B for Burden?

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…

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One thought on “B for Burden?

  1. Dear Beth, I think your love for your father shines through, and is beautiful. I hope you don't mind if I comment a little on your post and say that sometimes 'burden' IS the right word and can co-exist with love, and that I think we do need to keep it in mind when talking about caring. My experience is that whether something is a burden or not depends on so many factors. Part is definitely to do with attitude,(yours was and is obviously lovely) but part is to do with personal circumstances, and the prior relationship between the person being cared for and the person caring. Each person with dementia is different, each carer is different. I feel some carers, in some situations,are staggering under a burden and need more support, and the context is not necessarily less loving because they are not experiencing caring as a positive experience. I totally agree with you that love supersedes all burdens, but carers need love too and may not take on the caring role with sufficient self love or outside support to sustain them. I do take your point about the link between focusing on caring as a 'burden' may lead to a sense that euthanasia is a legitimate answer, and I understand your concern and agree with you. My concern, however, is that many carers already feel guilty about not being loving enough, and if we don't accept that caring can legitimately, not selfishly, be experienced as a serious burden, some people may then go on to somehow equate them needing support with not being loving enough and ask for less than they need. In addition, others may judge those needing support as being not being loving, and provision of emotional & physical & financial support for carers will be sidelined. My experience of 5 years looking after my mum in her home whilst she suffered with vascular dementia, depression and heart problems, whilst also looking after my four children and supporting my Dad who had cancer and other problems, was that, even with the support of my lovely husband, it WAS too difficult financially, physically and emotionally. My Dad was determined to keep mum out of a home, and she was terrified of going into one, and I supported them in this, but I wish someone had said earlier on that I didn't have to carry the burden of care alone. I lived off our savings for 3 years because I didn't know I could receive carers' allowance as I lived opposite, not with my parents. The Age UK nurse who saw that I was going under and DID see I was struggling under a burden, was of greater help than the many people who praised me for being a loving daughter but didn't offer support, ask me how I was, or give me space to say I felt overwhelmed. I continue in fact to support my dad who lives opposite me and the caring experience is v different for me. I do a lot for him but in this case I do not feel it as a burden. I am the same person but am having a a different caring experience.I loved both of them. I am v glad I supported my mum, but it was a terribly difficult, isolating experience and I do wish there had been more help. This is my only concern about your post, Beth. I think your emphasis on love is inspiring, but it can also be loving to accept that others, or even ourselves, are truly burdened. I hope you don't mind this long comment. I just know that you are very involved in excellent work as a campaigner and consultant and, as a carer, I wanted to give you feedback. Thank you for all you do.

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