the street I am confident that respect is a given. Now there’s a lovely thought.

Names have not been changed to protect anyone.

Sit Down Ted!

She told him for the umpteenth time.

*Ted didn’t want to sit down. Ted wanted to walk, but every time he tried his attempts were hampered. He was becoming quite fed up! Another cup of tea was not going to cut it! I suggested to the lady that maybe Ted, who lived with Korsakoff’s dementia, wanted to walk. He may have had any number of reasons to walk without needing to justify himself; to move his stiff knees, connect with other people, go to his room, go outside or just walk on a whim. The possibilities are endless and as expert Wendy Mitchell stated, “walking might be the only thing they can do that preserves the little autonomy they have.” The lady attending to Ted and I talked about enabling him rather than disabling him.

I don’t know about you but sometimes when I forget stuff, I like to retrace my steps or get on with my day hoping the thought will return to me at some point. In fact, it happened a few times to me just while I wrote this blog. Room to roam, the space in between, movement, it all helps me remember and stimulates thoughts and ideas. The difference is, no-one stops me from having a wander.

Anyway, the next time Ted stood up from his chair, the lady, his carer followed Ted to the bathroom where it became apparent he had needed the toilet.

I understand the dilemma. Carers are overworked, underpaid and often groomed by an institutional residence to practice in ways that carry echoes of control and containment from past decades.  Experience and, “this is how we’ve always done it,” are often worn with pride, quietly commanding respect, deference and compliance even though times have moved on.  It’s hard for fresh faces to challenge current practice and care, trying to create space for more compassionate person-centred approaches.  Also, if as an employee you are not treated in a person-centred way and valued, why would you practice in that way? It takes a lot of energy to challenge and change baked in cultures. Easier to follow precedent, make no waves, after all carers are not paid enough to carry the stress involved to bring about culture change. This, I believe, is where bold leadership is needed at all levels with permission to change culture and see the person before thinking about tick box lists.

My point though, is that it would have been quicker and easier to listen to Ted and accompany him to do what he needed to do rather than respond in a way that caused him to become agitated and restless. Not allowing autonomy, the freedom to make a choice, and then agency, the ability to act may not only be against the law (e.g. Mental Capacity Act 2005, Human Rights Act 1998, Equality Act 2010, Care Act 2014) it is bad for our physical, mental, emotional & social health. Ted utterly had the capacity to get up and walk to the toilet, signalling if someone was able to listen, that he needed the loo.

Imagine if I had not been there, what might have happened. Might Ted’s behaviour have “escalated” expressing increased frustration & righteous anger? Would he have ended up being isolated, sent to his room like a child triggering goodness knows what? Would he have been medicated if his anger escalated? Would he have needlessly worn a wet pad? I wonder.

If Ted’s situation had been met with compassion, curiousity and empathy, I am sure the situation would have panned out quite differently. Imagine if the carer had organisational permission to take the time to ask Ted if they could walk with them, maybe ask for his hand or arm if need be? What if some lightness and humour was enjoyed along the way? Maybe then Ted’s needs would have been met. Not just his physical needs, but his need to make decisions in his life. He would have been treated as an equal with dignity. He would have been moving his body on his terms, after all use it or lose it they say. He would have felt in control of his decisions and this in turn improves mood and mental health. He would have been physically comfortable having met a basic need.

There is always a reason for a person’s behaviour. It is not for us as advocates, supporters, carers or enablers to stop or stamp out the behaviour by the quickest and most convenient means necessary. It is for us all to help a person fill in the gaps, lightly join the dots if needed so the person can continue to enjoy not only autonomy but agency in their lives. Lacking capacity for a person living with dementia isn’t total, it’s an ever changing and fluctuating landscape which we need to tune in to.

The more autonomy and agency we generally have over the little things, the personal stuff, the bodily stuff, the happier we generally are. Whether that be a wish to go and look out the window, go outside, get a drink, talk with someone, be in company or alone, we need to be able to make those decisions and we as supporters, organisations, communities, councils and government need to genuinely facilitate that.

I wonder if we could re-write Ted’s story more from a place of we and let’s, more from a place of power with, rather than power over. From a place of enablement rather than disablement. A place where the person comes before the system …..

“Ted. Hi. It’s me Lydia,” she smiled.

*Name changed to protect person

The Spell of Time Thieves ……. things we can do to reclaim our time and stress less

Recently, I’ve been thinking more about time and the pressure we are under to fit everything in, particularly now the “business as usual” incantation seems to be bewitching us and the strain starts to take its toll again.

