As anyone will know that reads this Blog, I am a Social Worker working in a Neurological Ward for people under the age of 65 with a brain injury. We have some very young people from time to time and with a diagnosis can come a lot of grief and loss.
Many think of grief as being only linked to death of a loved one. However, grief can be much more than that. For those I work with, this can be grief over the fact that they will never have a child. That dreams of a future travelling together with their partner and/or children can be crushed. Dreams of pursuing a career could also be lost. Many of these things people may not realise are sources of grief and loss for the person who is unwell and their family.
For those of us with Parkinson’s and equally for those who support us there can be significant grief and loss. For some it may be the loss of a marriage or partnership through the strain of becoming a carer. For others it may be the loss of an intimate relationship as the condition progresses. It can also be the loss of a person’s image of who they are as a person and their place in the family or at work. Becoming someone who is not seen to be as capable in the workplace can be a significant source of grief and loss.
As Social Workers we refer to a thing called ‘disenfranchised grief’ which is defined as follows.
‘Disenfranchised grief is generally grief that is not usually openly acknowledged, socially accepted or publicly mourned.’
https://www.fhpcc.com/disenfranchised-grief
Just as a brain injury or Parkinson’s in the early stages can sometimes not be recognised, the grief and loss associated with such a diagnosis can go unrecognised too. The partner/husband/wife of a person with Parkinson’s often has their own grief. Grief at losing the future they had planned together. Thoughts of travel and quality time spent together in retirement can be lost and grief experienced as a result. Loss of the ability to share interests that are active such as tramping or dancing or any active pursuit previously enjoyed together can be a significant loss.
There is no ceremony to acknowledge the grief and loss experienced by such a diagnosis. No public acknowledgement of what the person/person’s are going through. This can make the process of grieving very difficult and a very lonely thing. Elizabeth Kubler-Ross had a theory of ‘the 5 stages of grief’ which inferred a linear process that people go through in times of grief. This has largely changed when thinking about grief.
Grief is something that takes different courses for different people. It is not neatly linear, so that you can tick boxes and know that when you get to number 5 you are done. Rather, it waxes and wanes with smells, sounds, occasions, foods and any number of things sparking a memory and a sense of grief.
So for all of us on this Parkinson’s journey, let us recognise our own grief and loss and seek support when we need it. Find someone to talk to if you can so you can have the opportunity to be supported. I believe we cannot move ahead in life if we do not recognise this huge part of our experience. We do not have to constantly focus upon it, but ignoring it will not make it go away. It is likely to continue to be a part of our lives, but hopefully with the right support we can manage to work through it.
My journey with Parkinsons 