Monday night was a rather long night with my grandson being taken to hospital in an ambulance with Croup. As always when I am on ‘Granny duty’ I don’t like to sleep on the job so try to stay awake as long as possible. I eventually succumb and easily drift off to the land of nod, but while I find it really easy to visit, the hard part for me is actually staying there … but today it’s 5.44 am and I have slept in. I can tell you I would really love to go back to sleep.
What I want to share with you in today’s blog is an issue that faces many people and their families. The sad journey of watching a loved one tackle Dementia.
In 1955 my mother-in-law, father-in-law and son Barry (my husband) adopted a baby girl called Sharon Maree and welcomed her into their lives. Sharon was 17 months old when they were told “rather brutally” that Sharon suffered from Down Syndrome. Up until this point they had no idea and were in total shock when the Doctor, who assumed they knew, pointed out her disability.
Due to how little was known at the time about Down Syndrome, or Trisomy 21, my mother in law decided to search high and low and look for a ‘cure’ for Sharon. During this search she went back to the adoption agency to request some family history and was given the offer of returning Sharon and being given a replacement. Luckily for all of us this horrified the family. They refused the offer and kept our darling Sharon who has become such a vital member of our family.
While Sharon spent her early childhood living on my in law’s sheep station 300 kms NE of Broken Hill, it was decided that she should be sent somewhere she could be provided with some extra stimulation to help with her delayed learning. Despite Doctors advising that she wouldn’t have any quality of life and was unlikely to live past 14 years of age, she proved them wrong by learning to walk and talk and even taught herself how to swim just by watching her brother!
So in 1960 when Sharon was five years old, she moved to Broken Hill to board with the Sisters of Mercy at the Home of Compassion. Sharon still talks incessantly about Sister Malachy who taught her to iron, many of the other Nuns and teachers and, most lovingly, her boarding friends from Wilcannia.
For me personally, Sharon came into my life 43 years ago when I met her big brother Barry. Originally when Barry and I married and had our first baby, Sharon had decided she wanted to get married and have a baby too. She soon changed her mind and exclaimed that men and babies were “too much work” and instead opted for the role of Aunty. Sharon really has been the most kind, caring and dedicated Aunty and now Great Aunty.
In 2011 Sharon’s father passed away and Barry as eldest sibling took on the responsibility of looking after Sharon. It was her wish to live independently in her beautiful new house her father had built for her in Broken Hill. With the aid of the many wonderful services available to her, Sharon was able to achieve her wish of staying alone in her house and living independently. She began to take control of her life and make all her own decisions. They weren’t always agreed with, like the time she decided to dye her hair bright red and black which nearly gave her brother a heart attack!
In November last year her independence came to a halt. Sharon had wandered out and become lost in 40 degree heat resulting in a trip to the Emergency Department with dehydration. We received a phone call at 10.30 pm from the Broken Hill Hospital telling us Sharon was being discharged and we needed to pick her up.
When we travelled to Broken Hill the next day and met with her care workers they relayed events from the last two months and it was clear she was beginning to suffer from confusion and memory loss. We had realised there was some decline in her cognitive function but she had managed to hide from us how fast she was deteriorating.
While we knew she would no longer be able to live independently and care for herself, the decision of moving into shared living accommodation ultimately lay with Sharon and she made it clear this wasn’t going to happen. She agreed to at least come and stay with us over the Christmas break whilst we discussed her options.
Sharon decided after Christmas, while her day program was on holiday, that she would like to travel with us to Sydney to visit our daughter, son in law and grandchildren. On arriving at the house she walked around admiring everything and announced she wanted to live there. My daughter, son-in-law and three grandchildren welcomed Sharon into their lives and began the process of setting up a new life for her in Sydney.
So the next and potentially final chapter of her life began in Sydney about six months ago. We were told her descent in dementia would be very rapid as this is a characteristic of people who have Trisomy 21. While she did begin to slightly improve over the last six months, and we saw glimpses of the old beautiful Sharon, it became increasingly apparent that it was not as permanent as we would have loved and she is once again beginning to descend into the darkness of dementia.
Due to the commotion surrounding my grandson’s trip to hospital, she wandered around totally confused as to what was going on, not knowing whether she should be getting up and joining us or going to bed as we kept telling her. This went on until 1.00 am when I finally went into her bedroom and managed to convince her it was the middle of the night and she really needed to get some sleep for the party we were planning for her the next day. With the promise of party and cake she happily went to bed after a high five and a big loud kiss!
For me this is the hardest part of this awful, brutal disease. Watching a loved one begin to lose their sense of the world and slowly lose the ability to understand, remember and communicate. To sit and watch the look of confusion and sadness that comes over Sharon’s face when she thinks no one is looking is a truly heartbreaking experience.
Sharon Maree I am so sad for you. I can’t help but wonder what is to come and how we will all cope. I know that while you were blessed to have been brought into the Turner family and given such a great opportunity in life, we have been even more blessed to have had you in ours. I don’t think anyone could ever have imagined 61 years ago what an integral part of our family you would be.
Every day you teach us the values of loyalty and unconditional love. Your innocence and sense of humour has made us laugh many times, your optimism and effervescence are truly humbling and your dance moves are amazing! Ever the Diplomat and hardworking to a fault! It is well known throughout the family that your parents couldn’t have survived the droughts without your help.
So many people love you and I cannot take a walk around Broken Hill without being stopped many times by people who know and love you. You have touched the lives of so many people so effortlessly by just being your beautiful self.
I am already missing our long road trips where we sing at the top of our voices for thousands of kms and my journeys will never be the same without you sitting beside me playing your Air Guitar. You have given your great nephews and niece such a wonderful gift by opening them up to your world and allowing them in. I love that they know all the words to Annie and The Sound of Music and that they think Charlie Chaplin is hilarious. I am grateful that this next Generation of Turners have been able to spend this time with you and get to know how amazing you are.
Finally, I think about the mother out there who made a huge sacrifice 61 years ago and gave her daughter up for adoption. She probably does not know her daughter has Down Syndrome or how and where she lived her life.
Sharon will never be able to contact you and relate her life story as is the right of other adoptees. I wish you could know we think of you and thank you for the wonderful gift that has been our Sharon Maree Turner.