And, she still loved flowers. My Dad often bought her flowers and they shared a love of gardening. As her dementia progressed and stole from her the names of plants and flowers, I noticed that she now preferred the brightest, most colourful blooms: big bold lilies, multi coloured tulips, artificially coloured carnations. And she would always smell their scent. 'Beautiful' she would say. And she was, herself a beautiful soul.
There is so much negativity around dementia and I understand why. It IS a cruel disease slowly destroying the brain and taking with it memories, knowledge, understanding, emotions, communication, and physical abilities. It has been described as the slowest of deaths and can feel like the most drawn out bereavement for families to witness.
But now, having just passed my Mum's second anniversary, I wanted to share the the joys and triumphs, the positives, the fun and new learning that Mum's dementia brought to me.
SEEING THE SIGNS
We first noticed little aberrations in Mum's behaviour and personality a few years after my Dad, her soul-mate, died; nothing obvious to anyone outside close family.
She always liked helping people especially older or lonely neighbours, but their reliance on her became a burden, an annoyance. She had great numeracy skills, managed personal finances well and had an excellent memory, but she started to buy duplicate groceries, pay for newspaper deliveries weeks in advance, offer visitors a cup of tea and forget to make it.
Slowly she became less confident outside the home and using public transport. Always a good cook and baker, she started to overcook meals and once set fire to the toast, forgetting it was under the grill. When she realised what she had done, she insisted that she ate it, 'so [she] didn't do it again' ! She didn't use the cooker unsupervised after that.
Gradually her cognitive skills, slipped away from her. Once an avid reader, she could no longer follow a novel and although ironically she carried on buying them, most remained unread. General knowledge crosswords were replaced with word searches which she would do at lightening speed. She would read newspapers but become emotionally affected by stories she read. Television changed from being an entertaining distraction to a source of fear and suspicion , because she thought whoever she was watching , was watching her.
She was proud, and I think embarrassed by the changes she recognised were happening to herself. She had helped to care for her own Mum who had lived with Alzheimer's disease for 20 yrs. But she could not be persuaded to see her GP.
A day trip to Skipton was going really well, until I decided to amble around the market (which she and Dad had always enjoyed doing). Every time I veered towards a stall, she huffed and gave me a 'black look', but all that dissipated when I mentioned coffee and a cake in a little tea shop !
Mum really loved going to coffee shops. In her later years even the sparse and basic Asda cafe was 'beautiful' to Mum. But my favourite trip was to Betty's Tea Rooms in Harrogate. We had silver service lunch, polite waiters and waitresses and cakes from the trolley. Mum loved it . the only anxiety was how to 'visit the ladies' with an sweet little old lady that might wander off while I was still in the cubicle. I am so grateful to the countless strangers who kindly 'watched' Mum for me on our day trips out!
LESSON 2
SINGING
NEW WISDOM: Singing releases endorphins and brings joy. Never worry about what other people think. Keep a sense of humour.
Hymns, old songs, musicals, nursery rhymes..... anything with a rhythm is food for the soul. Singing is good for the brain. It reconnects us with emotions and memories. It surprised us that even as Mum's short term memory declined, even when she no longer knew who I was, even when she had lost her words ,she could sing along to songs if given the slightest prompt. And in tune.
One of our last outings together was a trip to the Grand Theatre in Leeds, to see South Pacific. Within minutes of settling into our seats in the circle, she wanted to go home. I could feel a sense of panic rising as our row filled with people and the lights dimmed. I needn't have worried. As soon as the orchestra played their first few bars her face lit up. She sang every song.... out loud. I prepared myself with a stock reply if those nearby complained, but no one did. I wouldn't have stopped her because for those 2 hours she was transformed. Happy, connected somehow and calm. Later, as we walked back down the plush staircase, and into daylight again, she held my arm tightly 'What are we doing here' she said anxiously, 'Are we going home now?'. And the moment was gone. On the bus we looked at the programme together but the images within, prompted no recollection for her. But- I have never forgotten that day when she sang at the Grand!
