Week Thirty-Seven

Mammy in the front garden of her very first home…

I still have done little about finding a new home for Mum and am beginning to panic. I phoned the Social Worker to see if he could help steer me in the right direction before the MDM (Multi-Disciplinary Meeting), but his advice is for me to do nothing. He said that Gold Acre had been out of order to make such a demand before a decision has been made. Apparently we will all discuss the Continuing Care Assessment and the Social Worker will have also done his own assessment before the review. He seems to be very cross at the way they are going about this. I am relieved not to be having to find Mum a home before the end of next month, but I hope it doesn’t jeopardize Mum’s chances of the best care.

It’s now August bank-holiday and Mum still has yellow bruising around her face. The weather is still fine enough for us to stroll in the garden area and, despite finding Mum rendered immobile in her room when I visit – either in the bucket chair or with her feet up on the bed – I always manage to get her up. On Saturday I got her out of a soggy, smelly chair and took her into the bathroom to change her. She was quite lucid and in much better form when she was clean and up and about.

***

Chapter 20

The boys are now back at school for the start of Conor’s year 8 and final GCSE year for Joshua. I continue decorating and Simon and I are busy setting up our new business. Who knows what other exciting challenges we have in store…

The check-up at the West Hospital was not good. The doctor began by explaining that it had been a Kerotocyst, formed from the cells that make the enamel for teeth. Good that it is not a cancerous cyst, but it does mean that it could grow back again and that we will need to keep an eye on it. When he checked inside her mouth his disgusted expression told the story before his words did. Apparently the wound was completely infected and full of puss. He did say that it is difficult to keep such a wound clean, but I don’t think he expected it to be so bad. He requested a sharp pink needle, unsure as to whether Mum would allow him to proceed, but did so armed with a bowl to catch the fluid. It was satisfyingly gross as he injected a needle full of Corsodyl to force out an equal amount of puss and gunge into the waiting receptacle. Poor Mum, the unpleasant sensation must have tasted foul. The doctor could now only prescribe a dose of antibiotics and reschedule the checkup for next Thursday. Waiting for the prescription, Mum was saying again how she wants to kill herself and then arguing that she shouldn’t. I do wonder how old that notion of wanting to die really is. Or is it a new thought? Is she capable of new thought? There is so little that she says intelligibly – “Where are the babbies?” “Who are you?” “I want to kill myself.” – these seem to be all I hear nowadays, except “Yes/No” answers. It is terribly sad, but fascinating nevertheless.

It is difficult trying to invent enthusiasm when Mum does not seem to care whether I’m there or not. She does sometimes respond when I’m bubbly and bouncy, but I don’t always feel that way. It seems that they have decided to take Mum off the Tegretol and put her on the Cepra to control the Cortical Mioclonus. It has certainly stopped the jerks already. I find her very ‘low’ though, but that may be just a reflection of my own mood? On Sunday her head was so stooped that as she shuffled around her room she would make first contact with the top of her head at each wall or barrier. I found myself following her around with my hand in front of her to cushion her head, just like you do when toddlers’ heads come smack level with all the tables and chair arms. She has started asking me who I am again too. Occasionally she finds my answer reassuring, but just as often she cannot believe me and is distressed by it. I think she likes the hugs, kisses and human contact, but there’s not much else I can do.

***

Check-up number two went much better. The infection was gone and the hole was beginning to heal. The doctor let me look at the extensive, gaping hole in her mouth. He requested some ‘BIP’, which looked like a fabric soaked in pungent, yellow ‘germalene’-type stuff. The purpose was to block food going into the hole and stop reinfection. It also allows the wound to heal inside out so that it can heal completely clean. Courageously he made to poke a strip of this smelly antiseptic ‘BIP’, with tweezers, into the hole, but she wouldn’t let him. She was outraged. She left the clinic stressed and man-handled, but soon forgot and drove away fairly happily in the taxi.

Mum’s review – or MDM – is tomorrow. I’m anxious as this is where I think Gold Acre will say that Mum has to leave them and then I expect the NHS and the Council to be in dispute about the level of Mum’s needs, suitable alternative care and, of course, funding.

