Floating boats

Mum died on the 5^th December 2011. Just under a month ago and so on the last day of the last month of the last year that she was alive I wanted to dispel two myths.

The first is the most painful. Contrary to popular belief when your mum dies after having lived through Alzheimer’s for a decade. It’s not, actually, a relief.

It’s called the long goodbye for a reason.

Alzheimer’s disease takes someone you love from you in the neurological equivalent of death by paper cuts. The changes are tiny at first but they are permanent and as they grow in number they cause an irreparable haemorrhaging of personality. They leave you yet remain behind so that the person you are confronted with doesn’t know you, doesn’t love you and cannot connect.

That’s them. You on the other hand remain the same. In my case the bond with my Mum which was forged in years of violence and anger and pain was stronger than ever. It wasn’t our violence and anger but it was our shared pain.

Her life I detailed in my Eulogy which I blogged, but it is the relationship of love which I’m talking about now because that didn’t leave me as it left her. As the plaques formed in her brain taking her into the darkness it made me understand what faith means whilst ironically making me realise unequivocally that there was for me, no God. To love with no hope of return, with no reciprocal word or gesture, with no recognition or reward is to me the only faith that counts

Lovely people emailing me after she had the stroke 9 days before she died asked if as an atheist I would mind if they prayed for me. This was a touching offer, which said so much about their kindness. They knew I was suffering and they wanted to help. Kind people like this I have all the time in the world for.

Conversely I discovered people who have found my blog, which often details the tough days for Emily, praying that she be “cured” of her autism. This is a little much for me.

Not because it will make any kind of difference these prayer groups could quite frankly get up and do the Tellytubbies Boom Boom dance for all the good it will do, but my point is this-If you believe yourself to be religious and in your view God has “made” Emily autistic then what kind of faith is it that now says “actually that’s great but can you make her with a little less disability? Thanks that’s great.”

Isn’t that treating their God like some kind of ecclesiastical chef with high maintenance patrons?
In any case it really makes no difference to me.

The second myth is that religious belief, at a time of bereavement always brings comfort. I'm sure it does- if you're religious.

As I'm an atheist, unsurprisingly, it doesn't.

My experiences in the last 3 weeks have brought me many, many assurances from well meaning people of Mums place in heaven. More worryingly, that she is looking down on me and watching over me.

These assurances have always been unbidden. They are kindly meant  but it serves no useful purpose other than to make me feel acutely aware of just how very dead she is. Plus Mum wasn’t one to listen in to other people’s conversations.

No promise of my mum  invisibly tiptoeing through my house brings me anything positive at all. In fact it is through my deep lack of belief, my conviction of there being no god, that much more comfort has come- because I’m not wasting time wondering about that, I’m thinking instead about the time we had.

I just miss her; at times so much it stops me in my tracks. I loved her so much you see and now she’s gone. Please understand I’m not making a judgement on the belief of the others, do what feels right for you, float the boat you need to, I’m not attempting to torpedo yours from mine. I’m just taking a little time to make mention of the other way to cope with death. 

One that makes no promise of celestial reconciliation but a simple assurance that the love you feel remains the same. Oh and please   don't tell me what a relief it must be that she's died because it really truly isn't.

Irrespective of the intention behind these words believe me when I say Alzeheimer's isn't a sedative against grief. It doesn't make anything easier.

My Speech for Mum

My Eulogy for my Mum. 15th December 2011

Mum was born in December 1933 in a Hospital*. This was not something most people could afford during the depression but as her mum was a nurse this was free. The NHS had yet to be invented.

Mum was a very good baby so good in fact that she was occasionally forgotten as she lay in her pram causing no trouble to anyone.

This pattern of gentleness was to follow her throughout life.

She was the middle child of Frank and Molly. She was two and a half years younger than her older brother Bill and two and a half years older than her younger brother Noel. 

Mum was often teased by her brothers. This was as it should be and it didn’t detract from the love they all had for one another. Mum wasn’t as strong as her brother Bill, nor was she as fast as her brother Noel, but she had patience. After one day where the teasing became too much to bear and with Mum fuming silently at Bill, he took his book into the garden and settled down for his usual read. As he lay there lost in the words, the sight of her brother relaxed and untroubled, prompted mum Mum to take her chance.
She looked around for the biggest rock she could carry and threw it as hard as she could at her unsuspecting brother. Then she ran. She heard the yell and ran faster until she found a tree climbed it and waited. Eventually after dark she reasoned that Bill would be calm enough and went home, to find her Mum oblivious to the rock and run but instead disappointed as she’d finished early and had hoped they could go to the pictures. Uncle Bill was fine but as he has no memory of this ever happening, perhaps from concussion.

