Inspirational carer gives talk at conference

Barbara Pointon and her husband MalcolmConsidered controversial by some and inspirational by many, Barbara Pointon took the time to share her own personal experience with a diverse audience at the second multi-faith symposium sponsored by the NIMHE Spirituality Project.

Organised by Staffordshire University and held within the Ruxton TV Centre, Beaconside Campus, the conference was attended by representatives from nine of the major world religions and the humanists, with the whole crowd eager to find out her views on the days topic: From the Cradle to the Grave.

A loving wife and full time carer, Barbara Pointon took early retirement from being a Cambridge lecturer to care for Malcolm, her husband, who was diagnosed with Alzheimer’s at the age of 51.

After caring for him at home during his gradually worsening illness of 15 years, the pair became the subjects of an award-winning documentary in 1999, Malcolm and Barbara… A Love Story and the 2007 update, Malcolm and Barbara… Love’s Farewell. 

Her talk The ultimate Life Crisis or a Gateway? A personal perspective, outlined her theories and observations about the way a person with dementia reverts back to a basic state as the illness worsens, but however lost the personality may seem, the spirit and the senses carry on.

She said: “I think that the way the effects of dementia can be measured is the reverse to how a baby’s development can be measured.  If you think of a pyramid of growth, with the essence or spirit awakening as a person comes into the world, followed by the discovery and use of their senses and emotions, then comes the ability to perform physical functions such as walking and talking and finally comes cognition and perfecting of learnt skills.”

“When Malcolm was diagnosed with Alzheimer’s, I noticed that the same pyramid was in use, but it was being slowly attacked from the top, firstly with him losing knowledge and skills until finally, all he had left was his essence and his spirit and he was unable to do anything for himself.”

“Unfortunately, the way many people with severe dementia are regarded by carers is that the less they can communicate or appear to understand, the less ‘trouble’ they are and therefore don’t need as much time spent on them.”

“However, as far as I’m concerned, if anything they actually need more time spent with them as all they have left are their senses and they all need to be used regularly and to their fullest.  Strong flavours could reach Malcolm, he still loved food and even though he couldn’t communicate or feed himself, he would wake up whenever he smelt me cooking dinner.”

“Similarly, although it is felt that sufferers can’t understand you if you talk to them, the sound of comforting and familiar voices is also essential in making them feel safe and loved.  Malcolm was always a big lover of music and even to the end, if a song that he loved were to come on the radio, you would see the tears running from his eyes, but not tears of sadness, tears of love and happiness.”

“Stimulating the senses like this is vital to help them relax and make it known to them that they have that human reassurance.”

Shortly after being diagnosed, Malcolm wrote a diary and left a letter with his doctor requesting that if it came to it he did not want aggressive intervention to keep him alive.  Therefore, when the time came and his swallowing reflex stopped, Barbara sensed that he had in fact given up and it was time for them both to let go and so she decided to let nature take its course and kept Malcolm at home where he could feel loved, safe and comforted to the end.

She said: “Close family called to say their goodbyes and thank him for all of the laughter over the years, before forming a family circle of love around him and cradling him in their arms until the end, to replicate the safe feeling of a newborn in its mothers arms and to let him know that we were all there for him as he decided to let go.”

As both Malcolm and Barbara had been brought up as Methodists and had later found an interest in numerous other world religions, they decided to hold an intimate, inter-faith farewell to Malcolm at their home, with a variety of readings, prayers, personal tributes and music, emphasising the fact that symbolism and familiarity is an important part of life and death, regardless of whether or not a person follows an organised religion.

Weeks afterwards, when Barbara was sorting through Malcolm’s books and belongings, she came across a scrap of paper which Malcolm had written on two years after his diagnosis.  It simply, yet knowingly, read “The only verity is my soul”.

John Battle, MP for Leeds West and former PM’s Envoy to the Faith Communities, also spoke at the second symposium, highlighting the importance of faith and humanity within communities and how followers of faith and other volunteers could help to improve relationships within areas as well as helping the elderly and infirm wherever possible.

Other speakers from the successful day included Staffordshire University’s own Professors Peter Gilbert, Bernard Moss and Paul Kingston, as well as Hifsa Iqbal and VC Dr Christine King.