Like Andy Burnham, I know the pain of losing a parent to Alzheimer's - here's what I think of his social care plan: Christa Ackroyd
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Every year around this time I buy gladioli. They are not my favourite flower partly because I have to hunt down a vase in the attic tall enough to display them, but I buy them all the same. Because mum did.
They were for her a memory she treasured until she could no longer remember their significance. But even when her memories had become jumbled in confusion they made her smile too. Somewhere deep inside they evoked a feeling of happiness. And here is why.
When she and dad married one September years and years ago they were the flowers she chose to decorate the church. It was long before hothouse imports meant every flower was available in almost every season. And glads, as she called them, were both affordable and colourful. This week they fill my house. I also smile at the last of the deep red roses that, despite an extraordinary dry summer, have decided to bloom again and which mum chose for her bridal bouquet. I grow them for her and my dad who loved roses.
Flowers like music evoke such memories, even when, like the blooms, those memories fade. When my father died 27 years ago this month it was sudden, unexpected and peaceful. He was younger than he should have been but just the same person he always was, of sound mind though weak in body. Mum was stoic. In her little diary, that year, the one I have kept as a treasure, she simply wrote ‘Sad day today. Maurice died.’ It broke my heart then as it does now.
But mum did not die peacefully in the armchair dad once sat in at the little Bradford semi where they had lived almost all their married lives, as she had planned. In the end she could not remember his name, though I thank the powers of the universe that she always recognised me until the end. Her passing told a very different story.
Mum had survived cancer in her forties and a number of mini stroke – TIAs as they are known medically – in her fifties, sixties and seventies. She knew and I knew they would always be part of her life, despite the medication she was given and they caused her irreparable damage every time they happened. For years she carried on. More and more her memory failed her. She knew as I knew that dementia was around the corner. And, as someone once wrote, it was like losing her piece by piece.
For a decade and more we muddled on. Falls, hospitalisation, more mini strokes and an ever increasing dependency on others for her care. The woman who had seen her role as caring for others was still there deep inside but she resented more and more the reliance on others to provide the care she now needed. In the end it became too much. She could not walk unaided or go to the bathroom. She could not dress herself or prepare her own food or answer the telephone. She did not know if it was day or night or how to say her own name.
And worse she became agitated and angry with sudden mood swings if someone tried to help her. My mum, the gentlest sweetest living soul became unrecognisable. The care team who had successfully helped in keeping her in her own home for a decade could do no more. She needed full time care at the age of 89. The council care home she was placed in as a temporary measure was understaffed and depressing with patients wandering the corridors unsupervised. She hated it though she couldn’t express why. But she cried and her eyes pleaded ‘get me out of here’, and still the bill was more than £600 a week even though her complex needs had been assessed that there was no alternative having now been diagnosed with Alzheimer’s to add to her growing list of medical conditions.
The second place only lasted a day when I returned unexpectedly to hear someone shouting at her about not drinking a cup of coffee. I slept on the sofa back home with her until I found one that felt right.
And it was. The staff knew her name, learned her likes and dislikes and were adept at handling her refusal to be moved. They were a godsend. But as she grew weaker, more unwell and more confused still she had to pay out of her meagre savings, because she had a little house whose value was less than £150,000. For six months I battled the authorities refusing to accept their decision that she was not unwell enough. I got medical testimonies and testimonies from the team who cared for her. Eventually I won. The NHS would pay for her care. Mum died two weeks later. But what valuable energy and what enormous stress that caused in the last few months of her long life, energy that should have been put into being there unhindered by bureaucracy to care for her. Most in that wonderful care home did not pay for their care.
The rate the council paid was lower than that afforded to my mum. I could have beaten the system by asking her to sign over her house to me more than seven years previously. But why should she?
But here is the truth, it is as it was dubbed then a tax on dementia. If mum had had cancer that would have been covered. If she had suffered from severe diabetes which had led to complex needs that would have been too. But dementia is not. Even though one in three of us will suffer from it, god help us.
Andy Burnham says he will tackle the social care issue once and for all. He has witnessed first-hand a father who probably did not understand his son had been elected Prime Minister. There is talk of everyone paying ten per cent of all they own upon their death to pay for it. And I agree.
The loopholes in inheritance and therefore care must be closed. Inheritance tax for all as opposed to the complex system where it is paid only on assets above £325,000 is unfair. Married couples can effectively double that to a million pounds and if inheritance is passed to a child or grandchild to £500,000.
The solution seems a good one. We should all pay a little to protect the most. And all care deemed essential should be given free of charge. The changes will be controversial. There are those who don’t want to pay anything at all. But then if dementia happens to them they will very quickly see they will then be paying much much more.
Ten per cent of a lot is I admit a lot. Ten per cent of a little is as I think the economists would describe it proportionate. Until then we all suffer.
It is our biggest fear that we will all end up not being able to care for ourselves, that our minds become confused and we have to rely on others. I suggest ten per cent of what we have each accumulated is a small price to pay for knowing we can still leave the vast majority of what we have to whoever we choose. Instead of the advice being given so often at present, spend the lot and then the state will pay.
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