What Do I Do Now?

When someone you love has dementia

Reading Time: 8 minutes

She looked up at me innocently, her soft blue eyes with their flecks of grey widening like a small child’s. She looked so mystified and innocent that I could hardly bear it.

‘One, two, three, seventeen, twenty-four, five… why am I counting?’ Sometimes she was aware she had just been acting strangely, almost like someone else commenting upon the antics of a stranger.

As the disease progressed, my mother changed moods frequently, sliding in and out of tune with her ‘self’ just like one of those old fashioned radios that require fine tuning to locate the correct frequency. Shades of the woman I knew so well were still in evidence but now a new persona was emerging. If I felt frightened by her diagnosis, I could not imagine the extent of her terror.

When someone you love with all your heart descends into this often frightening and isolating journey it rips your world apart.

Dementia is a very broad term used to describe a decline in mental ability which seriously impacts upon daily life. Alzheimer’s is the most common form of dementia. According to dementiastatistics.org there will be a steady global increase in the number of dementia sufferers over the next few decades, affecting 152 million people by 2050. That’s an increase of 204% from statistics gathered in 2017.

When someone you love with all your heart descends into this often frightening and isolating journey it rips your world apart. The sufferer may be completely unintelligible, seem bewildered and frustrated but then out of the blue appear totally present, saying something reassuring and familiar.

‘Oh it is so nice to see you!’ Betty would say every now and again when her illness gave her a well earned rest. On really good days she would say my name and that felt like winning the lottery.

Betty experienced a large number of TIA’s (transient ischaemic attacks)  more commonly known as ‘mini strokes’ over a number of years. Blood flow to the brain had stopped for a short period of time, mimicking stroke like symptoms. Lasting for less than 24 hours, mini strokes are not the cause of permanent brain damage but act as a serious warning that a major stroke might be on the horizon. But Betty ignored these signs and kept them secret from her family for as long as she was able. An eventual brain scan revealed she had been having TIAs for about a decade.

Betty was not overly fond of Doctors and did everything possible to avoid being seen by one. When her house had to be cleared out in order to be sold we found a veritable chemist’s store behind the fridge. Her memory gradually deteriorated and she became very unsteady, often looking like someone who’d had one drink too many. A number of falls and a final bad one when she tumbled out of bed resulted in a broken femur and a couple of spells in hospital.

Over time she stopped doing things she enjoyed. She downed her needles decisively one day, announcing that knitting gave her a headache. She did the same with watching TV and listening to the radio. We later discovered she had had TIAs during these activities but believed they had caused her to feel unwell and decided that ceasing them would protect her from illness. An increasing lack of mental and physical stimulation only exacerbated the problem and a downward spiral ensued.

I naively assumed that memory loss was a natural sign of old age since she was in her eighties.

I first noticed that something was very wrong when she would repeat what she had just said about twenty times over the phone. I didn’t immediately understand this was an early sign of dementia. I naively assumed that memory loss was a natural sign of old age since she was in her eighties.

In spite of a period spent in an NHS Rehab Clinic to help her regain some movement after her last fall, Betty did not improve and a ‘Best Interests Meeting’ was held by staff to give her family the opportunity of expressing their wishes. Betty was assessed as being unfit to live alone and of requiring 24 hour care. She had always firmly maintained that she didn’t want to be admitted into a residential or nursing home or live with anyone else. I remember years before she had semi jokingly pleaded, ‘If I ever have to go into one of ‘those’ places please slip me a Mickey Finn!’.

So the day we had to take her to a residential nursing home in Sheffield, after visiting about fifteen such homes before making the hardest decision we’ve ever had to make, was heartbreaking. The fixtures and fittings were luxurious; the majestic building was set in its own grounds and her room overlooked a beautifully manicured garden. One afternoon while having afternoon tea we watched a local squirrel bounce around outside and I said, ’This is nice isn’t it, mom?’ while privately feeling despair and the most immeasurable guilt for living so far away. She looked downcast, ’It’s lovely to see you, Diane but it can’t last… can it?’

