Mum looked at me, unshed tears shining in her eyes.
“Promise me. Promise me if that happens to me, you’ll give me a little blue pill, or blow my brains out or something. Anything. Just don’t let that happen to me.”
We were watching a TV drama about a woman who had senile dementia as it was called back in the 1970s. I was in my early twenties, full of plans and dreams. Mum was in her late fifties, a clever, brittle woman who had always got what she wanted in life by sheer hard work and determination. She’d left home in her teens in 1934 to become an aircraft engineer, unheard of at that time. Women stayed at home until they married. She told me once that as she went out the door she heard her Mother call out “If you go, don’t think you can come back”.
But go she did and she succeeded in living her dream, becoming not just an aircraft engineer but learning to fly and jump from planes, though not at the same time! During the war, she worked to get planes battle ready as they limped home from sorties. Later she met and married my Dad, having 3 children and staying at home as per the dictates at that time. Dad built a house in Reading Road. When I was 12 she retrained as a teacher, terrifying another generation of children.
In 1983 my beloved Dad died suddenly and my Mum went, unexpectedly to pieces. Both my brothers, by that time, had moved to other continents so a lot of the burden fell on me. I was married with 2 small children myself and almost resented the restrictions that Mum tried to place on my life. As my marriage fell apart, Mum’s grip on my life became stronger and most of the time I felt like a foolish teenager when I was with her.
This situation continued for years and I despaired that I would ever be allowed to live my own life, to have a weekend where I had just one day on my own with my children; not to do anything in particular, just to be.
Then in 2003 shortly after I’d been medically retired from my job, I was staying with Mum who was recovering from pneumonia. Both my children had left home by now so it was easy for me and my Jack Russell, Smudgie, to pack a case and go. After about 10 days, I thought I’d better try and deal with the pile of post that has come in case there were bills to pay. I started to sort through it, going to the desk where things like cheque books and stamps were kept. As I dropped the lid of the desk down, everything exploded onto the floor. Unpaid bills, unopened letters, empty, used envelopes going back 20 years to Dad’s death. Elastic bands, bits of string, used cartridges for her fountain pen. I stared at the mess in disbelief, this was more than a few weeks worth of neglect. Mum had always been meticulous about bill paying and everything had always been kept neatly filed.
And as I looked at the chaos, other nagging thoughts came into my mind. Like the time I was unable to rouse her and the phone was constantly engaged. I knew she was in , the door was locked from the inside. Eventually after a 2 hour wait in the cold January dark, the police arrived and broke in. Rushing up the stairs they told me to wait. They expected to find a body. Disregarding them, I rushed up the stairs after them to find Mum, starkers, sloshed, sitting up in bed regaling 4 burly policemen with a rather rude ditty.
Once we’d gone to Debenhams and I’d waited at the appointed meeting place for over an hour. Eventually, I found out she’d forgotten me and driven home alone. Of course, she said it was my fault and my mistake.
Mum would ask me to help her spring clean. When I tried to start that, she shouted at me “Do you think I’m so stupid I can’t do my own housework?”
I can’t think how many times I was told never to darken her doorstep. But I kept going back for more.
Once she thrust her phone bill at me muttering darkly about their mistake and how heads would roll. BT had put Mum’s monthly payment up to over £200 a month. But who was she phoning? I talked to BT who sent an itemised bill full of 0900 numbers, all being charged at around £1.50 a minute. Of course Mum denied all knowledge of that.
In early 2005 my sister-in-law visited from the US. I’d warned her and my brother, that all was not going smoothly and that Sue should prepare herself for a shock. But while she was here perhaps she’d help me to persuade Mum that she needed to move into sheltered accommodation at the very least. Looking at the house and Mum through Sue’s eyes helped me to see how bad things were and after her visit we had a family conference (not easy over three different time zones) and I started to look in earnest for somewhere, not sheltered, but somewhere else that would take her.
I found a flat where she could still live independently but in an assisted living complex where there were care staff on site 24 hours a day. By the time we moved her, Mum had degenerated dramatically. On the day of the move, I went round with the removal men and said “Have you remembered you’re moving today?” Because there were strangers present Mum couldn’t say what she wanted to but she glared at me as she went to get dressed. I packed clothes and kitchen stuff while she was out of the way, taking only what was necessary for immediate use. Then while Phil and the removal men headed off to the new flat, my son arrived and we took Mum to the pub for lunch to spare her the distress of wondering what was happening. From the pub we went straight to the new flat, immediately plying Mum with a big glass of red wine. She would, then and still now, do anything for a glass of wine. After a while Mum sat in her chair enjoying giving instructions to us all waiting on her. Within a week, she had forgotten all about the 40 years at Reading Road.
