Finding Mum - Sue's 7 learnings after caring for her mother with dementia

Sue's mum, Mollie, passed away two years ago with Alzheimer's disease. Now Sue reflects on the lessons that living with and caring for a person with dementia taught her. She shares her perspective to honour her mum, celebrate their relationship, and help others affected by 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.

Sue's mum smiling holding flowers

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.

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 a 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

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.

Sue's mum sitting on a bench during a day trip

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

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

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.

Sue's mum with her newspaper and books

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

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.

Sue's mum helping with ironing and folding napkins

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

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, 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.

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

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.

Two photos with Sue's mum, holding her child doll and pushing a pushchair

Lesson 7: Memorable 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.

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Thank you for this and for pointing out the positives - we are five years into our journey with Alzheimer's and I am so tired of hearing the same stories over and over that I have been losing the ability to find the positives! But they are there and I must try and see them again. In fact, for some reason your article has made me think about keeping notes of positives and themes, because they do evolve and change over time. Thank you, and your lovely mum.

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Beautifully written and lovely tribute to your mum. From reading your post you can see how special your mum was to you and how special you were to her. Made me cry and smile at the same time. My mum has vascular dementia and due to lockdown appears to have deteriorated quite quickly I’m looking forward to the days when I can take her out and use some of your ideas. Thank you so much for your post, it gave me hope and ideas to build new memories. Sincere condolences to you x

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I lost my mum to alzheimers last January, the pain of watching her slip away is something I'll never get over

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Thank you Sue, for so kindly and lovingly sharing your experiences of dementia, and more importantly of your lovely mum. I care for my mum who has dementia and your words so eloquently describe the many lows, and surprising highs that this devastating illness brings. The love for your mum is clear, and I agree it’s so easy to focus on dementia and it’s limitations but the person is still in there, but when they return, even for small glimpses, it’s wonderful.

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This is wonderful and makes me think of my mum, she loved going for coffee and cake but we would have to watch how many sugars she would put in the coffee or her handbag... funny memories are so positive to keep...

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Thank you for sharing your story it was. lovely to read I've worked with dementia in care home for 30 years and enjoy every day I go to work .
as each day is different

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Thankyou for your comments Karen. The work you do is so vital. Thankyou on behalf of all you care for.

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I was so touched by the stories I have read of people with Dimentia & how they are managing. I am in my 80's now & already know that Dementia is my 'destination'. I am dreading the time when I can no longer hold a conversation with people whom I love & hope that I will be lucky enough to have patient family & people around me at the end. My husband has no understanding whatsoever, which saddens me, but I have to accept & trust that I will be fortunate enough to have loving caring people around me when it is time for me to say 'good-by to my children & loved ones. This insidious disease robs people, like myself, far too early. I pray that families & all those with this disease will be kind & considerate to all who suffer the indignity of Alzheimers.

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Thank you so much for sharing your story. I relate to so much of it. Such beauty in the midst of pain and sadness. Deepest condolences to you on the passing of your mum, hope you are so proud of all you did for her - you were an amazing daughter to her.

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Rabab, thankyou so much for your comments. My wonderful sister did most of the 24/7 care for Mum for many years. I am pleased to have been able to help at least a little.

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Beautifully written Sue. Made me cry and laugh at the same time
My lovely Mum is now in a residential home
But they do regular activities and we face FaceTime her lots. She still has her wicked sense of humour and her carers are the best.
We are so lucky that mum has settled there well. She joins in all activities and I can so relate to your happy memories with your Mum.
It is an awful disease, but like you say, you can still enjoy and make different precious memories with our loved ones.
Thank you for sharing your story your Mum was lucky to have such a caring Daughter and Family

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Thankyou Gill. It's so good that your Mum has settled into her care home and that she still has her sense of humour and loves joining in. I'm sure you will also be garnering the happy times together. Take care

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Thank you Sue for sharing your story which I found so moving - together with the other responses. My wife and I are both aged 88 and recently celebrated our 64th wedding anniversary. Like many of the other correspondents we have no close family or neighbours and I therefore endeavour to care for my loved one on my own . - supported I hasten to say with the help and advice from the Society and others albeit limited to phone calls of late. By contrast with others ours is a comparatively new situation but already there are times when Beryl does not recognise me believing I am her father married to her mother who passed away when Beryl was only19. She also believes my son, who is 57 and lives in Spain, is still a little boy coming home each evening for tea and comfort. I would be lying if I said I was not fearful for the future but how uplifting it has been to share ones thoughts with others and you in particular. Thank you again, and I hope and pray that we shall find the strength to cope in the way you describe.