LESSON 3
READING AND RECITING
NEW WISDOM: Just because someone seems to have lost their memory or word recall, does not mean they can't surprise and amaze you with what they can remember! Never lose your sense of awe and wonderment.
Mum never lost her love of reading and she read illustrated children's books avidly. Julia Donaldson, Raymond Briggs were favourites.
The Gruffalo, Room on the Broom, The Giant Jam Sandwich and all of Beatrix Potter's tales were read out loud, with us and to us , just as if she was reading to her children.... which , of course she was! She would chuckle at the images and describe the scene on each page, or praise the colours and trace the lines with her slender fingers.
Once, having heard the latest favourite story for the 10th time, I idly read out the first line in an newspaper article I was reading :
'I wandered lonely as a cloud'.....
'That floats on high o'er vales and hills,' Mum responded and then recited the entire Wordsworth poem, with beautiful intonation and emphasis.
I tried another, ' Earth has not anything to show more fair' :
'Dull would he be of soul who could pass by...' she continued, with a softer voice and now in her stride, again recited the entire poem word for word, with expression and reverence that I suspect she had been taught at school perhaps 70yrs ago. Wordsworth would be proud.
I have never forgotten that day either.
Lesson 4.
LIFE SKILLS
New Wisdom: Never assume that because someone can no longer do household tasks independently, they are incapable of doing them .
Mum was always very house-proud: vacuming, polishing, dusting, ironing . These 'chores' shaped her day. As Alzheimer's took hold there were times when she would either, sit and stare vacantly or anxiously follow us around. I gave her a duster one day and she contentedly started to dust the bookshelf , not quite so carefully as previously, but it occupied her until she asked, 'what else are you going to MAKE me do?' And so my virtuous bubble was burst !
Another time, I was baking... something Mum had taught each of her 3 children and now our own children are passing on the tradition to OUR grandchildren ! When I asked if she wanted to help, she looked blank, staring at the scales and the flour and clearly not understanding . But she carefully decanted the ingredients, and copied me to combine and knead the dough. The rolling pin and biscuit cutters puzzled her, but once in her hands she rolled the dough deftly and enjoyed cutting out the shapes. Later as we dunked our biscuits into a hot cup of tea, she was surprised and amazed to be told that SHE had made them !
How many of us LIKE ironing? Well I do and I think I've inherited this from Mum! But Mum was meticulous. Her ironing was perfect, every collar edge neatly pressed , every facing flattened, but it became too dangerous for her to do this unwatched. She would either scorch fabrics or burn herself. Instead we would sit and chat while she worked her way through a pile of blouses or tea towels. Here she was, focussed, concentrating, doing something practical, achieving something in spite of her shrinking brain.
Later when Mum was living in a care home, she used to 'help' by folding the laundry, or the napkins. I think care home staff often miss opportunities to engage with their residents and to encourage residents to reconnect with activities of daily living . Simple tasks such as folding towels, napkins, setting a table, can be re- learnt . This can give someone a focus, take them out of an apparent unresponsiveness and it is activity and distraction all in one.
When I was making bunting for my daughter's wedding, I took some material and templates with me to Mum's. We spent a happy afternoon cutting out , ironing fabric and matching up colourways ready for me to sew. And it was a lovely way for Mum to be present at the wedding even though physically she couldn't attend.
LESSON 5.
EXERCISE AND PLAY
New Wisdom: Never assume that someone with dementia who appears 'frozen', uncommunicative, detached, will be unable to join in exercise and play. Never underestimate the power of fun!
As Mum's dementia progressed, I started to research the condition. I gained a diploma in Dementia Care, I watched videos by Teepa Snow, whose positivity and 'hand under hand technique' proved so useful. I observed 'Move it or lose it ' with founder, Julie Robinson and found her seated exercise programme inspiring. I was beginning to understand the condition more but that did nothing to alleviate the sense of helplessness, frustration and sorrow that this progressive disease causes carers to feel.
