Wednesday 20 February 2013

Awakenings: The Push-Pull of Letting Go

I suppose I never really believed that Nicholas could live apart from us – that he could feel truly safe and happy with his caregivers fussing over his tube feeds, multiple medications and his endless appetite for exploring sports and technology.  But, I finally accept that Nick IS happy.  He feels safe… until he is ill.  That’s the only time when he still wants me and only me.  Oh, and he still wants Dad for cash and hockey talk.

This new state of affairs – one which our whole family has worked so hard to create – is … strange and even slightly disquieting. 

I remember seeing the film “Awakenings” a story of catatonic patients who ‘wake up’ after being treated with L-Dopa, a form of dopamine, which is sometimes used in the treatment of Parkinson’s disease.  Based on a true story and originally written by the neurologist Oliver Sacks, I was especially moved by the subplot involving one patient whose character is played by the actor, Robert De Niro.  De Niro's character has not spoken or communicated at all in many years, yet every day his mother visits, quietly telling him the neighborhood news and arranging his pillows.  She is mystified when her beloved son wakes up.  He wants to go dancing, to tour the city, to see women his own age…. all without the company of his mother.  So, when the dopamine mysteriously stops working and De Niro’s character sinks back into the oblivion of catatonia, his mother returns to his bedside and sings gently to him, stroking his head.   This is a woman who has given her entire adult life to looking after her son.  She has ‘come to grips’ with a certain, predictable reality.  She does not know what to do when that reality changes into another that has no place for her.  In the instant when the ‘awakened’ Di Nero rejects his mother, we see her recoil, appalled suddenly at the meaningless of her life.  And when De Niro once again falls into his permanent stupor, we see his mother sigh softly with relief as she returns to her caring role. 

Make no mistake, this letting go business is hard going for mothers and fathers.  It is bittersweet to see any child grow up, but doubly so when vulnerable sons and daughters leave our care to depend on others who do not adore them as we do.   But I know that young arms lift more surely than old arms.  Young bodies can stay awake to monitor respiration overnight.  And Nicholas has learned these lessons.  He knows, as we do, that growing up is natural.  It is natural too, to seek out like-minded friends/caregivers who are strong in body, soul and sense of humor.  Nicholas has not stopped loving us, but he has started trusting others to keep him safe and who can create the circumstances for a rich life - a rich life that will be sustained after we die. 

Life is a funny old thing.  Now that my son is more or less settled (until the next crisis, at least), my Mom needs me more.  The old saying goes, “Where there’s life, there’s love”.  I might add, “and where there’s love, there is caregiving.”  I don’t expect that I will ever NOT be caring for someone in my life because I am blessed with many loving relationships.  I want my children to grow up and I want to discover new ways of caring for them.  I want to discover new dimensions of my mother through our changing roles.  It’s a push-pull process, this growing up, growing out and growing into… but it is all alright as long as there is love.


Anonymous said...

This movie also connected with me and I agree with your sentiments and narrative of the movie - but in the real life of of those who require extensive care many can not afford the assurance of "individualised quality care" in an instituational setting, meaning its institutional living without choice or equal access to supports and services.
In our situation I soul searched the future for my daughter to live in an inclusive community in her own home with her own personal assistance to ensure she has control and dignity in her own spite of her challenges. I was able to collaborate the services and supports to enable her to live in her own home. In our situation we were VERY FORTUNATE to have a team who worked in various government agencies to see our long term vision,which also is cost effective versus INSTITUTIONAL settings, and enabled me as her mother to reliquish some of the many hats I wear.
The sad part is that when families become/are "Clients of the System" the government controls how, where and when; which then does not offer any of the above components to enable persons with diversibilites with higher needs of support to achieve basic human rights.
When the government controls we as parents are not guaranteed quality care which then does not promote "letting go."
What happens to these families - they will never be able to let go!

Anonymous said...

Beautiful, thought-provoking and very moving....

The Caregivers' Living Room said...

I could not agree with everything you have said. Thank you so much for sharing your perspective. Our family is very, very lucky as well to have good care arrangements for our son. Many do not and have no choice but to continue giving total care until a crisis occurs. I believe it is vital to keep a public discussion going about what constitutes fairness in caregiving, ageing and what constitutes a good life for anyone who gives or receives care.

BLOOM - Parenting Kids With Disabilities said...

my goal will be to be where you are one day, where my son can lead a rich, supported life in his own home and is happy. i can only imagine how the push and pull plays with the heart as your role changes, but i hope you are so proud of what Nick and you and your family have accomplished. xo

Unknown said...

Really liked this Donna, but remember kids always need their Mum. Moving on is a part of life but you will always be the net that catches them if they stumble as they gain freedom. I also wanted to say you really are a remarkable woman, wife, mother and all the other hats you wear. Big respect to you Donna and love to your family.
Jonathan W

The Caregivers' Living Room said...

Thank you, Jonathan, of course you are right! I am talking about being completely joined at the hip vs halfway joined at the hip! Our relationship is so very very close (and that's typical of Moms like me and their kids). But that has to ease up a bit when Mums get old and I need to give Nick's caregivers a little trust and space too. When Nick started saying "Mum, go away!" when he was having fun in his room with caregivers, I got the message, but it hurt a bit. I am slowly getting used to the fact that my husband and I are not the only people in Nick's life. sigh.

The Caregivers' Living Room said...

Louise, I know you will get there and that Ben will too! Please keep telling everyone about your journey because you inspire me in understanding greater meaning in my family life.

Anonymous said...

I will never forget when I was going to go to my daughter's home one day and she clearly stated to me that she had plans so we would have to make it another day...this was truely a welcomed awakening to me:)
I am very saddened for the people who can not reach this point due to multiple barriers and yes then what happens are the crisis situations.
It is very concerning for me to witness crisis situations when they could have been avoided. When families have the full total care for an individual they do not have the strength to advocate to get to the point of being able to "partially pull aside"...there needs to be more one on one support for families.
Donna I read your blog all the time and am very inspired by your writings - I also pass on the many messages you write in hopes of giving people strength to go forward and for them to also realize they are not alone.
Thank you!