I was visiting her every single day, taking the staff at their word when they promised I could stay as long as I wished and drop in any hour of the day or night. After the first week I was told I was staying around for too long. I insisted on popping in at different times of the day, but soon realised that she was in the wrong place. Most of the care staff were wonderful people, very empathetic (and grossly underpaid) but the manager was massively upset when Mom disturbed the baubles on the Christmas tree. A heinous crime indeed.

Mom had several falls in the home and only a month later, on New Year’s Eve, was rushed into hospital after yet another stroke. Mom and I had had several conversations during moments in which she was extremely lucid and I knew she’d had enough. I asked her how she felt about living with us in Italy and to my utter amazement she agreed. No one could have been more surprised than me because she had always said she didn’t want to live anywhere but in her own home.

You learn a lot about your own strengths and weaknesses when you care for someone full time. Sometimes I wouldn’t manage to shower until midday. It reminded me of how life was when our children were small.. the copious cold cups of tea, barely eaten meals and lack of sleep. The responsibility was daunting and I can honestly say looking after my mother is the hardest thing I’ve ever done. I could not have managed without the immense support of my husband. His eyes still fill with tears when we reminisce about the times she would appear so lost and demand to know ‘What… do I do now?’

I wasn’t a perfect carer. I had my melt down moments but never let her see when I was finding things overwhelming. Carers UK say there are around 6.5 million carers in the UK. By 2037 that figure is estimated to rise to 9 million. 58% of carers are women. Carers everywhere in the world are deserving of great respect and support. Many have to care for elderly parents whilst also looking after children. Since the population is living longer and the cost of care is becoming increasingly prohibitive, it is quite likely that many of you reading this will one day become a carer for an elderly parent or relative with dementia.

There are many theories regarding why deterioration of the brain occurs, ranging from genetics, lack of exercise and unhealthy eating habits to additives in food. The way we live our lives is often sedentary, food is often fast and stress levels are high as we try to be everything to everyone and leave our own emotional, physical and mental health on the back burner.

Sadly Betty lived only another 6 months but we ensured that the time spent with us in Italy was the most comfortable, loving and secure possible. My husband and I managed her care between us, changing, bathing, administering her medication, feeding and dressing her, as she was totally incapable of doing anything for herself. We ordered a top of the range electronic hospital bed which transformed into a chair, a mobility chair and hoist which was essential to avoid damaging our backs.

The experience was extremely challenging and stressful but also very humbling. It was an intensely upsetting period of our lives but it made us stronger than ever as a couple. It also made me aware of just how hard it is to be a full time carer.

When Spring arrived so did wedding ceremonies but we took turns and managed business and care between us. Somehow we muddled through.

To have your own Mother not recognise you and even ignore you for two whole days was crushing.

Betty wasn’t always in a good mood or compliant! Sometimes she would become aggressive. One weekend Giuseppe had to go away for work and the only thing she said to me all weekend was ‘Who are you?’ When I reminded her that I was her youngest daughter she was having none of it. To have your own mother not recognise you and even ignore you for two whole days was crushing. I had to continually remind myself that it was the illness which made her behave like that. But the moments she ‘came back’ to me and we connected were just so fantastic and it’s those memories I cherish in my heart.

My life was saved by music and poetry. By chance I discovered that the repetition of melody and rhyme possessed magical properties. Betty couldn’t remember what she had said five minutes previously but if you read the first line of a familiar poem she could recite the rest! She could recall songs from the forties too so I bought a CD and played Vera Lynn’s wartime words over and over again.  They were words of hope at least.

“We’ll meet again
Don’t know where
Don’t know when
But I know we’ll meet again some sunny day
Keep smiling through
Just like you always do
‘Till the blue skies drive the dark clouds far away.”

Dementia feels like a war but there was a truce. Betty particularly loved to be read to, something I used to adore her doing with me when I was a child. One afternoon she was particularly fractious and in a desperate attempt to distract her I brought out a battered old copy of ‘The Selfish Giant’ by Oscar Wilde. It didn’t matter how many times I had read this aloud in the past I still choked up at exactly the same parts.

As I read this most moving of children’s stories aloud to my mother I realised the poignancy of becoming a parental figure to one’s own parent in the end.

