I vividly remember as a child the first major bereavement in
my life. The sudden death of my maternal grandmother came as a huge shock to my
whole family and left my mother utterly devastated. As a small child I had
little concept of what this grief and shock really meant, but I do clearly remember
my mother telling me that gran had always said that she, “Didn’t want to be a
burden on her daughters,” like her mother (my great grandmother) had been to her sisters (my great aunts), and that she
would at least be glad that her sudden death had ensured this.
I never thought much more about the issue of burden at the
time. What it really was and what it meant was of little interest to me then,
but it would come into much sharper focus in my teens and twenties as my dad
lived with dementia. Many people expressed their belief that my dad’s dementia
must have been a huge burden on my life and that of other family members, with
my peer group in particular finding the whole notion of having a parent with
dementia just too burdensome to contemplate.
At the time, as ‘friends’ dropped by the wayside, I remember
thinking that one day they may be walking in my shoes. Would it simply be the
case that as adults with their own life, job, partner and children of
their own, that their parent(s) would become a burden that they just didn’t
have the time and energy for? The whole concept of burden is incredibly
interesting, not least because technically we are a ‘burden’ to someone from
the moment we are born until the moment we die.
Looking at burden through that technical viewpoint would
mean that when we are born we are a ‘burden’ to our parents, because without
their care, which takes a considerable amount of time, effort and money over many years, we are unlikely to survive to even make it to adulthood.
We are a ‘burden’ to our teachers who must educate us, and we are a ‘burden’ to
any healthcare professional who is charged with helping us in the face of
serious illness or injury.
As young adults we often become very focused on our own
lives, and of making a ‘new’ life that moves us away from that model of our early
family existence and into being an independent entity. But we don’t stop being a ‘burden’
– technically if we have an employer they could consider us a ‘burden’ given
the rights and protection employees have under employment law. Likewise in our
private lives, any partner we may have could find domestic daily life with us
has elements of being ‘burdensome’. We may even become a ‘burden’ on the state
if we need financial or housing assistance - anyone can fall on hard
times.
In adulthood many of us also start to take on additional ‘burdens’
in the form of having children and beginning the whole cycle of ‘burden’ from a
different perspective. By the time our parents age, many people simply don’t
have the time or energy for another ‘burden’ in their life.
But what is this ‘burden’ exactly? Is it financial? Is it
emotional? Or, when related to someone older, or someone ill, is it about
confronting our own mortality? I suspect that for many people it is a mixture of
many facets. Yet interestingly, despite the effect my dad’s dementia had on my
life, I never saw my dad as a burden. In fact quite the opposite. I saw him as
someone to love and care for in much the same way that he had loved and
cared for me. It was a role reversal, but not a burden.
Of course not everyone views the concept of burden in the
same way. In two recent meetings I attended the word burden came up twice. In one
instance it was in relation to ‘carer burden’, a method of describing the
effects of being a carer to a person with dementia. The other example came in a
discussion about dementia, where a contributor suggested that if they were to
develop dementia they would like the option of euthanasia to make sure that they
didn’t become a burden to their family.
The point about euthanasia is too big for this blog post so
I will tackle it at a later date, but the overarching theme from both of these
references to burden is the perception that:
A) Caring for a person with dementia is a burden and
B) That the burden only ends when the person dies (and
potentially not even then, given the problems that can arise when you are no
longer a carer). This then leads into the thorny area of debating if we should
hasten the death of the person.
This is a familiar portrayal, and for some people these
feelings of burden are their reality – I wouldn’t seek to deny that at all. But
I believe we do people with dementia and those caring for them a huge
disservice if we only view a life with dementia, and a life caring for a person
with dementia, through this stark, dark portrayal of burden.
My experience, and I only speak for myself here, is that
rather than being a burden, my dad taught me more in the 31 years I had with him
than I suspect I will learn in the equivalent next 31. Dad gave me so much, and
showed me the way to use my life and his legacy to make a real and lasting
difference to the lives of others. So, not so much a burden as a joy.
When I talk now to the people in my life who I love the most,
and they (sometimes) express their desire to never become a burden to me, my
reply is that in my mind when you really love someone that love supersedes any
burden. For me, looking at a caring role in the context of love rather than
burden is an infinitely more meaningful portrayal.
