In the second of our blog posts for Dementia Awareness Week 2016, a carer talks about his family’s experiences from the time of their father’s diagnosis with dementia to the time of his death.

My father was diagnosed with Dementia/Alzheimer in 2001, we as a family didn’t really know what this meant. Our beloved father passed away 5 years ago.
Before the diagnosis, both the doctors and us thought dad was depressed as with the majority of the Indian Punjabi community family issues always leave people in some form of depression.
Over the years, the family and our father tried our very best to get to the bottom of this problem/disease, but the doctors/consultants just didn’t understand the condition and the impact it would have on our father and the caring family – or at least they certainly didn’t communicate that with my father or the family.
We were determined that we’d get dad better, with endless appointments and dedicated research, no real plan and no real ideas were put forward by the “professionals”. Years passed and it was painful to witness out strong, confident and larger than life father who took great pride in providing security for his family and an abundance of generosity for anyone he met, slowly turn into a helpless individual – “Death by a thousand cuts”
The challenges our father experienced having Alzheimer were great, being a prominent figure in the community and the large extended family, having the stigma associated with mental illness within a community who had (and still has) very little knowledge of the illness and the associated problems. Our father simply couldn’t do the things he wanted to, volunteering work was his passion, going swimming, cooking for the family or simply going for a walk resulted in him not knowing the way back home.
As a prime carer and a son, watching your icon/hero/lifeline, slowly eroding away was very confusing at first and then you were just left with sadness and the questions ‘Why Dad?’
On reflection, after 5 years of dad’s passing, we are just left with wonderful memories and his rich legacy, but also a long list of questions:

  • Why can’t dad remember?
  • Why wasn’t there any explanation from the “Professionals” as to what Dementia/Alzheimer’s was?
  • Why didn’t the medication help?
  • Why was there little support from NHS/Social services/Alzheimer’s Society?
  • Why did the kind lady from the Alzheimer’s Society not have a clue about the services available for our father?
  • Why did the kind lady from the Alzheimer’s Society not have a clue about the cultural differences that some BME patients face?
  • Why did the family not reach out for any external help?
  • Why were there no devices available to track our father when he went missing?
  • Where was the Sikh community support for our father and the family?

Our father was a very fit and exceptionally strong man with a love for wrestling in his early days and the decades of working in very demanding physical conditions in the local foundry – he was in very good health and had always been very strict with his vegetarian diet. The family maintained his strict diet and kept him active as possible throughout his illness. Taking him swimming, gym, daily walks and exercising for his memory… like simple arithmetic and writing out the alphabet.. we didn’t know if these were doing any good or not.. just thought they were good ideas and wouldn’t do our father any harm.
Due to our father keeping himself fit and healthy and over the 10 year care period, the high level of commitment by the caring family for dad, he didn’t suffer any additional illnesses until one day he broke out in cold sweats and a high temperature and was rushed into hospital and passed 6 weeks later. Those 6 weeks left the loving family scarred for life. When our father was admitted to hospital the first thing the consultant registrar said “Due to his Alzheimer’s, if your father suffers a Cardiac Arrest we will not be resuscitating him” – not something we needed to hear when all we wanted to know what was wrong with our father. Our father was treated with little care or understanding, he was in bracket of having dementia/Alzheimer’s and was seen as a burden/drain on the NHS. The levels of negligence by this particular hospital was shocking and still 5 years on too painful to write about. We witnessed at first hand how our father was treated and other dementia patients in the same wards, as a member of the family stayed with him for every minute of those 6 weeks.
We the family are heartbroken at the great loss of our beloved father; we were honoured and privileged to have been given the chance to look after such a kind hearted soul. The professional care providers need to take a good look within themselves to see if they are really providing “care” or too busy looking at spreadsheets and blaming each other!