Mum’s Doctor suggested a trip to the Memory Clinic where her mental state could be assessed. After a trip by taxi (I don’t drive) to the flat, I found Mum sitting in her dressing gown, with her breakfast on her lap. I’d rung several times earlier to remind her and check that she was dressed. Gritting my teeth, I manoeuvred her through a quick wash and dress process, making sure that her clothes were cleaned and pressed. Another taxi took us to the clinic in a local hospital.
The staff were welcoming, taking Mum by the hand and guiding her to a chair, proffering coffee while I filled in the forms and had a private word with Dr. Sri, the consultant.
Mum came into the surgery and Dr Sri started to ask her questions. Mum looked at me helplessly.
“Why doesn’t he speak English?” she asked imperiously.
I groaned. Dr. Sri did speak with a heavy Indian accent. He asked Mum to tell him what day of the week she thought it was.
“Monday, Tuesday, Wednesday, Thursday, Friday what day do you want it to be?”
I groaned again.
Dr. Sri asked “What is the name of the Queen?”
“Well,” said Mum, “ if you or I were to meet her we’d call her Ma’am or Your Royal Highness. And curtsey. We’d have to curtsey.”
“And what season is it?”
Mum looked out of the window at the autumn leaves blowing about, the sky dull and grey. “Spring” she said.
“I’d like you to remember three words and tell me what they are in 5 minutes. The words are ball, chair and table.”
“What, is your memory so bad you can’t remember 3 words? Why should I have to do your job for you. Anyway they should be apple, ball and chair, so they are a, b, c.”
Dr. Sri grimaced at me. “Your Mother is very awkward.”
That I thought was an understatement. And when asked if she could recall the words, of course, Mum denied all knowledge of them.
The human condition is amazing, and you do come to accept the unacceptable when there is no alternative. So Mum passed her time in her new flat gradually having more and more done for her until she was completely dependent on her carers. She had all her meals brought to her, all her housework done and was washed and dressed every morning.
But the decline continued. She was often hospitalised with pneumonia. On one occasion when Phil and I visited she threw her dinner at me and shouted, hoping that I would rot in hell. She asked for a knife so she could cut her throat. She said I was telling people she was mad but she wasn’t and I was. She said that my Dad would be so cross with me. The nurse said she had been very trying that day. Her fellow patients were less restrained in their criticism.
Eventually we get to the present day. Mum is still alive and sort of well. After another bout of pneumonia and an extended stay in hospital, it was recommended that she was moved into a nursing home. So in February this year we made the move. This was another process that had to be gone through, something else to be borne. I duly made appointments to view various nursing homes reeling from their “basic” charges. I went round some homes with the sleeve of my coat very firmly over my face so great was the smell of urine and decay. I met care workers and nurses whose dedication to their charges impressed me, and other workers whose lack of care and the ability to speak even the basic English left me worried.
Eventually a home was found, so once again, I packed up my Mum’s bags and baggage sorting and disposing of stuff that had been gone through once before. There wasn’t so much muddle this time of course, though there were a few surprises that I really didn’t expect. I still haven’t figured out which of my brothers, on one of their infrequent visits, thought that Mum needed an electric drill with assorted bits.
But the home I chose is bright and busy. It’s dog friendly. The staff are caring and compassionate. Mum is well cared for and settled. And best of all, no smell of wee! So there she sits, day in, day out, in her adult nappy and her “easy care” clothes where once she would have thought Jaeger was a come down. She still recognises me. And really apart from occasional visits from my immediate family, I am the only person she sees.
So what of my journey through all of this? I like to wax lyrical about karma and spiritual path but I can’t figure out how this once vital young woman has become the shell that she is now. I know we all age, I know we all die. But this is a living death. Where is the quality of life that we speak of? What about dignity? We wouldn’t keep a dog alive with this condition but it’s ok for the superior species that is man.
I could tell you about the past lives that I have had with Mum where she has left me to die in appalling conditions. About mediums that tell me she is waiting for me to go with her as she has promised not to leave me this time.
I could tell you that night after night I speak to my Dad, to Mum’s Dad and Mum and beg them to help Mum to pass to end her suffering. This was her worst nightmare. And now she’s living it. There’s a lesson in there somewhere.
So most days I go over to visit Mum. I still don’t drive, it’s too far to walk and not on a bus route. I sit with her as she sleeps. She’s more peaceful these days and can’t move without help. Sometimes she says “Oh Mandy, there you are” as if she’s been looking for me. Other days she asks if I know where her Mummy is. I don’t always stay long. But I go, not from guilt, from hope that it might be today I find her again; I might just see that spark again. I do these things for her she’s my Mum and as difficult as she’s been I still love her.
But the truth is that I no longer know who this impostor is.
Mandy Burton
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