I’ve been having conversations with people, some of whom have slipped back all too easily into all the commitments which were stressing them out or making them ill prior to the pandemic. Others have made radical changes to their lives, changing jobs or working fewer hours.

We can’t get time back, but we can counter that which steals our time and energy.

1. Reduce consumption

Up until the end of the 3^rd lockdown, many people kept their costs down as they realise that consumption was really a short-lived antidote to feeling overworked or stressed. Often, we justify shopping with reasons such as “I’m going shopping to cheer myself up”, “because I deserve it”, “it was in the sale”, or “it fits so well” so we buy it because it looks great even though we don’t need more than the 20 jackets crammed into our wardrobe. The glamour never lasts.

Personally, I’ve been re-evaluating what I spend “life tokens” (a me-ism for money) on. I have reduced my freelance work hours and do more of the things which nurture me, like reading, gardening and spending time in nature. I find I don’t need to buy that coffee and cake so much if I am contentedly taking a walk or pottering up our land with a cup of meadowcine watching nature sneak back in. Which leads me onto the next point …..

2. Cast out TV & hug a tree

I am guilty of watching TV as much as the next person. It’s so easy to flump down on the sofa and be entranced by a film or performance. However, sometimes I opt for something different where the magic is more tangible.

To break the spell simply stop, then breathe. Now do this outside. Go to the park, the woods, the forest. Spending time in the company of trees which release phytoncides is even better for us. Phytoncides are chemicals which are found in the essential oils within trees and improve our wellbeing. Essential oils are the parts of a plant which help retain its health, fighting disease and parasites. As the volatile phytoncides are released into the air we inhale them, boost our immunity, reduce stress, lower blood pressure and our pulse rate. A growing body of research (1) (2) is showing that tree huggers were right all along.

3. Accept you can’t do it all & negotiate!

Some of my NHS colleagues are really feeling the pressure of time at the moment as we struggle to get round to seeing patients and reduce waiting lists. I noticed that some of my team who were making positive changes to enhance wellbeing, like taking breaks and leaving on time, have started slipping back towards old culturally toxic habits. Hell, hands up, so have I!

As the waiting lists never disappear (and let’s face we’d be out of a job if they did), this approach is unsustainable. It also disguises the fact that many departments are understaffed. By working extra hours for free, true staffing needs are unable to be measured, nothing changes and the pressure remains. I have started saying “no”. I accept that waiting lists are in the main, indicative of staff shortages and not my personal burden to carry.

If someone asks something of you and it is adding to an already hefty workload, explain you would love to help, but something has to give. Show them your options and agree what needs your focus and what needs to give. This is a great skill to use in your personal life too.

4. Invest time in yourself

I recently recalled a social movement that was promoted 2 or 3 years ago within our local NHS trust called “15 seconds, 30 minutes”. Its aim was to “encourage staff to identify small tasks they can do now, which will save someone else 30 minutes to reduce frustration and increase joy in work”. Well, at least reduce the curses anyway.

It made me think how we could apply this to our health; invest a little time now on ourselves to save time in the longer run. If we break from our work, our stressors, our screens for just a few minutes it can save us getting stressed, then ill & therefore taking more time off sick in the longer term. Economically it saves money too. A healthy workforce is happier more efficient workforce that is less likely to burn out. It is a great way to model healthy boundaries to colleagues and our children – after all we really don’t want to raise a generation of blighted by the scourge of “burn-out”.

5. Limit Social Media – the biggest time thief of them all!

I have been thinking about coming off Facebook for years. I reinforced the enchantment by saying I needed it for work. However, I took time to look beyond the mirror, on whether I needed social media to sustain my work. At present, I am as busy as I want to be and felt that Facebook was a sinkhole for my energy, time, health and me-ness.

I felt connections were only comment deep. My identity is not a fixed avatar. I am so much more than my posts. Alice would understand.

Breaking away from the looking glass that is my screen was hard at first. I had to adjust to not thinking in terms of “what to post on facebook” next, and weaning myself off the dopamine charm of validation. It only took a few days though.

Free of the sorcery of Facebook (which is only there to harvest your info, make you feel inferior, and so sell you more crap you don’t need. – see Point 1.), my mornings, are more relaxed and I am less distracted by all the “stuff”, adverts and information that social media bombards us with constantly. Billy Bragg’s recent song, “Ten Mysterious Photos that can’t be Explained” wisely cites, “you know that you can overdose on information.” It’s true. My mind feels less cluttered, I have more space to think and am enjoying reading books more.