***

I read again through the ‘NHS Continuing Healthcare Needs Checklist’ that Gold Acre had completed in May this year and have highlighted the areas that I consider inaccurate. I took it with me to the meeting where five of us were present: – the Social Worker, Mum’s key nurse, two other specialist nurses and myself.

Firstly one of the other nurses said that Avril was now ready for discharge and asked me whether I had been to look at homes for her. I admitted that I hadn’t as I don’t know what I’m looking for. They told me that the meeting was part of the process to decide on the question of needs and funding. The decision would then go to a Panel, who would decide the final outcome. I am still not sure what difference it will make to Mum or myself, who funds the continuing care, but understand this to be a necessary stage in the proceedings. What is important to us is the assessment they make of her needs, level of care and therefore what type of home she needs. We discussed each of the 11 categories – from behaviour, communication, cognition…through to medication, continence and ASC (Altered States of Consciousness) – with each interest group presenting slightly different perspectives. The result was that she scored one ‘severe need’, two ‘high need’, two ‘moderate need’, four ‘low need’ and two ‘no need’. The nurse had written:

“Mrs Haynes’ challenging behaviour has now settled in to a manageable, predictable pattern and no longer requires a hospital. There is a high level of cognitive impairment and all activities of daily living require meeting. Sometimes there are minimal bursts of agitation on nursing intervention. Mrs Haynes’ needs could now be adequately met in a community setting with appropriate registration. Requires a 117 aftercare.”

‘Section 117 aftercare’ is the kind of care she will need, having come off a ‘Section 3’, apparently.

She admitted that Mum’s behaviour would be much worse if not carefully managed by isolating her away from any noise. She also stressed that Mum cannot make any needs known, nor can she do anything at all for herself. I was surprised to learn that Mum has to take ‘Senna’ on a daily basis too, as she no longer knows how to push…

So, they are requesting full continuing NHS care funding, but what do I look for? The Social Worker said that he was struggling to think of anywhere in Nottinghamshire where that level of care could be replicated. The nurses were all equally scratching their heads to think of a place with sufficient registration, but where the environment would not be too harsh… Eventually the Social Worker said that he thought it was very wrong of them to have expected me – just a family member – to be able to find a suitable home for Mum, when they, with all their knowledge and experience, could not think of one suitable place between them. Good point.

Still, I do have to look. They gave me a directory of Nottinghamshire homes and discussed the benefits of different registrations, but still they were struggling to name a plausible place. They came up with two suggestions – ‘Kirk Way’ in Cotgrave and ‘Sunset Copse’ in Lowdham. They also suggested that I look at the ‘CQC link’ on the internet to see what the inspectors think of these homes. I will have a browse over the weekend and speak to the Social Worker when he’s back at work on Monday. I don’t really feel I can do this on my own.

Week Thirty-Two

Mammy loves the outdoors

On Monday I found the route to Mammy’s new sojourn much easier. She seems more settled, but was wearing hospital clothes as they still need to tag her clothes with ‘Gold Acre’ labels, as well as with name tags. She was in her room listening to Buddy Holly, as apparently she had been disturbed by some noise earlier. Her flesh was pale and peaky, but we spent a pleasant hour together before she began looking restless and lurched forward several times, looking fretful, so I asked if she was wanting to get up. She was, but I was unable to coax or lift her out of the chair, partly because I was afraid to further strain my back. I asked for assistance and two nurses came and hoisted her out of the chair. I realised that it was the chair that was to blame for the struggle, as it was designed for the sitter to be wedged in the valley of a deep triangle. Once out and standing she seemed very disoriented and unstable. She was ‘f…ing and blinding’, which is so out of character, and kept banging into everything despite her cautious footing.

We went for a brief walk around, but she was pulling against me and chose to go back to her room. I tried sitting her on a normal chair from which she pulled herself back up and indicated that she ‘should’ be back in the wedge chair. I helped her back into that and she calmed again. The doctor came to introduce himself and a senior nurse came to give me the paperwork and more forms to fill in. The doctor asked me why Mum was still on a ‘section’. I couldn’t fully answer that and felt that such information should surely have come with Mum in the transfer – certainly the assessment that his own staff had done should have been available to him. He seemed very amiable though and had a slightly playful demeanor. The nurse asked me to supply Mum’s toiletries and things and I promised to bring a better selection of Mum’s music. I was concerned about Mum’s general health and let the nurses know that as I left. They assured me that they would look after her. I believe they will.