Until next time...
You can follow me on Twitter: @bethyb1886
Incensed. Appalled. Outraged. Indeed there are a plethora of
words to describe how I felt on hearing reports of a rise in suspected cases of elder abuse in England, but I’m not sure any of
them accurately do my feelings justice.
What I cannot, have never been able to, and will never be
able to comprehend is what motivates anyone to commit such abuse. Of course you
could equally argue the case for the abuse of children, women, the disabled and
indeed any person, or any animal, in a vulnerable position – it is never, ever
justifiable, and the perpetrators should be held to account for their actions.
Why we have a rise in possible cases of elder abuse is, I
fear, about more than just a growing older population or the opportunism some
may see in that. I would suggest it has as much to do with the societal
approach to ageing, mostly because I see and hear so much in everyday practice
that constitutes the foundations of elder abuse. The demeaning of older people,
the view that they are a drain on resources, complaints that they are a sector of
society that doesn’t ‘contribute’ and that they are simply ‘in the way’.
One of the great arguments against legalising euthanasia is
the concern that it would lead to many older people being pressured into ending
their lives simply because they are at a stage of life when they need more from
‘the system’ than they are currently putting in. This of course conveniently
ignores all the years they did ‘put in’, worked hard and contributed to the
defence and prosperity of the nation, not to mention parenting and grand-parenting
the younger generations we have now.
In our desire to measure so much in monetary terms, we lose
sight of the priceless contribution that our older generations bring to their
communities – their wisdom, their experiences, their link to our past, their
guidance in the present, and their observations on our future. It may be really
simple stuff, but it is incredibly important if we are ever to regain the
community spirit that we’ve lost, and to teach our younger generations about
humility and respect.
I was bought up within an environment that steadfastly
instilled in me respect for my elders. Perhaps this was because my parents were
older when they had me (my mum was 40), or because we had strong ties with
older relatives throughout my childhood (including the great sadness of my
grandmother passing away). Or maybe it’s a simple case of engendering a system
of values – to speak when you are spoken to and for children to be seen and not
heard (my dad’s favourite).
It probably sounds really old-fashioned, but it worked.
Knowing your place as a child within your family means that as an adult you
have a grounding that no amount of money can buy. I’m a staunch defender of our
elders not because my dad lived with dementia for 19 years and became one of
those very vulnerable older people, but because my mum and dad taught me about
the value of generations and the place of each generation within the overall tapestry
of life.
We will all be old one day if good health prevails upon us,
and how do we hope to be treated? As a piece of dirt on a younger person’s shoe,
or as a valued and respected member of the community? Moreover, for anyone with
children, how do you want them to be treated when they get older? Would you be
prepared to tolerate them being neglected or physically or mentally abused
simple because they cannot fight back?
Ultimately the point about elder abuse is that it could
happen to any of us. It isn’t something that only happens to other people. None
of us know what care and support needs we may have as we grow older. We may
hope to never rely on other people, either within our own family or
professionals who are otherwise strangers, but we just don’t know.
Amongst the majority of wonderful care that my father
received, he was subjected to treatment which in my mind was undoubtedly abusive, a view backed up by doctors when he was admitted to hospital
with aspiration pneumonia (he had aspirated on his own vomit five times) and
pressure sores. My dad became the subject of a safeguarding order, and that was
despite having an actively involved family who tried to stop the dreadful
treatment meted out to him. He never fully recovered and passed away four weeks
later.
We know from the scandals at Mid Staffs and other hospital
Trusts that abuse isn’t just confined to care homes, and the exposé TV
documentaries on bad care only highlight certain individual organisations. I don’t believe that the cases of abuse in
people’s own homes that hit the headlines tell the whole story either. My
greatest fear is the abuse we don’t hear about; the people who are in pain,
soiled, sworn at, neglected or isolated. The people who are fearful of having
enough money to pay their bills because someone has conned them. The people who
are being told they are worthless and should just die.
Every single one of those people needs us. They need strong voices to highlight their plight, a person to talk to who will help them, effective whistleblowing procedures, a robust system of regulation from CQC to ensure that they are safe, well cared for and happy, and from everyone
who lives in their community, respect. It costs nothing, but if it was
engendered within all of us, elder abuse and indeed all forms of abuse would
never exist.
Until next time...
