Week Six

Content Warning – contains descriptions of child abuse.

What to do with Mum is always such a challenge – particularly if I don’t know what I want to do myself.

We went out for a walk with the pretext of buying milk. Mammy was looking upset again. “I’m so scared,” she said “I can’t DO anything and I don’t know what’s going to happen.”

“It is scary, but you can walk and talk, sing and dance, eat and pray and you can love. That’s quite a lot of stuff that you can do well and I think it’s very important stuff. The other things we can help you with.”

Mammy certainly can dance – she does a very seductive, fun dance and can still jive. Once, they had an outing at the ‘Broad Glade Day Centre’ and Mum returned with a certificate for being ‘a beautiful dancer and a lovely presence on the stage’. She is happy when dancing – especially to rock ’n roll. She loves blue grass too. It always surprises me how deep into the soul music must go, as many people can forget their own name but still manage to sing-along to an old tune.

***

Today is Monday again and we’ve done the school run, had tea and a chat with Pat (we visit her on the way home several times a week), been up to ‘Take-a-Break’, done some shopping and assessed the growth (and the storm-damage) in the garden. The air smells fabulous today – like the air you smell when hill-walking: fresh green, muddy fragrances – full of warmth, heady-sweet privet, elder flower and promise somehow?

The O.T. is here now, doing an activity with my crafty mum. I’m trying not to listen, but it sounds like she’s taking some encouraging.

Yesterday I picked up a book and read the first chapter “What is Alzheimer’s disease”.

I must admit that I found this a little alarming:

“The form of Alzheimer’s disease that is definitely known to be passed on…in the genes, is extremely rare. It is very unlikely…unless close relatives have developed the disease below the age of 60…If your family does…you are only at risk if your mother or father developed it. If…you have a one in two chance of developing the disease…a genetic test … could be requested to confirm whether or not you do in fact have the gene…” (page 5) [Notes 1]

Now that’s not very encouraging. I will banish such thoughts. I have no intention of carrying or developing such a horrible disease. Nor Debbie.

It also says “Up to the age of 65, Alzheimer’s disease develops in only about one person in 1,000.” (Page 4)

One other fact that I found interesting, considering they seem to know so little about what actually causes the disease, was the description of what would be found in the brain of an Alzheimer’s sufferer at their post-mortem –

“…Diagnosis… usually depends on finding characteristic changes in the brain tissue…Spread throughout the brain…are deposits, or plaques, made up of an abnormal protein called beta amyloid. A further abnormality is the occurrence of tangles of twisted protein molecules within the nerve cells of the brain. Other features, also found in other dementias, are shrinkage of the brain and widespread death of cells.” (Page 3)

Another thing they find in post-mortems is a lack of acetylcholine – a neurotransmitter – in the brains of people who have had Alzheimer’s. That’s why they give the ‘Aricept’, I believe. But we don’t seem to know what causes all these proteins and plaques to develop.

The book also offers a rough guide to the likely progression of the disease, in terms of symptoms. They list ‘early’, ‘middle’ or ‘late symptoms’. Reading through them for a ‘best fit’ assessment myself, I can tick off everything in the ‘early’ and the ‘middle’ lists for Mum and even put hesitant ticks on half of the symptoms listed in ‘late symptoms’. (page 10) [Notes 1] – I have listed these stages in the Appendix [App.1]

So we’ve got more to look forward to yet. It is all quite vague though. The last time we were at the St Peter’s Wing, the doctor did a memory assessment of Mammy. She scored ‘9’ out of something, but apparently ‘less than 12’ (out of that same something) indicates a severe memory impairment. They asked lots of questions about what day, month, year, and season we are in and, mostly, she doesn’t have a clue. Personally, when my own routine is disturbed – e.g.: holidays – I don’t know what day it is either and I usually have to check what the date is now that I am not teaching.

And what does it really matter?

Some new and significant events do register and stay in her mind and recall though: last year when I told Mum that I was getting married, she consistently said she wanted to come. When it was arranged, apparently she told lots of people in Orkney and on the phone, that she was coming to my wedding. More recently in March, the tragic, accidental death of our dear friend, Roger, was an event she recalled frequently over the weeks until the funeral, which we were fortunate to be able to attend. I suppose the fact that these events were so significant was the main point.

Anyway, the doctors here figure that the ‘Aricept’ – which was supposed to “reduce the breakdown of acetylcholine in the brain” – doesn’t help with severe Alzheimer’s disease anyway.

