Life with Alzheimer's |25 September 2021
September is Alzheimer’s month. This year, the Seychelles Alzheimer’s Foundation would like to pay a special tribute to all the caregivers of Alzheimer sufferers. They are our unsung heroes.
This article, written by Jacques Harter, a caregiver himself, is an example of the dedication of our caregivers as they accompany their loved one through each day.
My Mum was born in 1924 to Armand and Germaine Sauvage, and she had nine siblings. She grew up in that large gregarious clan in Mont Fleuri, with nine more riotous cousins as neighbours.
She was diagnosed with early Alzheimer's in 2010, while visiting my sister in the United Kingdom. Fortunately for us all, she was seen by the eminent Dr James Warner, an exceptional and empathetic dementia specialist. As a family we followed his advice, and we all cared for mum in the family house at Sans Soucis, in a familiar, peaceful environment.
I lived with mum for many years, and was her primary caregiver until she passed away at 97, in July 2021. Below is an extract from an unpublished article from January 2017.
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After all those years, what have I learnt, and what can I tell you about my mum?
Until three years ago, mum still recalled names, events and the lifelong friendships forged in the heat and dust of that barefoot
hyperactive childhood. Now, those memories are gradually being obscured like a blanket of dust settling in her brain.
For over 10 years she and I have walked along Beau Vallon in the afternoons, often with my partner May. Young children are always drawn to her and sometimes surround her and engage her in conversation. It seems to be an instinctive grandmother/toddler thing...
If she is upset, or struggling to grasp the answer to a question she has asked, I 'change the channel': distract her with a nature video, or an activity such as washing the dishes ‒ her daily morning chore, over which she takes as long as she likes.
She will occasionally surprise me with her capacity for reasoning, and humour. One evening recently, she asked me several times why I had not asked my partner May to marry me: ‘She is a lovely woman, if you don't marry her someone else will’. May and mum became instant BFFs when they met in 2014, and she has been like a daughter to her. Mum used to confide in her about the dramatic romance with dad that swept her off her 23-year-old feet.
Her questions are frequently un-answerable. She and my late father Roger always ate together at mealtimes, so that's usually when she asks 'où est Roger?' I have had to manage tricky questions, as the blunt truth is often not the appropriate answer. I have discovered that inventiveness and imagination are driven by compassion.
She will spend ages picking earrings, even after you've already put a pair on for her. You will not walk away from her when she's upset, you will sit and watch and wait.
She forgets when to pee, but doesn't baulk when you gently remind her it’s time. After an 'accident' she will quietly tell you without a hint of irritation, but with an apology, followed by another and another. You will slow right down and be as gentle as you would with a kitten. A kitten with occasional claws.
She will sit with you and watch the BBC's Frozen Planet for the umpteenth time, and be totally engrossed. You will watch together for hours, because you understand that her sense of wonder remains intact and she is at peace. You will sit at your laptop, or read, while she sits next to you on the sofa, looking out to St Anne and the inner islands and the strings of beachside lights. Then she will get into bed and thank you for everything you've done for her. I love you mum, you say, and she replies thank you, so do I with a smile. And you are at peace because you know she had another good day and will have another good night, and that is right now the most important thing in the world to you.
If you are driving home after a day out, she will grip your hand tightly while you drive slowly and carefully with the other. She will be looking intently ahead and will not recognise the places she's passing, but she will ask you 'where are we now?' and you will speak slowly and carefully and tell her where you are, three or four times during the journey home. You will remind her that you are heading up Sans Soucis where she lives.
Days like today are rare.
Both the cook and the carer are off, and we are home alone for the entire day and evening. We go through our morning routine, then watch Songs of Praise on Youtube. We walk slowly to the end of the driveway and back, with the dogs Jasper and Toy, one hand on her walking stick, the other in mine. I make a salad to go with our kari pwason. After lunch we listen to more Youtube recordings: Panis Angelicus, Ave Maria. Mum has always loved the Bach/Gounod Ave Maria and apparently still knows the words! I sit next to her, holding her hand. We both listen to the words of Dido's Lament : 'remember me, but forget my fate' and I feel a deep spiritual connection with my Mum. I know she does too. The experience is fleeting, light, but the connection is deeply rooted in my soul. This feeling stays with me for days, and who knows, maybe with her too.
It has taken me years to reach this point, where I can manage her prevailing confusion and infrequent episodes of agitation with patience and firmness, and still without medication. My mother is an engaging and dignified old lady, and caring for her has been one of the most emotionally and spiritually rewarding experiences of my adult life.
After all those years, what can I tell you about my mum?
So much; but perhaps just this. At 93, having lived with Alzheimer's for four years, she has mastered something which those of us of sound mind will struggle with throughout our lives: the art of letting go.
Contributed by Jacques Harter for SAF
If you want to join the foundation, give a helping hand or make any other type of contribution please contact us on 2517460, 2527871 or 2576080.
