‘Caring for vulnerable family members – at both ends of life’

It all comes flooding back – my experience, decades ago, of caring for 4 youngsters - now that I’m looking after my husband who has Vascular Dementia. Uncannily, the day-to-day challenges and questions are much the same.  Are they hungry? Too warm? Too cold? Are they safe? Are they ill?

Sometimes, worryingly, ‘Help!  Where are they?’

Committed care is not just about providing what’s needed to ensure the wellbeing of loved ones, but about finding strategies for persuasion, when they are reluctant to care for themselves.  Do this, or that, take medication etc. for your own good! Danger alert! Watch out! Mind those steps, that kerb, the heat, the cold …. the Carer in persistent mode of anticipation/protection/prevention of harm – knowing ‘It’s my responsibility’, and this responsibility can weigh heavily, especially when carried alone.  Day-by-day, faced by a cycle of decision-making, one often finds oneself unsure - What’s best? What’s safe? Appropriate? Healthy?

Caring can be a wearying and lonely experience too.  Why not take a break from cooking and eat out at the local pub/restaurant?  No, too difficult and too stressful when behaviour is uncertain, possibly disturbing/offensive to others.

Just as with a young child, caring for an older person with diminishing mental faculties, ensuring they are safe, yet remain connected to Life, is vastly a more demanding role than providing physical care only. Over time, the role causes loss of freedom, even ‘personhood,’ as one’s life becomes absorbed into the life of the vulnerable loved one, limiting energy and opportunity for engagement with others. When visitors do come, conversation may be interrupted, or swiftly cut off by a bored toddler, seeking attention. Likewise, the older person with dementia may try to end a social exchange which they can observe, but, sadly, in which they can play no part.

But there are differences too…

Watching the day-by-day development of a young child is an engaging and enlivening experience, and, as youngsters make progress towards independence and become more responsible for themselves, parents know they can gradually relinquish responsibility. The confident parent will commit to Froebel’s philosophy - as far as possible - to let the children be free to think and act for themselves, seek new experiences and challenges. Encouraging and facilitating this development happens in a mode of positivity and optimism; even if today’s behaviour or situation has been challenging, one can hope for tomorrow and anticipate the milestones ahead: Soon she’ll be out of nappies, starting nursery/school – off to university!  - and the urge for youngsters to communicate with the adults who care for them is always there. However, for elderly family members suffering dementia, their ability to communicate may become ever more limited – their enthusiasm for connection less and less. Thus, this experience is not about positive futures because, even in the most optimistic scenario, care can only be about preventing deterioration, while maintaining the status quo will count as success.

 A loss of capacity for the adult can cause denial of responsibility for themselves, requiring more and more protection from the Carer. At some level, having awareness of, perhaps grieving for, the loss of the person they once were, causes frustration, even anger. And the Carer must bear the brunt of this, for who else is there to blame? In the case of some Dementias, the mind/personality, as it atrophies, may lose empathy.  It’s the Id of the young child ‘living in the moment’, crying out to have immediate needs satisfied. Increasingly, the Carer’s personal needs and plans are scattered and denied.

Statistically, the UK population is around 67 million (2020 figures).  There are 3.78 million children under 4 years of age, and 13.6 million over 70 years of age. This means that, put together, our most vulnerable citizens make up just about one quarter of the UK population and, between 2015 and 2020, the number of the 70+ age group has increased by 15% and rising.

The urgency of who cares for the most vulnerable at either end of life and how best this can be resourced and supported are issues which have ‘The fierceness of now!’  as Dr Martin Luther King once put it. For parents of today, the critical support systems – such as regular visits from a trusted Health Visitor for advice and reassurance and access to Family Centres supplying vital services - are less and less in evidence in most localities, and non-existent in others. Is it because the vulnerable and the powerless mainly don’t vote, that they can be ignored by policymakers?

The invaluable care and nurture that parents give, not least towards establishing the emotional health and wellbeing of their little ones, is undervalued in a society increasingly brainwashed into believing that care by strangers is more beneficial and ‘educational’ than care by a loving parent, or grandparent.

At the other end of life, full time care likewise remains undervalued and unrecognised. For example, there is no card available which says: ‘I am the Carer of X who has dementia, so I’m here to help, to speak for them, accompany them for health/treatment appointments.’ Gaining access to clinicians, one needs to use the word ‘dementia’ to a receptionist, in the presence of the loved one, creating pain and embarrassment all round. With respect to resources, there is woeful non-recognition of the stressful and exhausting and lonely 24 hour/7 day a week job of caring for an elderly family member. Thus, Respite Care to take time out to gather strength and gain replenishment is a scarce resource and, even when accessed, can incur not insubstantial financial cost.

Most will not turn their back on the urgency of caring for a vulnerable family member in need of their love, care, and commitment, even at significant cost to themselves. In summary, the challenges of providing full-time care in the home for loved ones, whether young or old, is:

Insufficiently recognised, insufficiently valued, and insufficiently resourced

A nation’s priorities, expressed through its social policy, should be about setting in place conditions for the best quality of life for all its citizens – not least for the most vulnerable and those who care for them.  Currently, this is not happening.                 

 Dr Carole Ulanowsky