Vivien describes how she realised she'd become a carer and the impact it's had on her life.
What is your definition of a carer?
A person who supports someone who is elderly, disabled or seriously ill? The NHS definition is: "Anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support." They also state that many carers don't see themselves as carers and it takes them an average of two years to acknowledge they are in a caring role.
I read the NHS definition recently, and the second part really resonated.
In the past seven years my mother was diagnosed with, and passed away from, cancer. During her illness and after her death my father's dementia has become progressively advanced. He moved into the house next door six years ago, after she passed away and it became clear he needed someone nearby to look after him.
Initially it was hardly anything. My father joined my family and me for dinner every evening, often helping with the clearing or washing up afterwards. My brother, who lives about 10 miles away, and I helped with his administration (banking, bills, etc.), arranged and took him to medical appointments, did his washing and cleaning. It was just what you would expect, with a parent in their 80s.
However with the dementia came the little incidents. The countless times my father went for a walk and got lost... for up to 6 hours at a time... then fell over, requiring trips to A&E. The times he went for a drive and could not find his way home. The time he left the tap on and flooded three floors of his house. The time he hadn't noticed the ceiling had fallen down in his living room due to a leak in a pipe. I came to dread every time he left the house, and obsessively followed his every move with the tracker I put around his neck every morning. Worse still, were the times when he had taken his tracker off, and then decided to go for a wander.
My father also became more dependant. Over the years, he gradually lost track of time, so making lunch was something I began to also take over, otherwise he would often forget to eat. The little incidents also became more frequent, and I helplessly witnessed his world shrink dramatically, as he lost awareness, understanding and the ability to communicate.
Was it Obvious?
I guess it should have been obvious, but it took a friend at work to point out I was caring for my dad. Even then, I was in denial for a while. In total, it took me four years to acknowledge my role as carer. I guess I was a little late to the game.
Two years ago, things took a turn for the worse. My father fell over, broke his hip, and as a consequence of the fall, the operation, and hospital stay, his dementia deteriorated dramatically to the point he struggled with personal care. As a result, we have had to put carers in place. Nowadays, we have live-in carers who are with him 21-22 hours a day. I still have my father for the 2-3 hours around dinner time, after my workday is over and all three children are home from school and clubs. So does that mean I am no longer a carer, as in theory, dad slots into my everyday life?
My new role in this ever-changing journey, other than the 2-3 hours each evening, has shifted to more of a co-ordinator of carers, ensuring we have full coverage 365 days a year, telling carers what to do on a day to day basis, ensuring medical appointments are booked and attended, and dad's house maintained.
In it for the ride
Going back to the original question, there was no obvious point in time after which my father could not cope without my support and I became his 'carer'.
It is all a very grey area, particularly since my brother and I had acted as translators for our parents since we were about six years old, to the point that we drafted our own sick notes for school and ordered food at restaurants.
I can only say it is a journey which is ever changing as the dementia progresses, and I am in it for the ride. Personally, acknowledging my role in my father's life, as his carer, helped immensely though, as it helped me acknowledge I was not going crazy.
There were times when I wondered whether I was simply incompetent and not coping with life in general. However, understanding there is this large job, on top of my other roles as mother, wife, friend and employee, helped me clarify in my mind that I am actually doing rather a lot.