United Kingdom: John and Stephanie Coulthard

Personal narratives: What's disability to me?
June 2011

John Coulthard is 67 years old and writes about caring for his wife Stephanie who is 62 years old and has Alzheimer’s disease.

Being a carer for someone with Alzheimer’s is like being on a journey. You know it’s going to be a long journey, but you don’t know just how long! Unlike most other journeys, conditions deteriorate the longer it lasts, and actually you want to stop the journey and stay as we are – just here and now!

It’s also about loss

  • The loss of the ability to recall shared past experiences as a married couple of forty years, and as parents of our son and daughter.
  • The loss of the ability to reason, to debate, to express an opinion, or make a decision – Stephanie used to be a bereavement counsellor.
  • The loss of intimacy – our sexual relationship was always terrific and sometimes kept us going when other things seemed to be falling apart. Now it is non-existent.
  • The loss of everyday skills. Stephanie cannot read (she used to read avidly) or write (not even a greeting on a birthday card). She can just manage to sign her name.

It’s about ‘cans’ and ‘cant's’

An interesting thought – one list grows longer as the other grows shorter. Stephanie’s list of CAN’Ts is very long now, and includes can’t go outside alone and can’t find her way around our own home, can’t understand the concept of time, can’t dress or undress herself without help, can’t do any household chores, can’t operate any electrical items including TV/DVD/CD player, can’t understand money and can’t do anything requiring ‘sequencing’.

So what about Stephanie’s CAN list? She can still enjoy her food, spends many happy hours watching TV and listening to music, and she can still negotiate stairs with care. Most of all, though, she can still smile, hasn’t lost her sense of humour and laughs a lot. She appreciates the love and care of her family and enjoys the company and the loyalty of her friends. She offers hugs willingly to those who want to receive them and remains positive and cheerful, always trying to see the good in people.

It’s about stress

Being a carer is very stressful and only those who have experienced it first hand will understand exactly how stressful.

  • The stress which comes with the monotony of routine.
  • The stress which comes with frustration, unpredictability, loneliness and the fear of the unknown.
  • The stress of having to constantly THINK AHEAD, making preparations, avoiding problems and ensuring there is always a toilet roll in place!
  • The stress of realizing that I need to stay fit and well and ALIVE for Stephanie as well as for myself.

So it’s about survival

Yes, I am surviving thus far. Partly because the local Alzheimer’s Society look after Stephanie at their day clubs, twice each week. This gives me much needed time to myself. For one whole hour after she departs, I sit in my armchair and DO NOTHING! A precious hour when I don’t have to think about or do anything. And I’m surviving because despite all of her problems Stephanie never complains. She fully realizes that I am doing all I can to look after her and keep her safe. Remember? ‘For better or worse, in sickness and in health, till death do us part.’ Our promise made in church, 40 years ago.