Week Eleven

Chapter 8

Happily we now have her EEG appointment, for the 20th of this month (EEG is Electroencephalograph, which is a test to record the electrical impulses that the brain produces whilst sending and receiving messages from the body.) Basically they want to do a ‘sleep deprived EEG’, which means keeping Mammy up all night before the test. In recent weeks, after dinner in the evenings, Mum becomes overwhelmed with tiredness and goes almost immediately to bed. Sometimes she wants a nap in the daytime as well and becomes panicky and tearful if I don’t suggest it. The hospital say I should do my best and I do want to know what is causing the seizures. The Consultant Neurologist called them ‘frontal lobe seizures with a quick recovery’.

I let Mum have a relaxing day and tried to keep her buoyant and gently entertained (good old Conor) and after dinner, I went to get some sleep. Simon offered to stay up with Mum and he let me sleep until 3am. I took over, made coffee, showered us both, had breakfast and listened to some more dancing music. The taxi came at 7.45 and I felt very pleased with our success – a real joint effort for this one.

The nurses in Neurophysiology measured Mum’s head, making little crayon marks on her scalp. They had asked all necessary questions and were good at entertaining Mum, so after watching them sticking the little electrodes to her head I left her, looking like an experimental hedgehog, in their capable hands. When I went back, she was already in the waiting room, looking rather disoriented but free to go. Our doctor should get a report sent to them in 3-4weeks.

***

It’s the 3rd of October today and Mum and I are both miserable and tearful. Since the Summer I have not felt my usual bounce and optimism. I need some more help.

Mum is finding ordinary things harder than ever now. The O.T. says I should encourage Mum’s independence, but more often than not the getting-dressed routine has failed. She won’t ask for help or admit that she needs it when I offer, so I have to take control and take over. She stares at the walls and follows me around, so that to get on I have to constantly say, “Excuse me, Mammy” or physically move her to one side. She doesn’t sit down for long. Her noise sensitivity is becoming more severe – yesterday I put some music on whilst I prepared dinner in the kitchen. She hid in the toilet, but couldn’t say ‘the music is too loud.’ She won’t say if she’s cold or hungry either, just looks at me with a hurt expression whilst I guess. Increasingly the answer to any question is,

I don’t know!”

Do you want tea or coffee?

“I don’t know”

Why are you crying, mammy?

“I don’t know”

Shall we go out?

“I don’t know”

Yesterday Mum had another activity-packed day and again she told her sister that she doesn’t do anything, so I bellowed into the phone that she can’t remember what she has done. Then at prayer time, when invited to say her prayer, she complained, “Not really, I’ve done nothing.”

“Pardon?”

“Well, I don’t do anything all day!”

I wasn’t very nice and said how I spend my days trying to keep her entertained and happy – for what? I might as well not bother. Conor was angry with me:

“It’s not her fault she forgets. She enjoys herself at the time. And she should be here; she entertains me.”

Stress, depression, frustration, ulcers and now ‘guilt’ to boot. I knew I was being cruel. I want her to wake up. Conor is right. My selfishness is my fault.

A couple of days ago she was crying that she just wants to be normal. It hurts her that she can’t do ordinary things. Picking up a cup, using a knife and fork – these things are often just so difficult for her. She perseveres when it’s food, but not for clothes or for anything else.

I get frustrated because I can’t make her better or, worst of all, I can’t even make her feel better.

***

That night I went to my first of a series of eight ‘Carers’ group’ meetings. We all had to introduce ourselves, saying who we were caring for, something about the circumstances and what we found most difficult. I kept mine brief and vaguely humorous, but afterwards a lady told me that of all the stories, she found mine the most touching. She felt that having a young family at home as well was too hard and that she was thankful that her children had not had to witness the misery of dementia. The stories were all very different and represented a whole range of caring for spouse or parent – some at home, some hospitalised; a whole range of ages, but all had a fairly recent diagnosis of dementia. The descriptions of the ways in which the dementia presented itself were unique to each family, but very recognisable. There was a hum of empathy and agreement as the listeners recognised behaviours, symptoms and traits that they too had had had to deal with in some form.

***

Last night was my second ‘Carer’s Group’ meeting. The speaker was good at his job, but I found the content repetitive and unhelpful, as I had already spent the last 10 months battling to come to grips with much of the system. I suppose I was reassured that I had left no stone unturned.

I have tried extra hard again this week to be patient and encourage conversation. The trouble is that she doesn’t seem to enjoy her own company, whilst I love quiet time and reflection. She doesn’t actually know what she wants to do. I know she likes walking, visiting, eating and drinking, music and some occasional TV. If I suggest any one of these activities, she will invariably say “Yes” and, as Conor says, she will enjoy it at the time.

