Real stories

7 lessons learned about caring for someone with dementia

Two years ago, my lovely, gentle mum died. She was 85 years old.

Six months before she died, Mum could still touch her toes, or do high kicks when sitting in her chair! Her hearing was acute (at times) and she had excellent hand-eye coordination. But, she could no longer communicate verbally. She could not string words into a meaningful sentence.

She didn't know who I was, though I do think she knew that I was someone familiar, with whom she felt safe.

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.

She would always smell their scent. 'Beautiful', she would say. And she was, herself, a beautiful soul.

Seeing the signs of dementia in Mum

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.

Mum 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 lightning 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 years. But she could not be persuaded to see her GP.

Encouraged to see the GP

Then, one year, on holiday with family, she disappeared from their hotel.

A caring stranger found her on a railway station platform early that morning and had taken her to the local police station. She was told that she must see her GP and so reluctantly on her return home she did. She noted in her diary that 'They think I'm daft'.

She was diagnosed with Alzheimer's disease and so began our family journey of discovery and enlightenment. As a family and individually we each needed to find ways of navigating through the changes, frustrations, anxieties and losses that this disease brings.

At times it was like trudging through deep, ever-shifting sands with no prospect of ever reaching the oasis that would restore us!

We had already started mourning in a sense... not overtly of course, but inside, in our hearts: mourning the loss of the future relationship with Mum (grandma) that each of us had perhaps unconsciously planned for and graded mourning for each faculty and skill as they slipped away from her, and as she seemed to slip further away from us.

Accepting that this new relationship would be different, but was a 'together journey', was an important step for me.

Recognising the positives

Life became about how we could help Mum to live the best quality of life that she could.

It was challenging, frustrating, sad but also joyful, hilarious, warm, loving and rewarding. And in many ways I believe that Alzheimer's gave me the time to know Mum better, to discover new things about her, share new experiences, and love her more.

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 joys and triumphs, the positives, the fun and new learning that Mum's dementia brought to me.

Lesson 1. Outings should be planned

New wisdom: Don't avoid new experiences, but be less ambitious and plan carefully. Always have a backup plan. Keep a sense of humour.

In the early stages of Mum's dementia, I sometimes took her out for day trips. Using local transport helped to keep connected her with the past.

Bus drivers were often impatient because she didn't remember how to present her card for the scanner, which would make her more anxious. But when one driver insisted that I show him my own OAP pass, she was highly amused (I was only 50 at the time). And having forgotten about her own upset, she chatted happily to a toddler all the way to town.

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 a 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 a 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 is great for people with dementia

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 two 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 can help with memory

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 and 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 tenth time, I idly read out the first line in a newspaper article I was reading. 'I wandered lonely as a cloud...'

'That floats on high o'er vales and hills,' Mum responded. She 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 70 years ago. Wordsworth would be proud.

I have never forgotten that day, either.

Lesson 4: Life skills don't just go away

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, which was something Mum had taught each of her three children and now our own children are passing on the tradition to our grandchildren!

When I asked if she wanted to help, Mum 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.

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.

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-learned. This can give someone a focus and take them out of apparent unresponsiveness. It is activity and distraction all in one.

Lesson 5: Exercise and play are key

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 coordination. 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 lightning 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, softballs, 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.

Mum enjoyed the game if there were more participants: then she would decide for herself who to throw to, and how to throw - underarm/overarm. Sometimes she would purposely throw out of reach, then fist pump the air with glee (another new and uncharacteristic gesture)!

I made cheerleader 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 unconditionally 

New wisdom: 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 Mum 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: Make more new memories

New wisdom: 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.

They 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. Mum would later 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.