I looked at ‘page 39’, to see what they say about the genetic test for family members. Apparently it is a simple blood test to see whether or not I could be carrying the gene that has caused Alzheimer’s disease in my mother. I probably won’t do it though. I want to live in faith in God, not under a medical prognosis. But I might try some vitamin B12 and B1 supplements, which are supposed to help keep the brain healthy anyway.

This is all technical stuff, but it is very interesting and worth knowing. I know what to pray against for myself and my boys too. (And for my sister and her children.)

The Alzheimer’s website has a simple checklist:

The seven warning signs of Alzheimer’s disease are:

1. Asking the same question over and over again.

1. Asking the same question over and over again.

1. Asking the same question over and over again.

2. Repeating the same story, word for word, again and again.

3. Forgetting how to cook, or how to make repairs, or how to play cards — activities that were previously done with ease and regularity.

4. Losing one’s ability to pay bills or balance one’s chequebook.

5. Getting lost in familiar surroundings, or misplacing household objects.

6. Neglecting to bathe, or wearing the same clothes over again, while insisting that they have taken a bath or that their clothes are still clean.

7. Relying on someone else, such as a spouse, to make decisions or answer questions they previously would have handled themselves.

[See Appendix 2: useful websites.]

***

My sister, Debbie, will be coming to Nottingham next Tuesday. Debbie and I are not alike. We see the world from very different perspectives. I haven’t seen her since Christmas, just before Simon and I decided that Mum would not be returning to Orkney. She has lived in Spain for about 13 years with her 3 children. She has ‘Enduring Power of Attorney’, so I have had to update her regularly on what’s been happening medically and decisions that need to be, or have been, taken. It has been particularly difficult for the various agencies involved, because technically, Debbie is supposed to give her permission – and sign forms – for just about everything. Fortunately, however, the system is mostly humane enough to allow me, as ‘main carer’ and ‘other daughter’, to get on with the nitty-gritty, day-to-day stuff, without too much ceremony.

I have found the situation a little frustrating. Not that I want the legal as well as the practical responsibility, but when the Enduring POA was set up, in Orkney (under Scottish Law), by Debbie and Mum, I was given the impression that we had joint-POA. Apparently though, I only have authority to act on Mum’s behalf if 1. Debbie dies (God forbid), or 2. rescinds her power. She doesn’t intend to do either.

Life is like that sometimes.

***

I would strongly advise anyone caring for a relative with dementia to make sure that POA issues are settled early on, as the dementia sufferer has to be ‘of sound mind’ to sanction it.

(See Appendix 2 for details about Power of Attorney issues.)

***

One theory I have always had about Mum (but may not be the case at all), is that the reason she has lost her memory is because she has lived in denial of the truth for most of her life. For much of her life, I do not know the real truth, I just know that she has hidden it. Growing up, there was so much horrible stuff happening, that both parents – but particularly Mum – would deny. They lived in a world of preferred make-belief.

My own memory of my early years is very patchy and I have used therapy to make sense of some of what I consciously remember. ‘Stuff’ from my sub-conscious memory managed to surface from the hidden depths and revealed itself too during my therapy. But I want to know what has affected me. How much more has she hidden?

I do remember that Dad would beat her up quite badly at the caravan when I was a little girl. And now we know the real story of Mum’s burns. Later, it was me who became the victim. I’m not looking forward to telling you about this next part. The thought of it makes my chest go tight, but it is an important part of the story. Please remember not to judge.

I don’t know when it all began, I only know when I became aware of things being uncomfortable. In good moods, Dad was very physically playful and we would tickle fight, carry each other and tackle each other. I became aware of not wanting him to tickle me in certain places and of being embarrassed when he playfully checked that I wasn’t developing ‘a hairy chest’. I began to dread the playful moods nearly as much as the bad moods. One day Dad and I went on a long bike-ride, back to visit the old caravan. It felt very strange going back through the site and seeing the trickle of a stream that had once been my world of play. Somehow we got into the caravan through a window. We sat on the seat that was once Debbie’s bed and mine. He began to kiss me inappropriately and to take off my clothes. I started to cry, but he continued. I was so scared, but he seemed surprised and disappointed and tried to talk me into it as he touched me and explained how he loved me and wanted to show his love; how love begins at home and this was what he needed to help him; he loved me and I could help him feel better and no one needed to know; I would enjoy it if I would let him; it wasn’t hurting anybody; it was good. I sobbed more and more, pulling away and going rigid and shaking. Eventually he got angry and stopped. He had not had what he had hoped and was very disappointed and ‘hurt’ by my ‘lack of love and understanding’. He left me to get ready and we cycled straight home, my legs like jellied lead.