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Michael thank for your kind comments. I'm pleased it helped at least a little. I'm glad you are getting some support albeit virtual due to the pandemic. There is so much helpful advice on the Alzheimer's society website. I also found peer chat via the Society very helpful. When the restrictions ease, it might be worth seeing if there are any local dementia support groups nearby, or Dementia friend visitors. In Leeds they had a scheme called SHARED LIVES. This would be a once a week visit by a supporter who would chat with Mum, do simple activities with her, have a cuppa etc, while the carer could have a few hours to them selves. Every little helps. Take care of yourself too.

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Thank you for sharing your story Sue. My mother also died of Alzheimers she died on valentines day 2019. Your story resonates with me as we too had many fun times together and I got to know her on a much deeper level.

I use to live in the care home with my mum, as I lived overseas, so I was allowed a room so that we could have quality time together. I got to know many of the staff and other residents. I use to join in all the activities and have meals together. I found the disease fascinating as I'm pretty sure the residents enjoyed teasing the young carers, it was like being in high school at times - they had no filters. Thankfully the carers played along.

It was when my mum took her last breath that I decided that I would create a legacy for her. From that day to now, I trained and became a certified master life purpose coach, it is my mission to redefine dementia and take some of the fear away for people and teach people who have a loved one, with a diagnosis,. to stay connected with passion and purpose.

You're right, it it a horrible disease, but with compassion and connection to the young person within, it can be full of wonder, love and admiration.

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Sarah, thankyou for your comments. What a wonderful relationship you must have developed with your Mum and what a difference your visits will have made to her. Well done of being inspired to train and do the wonderful work you are now doing. You will help so many.

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Beautiful and positive story - thank you for sharing

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Thankyou Lucinda

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Lovely story .that’s contented dementia. I wish we could get more of this into the care homes. Family carers are an ideal resource to help provide the cognitive and social stimulation for residents in care homes

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Thankyou Margaret. Yes you are so right, so much more can be done for care home residents with dementia. I do feel the problem is partly lack of funding and low wages which can lead to a lack of training and desire to learn more or to do more. There are some really good care homes though that have really embodied the `home from home' idea.
I think all care home employees should watch American, `TEEPA SNOW', . she's online and is amazing inher knowledge and understanding of dementia.

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Thank you so much for this. I coordinate a volunteer carers respite sitting scheme. Would it be ok to share your examples with prospective respite sitters? The compassion and creativity in your wonderful examples/descriptions would help increase the confidence of volunteer sitters who have had little or no personal or professional experience of being around people with dementia. Your empathy and humanity helps to demystify this state of being. A beautiful piece, thank you.

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Alice, thankyou for your kind comments. Yes of course please do use any of the ideas. In some ways , we found it helpful to think of things that young children might enjoy. EG: Group work... use a `parachute' to play circle games, to music of without. Of table top activities such as cutting shapes, sticker books, colouring, even `go fish' with those magnetic little fishing lines: excellent for hand eye co ordination and focus. If you go on to `Move it or Lose it' website, you may also find ideas for seated activities which you can adapt.

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Thank you so much... I am 81 my wife is 82 and in the early stages. With our family scattered far away and this virus lockdown, I am her sole carer. Thankfully we have angels as neighbours. My learning curve is immense and strangely, mostly about myself. I need time to think and 30 hour days - at least. There is no night or day - sleep is as and when. However,
Your article has inspired me.. guided me and shown me that the road ahead is not a blind alley. I know now that I am not alone. Again, many thanks.
Our family toast when glasses are raised is - 'Love and Laughs'.

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Ian, thankyou so much. I'm really pleased that you found it helpful and encouraging. I'm pleased you have wonderful supportive neighbours and hope you also have some respite even if only for short periods of time. Your wife is so fortunate to have you and your care. Wishing you both `Love and Laughs'.... and some much needed rest each day too.

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