***

Our house is still very cold and full of brick dust and mess. The new stove is still in the process of being piped in and we have suffered leaks and floods this week. Josh is taking over the task of digging my vegetable patch over and enjoyed the pleasure of having a robin sit beside him to sing for his supper as he worked at picking out the weeds. It was a beautiful moment for him and it gave me joy to see them both.

I took in the CDs and toiletries, but it was a quick visit as Isabelle’s second dose of Chemotherapy went much quicker than anticipated and I was to taxi them home again. However, Mum was in her own clothes and seemed much more content. She was sunk into the chair in her room again and we played one of the CDs. My new routine is to cream her face with ‘Oil of Olay’, which for me is Mum’s special scent. She enjoys the sensation and the contact. I noticed that her face seems very flaccid and dopey – her mouth seems to hang half open in a ‘gormless’ expression as her eyes flicker and stare at nothing in particular. But she didn’t look as pale and a nurse commented on how well she had settled in. As I left she smiled and admonished me to ‘be good’.

***

On Mothering Sunday she was in her room again, Buddy Holly still playing. I seemed to make her jump as I came into the room. She appeared very jittery and agitated. She was unwashed and greasy too, so I feared she might be experiencing problems again. I switched the music off, which she seemed to appreciate. She kept saying that she wants to go home and wants to go to bed. She was crying and moaning, then apologising for ‘being silly’. She did seem to be tired, but it didn’t seem like a good idea to indulge her in sleep at three in the afternoon. I fed her a ‘Fry’s Turkish Delight’, which relaxed her enough to talk and laugh again. The nurse had only praise for her progress and anticipates that they will take her off the ‘section’ at the next review. That will mean she’s able to go out again. I really enjoyed my time with Mum today.

***

On Thursday she was still in her room, but was looking much better. Another dose of ‘Turkish Delight’, Oil of Olay and gabble about something and nothing. I dropped in on Monica again on my way back home to take her a 70th birthday card and some chocolates. She wants me to take her to Mum’s next time.

It’s great not having to do Mum’s washing – it actually frees me to go more often, as I don’t have to wait till all the laundry is dry.

Meanwhile I’ve been chopping up lots of wood – the boiler stove is finally in place and, after a few leaks, is now burning as much rubbish and wood as we can feed it and is working well. It keeps the dining room particularly cosy, but also heats all the radiators and the hot water tank.

***

Sunday was a beautiful clear blue sky, warm and still. The nurses had brought Mum out of her room to meet me, so I took the opportunity to take her outside into the sheltered ‘garden area’. Mum was very shivery and unsteady on her feet as I almost dragged her out. We sat in the sunshine, Mum wrapped in scarves as we began to sing, laugh and make jokes. She seemed to get ‘You are my sunshine’ into her brain and couldn’t get it out again. It made us both laugh and we tried to find alternative songs to dislodge that one. We had a fantastic time for about an hour, until Mum began to feel the cold again. She looked so pretty out in the fresh air and I took a few photos. It felt like a real milestone had been reached and I’m now looking forward to more trips out with her. Again I left her happy and went out with a joyful spring in my step.

***

I’ve been thinking for a while that Mum’s face is looking different. It is difficult to discern as she is losing weight and has developed some peculiar mannerisms and twitches and will sometimes hold her head in a tilted position for no apparent reason. Anyway, she is beginning to look as if she has a wedge of chewing gum under her top lip. Debbie also noticed that she had a ‘monkey-mouth and nose’. Finally on Easter Sunday, when I took Monica, I lifted Mum’s lip to find a large white, bulbous swelling and filthy brown teeth. I was shocked. Surely if her teeth had been cleaned, anyone would have seen the swelling, which I presumed was an abscess. I called the nurse and asked her to make sure that Mum is seen by a doctor or dentist as soon as possible. She wrote it all down in the book reassuringly.

Mum enjoyed a feast of Belgian chocolates and we both had a lot of laughter with Monica. I prodded Mum’s lip, but there was no sign of any flinching or pain.