“Every afternoon, when school was over, the children came and played with the Giant. But the little boy whom the Giant loved was never seen again. The Giant was very kind to all the children, yet he longed for his first little friend, and often spoke of him. ‘How I would like to see him!’ he used to say. Years went over, and the Giant grew very old and feeble. He could not play about any more, so he sat in a huge armchair, and watched the children at their games, and admired his garden. ‘I have many beautiful flowers,’ he said; ‘but the children are the most beautiful flowers of all.’

One winter morning he looked out of his window as he was dressing. He did not hate the Winter now, for he knew that it was merely the Spring asleep, and that the flowers were resting. Suddenly he rubbed his eyes in wonder, and looked and looked. It certainly was a marvellous sight. In the farthest corner of the garden was a tree quite covered with lovely white blossoms. Its branches were all golden, and silver fruit hung down from them, and underneath it stood the little boy he had loved. Downstairs ran the Giant in great joy, and out into the garden. He hastened across the grass, and came near to the child. And when he came quite close his face grew red with anger, and he said, ‘Who hath dared to wound thee?’ For on the palms of the child’s hands were the prints of two nails, and the prints of two nails were on the little feet.

‘Who hath dared to wound thee?’ cried the Giant; ‘tell me, that I may take my big sword and slay him.’

‘Nay!’ answered the child; ‘but these are the wounds of Love.’

‘Who art thou?’ said the Giant, and a strange awe fell on him, and he knelt before the little child.

And the child smiled on the Giant, and said to him, ‘You let me play once in your garden, to-day you shall come with me to my garden, which is Paradise.’ And when the children ran in that afternoon, they found the Giant lying dead under the tree, all covered with white blossoms.” – Oscar Wilde

When I had finished she gazed at me intently and whispered, ‘That… was really beautiful.’

I hurried into the kitchen to make Betty yet another cup of tea that would go cold and cried silent sad tears. Almost two years on, the memory of reading to her is one of the most precious.

In answer to her never ending question ‘What do I do now?’ I would tell her to just enjoy the time we had together, for it is the positive memories you create together which will comfort them in their hour of need and give you solace when they leave to continue a journey they must make alone.

Her brain might have been affected by dementia but I truly think her heart knew she would be loved forever and for that I’ll be eternally grateful.

 


Main image by Matteo Cuzzola

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7 Comments

  • This was such a sobering article to read as it could happen to anyone of us…it’s so important to cherish every moment and every memory as if it were the last as life really is so short! Thank you for sharing this with us all 🙂

  • You’re welcome Lucia. I hear many people of all ages talk about knowing someone who has been diagnosed or of their experiences as a Carer and I wanted to share my experience with others who might be dealing with this heartbreaking situation right now. Thank you so much for taking the time to comment.

  • This is so moving and I can certainly relate… I found it a very engaging and heartbreaking at the same time. Most of us will most likely have to go through this in one way or another in our lives. The quotes from The Selfish Giant really helped to paint a picture… how wonderful but sorrowful at the same time.

  • When I first saw Annabel link to this I couldn’t bring myself to click on it. My dad has early onset dementia and last year was one of the toughest for our family. He’s at that stage where things are starting to get pretty hard but he’s still really aware of what’s happening to him. His anxiety and depression was the hardest thing for me and my mum to deal with. Fortunately we’ve recently found a good combination of meds that really seem to work for his anxiety/depression. It won’t help the dementia, but as long as he’s happier then we’re a lot happier too. It’s such a heartbreaking disease. Thank you for sharing your story.

  • Kat I am so very sorry to hear that your Dad has early onset dementia. After I submitted this article I found a Radio 4 Podcast by an incredible womam called Wendy Mitchell. I am reading her book and would highly recommend it as an insight not only to those who have been disgnosed but also their families. It really helps to get inside the mind of someone who is facing this. It’s called ‘Somebody I used to know’ by Wendy Michell.

    Sending you and your family a big hug and lots of luck. You sound lovely and your Dad is so lucky to have such a caring daughter and family.

  • Joe.. thank you so much for your comment and yes The Selfish Giant reading was a bridge that brought her back to me that afternoon. The story is poignant, sad but beautiful.. very much like the story we shared.

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