Newsletter 6: August 2026

When someone you love develops dementia, life changes in countless visible ways. Daily routines become more complicated. Conversations become different. Appointments, medications, finances and practical responsibilities gradually increase. Most carers expect these changes. They know life will become more demanding.

However, what often surprises carers is a more subtle transformation.

One day, perhaps months or even years into the caring journey, you catch yourself thinking, I don’t know who I am anymore.

This change does not occur in a single dramatic moment or as the result of one event. Rather, it emerges from hundreds of small modifications over time: repeated compromises, accumulating responsibilities, postponed hobbies, declined invitations, and personal dreams quietly set aside.

Over time, many carers come to realise that, while concentrating on another person’s needs, they have gradually lost connection with their own lives.

When caring becomes your whole identity

Although this topic is rarely discussed publicly, it frequently arises in counselling sessions.

Before dementia entered your life, you may have described yourself in many different ways. You were a husband or wife, a daughter or son, perhaps a parent or grandparent. You might also have been a teacher, an engineer, an artist, a gardener, a keen walker, a volunteer, a traveller or someone who enjoyed reading in the garden with a cup of tea.

These roles collectively shaped your identity and defined the person you recognised in your reflection.

Caring does not usually take these identities away overnight.

Instead, these aspects of identity are gradually pushed into the background.

The ongoing demands of dementia can become so pervasive that the caring role occupies nearly every aspect of daily life. Planning, supervising, reminding, comforting, foreseeing challenges, and responding to crises leave little space for other pursuits.

Gradually, conversations shift to focus almost exclusively on dementia.

Your diary revolves around appointments.

The next challenge constantly occupies your thoughts.

Your energy is directed towards someone else’s wellbeing.

Even moments that should offer rest are often interrupted by worry. Over time, the identity of “carer” begins to overshadow all other aspects of self-description. 

Many individuals report that they no longer recognise themselves.

This change does not occur by intention, but rather because life becomes so centred on meeting another person’s needs that one’s own identity gradually recedes.

The quiet losses along the way

One of the first casualties is often pleasure.

Previously, you may have enjoyed activities such as painting, cycling, gardening, singing in a choir, or gathering with friends for lunch. These pursuits were not merely pastimes; they served as reminders of your identity beyond caregiving responsibilities.

As caregiving responsibilities intensify, these activities often diminish or disappear.

At first you miss a few occasions because your partner has had a difficult week.

Then you stop booking them altogether because it feels too complicated.

Eventually people stop asking.

After several months, you may realise that you cannot recall the last time you engaged in an activity solely for personal enjoyment. Confidence can also disappear in subtle ways.

Many carers become so accustomed to prioritising another person’s needs that they cease to attend to their own.

Decisions become centred around one question:

“What does the person with dementia need?“

Far less often, they ask: “What do I need?” After years of placing your own needs second, even acknowledging them can feel strange.

Spontaneity often vanishes too.

Perhaps you once enjoyed taking an unexpected trip to the coast, meeting friends at short notice or deciding to spend an afternoon reading a book.

Now every outing requires planning.

Every absence needs arranging.

Every decision entails considering someone else’s safety, wellbeing or anxiety.

Life gradually becomes structured around problem prevention instead of creating enjoyable experiences.

Many carers express that their lives feel increasingly constrained.

This is not a result of personal choice, but rather because dementia gradually narrows the limits of what appears possible.

When guilt keeps you trapped

Guilt is often regarded as one of the most challenging aspects of caregiving.

You may notice a small part of yourself longing for an afternoon alone, a weekend away or simply an hour without responsibility.

Almost immediately, another voice appears.

“How can I even think that? They need me.”

Wanting space does not mean you love the person any less.

Wanting time for yourself does not mean you are selfish.

Wanting parts of your old life back does not mean you are abandoning the person you care for.

These desires act as reminders that you remain an individual with personal needs.

A common misconception about caregiving is the idea that love necessitates the complete erasure of self.

It does not.

Maintaining psychological health enhances resilience throughout the ongoing caregiving journey.

Attending to your own needs does not constitute competition with your loved one.

Rather, it serves to protect the individual who provides support.

Taking care of yourself is one of the kindest things you can do for both yourself and the person you care for.

The person you were is still there

Sometimes carers tell me,

“I don’t know who I am anymore.“

This view is understandable given the circumstances.

But I often wonder whether something slightly different is true.

It is possible that the person you once were has not disappeared.

Instead, that identity may have become obscured below layers of responsibility.

Imagine placing a beautiful photograph inside a drawer.

Years pass.

More papers are added.

More files accumulate.

Eventually you can no longer see the photograph.

It would be easy to conclude it has been lost.

In reality, it is still there.

It has simply become covered.

Your core identity is essentially unchanged.

The qualities that define you, such as kindness, humour, curiosity, creativity, resilience, and compassion, have not disappeared.

Many of them are, in fact, visible every day in the extraordinary care you continue to give.

What has become obscured are the opportunities to express these qualities through the multiple activities that previously brought fulfilment.

Rediscovering yourself, one small step at a time

Finding yourself again does not require abandoning your caring role.

It may begin with something much smaller.

Perhaps listening to music you once loved.

Walking through a favourite park.

Meeting a friend for coffee.

Reading for twenty minutes before bed.

Picking up an old hobby, even if only occasionally.

Although these instances may appear minor, they serve as important reminders that your identity goes beyond the caregiving role.

You are not only a carer.

You are also the person who laughs, dreams, learns, creates, enjoys and connects with others.

Those parts of you still exist.

These aspects of your identity have simply remained dormant beneath the burden of responsibility.

If you have questioned the whereabouts of your former self, it is important to recognise that you are not alone.

Many carers experience the same feeling.

More importantly, it indicates that, after an extended period of prioritising another person, you have temporarily lost sight of your own identity. 

Gradually, and with self-compassion rather than guilt, it is possible to begin rediscovering the person who has always been present.

It’s understandable that these suggestions are not always easy to follow. Many carers cannot leave the person they support alone, even briefly. Some find that after months or years of caring, they lose interest in activities they once enjoyed. Others notice that friendships fade, or that people feel uneasy talking about dementia and slowly drift away. These challenges are genuine, and they can make self-care seem impossible. But simply noticing these difficulties can remind you that the struggle comes from the demands of caring, not from any failing on your part.

Commitment to self

Every three months, try to pause and think about how you have been doing. Consider what has helped you, how you have managed, and what you might need in the weeks ahead. After that, make one small promise to yourself. This could mean planning something fun, getting back into a hobby, or just setting aside about 10% of your time for your own wellbeing. Looking after yourself is more than a luxury; it is an investment in your health and your ability to keep caring for others.