***

Debbie took Olivia and James to see their Nana on this visit for her birthday and Olivia made several short videos of them all dancing. It was a much more positive experience for them than the last time. Mum had six birthday cards altogether, from Monica, Julia, Debbie, me, Wendy and Tony. Tony’s card included another one of his poems. It is a touching poem, which he wrote 2 years ago…

SOLILOQUY January 2007 – on hearing that Avril will not be returning to Graemsay.

When I think of you I see flowers

pushing through the ragged grass

and you in your garden.

I keep the picture in my head.

In the tall grass of a garden

where wall meets wall at an angle

and little trees thrive, spore of silver lichen sweat

for times gone by.

I hear the roaring shingle at the shore

and see the moonlight

on the ocean’s rim.

The stars in the sky are singing tonight;

a myriad stars are singing and dancing.

One star alone is silent, drifts

down the night, silent.

I rage but she does not hear me.”

Copyright AR 2007.

“The roaring shingle…!

Week Thirty

Mammy on a snowy first footing only about 6 years before…

The dementia doctor has accepted that Mum will need fully funded Health Care and that ‘Gold Acre’ is the best place for her. She has agreed to apply again to Gold Acre. That means that I can go and have a look around. Hopefully, seeing the place will reassure me and at least some progress is occurring.
I’ve updated Debbie and she has spoken to Julia, who is feeling guilty for not visiting Mum.


At the hospital today, Mum was pacing the corridors and had a face like thunder. She was clearly distressed and angry, but I got her to sit down with me. She was quite unintelligible and was asking and answering her own questions with great belligerence. I got the impression that she thought she had had a fight and someone had something that belonged to her, but I don’t know. I got her to drink a glass of water, then began to massage her back and shoulders again. That did the trick. She loves the massage and her scattered words indicated that she wanted to be massaged like that forever. She smiled at me then and asked who I was. I said Dawn and she acknowledged that she has ‘got a Dawn’. I laughed and said that I was Dawn and she was Avril and she seemed to accept it and be happy. Whatever had distracted her before had now been replaced with a feeling of well-being and she was warm and responsive again. I kept up the massage as much as possible, whilst she soliloquised, “Who are you?… Avril… Oh, I see…and ‘Kaka?… I don’t know…It’s mine though… Over there…I’ll get it back.” The rest I couldn’t follow.


On Thursday evening I was at a ‘girls’ night. One lady asked how I know Isabelle and I was telling her about being disowned by Mammy, and Isabelle and her dad taking me in. The lady was horrified that my mum could have disowned me and, like many people, couldn’t understand why I then chose to take her in and care for her when she was in need. Immediately two Bible scriptures came to mind – “Honour your father and your mother” (Exodus 20) and “Father forgive them, for they know not what they do.” (Luke 23v. 34) I note that the 5th Commandment did not say, “Honour your father and your mother, only if you think they deserve it”. No matter what she did or does, she is still my mother, who brought me into the world. She did what she could, and it is for me to do the best with what I have and give all the love and support that I can.


The electric light outside makes the snow flurries dance and swirl like fireworks. This fabulous display lasts so much longer though. This winter has been so much colder than the last. Apart from my one ‘snow-drop’ there are only a few buds, no flowers at all, and it is already February. Today the garden is hiding underneath a thick blanket of snow. The path looks like a giant hop-scotch, marked out by thick white lines. It’s like Narnia, but without the white witch and with hope.
Today is day three of settled snow, but the sun has been shining and most of the roads are clear, although the pavements are still treacherous. The rooftops are dripping and all looks beautiful.


Yesterday Isabelle went to the hospital for her test results. I thank God she no longer has breast cancer. It has not spread. She has chosen a difficult path of chemotherapy and other drugs, which will continue over the next five years – to improve her chances of a long life with no recurrence of the cancer. We are going to celebrate tomorrow with a day of luxury at Eden Hall Spa.