I still Twit & Instagram a bit, taking regular breaks from all tech, but feel that I may well come off those too in future as I indulge more time with myself, family, newts, lizards, finches and the wonder of watching nature and biodiversity sneak back into our field. By the way, I found out that the collective noun for finches is a “charm” of finches. I’ve been watching them weave around the trees we have been planting over the past four-and-a-half years and it’s better than anything I may have missed on social media or the tellybox.

So let’s do it! Let’s break the spells of the time thieves and spend our time and energy wanting less and appreciating more of the vital magic in our lives.

• Li Q, Kobayashi M, Wakayama Y, Inagaki H, Katsumata M, Hirata Y, Hirata K, Shimizu T, Kawada T, Park BJ, Ohira T, Kagawa T, Miyazaki Y. Effect of phytoncide from trees on human natural killer cell function. Int J Immunopathol Pharmacol. 2009 Oct-Dec;22(4):951-9. doi: 10.1177/039463200902200410. PMID: 20074458.
• Chae Y, Lee S, Jo Y, Kang S, Park S, Kang H. The Effects of Forest Therapy on Immune Function. Int J Environ Res Public Health. 2021 Aug 10;18(16):8440. doi: 10.3390/ijerph18168440. PMID: 34444188; PMCID: PMC8394293.

Picture by Luci Downes

Don’t you just love it when you hit it off with someone and are completely on the same page. I do! I also love it when I learn something new and maybe share something too.

Well, I had the loveliest chat with a Shaunna Devine, who is taking a PhD in Psychology / Neuroscience and has been integral to a really interesting study on touch, (felt & observed touch) between care experienced people & non-care experienced people. She was really generous with helping me understand the details of the study’s methodology & results, sprinkled with her own really valuable insights. Have a read of it here:

Frontiers | Childhood Adversity and Affective Touch Perception: A Comparison of United Kingdom Care Leavers and Non-care Leavers | Psychology (frontiersin.org)

Shaunna & I covered so much ground agreeing the importance of boundaries, permission and touch. This is important for everyone, but is highlighted for people who have had negative touch experiences such as abuse or lack of touch through neglect. Shaunna said she felt it was so wrong that children are forced to show/receive affection through touch. I agreed but I confessed how I had to learn this lesson as an adult, having been forced as a child to give uncle or grandma a kiss even if we didn’t want to and how disempowering this was. Of course, as a child, I thought this was normal, but only as an adult did I learn this was wrong through listening to other people & reflecting on my experience. This underpins why I feel it is important to advise clients that they must let me know if something is uncomfortable for them, respecting their autonomy over their body.

At the other end of the scale, I shared a story about when I used to look after children in care, how we found ways to bring positive boundaried touch to a child. He had become used to inappropriate touch and then played this out making other people they tried to connect with feel uncomfortable. I recalled how we looked for opportunities to initiate positive touch to start to break the cycle of abuse.

We talked about how touch helps us regulate our emotions and body. I explained how the relaxation exercise I practice at the beginning of each treatment begins to build in regulation & trust right from the start of their treatment, uniting heart & breathing to help calm the mind & body ready for trusted hands to do their work.

We reflected on how when we are in a good space, that is often when the deeper healing work occurs and positive change can happen, although this can catch us unawares & throw us right off kilter. You know the sort of thing, you are ticking along in life, going through a good patch, maybe a great patch and along comes an old memory or emotion that demands to be addressed right this very minute. This is why therapeutic touch helps to create a safe space between therapist & client to work through difficulties, stress & trauma at a pace to suit them.

I have been hearing more about “C-Tactile afferent nerves” which are nerves which respond to nurturing, caressing touch. Shaunna revealed to me that these nerves are particularly abundant in our forearms & back which is why we respond so positively to these areas being stroked gently. These nerves are considered as responsible for oxytocin release, our love hormone which induces feelings of wellbeing, trust, attachment & boosts our immune system.

Shaunna was so generous in sharing her insights & helping dig more deeply into the fascinating science of touch; how important it is to have loving touch in childhood so we learn ways to integrate this into our relationships as we travel through life. We shared the belief that despite people’s negative experiences there is always room to heal, and that touch based therapy can provide a great space to do just that.

It’s great to meet a like-minded soul who helped me understand and was happy to discuss some of the science behind the work we do, as it brings deeper understanding, validity & credence to the importance of therapeutic touch …. or just touch.

And finally, I loved Shaunna’s passion to give voice to vulnerable young people who have care experience, as well as bring understanding to those who give them support. Shaunna, thank you for the work you do! Based on our chat I’ll be tweaking my manual and lesson plan again!!