Say the Unsayable

The world is rightly becoming more aware of the needs of people with dementia, and “living well with dementia” is a vital aspiration; but it seems to me that the drive to promote this undoubtedly worthwhile concept can sometimes deny the harsh reality for family carers. 

While it is possible to live well with dementia in the earlier stages and may remain so for some, for others the later stages are a monumental daily challenge, compounded by social and political pressure on family carers to maintain a brave face of positive thinking, “compassionate communication”, and willing self-sacrifice. 

We do them a disservice to pretend otherwise and thus to engender guilt for justifiably feeling overwhelmed, exhausted, angry, resentful, lonely, trapped, scared, and just plain heartbroken at the gradual loss of both the person they care for and the life they shared.  Professionals choose to enter the world of dementia and can likewise choose to leave.  Those whose families are struck by the disease have no such choice.  When dementia comes knocking, it won’t take no for an answer.

Lack of insight – the inability of a person with dementia to recognise their own needs and limitations – is the distinguishing feature that can make this type of caring particularly hard. Outsiders may think of “care” as a series of tasks.  Well, tasks are bearable; you can plan for them and factor them into your life.  I would be happy to undertake any number of tasks for my mum.

What I struggled with was the lack of co-operation or acknowledgement from her (often obstructiveness and fierce antagonism), which meant that I effectively had to go “undercover” to meet her care needs: fearfully rushing to change bed-linen when she had dozed off for five minutes downstairs; putting her clothes in the washing machine when she had gone to bed and getting them in and out of the tumble dryer before she was up the next morning; hastily clearing the fridge of rotting food and replacing it with fresh when she wasn’t looking; calling the doctor, hairdresser, and chiropodist secretly to arrange appointments for her and inveigling her into the car on some pretext; asking the GP for a referral to social services behind her back; hiring a carer to pose as a “health visitor” to check on her in my absence and ensure that she had a meal; and ultimately, when all else became inadequate, arranging a residential care place without her knowledge.  The worst thing I have ever had to do.

It was this suffocating, relentlessly stressful covertness  - not the tasks themselves - that wore me down over the years, together with distressing changes in mum's personality that distorted the previous dynamics of our close relationship.  It is our instinct to protect and nurture those we love.  I chose to look after my mum, in that I would always naturally do whatever I could to keep her safe and well and to make her life happy and fulfilled. But the gradual and mysterious progress of her dementia over the best part of 20 years meant that there was never a conscious point at which I chose to give up my own life in the process.  It just happened – and she has no idea.

In November 2013 I attended the annual meeting of the Dementia Action Alliance in London, at which the Carers' Call to Action* was launched.  One of the speakers was Ray Carver, who talked with admirable candour about the impact of her husband’s young onset dementia.  Like my mum, he remained in denial, and she had the responsibility of all decisions and organisation; like me, she found her whole life subsumed, while he remained oblivious, believing himself to be independent. Formerly a nurse, Ray confessed that her professional background still left her unprepared for the intense emotional trauma of living with dementia.  “I was a confident person”, she said. “Now I don’t know who I am.  I've lost myself.”  I’m sure many family carers will identify with that.

As a freelance scriptwriter in TV drama, I naively thought that my ability to work from anywhere on a laptop would be the solution to mum’s increasing needs.  But I discovered that high stress 24/7 soap writing is not compatible with high stress 24/7 dementia crises (not many jobs are!); and as sole carer with mum necessarily my first priority, I simply fell out of circulation. It wasn’t my decision, and now that mum is in residential care  - the thing I most sought to avoid - I have to pick up the pieces and start again, having lost the most productive years of my career (and personal life).

What seems incredible to me now is how long I soldiered on without knowing or being able to say that my mother had dementia. Although friends noticed that she repeated herself and sometimes mixed up appointments or got confused with money, she functioned reasonably well on a public level to those who would see her for maybe an hour or two at a time; only I was fully aware of the more disturbing symptoms of paranoia, obsessive behaviour, and cognitive malfunction, and had no-one with whom to discuss them and gain some perspective.

By 2007 and again in 2010, I was desperate enough to seek counselling for the utter despair I felt at the all-consuming and apparently manipulative drama our life had become. With no diagnosis of dementia, mum in denial, and no third party to mediate, I came to view these problems as “relationship issues” requiring “boundaries” to preserve my mental and physical health.

Indeed, with hindsight I can see that some of the more extreme paranoid symptoms of dementia can induce behaviours we might otherwise consider to be abusive: intense jealousy, possessiveness, and separation anxiety, leading to the carer’s effective imprisonment in the home and isolation from other family and friends; false accusations of wrong-doing that undermine confidence; round-the-clock harassment by phone, and sleep deprivation; denial of the carer’s own needs and objective reality, leading to a negation of identity.  Ray Carver told how frightened she had been by her husband's out-of-character aggression.

Of course now I understand that my mum couldn’t help these terrible behaviours – they were a product of her confusion and fear, caused by organic changes in her brain.  But for a long time, this was far from clear. 

If professionals ever came to the house, she would appear “normal” for their ten or twenty minute visit – articulate and sociable - and would insist that she was fine, did everything herself, had no carer. She totally believed this herself, and although much of what she said was untrue, they had no way of knowing and would go away satisfied that she was “coping”, when in fact I was on my knees.  Consequently, for a very long time, I did not identify as a carer even to myself, let alone to the authorities.

It took crisis situations to prove to me that this wasn’t a relationship problem – my mum had an irreversible, degenerative illness that no amount of love, effort, or accommodation on my part could solve.  I finally realised that what I needed was not therapy to learn how to modify my own (perfectly natural) distress response to her behaviour, but practical help to support us both with her debilitating disease.  That meant breaking silence.

So please, if any of this is familiar to you from our own experience, don’t try to weather it alone.  Don’t let the years slip by until both you and the person you care for have become invisible.  Take courage and ask for help now. 

And if you are a friend, neighbour, relative, or professional who suspects that someone you know may be living under these conditions, reach out and speak the first word.  They may not initially thank you for breaching that code of silence; but one day they will.  For the sake of those not “living well with dementia” – both those who have it and those who care for them - let’s be brave and say those “unsayable” things.

NB: For an important ruling on information sharing in health and social care, which may assist family carers in discussing concerns with professionals, see The Information Governance Review, March 2013, pg. 119, Principle 7: "The duty to share information can be as important as the duty to protect patient confidentiality.  Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles." 

See also a document published by Carers Trust and the Royal College of Nursing on the Triangle of Care - the best practice partnership between people with dementia, their family carers, and health and social care professionals.

* The Carers' Call to Action was a time-limited campaign to raise awareness of dementia carer issues; it was wound down at the end of March 2015, but its work continues through a new organisation, Tide.

Update 2019: A new charity, Dementia Carers Count, has been set up specifically to support family dementia carers, offering 3-day residential and one-day sole topic courses for respite, education on dementia, coping strategies, practical, legal and financial information-sharing, resilience-building, and peer support.  These courses currently take place in a Birmingham hotel, prior to opening of a national resource centre in 2020-21. More details on link above.

Dementia UK Admiral Nurses and their helpline also offer support, as does UK Alzheimer's Society and its online Talking Point forum (peer support).