From then on I was even more terrified of him, especially being alone. Every time we were alone he would ask me again to ‘cuddle’ him; he would plead with me and tell me why I was selfish, just like my mum, causing his depression and making him ill.

I knew I could not say yes. If ever I could speak, I would say, ‘What about Mum?’ or ‘But you’re my Dad!’ I didn’t dare tell him that I just didn’t want to. For some reason, he thought that me being his daughter made it more right than if he went to a stranger.

This went on for the next six years until I left home. Some days he would go on until I cried, then he would hit me and go away. Some days he just went on trying until someone else came home.

Twice he held a gun to my head, after me watching him put the bullets in, then he pulled the trigger. Once, having packed to go on a school trip to France, Daddy played Russian Roulette as I waited, desperately praying that I would be able to leave the house.

Some days I hoped that something awful might happen to me whilst out and about – having an accident or being kidnapped – so that I would have a good excuse not to go home and if I was dead, it would ‘serve them right’. Then it would no longer be my fault. It might make him happy. It might make him stop. I know it was to his credit that he didn’t ever force me sexually, but I still wonder if it would have put me out of my misery. I also feared that he might stab or strangle me instead, so I used to sleep with my back to the wall, one arm covering my heart and the other shielding my neck. I still sleep more peacefully like that.

At the time, no one admitted to knowing anything. I certainly didn’t dare tell a soul. As for many poor children in this world, it was the dreadful secret. I often wondered whether my mum hadn’t guessed what he was doing. Eventually I confided in my Isabelle, but I knew that if any word of complaint got back to Dad, my life would literally end.

About five years before he died, at our last meeting in Orkney, I told Dad how devastating this had been for me, but his response was, “I’m sorry I hurt you. You were still too young.”

About the age of 13, I had become a Christian. I still know, as I did then, how much God had protected and encouraged me throughout this time. I was also grateful that He had sent other wonderful people into my life to affirm me. I know He preserved my life.

Week One

Part One

Day to day; coming to terms with Caring.

Chapter 1   June 2007

Yesterday Mum did so well with the new regime: the clothes were left out in the right order (as discussed with the Occupational Therapist) and down she came – all dressed and smiling. (She hadn’t managed to change the underwear, so we’ll have to address that some other way. Donning clean stuff before bed is unconventional to me, but should work well enough) I felt so pleased.  ‘Breakfast Mammy?’

In the evening we tried another of  the O.T.’s  suggestions: I gave her a long broom and asked her to sweep the kitchen. She seemed happy and, after I moved precariously balanced potential disasters, I left her to it, to do my exercises before Simon returned.

 Mammy had swept the floor and there was a satisfying pile of debris to show for it. Full of praise, I issued her with a dustpan and, with lots of direction, she managed to finish the job. Success number 2.

Then she forgets and moans, “Can I do anything?” (I wish she wouldn’t phrase it like that.) “I’m just hanging about again!”

 “Conor is watching TV; I suppose you could find the sitting room and join him.” I suggested.

She found him this time.

But this is a new day. A screen of long hair sways behind another screen of cereal boxes: the boy is shoveling his way through a bucket-full of breakfast. The boy is Josh, my oldest son. He is 12 years old and enormous. He doesn’t have the same people-skills as others, but he is talented, clever and lovely. He has Asperger’s’ Syndrome, but it’s not always obvious. They call him ‘The Tree’ at school. He’s a handsome, hairy, 5’ 10”, size 11 shoe, hormonal, a ‘GREB’, apparently.

Conor is stirring, but he’ll have to go to school alone today, now Simon is working out of the house. Conor is 10 years old and an entertaining charmer. Simon now has a job at the Science Park, just a stone’s throw from Gibbons Street, where the mechanics’ yard used to be that my Dad and Grandad owned.

On automatic pilot I open the dishwasher to begin the ritual of emptying and making the lunches. 

It’s ‘Broad Glade Day Centre’ today and they collect anytime between 8.30 and 9am. ‘The Broad Glade Day Centre’ is a recently built Residential Care home and Day Centre, just a twenty minute walk from our house. Mum is taken there by minibus on Thursdays and Fridays, but she doesn’t like to go. I cannot leave Mum in the house alone and I need a break from her sometimes.

