Newsletter 7: September 2026
The Myth of Coping Well
In this edition of our newsletter, we share an article written by Jurgen Schwarz, the founder of Dementia Counselling. He looks into The Myth of Coping Well.
A report from a carers’ group in Somerset reflects on how these groups can offer something rare and valuable.
Jurgen gives you some time for reflection.
As usual, there are three current dementia related articles in the ‘Picks of the Month’.
And Jurgen offers this month’s thought.
The Myth of Coping Well by Jurgen Schwarz
One of the difficulties of long-term care is that the ability to carry on can easily be mistaken for being well.
When someone asks a carer how they are managing, the answer is often reassuringly simple: “I’m coping.”
Sometimes this statement is accurate. However, the concept of coping is complex.
A person may continue preparing meals, organising appointments, managing medication, keeping up the household, and responding to the developing needs of someone with dementia, all while experiencing exhaustion, fear, or intense sadness. Externally, they may appear highly capable, yet internally, their experience can be markedly different.
One of the difficulties of long-term care is that the ability to carry on can easily be mistaken for being well.
The pressure to appear strong
Carers are regularly praised for their strength. Friends may tell them they are doing an amazing job. Family members may say they do not know how they manage. Professionals may describe them as resilient.
Such recognition may provide comfort, especially since much of caregiving occurs without acknowledgement. However, being perceived as someone who always copes can also become burdensome.
Once others regard you as strong, it can become harder to say that you are struggling.
Some carers may also feel that admitting how difficult things have become somehow lets down the person they care for. They may think, Other people manage this. Why can’t I? Or they may worry that talking about exhaustion, anger, or resentment will make others question their love or commitment.
So they continue.
“I’m fine.”
“We’re managing.”
“It could be worse.”
These statements may reflect partial truths. However, they can also serve to shield others, and sometimes ourselves, from the reality of how challenging caregiving has become.
Comparing ourselves with other carers
Comparison can make this pressure even greater.
Perhaps you meet another carer who seems endlessly patient. Someone at a support group appears cheerful despite circumstances that sound much more difficult than your own. You read about a family who have found creative ways of living positively. Such stories may offer hope. However, they can also subtly establish new standards by which we judge ourselves.
We rarely know the whole story of another person’s caring experience. We see a moment, a conversation or a photograph. We do not necessarily see the sleepless night before it, the argument that morning, the tears in the car or the thoughts they did not feel able to share.
Nor are caring situations directly comparable. Dementia affects people differently. Relationships are different. Financial circumstances, family support, physical health, housing and access to services all matter.
Someone else’s ability to cope therefore tells us very little about how well we should be coping ourselves.
When coping hides distress
We need to think differently about what coping actually means.
Coping does not necessarily mean feeling calm or in control. Sometimes coping means getting through today.
A significant risk arises when ongoing functionality conceals underlying distress.
A carer may still be doing everything that needs to be done while progressively giving up friendships, interests, exercise, sleep or time alone. They may become increasingly irritable or find themselves crying unexpectedly. They may feel constantly on alert, unable to relax even when someone else temporarily takes over.
Since all tasks continue to be completed, both the carer and those around them may fail to recognise the extent of the changes.
There is an important difference between managing a situation and being okay within it.
You can be extremely competent at caring for someone and still need support yourself.
What does real support look like?
Support does not always begin with solving the problem.
Many aspects of dementia cannot be easily resolved. A carer may already be aware of respite services, support groups, and the significance of self-care. Reiterating these suggestions without comprehending the specific context can sometimes increase feelings of inadequacy.
Genuine support frequently starts with a simple act: demonstrating curiosity.
How is this actually affecting you?
And then allowing the answer to be complicated.
A carer may love the person they care for and sometimes wish they could escape the responsibility. They may feel grateful for a good day and devastated by what has been lost. They may cope remarkably well one week and feel overwhelmed the next.
None of these experiences cancels out the others.
Practical assistance is highly significant. An afternoon of respite, help with appointments, meal preparation, or another family member assuming responsibility for certain tasks can have a substantial impact.
Emotional support is equally important. At times, carers may require a conversation where they are not expected to reassure others.
Coping is the wrong measure.
Instead of asking ourselves, Am I coping well enough?, perhaps there are gentler questions we could ask.
What is this costing me at the moment?
What am I finding particularly difficult?
What would make this week slightly easier?
These questions do not presume a single correct approach to caregiving. They recognise that an individual can be both capable and vulnerable simultaneously.
There may also be times when recognising that you are not coping is an important form of coping in itself. Saying “I can’t keep doing this on my own” is not necessarily a sign that something has gone wrong. It may be the moment when your own needs finally become visible.
