Since 2016 when I was devastated with the news that my mother had been diagnosed with an incredibly rare untreatable terminal illness called Corticobasal Degeneration (CBD), I have been on a journey navigating many difficult emotions and practicalities.
Much of the emotional turmoil has been from seeing my mother struggling with the illness especially the loss of her speech and the difficulties that comes with not being able to communicate.
Physically too, my mother is now immobile so it is a loss to not be able to see her cooking in the kitchen, driving, walking or gardening.
Immediately after the diagnosis I spent the first few night and weeks crying myself to sleep. It was a selfishness that I needed to go through to feel the loss of no longer being able to do things with my mother.
Soon after, I felt doubt and anger at the faith I have. I directed my feelings towards a God who is supposed to love and care for humanity. I felt like he was letting my mother down by allowing her to suffer an illness like this. I still struggle with this emotion sometimes but it has become a resigned unknown and I just trust somehow that God has a reason even if it seems unbelievable. If others struggle with this, I highly recommend reading C S Lewis' book 'A Grief Observed'. It continues to be one of the most consoling and rich books I have read about theodicy. If you're more inclined towards the silver screen, you should watched Shadowlands starring Anthony Hopkins. It too is a treat.
Up to October 2019 I was able to continue working in paid employment, first full time and then part time and periodically help my dad care for my mother. My mother had carers and nurses coming into our home to assist her and my father, although this wasn't problem free. As her movement deteriorated even further and the relationships with the external carers broke down, by October 2019 I recognised that it was necessary to give up my part time job and become her full time live in carer. It was something that caused me some feelings of resentment but over and above that I felt and continue to feel a sense of duty born out of love.
Whilst I have some wonderful supportive friends and family, going through something like this is a very specific thing and I haven't really shared much of my experience with them because no matter how sympathetic they may be, no disrespect to them but they really would just not be able to understand the complexity of everything I have been through and continue to going through.
I follow a few people around the world with similar rare illnesses to my mother on social media and this has been some consolation and help. They are able to understand a bit more and the distance means there is no judgement.
The changing family dynamics such an illness brings is one of the most difficult traps to navigate. I've always been a much beloved daughter and since caring for my mother my role has changed. It is a complex entity I cannot explain well.
What I am certain of is that my devotion and dedication to my mother means she receives the best quality and continuity of care possible because she is receiving that care from the person who loves her most dearly in the world. This makes me proud. Proud to be a strong person. Proud to be a loving person. Proud to be a daughter who comes through for her family.
I always say that you have to take things one day at a time. I still maintain that mantra. Burnout and exhaustion are very real things and carers feel and fear them incredibly strongly. However naive it may be, I do not fear them because I know I have the inner resilience to care for my mother for as long as she needs me. The selfish resentment I felt as little as six months ago has now petered out because I understand I am working for a greater good and the purpose and motivation behind everything I do is love.
In the end, I will be proud to say that I sacrificed something of my life to make my mother's days happier during an illness that was not of her making or choosing.
None of us know the road ahead. This is why I think it is so important to treasure your loved ones now, in the present, whilst you can. Love fiercely and let yourself be loved too. That is important. You deserve love. Be grateful for the small blessings you are given every day of your life. Always be kind. Forgive yourself for the small transgressions. You are only human, not divine.
For more information on Corticobasal Degeneration and Progressive Supranuclear Palsy please visit www.pspassociation.co.uk or www.nhs.uk/conditions/corticobasal-degeneration
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