I’d better see how she’s doing with the dressing today.

“There you are at last!” she sighs with that inimitable ‘hard-done-to’ tone. “I wondered where you were. It was a long night.”

“Mammy, why didn’t you get up and get dressed? We left all your clean clothes there for you to put on when you got up; – like you did yesterday. You did really well yesterday!”

“But you didn’t come. I was waiting for you. And nobody came. So I went back to bed.”

“Remember the Occupational Therapist? You want to be independent with getting yourself up and dressed in the morning, so you don’t have to wait for anyone. Yesterday you did it really well. Here are your clothes for today… I’m making sandwiches; you get these clothes on and come down for breakfast. OK?”

Grump. Sulk. She’s not happy. But I’m not going to let anyone get to me today.

Josh is late – why do children hate wearing waterproofs? I suppose Josh loves the rain and can’t see what’s wrong with wearing it all day. And Conor just likes to be stubborn and contrary.

Mum’s not down yet, so I’ll intervene.

Good, the nightie is off, but the top is inside out and she looks upset.

 “Shall I put that the right way round, Mammy? It’s a bit tricky like that!”  We’ll try teamwork today. I’ll leave her to don her slip-on shoes independently and I’ll put the landing light on.

“I’ll go and make your breakfast, Mammy. Come down when the shoes are on.”

Conor is very cuddly this morning; he’s been good and got dressed, shoes on and hair brushed.

“Conor, when Nana comes down, go and greet her, cos. she’s a bit grumpy this morning!”

“Morning Nana?” he beams, sidling up and giving her a warm hug.

Conor is so good with her. He’s a bit cheeky, but he gives her so much time – mutually beneficial of course, as he needs an audience and she needs entertaining.  It couldn’t have been better really.

***

I feel guilty.

Why? Not doing something for somebody else I suppose. The boys are at school, Mum is at the day-centre, Simon is at work and I am ‘free’. Cleaning the house, cooking or shopping – these are guilt-free, but reading a book, swimming, even making coffee just for me, seems – naughty? Self-indulgent? Selfish? And now I’m writing, just for me – a day of indulgences.

I want to justify myself. You see I did sort the washing and tidy the breakfast stuff. I also made up a black grout to replace some loose tiles and cleaned the hall. Is that enough?

‘Guilt’, but not a ‘guilty conscience’, not about these issues. I have done nothing wrong.

Conscience kicks in when my brain, heart and spirit know that I’ve done something not loving – which is more often than one would hope. But ‘guilt feelings’ seem almost masochistic – they are not helpful, as far as can see, so I should choose to ignore them, I think.

The really big, bad thoughts are about coping, or not, with Mammy.

I can’t fetch Conor from school today because Mum gets delivered home any time after 3pm on a Thursday and I have to be here. I can do the shopping locally when she’s back, as she’ll enjoy the activity and that gives me more peace now – it’s OK Dawn, go and make that coffee.

***

My husband Simon and I met on ‘the Internet’, on a ‘Christian Connections’ website. We both knew that we were looking for a serious, long-term partner and marriage. He is hoping for children. I am prepared to honour that, God willing. Simon is a gentleman with (undiagnosed) Asperger’s Syndrome, like Josh, which presents itself, when his guard is down, in a repertoire of peculiar physical habits and mannerisms. I can trust him, respect him and love him. At the time we met he mostly worked from home, writing computer software programmes for large scientific installations. He’s an ‘electrical engineer’. He had his own home and was clearly practical as well as a computer whiz. Josh didn’t want me to get married to anybody, but thought Simon was cool; Conor was looking forward to the whole thing – especially the outfits and the party.

I was living in Kilburn, London, but had been considering moving back to Nottingham, so during the wedding plans, we also searched out a property in Nottingham.

Mums are supposed to be at weddings – especially your own. She said she wanted to come, so we put lots of thought into it and she came, with an escort, to our wedding, staying with me in my little flat – along with uncle-tom-cobbly-and-all.

the mother of the bride

It was hard work and fun, with all the last minute vanities and butterflies.

If Mum was at a loss as to what to do, she’d be in the loo, and as we only had one loo…

It was a wonderful wedding  – everyone said so.

We moved into a house in Nottingham on August the 15th 2006. It is a lovely Victorian house with traditional features: high ceilings, cornices, fireplaces and little tiles. And here I am:-

Changed.

Married.

New schools, new home, new family member/structure/dynamics.