More snow is forecast, so I went to Mum again this afternoon. She looked disgruntled and lost.
I approached with a “Hi there, you! Can I have a hug?”
She allowed the hug, but began to say, “No, it can’t…I’ve got to stay here…forever…I think…and Cacker and Tatter and Mammer…so they do!”
She looked as if she was going to cry, so I led her to a chair and we had another long hug. She indicated that something hurt in her body. I think it was her lower abdomen, so I told the nurse and tried to reassure Mum that maybe she is constipated again. With hugs, kisses and soothing words she soon cheered up. They gave her a banana flavoured ‘Fortisip’ shake, which I helped her with. She loved it. “What is that?” she kept repeating with sweet smiles. The smiles turned into giggles and raptures as I started to massage her back and shoulders again. Meanwhile, a lady with pink rimmed eyes and lilac eyelids sat smiling over at me, bemused by Mum’s changing expressions.
Another lady, who has been there nearly as long as Mum (I’ve never seen her with a visitor) hurries along the corridors, whimpering “Nobody wants me…nobody wants me!” Sometimes she will say that to a resident, but most of them do not know how to respond, so she rushes away again with a pouting, sad bottom lip and runs into the toilet. Then she starts again. She needs a hug too, I’m sure. Two of the men in there walk around trying to fix things and straighten it all out. They think that they are in charge. Nothing new there. A different lady was clutching a baby-sized dolly. She asked me some questions and I did my best to converse and to agree with her as I had witnessed her, moments before, having a shouting match with another resident. At least we were not in the room with the lady that always screams, “HELLLLLP!”
Suddenly Mum jerked and made as if to jump up. “I’d better get on with it!” she announced.
“What have you got to do?” I asked. “I’ve got chores to do… and the babbers!” she smiled.
I went to get the laundry and then left a more positive Mum to get on with her ‘chores’.


I’m glad I saw Mum yesterday. It looks like Nottinghamshire has closed down today due to snow. Most schools have closed as have lots of roads, so our day at the Spa has also had to be cancelled. Of course, Simon has gone to work. He will probably be the only one in the office.


Last night I watched a TV Programme – it was about Terry Pratchett and his fight against Alzheimer’s. (See Notes 4) He said that he wants to ‘make Alzheimer’s sorry that it ever caught [him].’ It is fascinating for me now to see someone in the very early stages of the disease, observing the first signs of deterioration. I was also interested to note that he was diagnosed as having the symptoms of a ‘variant’ of Alzheimer’s, known as PCA, where the back of the brain (normally associated with vision) is most affected. Listening to him describing his difficulties with hand-eye coordination, I was reminded of Mum’s earlier problems, although she was suffering definite memory loss too. Researchers on the programme were saying how ‘close’ they were to a breakthrough in finding a cure, but even Mr. Pratchett, in the early stages of the disease, admitted that he cannot wait that long. He had heard of a possible ‘cure’, – a LED light helmet – which he asked to trial. Subsequent tests revealed no further deterioration, but no improvements either. However, no deterioration is very positive, given the nature of the disease. I wonder whether he continues to use it. A doctor commented that he had probably had the disease for ten years before it was noticed. I don’t know whether that means that you either have it in you anyway (genetically), or that you somehow ‘get’ it and it takes a long time to manifest. I find that opens a string of fascinating and important questions. Anyhow, it also means that there must be a lot of people out there with Alzheimer’s, that don’t yet know it.


Now the heating has broken. Conor has lost his mobile phone whilst sledging in the thick snow and he is raw cheeked, cold and soaked through. But we had lots of fun and he is now outside, building a very tall snowman.
I did not go to see Mum yesterday as the trouble with the heating has meant that Mum’s clothes were not dry. Happily I could go today. Mum is still only sixty-two, but looks ninety-two. She appears to have shrunk even more – head bowed pitifully low, shaking, and shuffling along in green slippers, with the pockets of her cardigan scrunched between grubby, fumbling fingers. As I approached I watched her snap at someone, her greasy hair flat and wispy over her eyes. Despite her protests, I hugged her, her head buried in my shoulder bone. Her speech is becoming more unintelligible, but I knew she was distressed. We found a place to sit and I gave her some more banana milk-shake, lots of kisses and words of reassurance until she had melted again. She said she had five daughters and had lost them all. She was looking for Avril, Kacker, Tater, Acklewer and Wallerker…I told her that her daughters were safe and well and that she is Avril. Sometimes she smiles at me with a warm love and gratitude that is so beautiful. She is very receptive to hugs and affection at those moments. Other times she looks at me like I have three heads and horns…


I spoke briefly to one of the carers to ask him what he knows about Gold Acre. It is another hospital ward, so she will only stay there until her mood and behaviour are stable. Then she will have to be moved again. I thought that she was being kept at St Peter’s Wing until she was stable and then they would find her a permanent placement. He said Gold Acre is about two miles from the East Hospital. I don’t see the point in moving her twice.