The goal, then, is not to become the carer who manages everything without complaint.
It is to remain aware of the demands that caregiving places on you and to permit yourself to seek support before perseverance becomes the sole measure of your well-being.
Because sometimes the person who appears to be coping remarkably well is also the person who most needs somebody to ask a second time:
“But how are you, really?”
From a Somerset Carers’ Group: “I Don’t Have to Explain It Here” by Jurgen Schwarz
Some time ago, during a carers’ group, the conversation moved to a topic that initially appeared quite ordinary: going shopping.
One carer described the increasing difficulty of taking her husband to the supermarket. He occasionally became disoriented regarding their location, placed unnecessary items in the trolley, or grew impatient when she attempted to expedite their shopping. On one occasion, he became distressed at the checkout because he did not understand why she was paying for the groceries.
She laughed as she recounted the story, and several others at the table joined in when she became quieter.
“What I find hardest,” she said, “is everyone looking at us.”
A few people nodded.
She explained that she had begun to avoid the supermarket during busy periods. This decision wasn’t only due to the convenience of a quieter store. Rather, she sought to avoid others’ attention when her husband made unexpected remarks or became agitated.
“I always feel I should explain,” she said. “I want to tell them that he has dementia and that he can’t help it.”
Another carer immediately responded: “I do the same thing.”
The conversation changed as participants began sharing their own experiences in restaurants, cafés, buses, and waiting rooms. One individual described feeling embarrassed when her mother repeatedly asked a stranger the same question. Another recounted apologising when her husband became impatient with a staff member.
There was no dramatic revelation, and no one present offered a solution that would eliminate these problems.
However, something significant occurred nonetheless.
The first carer looked around the group and said: “The funny thing is, I don’t have to explain it here. That statement remained with me.
The exhaustion of explaining
Caring for someone with dementia often requires frequent explanations. Carers must clarify changes in behaviour to family members, communicate difficulties to professionals, and justify altered plans or differences in the person’s behaviour compared to others’ memories.
Sometimes you even find yourself explaining your own feelings.
Why are you tired? Why don’t you get more help? Why can’t you leave the person for an afternoon? Why don’t you take more time for yourself?
Even well-intentioned questions can leave carers feeling compelled to justify a life that has become increasingly complex.
A carers’ group can offer something quite different.
There may be no need to complete a sentence because others already comprehend its trajectory. Experiences that might seem unusual or embarrassing elsewhere are often met with tolerance rather than surprise. Emotions that are difficult to acknowledge, including frustration, resentment, sadness, or even relief at having time apart, can become less intimidating when someone else affirms, “Yes, I know what you mean.”
Being understood without being judged
This may be among the most valuable aspects a carers’ group can offer.
It is not always advice.
Carers frequently receive advice such as looking after themselves, seeking help, taking breaks, trying specific services, or contacting various organisations. While much of this guidance may be beneficial, individuals may first need to recognise their experiences.
During that group session, no one instructed the woman on alternative approaches to managing the supermarket. Instead, several participants showed that others shared her feelings.
As the session concluded, the conversation advanced. Laughter increased, cups were refilled, and participants began discussing other topics.
The challenges awaiting outside the room remained unchanged. The dementia persisted, and the responsibilities of caregiving had not diminished.
But perhaps for a brief period, they felt less isolated. Sometimes, support is not about finding the right answer.
Sometimes, support involves finding a space where there is no need to explain the question.
Reflective Pause
What has become normal for me that would once have felt very difficult.
Over time, ongoing caregiving can lead to becoming accustomed to situations that initially appeared overwhelming. Take a moment to see what you now manage with ease, and recognise the extent of education and adjustment you have achieved.
Identify one aspect of your daily routine that was initially challenging. Instead of immediately proceeding to the next task, allow yourself an instant to acknowledge the patience, resilience, or expertise you have developed. It is not necessary to feel proud or positive about every experience. Sometimes, simply recognising, “I have gotten good at handling this,” is sufficient.
Picks of the Month
Families hit by long waits for dementia diagnosis
https://www.bbc.co.uk/news/articles/cvgyp2n1e75o
Jon Snow joins calls to No 10 for better early dementia diagnosis and support
Researchers are doing incredible work to find a cure for dementia – but more funding is vital
https://uk.news.yahoo.com/researchers-doing-incredible-cure-dementia-031516534.html
This Month’s Thought
Acceptance does not require contentment with change. Rather, it involves permitting oneself to coexist with an unchosen reality.
Further articles by Jurgen:
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