One afternoon helping out while my sister was at work I discovered that Mum still had excellent hand -eye co -ordination . It had already been a long day , too wet to go out for a walk and I'd heard the same Julia Donaldson story too many times. Mum in a slightly truculent mood, became agitated while I was having a telephone conversation and started banging on a table. Sitting too far away to reach her I threw a small soft teddy over to her. With lightening reflexes she caught it and threw it back! She had a cheeky glint in her eye and was waiting for my return throw. Her mood, now transformed.
We often played seated, throw and catch after that, using soft toys, soft balls, bean bags. She was amazingly fast and superbly accurate. It used to fascinate me, how her mood and demeanour would change. In later years, even when she appeared to be vacant and disconnected we could help her to 'surface' by playing 'catch'. And we could see that it was 'lighting up' parts of her brain, as she became more animated. She enjoyed the game if there were more participants: then she would decide for herself who to throw to, and how to throw- under arm/overarm. Sometimes she would purposely throw out of reach, then fist pump the air with glee (another new and uncharacteristic gesture )!
I made cheer- leader pom -poms, from pipe- lagging and shredded carrier bags. We used balloons, indoor frisbees (less successful), bubbles. Sometimes we would recite nursery rhymes, or the alphabet while playing, sometimes we'd sing a song she knew. It didn't just make Mum smile; it made us smile too! And it was a safe way of exercising. She enjoyed it so much that she would need to be told to take a rest..... and we had to demonstrate what this meant..... which she always found entertaining.
I think people are sometimes wary about doing things with older adults that we associate with childhood, as if it could seem insulting in some way. But, there is a child in us all and as the brain with dementia shrinks, the memories that go first are the most recent..... our adult selves. Finally our childhood memories become more prominent. So why not connect with those times?
LESSON 6
LOVE
New Learning: Even if dementia steals away our abilities and capabilities, it does not take LOVE.
As her mental capacity declined, Mum became more 'locked in'. She no longer knew who we were, though I am sure she knew we were the people who loved her and who she could trust. Sometimes she became agitated, usually when she was fearful, or didn't understand what was happening or what we wanted her to do. She soon acquired a collection of soft toys and would cuddle or stroke them as she sat. We discovered that a baby doll could help her be calm. She would gently nurse it in her arms, rock it to sleep. She walked a lot, so when she was given a pushchair for her doll, she now had a purpose and an aim. She never lost her caring touch.
LESSON 7
MEMORABLE MEMORIES
New Learning : Use this time wisely, to make new memories, explore new things, develop a new relationship with your loved one.
As Mum's memory faded, we created memory books for her. With pictures and our own memories of what she did. These became talking points for us and for carers and helped carers to get to know Mum before Alzheimer's disease. We tried to encourage care home staff to read the biographies we made, though in reality I think few of them did so. Eventually Mum would read them with no sense of it relating to herself and eventually she stopped reading but the photos were still of interest. Photo albums that would have engaged her in the early stages of dementia, were of no interest in the latter years, though for us , they are invaluable.
For me, seeing those moments of connection, of joy ,during Mum's long demise with Alzheimer's disease, was worth every 200 mile round trip. I have photos and videos to remind me of those precious times. So, while I wish Mum did not have to go through this, I do feel truly blessed. Dementia gave me time and opportunities to connect with Mum in ways that may never have been possible otherwise.
If you have found this useful do let me know. All feedback very welcome."
USEFUL INFORMATION and FURTHER RESOURCES
1. https://www.alzheimers.org.uk
2. www.alzheimersresearchuk.org
3. https://www.moveitorloseit.co.uk
4. https://teepasnow.com
5. https://www.ageuk.org.uk/information-advice/health-wellbeing/conditions-illnesses/dementia/dementia-and-music