When Mum was 18 she began training to be a nurse at Selly Oak Hospital in Birmingham, after doing her interim training at the ENT hospital in Shrewsbury. As she had adored her own mum it seemed natural that she follow her into the same career.

At Selly Oak Hospital Mum met two friends Harriet and Dilys. The girls all decided that they would complete their training and travel to East Africa to work. Unfortunately a family crisis meant that Dilys couldn’t leave her parents, so Mum and Harriet boarded the SS Uganda for the three-week journey. In the 1950’s telling her parents that she going to Africa she may well have announced she was flying to the moon. Her father was very worried, as was her mum who took her to the station and stayed watching as the train left.

Mum took a post as a nursing sister at the European hospital and then moved on to work in the African Hospital and it was whilst she was there that she met her husband. They married in 1957 and settled in Nairobi, and my sister Elisa was born the following year, followed 3 years later by my brother Michael. Elisa still remembers one night when she was poorly with the severe asthma which she has had since a very young child, Mum took her on her night shift, tucked her up in an empty bed on the ward and she watched the monkeys climbing the trees outside.

Mum was an accomplished dressmaker and an excellent cook. At Christmas especially she made everything from scratch and in the summer would make jam. From birthday cakes to Christmas trifle and everything in between she had a knack of making things beautifully.

Sadly her own mum, Molly died whist she was in Africa. Mum, still only in her twenties was devastated. Her beloved Dad, Frank would live into his eighties and Mum grieved equally when he died.

In 1963 after 8 years of African sunshine they decided to move back to my fathers home country Ireland. My father went on ahead and Mum sorted everything out for the move. Mum had never flown before and sometime after take off one of the planes wheels decided to detach itself.

The pilot announced that they would have to make an emergency landing in Entebbe. With Mum’s usual stoicism and with her 5 year old and two year old to think about Mum distracted Elisa’s questions about the emergency lights on the ground and with her typical calm in the face of a crisis suggested Elisa concentrate on her colouring book.

I was born in 1966. We moved to Dublin and lived there for a year before coming back to England and living first in Chester, then moving to Shrewsbury.

During all of these years our family was joined at various intervals by various cats and dogs and rabbits and gold fish and mice and hampsters. Mum loved animals and her last 3 cats all came to her as strays.

When I was 5 and ready for school, Mum decided to retrain as a midwife so that she could become a health visitor. Which she did meeting a friend, Pat who although 18 years younger than Mum would, like Dilys, prove to be a friend for life.

We’re especially grateful for the friendship and kindness Pat has shown to us in this past decade. Pat told me that Mum once sat through the night in hospital with her son John who at two and a half was very poorly. Pat had been with him for many nights and was exhausted. Mum gently but firmly told her to go home and rest and that she would sit with him. A typical gesture from Mum, made more poignant given that my brother Michael had recently died.

Michael first became unwell in the summer of 1978. It was easy to miss the initial symptoms of his condition because, quite unlike his pale sisters, Michael at 6 ft 3, blonde, blue eyed and tanned was the picture of health.

My father had left prior to Michael becoming ill and so mum coped with the diagnosis of his terminal heart condition and with Michael’s eventual death on Christmas Day 1978 aged 17.

She was broken hearted but again the stoicism of that heart ensured that she continued for her children. So she did.

My parents divorced and Mum transferred to working as a Health Visitor closer to home. She worked with the same Dr’s practice after they relocated and after she retired, they attended her to, until the end.

She was delighted when my sister married Mark whom she was deeply fond of and beyond proud when her first grandchild Nathan arrived, followed by Rosanna and Natasha, Ben and Joe. Both of her son’s in law- Mark and Phil drew Mums admiration because they possess the quality she most admired in a man and which she had seen with her own Dad and brothers, a natural ability to be a good and loving father.

Rosanna made Mum a great grandma when she had her son Max 3 years ago. Her grandchildren gave her some of the happiest times of her life. She had enormous patience and gentleness and would sit with them reading to her, or helping with a jigsaw, or simply listening as they chatted. From birthdays to babysitting Mum was there.