When I returned from sorting her laundry, Mum was standing singing to a table full of people.

Week Twenty-Three

“This is your life” – At Porchester Road

Today as I set off to see Mum at the hospital, I felt a great peace. All shall be well.

I had a chat with the lady in charge, then booked Mum’s belongings in and labelled the CDs and ‘This Is Your life’ book, that I’d taken.

Mum has had food, drinks and medication during these 24 hours and allowed herself to be washed and changed. She is much less angry today. There seem to be a lot of staff around who showed an interest in hearing about Mum and were very accommodating, particularly considering that I was there out of visiting hours. The general environment is much more volatile than Mum is used to, with lots of sudden, dramatic incidents, screams and mini emergencies.

I went nervously into the dining area where Mum was and said, “Hello Mammy”, and went to hug her. I got the old response of tears and hugs, so I took her away to a quieter room, where I could help her with her food and pray with her. We did both successfully. She appears to be hearing many voices and conversing with them all simultaneously. She keeps mentioning having a baby and being too old and she seems to be seeing and hearing Daddy all the time. Sometimes ‘Daddy’ was distressing her and she started giving me shifty looks again, but she would switch from fretting, to giggling, to smiling, to laughing outright and back to panicking again, all in the space of a what outwardly appeared to be a complex monologue.

I found some of the residents a little alarming, but a quiet male resident came to join us after dinner and we put on an Elvis CD. Mum and I danced through the whole album.

Mum intuitively knew when I was about to go and asked would I come again. Of course I will. I feel very positive about all this now, although I’ve no idea what is next.

***

On Sunday evening I went back to Broad Glade, with Conor, to get more of Mum’s things and then went to the hospital. Unfortunately, it was the sad and angry Mum we encountered this time, hissing at us to ‘Go away’ and turning both Conor’s and my legs to jelly again. I didn’t know who to talk to or what to do, so we exchanged clean for dirty clothes and came away. Conor was very disappointed and I felt sorry that I had taken him. I had taken him to reassure him that Nana was happier again, but…

Julia is planning to go and see Mum tomorrow, so I’d better warn her, as I’d told her that Mum was better again. I won’t go tomorrow and I won’t be taking Conor until Mum’s behaviour is more predictable.

***

Julia went anyway and was ‘devastated’ to see how much she’d deteriorated. She described Mum wearing some ‘granny apron’ that was open down the middle. Apparently the conversation went something like:

“Hello Avril. It’s your sister.”

“No, you’re not!”

“I am, I’m your sister, Julia.”

“NO. You’re not!” said with such a look of anger and contempt – it just wasn’t Avril, she said.

Apparently Julia was on her way out again, when Mum called out to her, “Who are you?”

“I’m your sister.”

What’s your name?”

“Julia.”

Mum then sneered at her and Julia turned and left, without looking back. She wished she hadn’t been to see her there. Julia thinks it’s worse for us than it is for Mum; but I don’t think that we can know how it is for Mum. As far as I can see, Mammy is in a very bad way at the moment and she is finding life quite unbearable.

***

I spent about five hours working today – planning for my teaching job in September. I had horrible dreams last night about being in my new class, with uncontrollable children and unsympathetic Teaching Assistants. There is so much happening in my life that I have no control over, so I guess the dreams are not surprising.

The house and garden are a terrible mess. The hot-water immersion doesn’t work and the shower switch has decided to break as well, so Conor and I had to wash in the hand basin this morning. The cooker and the microwave are on the blink too, but we won’t let them get to us.

I really want to speak to a proper doctor at the hospital and get a prognosis for Mammy. I spoke to a nurse who said that it is difficult to discuss these things over the phone and that I should just ask to speak to a qualified nurse when I’m there next. He also suggested that I speak to Mum’s new dementia consultant. I’m not sure why they have swapped consultants. All he could say is that Mum ‘sometimes needs restraining, when she invades the personal space of others’. Also, he explained that it is difficult to get near her to wash her or give her food and medication and that they are having to give her space to observe her.

When Simon returned with the car, I went with Mum’s clean clothes, not knowing how I might find her.