Mums ‘prayers’ have been an interesting reflection of her emotional state over these months. When she first arrived with us, she would say she couldn’t find words to pray and would fluster and stammer. After a couple of months her ‘prayers’ began to express how lucky she felt to be living with us; how she loves us very much. By August the ‘prayer’ had become a self put-down – how she hadn’t done well, had been selfish or mardy and how she would try harder tomorrow. I always feel the need to address these negative comments afterwards and remind her of the good things she has done that day. These last three weeks her ‘prayer’ has been more of an expression of her boredom and frustration of how useless and under-stimulated she feels.

I have inhaled the roses and the chilly warmth of Autumn earth and dancing red leaves.

I am looking at my life to see what would enrich me, make me more alive and fruitful and a better person for us all to live with. I was breaking off the dead geranium flowers, reflecting on how they have flowered fantastically since I planted them out in the spring. I wondered at how difficult it is for me to discard the unfruitful parts of my life, how I try to carry all the dross and still expect to flower. I need to nourish my own soil and do some overdue pruning.

***

I took the boys to ‘Goose Fair’, whilst Simon stayed at home with Mum. The fair was fun and when the boys felt sufficiently dizzy and sick, we began the long walk home. I took them on a trip down my ‘Memory Lane’. I showed them my old College, then we walked through Sherwood, where Debbie and I had tried some of our early financial enterprises, selling stuff from Mum’s shop and setting up an egg-delivery round. From the same era, we explored Woodthorpe Park, which had us occupied for hundreds of hours as kids. We passed the shop where I had done my paper-rounds and Saturday job, past my old house on Porchester Road, smiled fondly at Pa’s, where the boys used to stay when they were little. It took us two and a half-hours to explore and I came home feeling quite disorientated. Such a lot of memories. Part of me is seeking memories, seeking to make sense of, and celebrate, the whole jigsaw of my life.

***

On Sunday I told Debbie how things are for Mum and she was very supportive. She wants to help, but can’t. She may be able to offer us some support before Christmas. She will back me and help me if I choose to put Mum into a home. I hate the thought of doing it, even if I believe that it would be better for Mum. I spoke to the boys about it too, explaining that the carers in Homes have more energy, because they do 8 hours a day for 6 days, not 24/7. Also she would have more company and we could still bring her here to play, but we wouldn’t be tied and she might get less bored. Conor is fabulous with her and I acknowledged that. I thought Conor would be angry with me, but he seemed very understanding. He would miss her. He’s finally got one Nana at last and she might have to go away again. But at least she wouldn’t be a thousand miles away in Orkney.

I’m afraid that Mammy will be angry with me if I make her go.

I’m sure I won’t be the first person to feel they have failed a loved one, when they finally admit to not being able to cope alone any more. I don’t know when I’ll do it. I’m not desperate yet.

***

Today I told my therapist about my relationship with depression and sexuality and about the fire that scarred my mother. I know how terrifying it was to live with my father and how much Mammy must be still emotionally, as well as physically, scarred from those 32 years. Her fear and love of him made her incapable of responding rationally and leaving. She protected him by her lies and secrecy and therefore made external help impossible. She was trapped. She is still trapped.

***

It is a beautiful ‘All Saint’s Day’, with cool sunshine and fiery leaves whirling in the breeze. The last of our apples are lying in the golden grass and the still unripe corncobs are rustling in the wind. Yesterday I had four hours to myself. Nobody in the house but me. I prayed, cried, read, did some correspondence and sanded and waxed another shelf. It was great.

Last week Mum was in ‘Respite’, whilst we all went away. Simon took Mum to the home this time, because Mum doesn’t seem to get as upset with other people as she does with me. But I was glad to come home. Simon and I haven’t been so close since the summer; since the last miscarriage. Whether it is due to his depression, mine or Mum’s, I don’t know. Perhaps it’s a lack of time alone together, but it’s been an uphill struggle. Simon is going off walking with friends for the next 3 days, so I hope it refreshes him.

Mum was very well after her respite. Her ‘prayers’ on Saturday had returned to how wonderful we all were and how much she loved us. By Monday night, however, it was back to how she ‘hadn’t tried hard enough’ and was ‘sorry for being mardy’, and last night we were right back to how she hadn’t ‘done anything at all. Not a thing all day’.

I have spoken to Social Services. They have put Mum’s name on the long waiting-list in ‘Broad Glade’, where she has been staying for ‘respite’. It is also where ‘The Broad Glade Day Centre’ is, so she is well known there already…There is another place, even closer, that I should explore, but haven’t yet.

I know Mammy has every right to have her needs and wishes met, but what should happen when those needs and wishes conflict with the needs and wishes of those around her, or what if they are not good for her? I guess I’m not sure quite how responsible I should be for her every happiness, if it conflicts with our well being. I know that most of my life nowadays is about keeping Mammy happy, but it isn’t her fault. It might be easier if I looked at it all differently, but I can only see things Dawn’s way.

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.