New role for me as a house wife and carer.

No income for me.

Challenges, losses, gains, freedoms, promises, hope…

“I know the plans I have for you. Plans to prosper you and give you a future.” (Jeremiah: 29. V.11)

I’m holding on to that.

Chapter 2

Mum was born in April 1946, Dad in December 1945 – both of them just after the war, but in the days of rationing and frugality. Mum grew up in the Meadows area of Nottingham and would have been eight years old when rationing came to an end. Both of Mum’s parents had been involved in the war effort – Nana was in the land army and Granddad was a panel beater for the air force.

Mum had a passion for music – loving the Rock n’ Roll – especially Elvis. Like many young people at that time, Mum bought as many of the latest records as she could afford. She had to sell her records a few years after she married as Dad did not share her passion for Elvis and, besides, they really needed the money. I think it nearly broke her heart.

At 16, Mum – Avril – was pregnant with Debbie. That was a terrible shock to her mum, who was known as ‘The Duchess’, because she was ‘a bit above the norm’ and wore fancy clothes. (Dad didn’t like her much and called her ‘fir coats and no knickers’.) Mum had been working for six months as a typing clerk in a small office at Raleigh Industries. Being pregnant and unmarried was still considered very ‘shameful’, although Nana herself had had Mum before she was married.  Anyway, Debbie was born in May 1963, just as Mum had turned 17. They got married that Summer – all three of them. Then they moved into Dad’s mum’s house and Monica (Dad’s big sister) moved out.

Less than 2 years later, after the birth and loss of Mum’s second baby, Avril, I was born.

Dad rarely worked and what he did earn he often drank in those days. Mum was busy with us and Dad was too proud to claim any benefits. It was not a healthy pride, it was a snobby, arrogant pride that he learned from his mother, who would rather make her daughter work two jobs than claim help for herself. I remember as a child being almost proud of the poverty that they had endured in their early marriage, and loved to hear of their diet of dried NHS milk (which presumably was for us babies) and the molasses, cod-liver oil, salad-cream and bread. Mum hated salad-cream.

I knew that there had been a fire. Mammy wore polo-necked jumpers for most of my childhood, due to the severe scarring all over her chest, neck and upper arms.

The story was that she had been painting a reclaimed dolls pram in front of the open fire and had knocked over the bottle of turpentine, which had brought the fire over to her and up she’d gone in flames. It was an horrendous story, but Daddy was the hero that heard her screams and came to the rescue. He threw her to the ground, wrapped her in a large rug and saved the day. Apparently his hands were terribly burned and wrapped in bandages too.

A couple of weeks ago, Conor said to me that “Granddad had burnt Nana.” Somewhat surprised, I told him the story that we all knew, of Granddad, the Hero. He insisted that Nana had told him, so I asked her how the fire had started. She must have forgotten the original story, because she became very sorrowful and told us how Daddy had deliberately set fire to her himself. (He must have soaked her in turpentine, for the story they later used to have been believed.)

She said that he had set her alight and stood to watch her burn.

How terrified must she have felt to have the man she adored, crazed in such an atrocious act, in front of her, whilst the heat of the flames were all around her?

Why she didn’t leave him then – for her own safety and that of her little children, who must have been upstairs sleeping – is part of who she is and her weakness (or strength?). She says that he was hurting more than she was and that he didn’t want to live. Somehow she doesn’t seem to have taken it as personally as one might expect. She stuck by his story and she stuck by him. But then, if he tried to kill her once, I guess he might do it again if she upset him or got him into trouble. So at everyone else’s expense, she protected him. Always.

***

“HELLOA!” someone calls.

Mum’s back and they need to speak to me. I’m on the receiving end of behaviour reports now.

“She was a bit out of sorts today. She was teary this morning. Thought you might know what it was about?”

“Not really, she had a bit of trouble getting ready this morning and got a bit upset…”

“And she seemed to have trouble with her lunch, co-ordinating everything…couldn’t pick the glass up properly?”

What do I say? Co-ordination is definitely a growing problem.

“Well… thank you very much!”

And I am very grateful for those precious few hours when there is just me and no one hovering behind me or waiting for me. I am so selfish.

She was back in time for us to go and meet Conor on his way home from school and get the bits-and-bobs from the ‘Coop’ as well. I did ask first and she said “No”, but I really should have insisted that she used the loo before we went out. It can be very distressing for us both when she suddenly needs the toilet in the middle of the street…

***