After my O levels I went to 6^th form college and met great friends who Mum was really fond of, Steven and Glyn, Sheridan and Sheila. Along with Debbie who I met through Sheila they are all still close friends who knew mum when she was well and supported us when she became more poorly.

Sheila’s parents Stan and Shirley invited us for Christmas Day. They gave us laughter and love for ten family Christmases in total and helped us to move beyond the hurt of that day. The last time I saw Stan who sadly died last year he was asking after Mum and remembered how at Christmas we’d all want to be on her team for trivial pursuit because she always knew the right answer.

The nursing gene skipped a generation in our case and I had decided on acting as a career. Mum was incredibly supportive of my choice and so I went to a drama school in London in 1986 and came home again in 1992.

My two girls Lizzy and Emily were born in 1994 and 1997 and mum gave me away when Phil and I got married in this church. He and Mum were very close and this meant that he completely understood when in later years, caring for Mum meant time away from him and the girls. Mum’s speech at our wedding was a study in gentleness and also bravery because unlike me she was very shy. I remember the day as being full of laughter.

Emily was diagnosed with autism at the age of 3. This came as a result of Mum’s gentle urging that we get her seen. She had recognised the signs through her work. Mum’s bond with my older daughter Lizzy who was named after her was a joy to behold. I see a lot of mum’s gentleness reflected in her and all her grandchildren.

Mum worked as a health visitor until the age of 65. She brought her usual kindness to bear with the families she worked with and I remember one of her mums giving us the biggest bag of chips I’d ever seen when we bumped into her in the chip-shop where she worked. Mum had supported her though a very difficult time. I know this because the woman told me as she loaded the bag. “Your Mum” she said “is a brilliant woman I wouldn’t have my kids if it wasn’t for her”

I was only 14 and very interested to know the details but Mum wouldn’t be drawn. She believed that confidences should be kept and never discussed any of the families she worked with.

 At 68 she was diagnosed with Alzheimer’s.

This last decade with Mum proved to be the most challenging, for her.

It was also the decade in which I was able to repay a lifelong debt and care for her as she had cared for us. She knew what the diagnosis meant. It was however in the words of the wonderful GP who tended to mum in the last years and crucially the last days of her life -an Honour.

I can’t begin to describe to you how loved and lovely mum was. How beautiful she was, both externally and in her heart. How strong, how compassionate, how intelligent or how elegant she remained even in her last hours. You only need to look to your own memories of her and think about how her face broke in to a smile, or how she would listen to you as you spoke, with complete focus and understanding, to know who and what she was.

Our hearts are broken but because of her love, because of her strength they will mend. That’s the gift she gave us and it will last forever.

*(Redacted to avoid identity theft)

No more battles

Sitting staring at the clock just now, trying to get myself through the minutes which mean that an entire 24 hours have passed since my mum died.

They’re taking forever.

Alzheimer’s was the reason but however they leave us, whatever age we are, I’m sure most people like me become temporarily five years old again and are transported back to the time when this day first enters our consciousness.

We realise with shattering clarity that one day Mum will die. If your mum was like mine, they reassure you that it’ll be a longtime away.
For most of us it is.

That fear for me resurfaced through the decade of decline we just travelled through. Past the responsibilities and added pressures, through the transference from mother to child and on to yesterday.

Sometimes I felt angry from the exhaustion of caring sometimes resentful and I always felt sad, but I didn’t walk away.

I was constantly reminded by her beautiful face, of the love that I had for her, even when her best smiles were reserved for the nurses and carers she grew to know better than her own children.

Sometimes our conversations became like the improv classes I learnt at drama school.
I’d play carer or visitor. We’d walk and talk and I’d tell her about myself and call her by her title so as not to frighten her with a familiarity she didn’t recognise.

My heart broke more with these conversations than at any other time because, when the world is at times an unforgiving planet, being with your Mum is a place of safety.
As long as she remembers you.

So today I went to the home and I said goodbye for the last time and they came to take her to the other place. The place where they took my brother on Christmas Day 33 years ago when he was only 17.

Like him she was gentle and kind and strong.
His illness was fast and hers was slow but they fought equally bravely until exhausted they couldn’t fight anymore.

No more battles, now they will rest together.