Loss, Love and the Things We Don’t Talk About

Reflections on Grief, Change, Relationships and Human Connection

Mike’s Monthly Thoughts and Reflections

Every Day a Little Death

Stephen Sondheim is my favourite musical theatre composer. One of his songs, “Every Day a Little Death”, appears in A Little Night Music. The title stayed with me because it points towards two subjects we often struggle to discuss openly: death and loss, and intimacy, sexuality and relationships.

Both are ordinary parts of being human. Both can carry love, vulnerability, fear and change. Yet both are frequently hidden behind silence, discomfort or embarrassment. This month, several unexpected experiences brought those themes together for me.

Coming Home to Loss

I returned from a holiday in Rhodes on Bank Holiday Monday feeling relaxed and refreshed. I had deliberately avoided taking much work with me and had prepared September’s online content in advance. It was our second visit to the island, and the warmth and generosity of its people were among the reasons we had chosen to return.

After a delayed flight and very little sleep, we attended a beautiful wedding the following day. Then loss arrived quietly and very close to home.

Tilly, our elderly cocker spaniel, seemed subdued. She was deaf and had dementia, and she chose not to join the younger dogs for their walk. Later that evening, it became clear that she was dying. There was no time for dramatic decisions or perfect goodbyes. We simply stayed with her and cradled her. Tilly had always been my husband’s girl. When he moved close to her face, she still managed to wag her tail.

Her death was not completely unexpected, but knowing that a loss may come does not remove its pain. Tilly had enjoyed a long life and had a memorable personality. She was obsessed with food and once jumped onto the kitchen worktop to steal a steak intended for Saturday’s dinner. She also developed a taste for my husband’s favourite cocktail, a Brandy Alexander. An unattended glass was never entirely safe.

Those memories made us smile, even while we grieved. Perhaps that is one of the strange truths of bereavement: sadness and gratitude, pain and laughter, can sit alongside one another.

Different Courses, Shared Human Themes

The day after Tilly died, my laptop failed. Much of the preparation and course material I had temporarily stored on the desktop became inaccessible. Compared with bereavement, a computer failure may seem trivial, but it brought another form of loss: lost work, lost time and lost certainty.

I had to rebuild materials for three courses: Facilitating Online Research Discussions; Dementia: IntoMeSee: Intimacy, Sexuality and Relationships in Dementia Care; and Dementia: Behaviour – A Challenge or a Gift? At first, the subjects might appear unrelated. As I recreated the work, however, a shared thread became clear. Each course touched on loss, change, relationships and human connection.

In the facilitation course, we explored Bruce Tuckman’s stages of group development. His later stage, Adjourning, recognises that groups also come to an end or experience significant transition. It is sometimes described as Mourning because departures and changes can create genuine emotional responses. Roles shift, relationships alter and what appears as conflict or resistance may partly reflect uncertainty, disruption or loss.

Seeing Behaviour Through the Lens of Loss

In Dementia: Behaviour – A Challenge or a Gift?, I invite learners to consider behaviour as communication. Rather than seeing someone as simply being difficult, we can ask what their behaviour may be telling us about what they are experiencing.

The behaviour may offer a precious clue to feelings held inside: fear, frustration, loneliness, anger, confusion, discomfort or loss. Calling behaviour a gift does not mean it is always easy to understand or respond to. It means we treat it as meaningful and remain curious about the person rather than reducing them to a label.

A diagnosis of dementia can bring many changes. Abilities, roles, routines, familiar places and relationships may all be affected. Families may grieve what has changed while continuing to love and support the person who is still present. The person living with dementia may also experience losses that others do not always recognise.

When we view behaviour through the lens of loss, the question changes. Instead of asking, “How do we stop this behaviour?” we might ask, “What has changed for this person, what might they be feeling, and what do they need from us now?”

Relationships and the Conversations we Avoid

The Dementia:IntoMeSee course explores another area that can be difficult to discuss: intimacy, sexuality and relationships in dementia care. These subjects can become especially sensitive when a person develops a new friendship or relationship, or when an existing relationship changes as dementia progresses.

For relatives, this can bring grief, uncertainty and conflicting feelings. One person attending my course observed, “None of us likes to think of our parents having sex.” The comment was honest and opened an important conversation about our own discomfort, assumptions and boundaries.

