In 2017, my mother called me from overseas to say she felt she did not have long to live and could I please come home to sort out her house and to assist to get her affairs in order.
I have lived in Australia for most of my life and she had never asked me to go back before, so I jumped on a plane the next day, so I could be there to support.
Mum was no longer able to do the simple things such as cook or clean. She could not even make a cup of tea; she was now very dependent on dad.
I noticed that things were changing for mum. She was sleeping more during the day and not eating very much. I pulled out a jigsaw puzzle for her, as this was something she prided herself on, but I found that she was not able to do puzzles anymore. This was a big change for mum as she was always a very capable and intelligent person. My mum had always been a very strong woman and I could feel that her health was deteriorating.
This particular afternoon around 4pm mum started to get agitated and was asking to go home, but she was already home. I could see the confusion on her face and this was devastating for her.
She was experiencing what is called ‘Sundowners’, a common syndrome for people living with Dementia.
It occurs in the afternoons and evenings where confusion, agitation and other symptoms can be worse than what is usually experienced in the mornings. Dad and I found this very difficult to cope with. It was like my mum disappeared every afternoon but her body was still there with this confused, sometimes angry person inside.
After about ten days of being home, my mum suddenly lost the ability to walk. With vascular dementia, the brain cells are affected due to problems associated with the blood’s circulation to the brain and therefore a lack of oxygen getting to different parts of the brain. There is no indication of what area will be affected next. She had a strong body but the message from the brain to tell her legs to move no longer worked. This was traumatic for her, she had always been on the move, a go-getter in every sense.
Something that I had observed during my stay was that in the mornings mum had more clarity whereas she was much more confused and agitated in the afternoons. One morning we had a conversation about how she had always pushed her body, treating it like she was 30 instead of accepting that she was in her 60’s, 70’s and finally her 80’s.
Her body was tired, worn out and mum said that she never accepted that her body was getting older. She expected her body just to get on with it, no matter how old she was at the time.
After this conversation mum was much more settled and she understood and accepted that she was no longer going to jump out of bed and fight through this one. Prior to this conversation mum was literally fighting to get out of bed all the time and this was very distressing, especially for my dad.
Mum asked to stay at home and clearly expressed that she did not want to go into a nursing home. I could care for her but I needed to call on the doctor and district nurses to come and give mum and the family additional support.
During this process mum asked me to sort out the back bedroom. She had been talking for years about getting the house de-cluttered, so I started with this room and it was like opening a can of worms. Fifty-six years they had lived in that house and it was full of boxes of memories. Mum was also a collector of many things. What was beautiful was that I was able to show mum old photos of friends and family and to celebrate her life.
I sat on her bed and talked to her about how much of her life was dedicated to bringing people together.
Even at 82 she was still organising bus trips to the theatre in London. As I cleared the spare room I could feel mum settle, there was more space, something she had wanted to do for years was finally being completed.
Mum was sleeping more and eating less and I realised that she was dying, so I spoke to her about what she would like me to do. She asked me to contact friends and family and ask them to send cards, not sympathy cards, just a note to say “Hi”.
I contacted people and we made it a celebration of her life, her bedroom was full of gorgeous flowers and cards.
Family came to see her while she was still able to talk and she spoke to others briefly on my phone. I ‘Facetimed’ family in Australia and her sisters who were not able to travel. She got to see and talk to them on video. It felt very joyful and seemed fitting to do this before she died rather than wait until she was gone to receive all the cards and flowers.
One of the most beautiful moments was when mum received a card and had a conversation with a previous employer. He shared how much she meant to him and how much she had changed his business with her brightness and how funny she was and also how great she was at her job. He loved my mum very deeply, not in a romantic way, but through appreciating what she brought to his life.
Mum passed away in her sleep a few days later.
Her funeral was a celebration of her life, we requested everyone wear a bright colour, ‘Dancing Queen’ by Abba was played as we walked out and everyone got to appreciate how much she contributed to bringing people together in life.
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