We also tend to speak about intimacy and sex as though they are the same thing. They are not. Intimacy may include affection, companionship, tenderness, touch, trust, comfort, shared humour and simply knowing that someone wants to be near us. These forms of connection can matter throughout life.

This does not remove the need for thoughtful practice, consent, safeguarding and sensitive communication. It does remind us that people living with dementia remain people with identities, histories, feelings, rights and human needs.

Pop and Rose

When I was a child, my great-grandfather, whom we called Pop, moved into a care home. He did not have dementia, but he formed a relationship with another resident, Rose. Both were widowed, and they decided to marry on Pop’s ninety-second birthday.

I was about ten at the time. Most of the family were pleased, although my grandmother was horrified, they should want to marry.

I remember being delighted, if slightly bewildered by the outrage. To me, it seemed wonderful that Pop and Rose had found happiness, tenderness and comfort together. Pop did not reach his ninety-third birthday, but I believe his final year was a happy one.

That story stays with me because it asks a simple question: why should the need for affection, companionship and love disappear because someone is older or living in a care setting?

Love at the Centre

I often return to Tom Kitwood’s flower of psychological needs. Its petals include comfort, attachment, identity, occupation and inclusion, with love at the centre. These are not specialist needs belonging only to people living with dementia. They are human needs.

A close relationship may support identity. Holding hands may offer comfort. Companionship may strengthen attachment and inclusion. Caring for someone else may provide meaning and purpose. If those needs are ignored or misunderstood, what we describe as challenging behaviour may sometimes be a response to loneliness, disconnection or unmet need.

What Earlier Work Taught Me

Long before I began working in dementia care, I co-founded an HIV charity and worked through the early years of the HIV pandemic. There were many deaths, but other losses too: health, relationships, employment, financial and housing security, acceptance and, too often, dignity. All of this was intensified by stigma.

When I later entered dementia care, I was struck by some troubling parallels. People could be described primarily as victims or sufferers. Fear and misunderstanding could lead to judgement, isolation and exclusion. The person could disappear behind the diagnosis and the labels.

Both areas of work taught me that silence does not protect people. Compassionate, informed conversation is one of the ways we challenge stigma and recognise the whole person.

Beyond Simple Explanations

During my work in HIV, Elisabeth Kübler-Ross’s writing was an important reference point. Her work is often reduced to five familiar responses: denial, anger, bargaining, depression and acceptance. It is important not to treat these as a fixed sequence or checklist.

Grief is not tidy. People may experience several responses at once, return to feelings they thought had passed, or experience grief in completely different ways.

Loss may follow a death, but it can also accompany a diagnosis, a move, the end of a role, a changing relationship, the departure of a colleague or organisational change. Models can help us notice possibilities. They should never be used to tell another person how they ought to grieve.

Final Reflections

These reflections have left me thinking about the conversations we avoid. We may struggle to speak about death because it reminds us of our own mortality. We may avoid intimacy and sexuality because they expose our assumptions or embarrassment. We may resist talking about loss within dementia because it can be painful to hold both change and continuing personhood in the same thought.

Care workers are often expected to navigate these sensitive human realities while supporting the person, listening to relatives, respecting rights, noticing risk and working within professional responsibilities. Their work deserves recognition, reflection and thoughtful support.

Training cannot provide a simple answer for every situation. What it can do is help us ask better questions, listen more carefully, examine our assumptions and approach difficult conversations with greater confidence and compassion.

Perhaps Sondheim’s phrase stays with us because life contains many small endings as well as the final one.

Roles change. Groups end. Relationships alter. Familiar abilities or routines may be lost. Yet alongside those endings, people continue to seek comfort, belonging, identity, tenderness and love.

Over to you to Release Your Potential

 

Stay Connected

If you would like training, coaching or consultancy to help your organisation explore these issues, I offer a broad range of courses, including Dementia: IntoMeSee: Intimacy, Sexuality and Relationships in Dementia Care and Dementia: Behaviour – A Challenge or a Gift?

Book a Discovery Call and explore your learning and development needs. It’s a friendly, no-pressure conversation focussed on your goals, challenges and the outcomes you want to achieve.