I was met by a friendly nurse, who invited me to a carers’ meeting tomorrow at 2.30pm. I passed the lounge and saw Mum sitting smiling and relaxed on the couch. Great. I sorted out the laundry and came back to sit with her. I could see that she was doped up, but she was quite lucid, ‘chilled out’ and lovely. Several times she asked me if I wanted something to drink or eat. She referred to Dawn a couple of times and then laughed at herself when she realised that Dawn was there. She also said, with a smile, that ‘he’s still up there!’ and I guess she was referring to Daddy ‘upstairs still’, as he often was, at home on Porchester Road. We shared some memories of the cats, the goats and some of the clever things that Dad made over the years.

I then said that I needed to go fetch the boys and she asked if she could come with me, but I replied that they could use her help there and she glanced around and agreed.

I don’t know what it was, but I could have enjoyed a dose of that ‘chilling juice’, too.

***

Last night I felt so incredibly tired, that I could hardly stay awake for the boys’ bedtime and prayers. I couldn’t get up easily this morning either. I was ‘babysitting’ and had errands to do before the ‘carers’ group’ meeting, at 2.30pm. On arrival, I hadn’t a clue where to go, but I saw Mum and went to say hello. She smiled as I came to her and hugged her, but when I called her ‘Mammy’, she stiffened up and said,

“You’re not my Mammy!”

“No, I know,” I laughed, “You’re my Mammy and I’m Dawn!”

Her eyes narrowed and she pulled away again, doing the “No, you’re not…”

“Look at me, Mammy,” I said shrinking myself down, to be face-to-face with her, “Don’t I look like Dawn to you?”

“You look like her, but you’re not!” she insisted.

I made a sarcastic retort and excused myself to find the group before it was all over. The group consisted of 3 professionals, four ‘relatives’ and me. The nurse that I’d met yesterday gave me coffee and looked after me, as I was a bit tearful. The group were mainly coming to terms with Power of Attorney issues, hospital visiting conditions and stuff. The staff spoke about ‘Memory boxes’ and said they were impressed with Mum’s ‘This is your Life’ book. One qualified nurse commented on how useful it had been already for her to connect with Mum.

I really just wanted to know about the ‘What’s next?’ issues and what I need to be doing to support whatever is supposed to be happening. The nurse explained to me that under Section 2 of the Mental Health Act, Mum being sectioned means that she cannot leave the ward for 28 days. It also gives the hospital the right to calm Mum with drugs if necessary. That was what they did yesterday – injected a dose of Lorazepam. I asked why they didn’t give it more often, as she seemed so responsive and happy on it, but apparently it is addictive, which I wouldn’t have thought matters too much at this stage, but it therefore also loses its effectiveness when used often.

It is too soon for them to know what is best for Mum, but they will do the NHS ‘continuing care checklist’ themselves and that will then be sent to Social Services. I asked about Mum’s room at Broad Glade and she suggests that I speak to the Social Worker about this. It was good to speak to the nurse. She said that I must always find someone to speak to before I leave, rather than bottling up questions and issues. I feel a bit less lost now.

***

On Friday night I was at the hospital again. Mum had had another shot of Lorazepam and was ‘chilled out’ on the bed. I found happy ways to keep a conversation going and wished I’d brought Conor with me. I took a photo of her smiling, to show him.

I’ve noticed that she seems to be becoming racist. She told me last week that she can’t stand the staff nurse and today she was negative and unresponsive towards the carer coming in to offer tea and sandwiches – both of these ladies were friendly, gentle and brown-skinned. When the ‘tea-lady’ left, I asked Mum did she want some tea.

“Coffee please. And a sandwich if there is one,” she replied.

So I went out and told the lady that Mum had changed her mind. Mum was huggy and sweet to me and she seemed to remember a lot from early days again today. It’s a shame that she can’t stay like that.

Week Five

We arrived in good time to ride the car park helter-skelter to the 7th floor, and then had to descend the stairs on foot. This is challenging for Mum, but she managed exceptionally well today. We got a good rhythm going. “1,2,3…9,10 and round the bar on the flat… and 1,2…” all the way down. It generated a good few smiles from the other visitors. The West Hospital is well sign posted inside, but it still takes some concentration to get to the right block, the right floor and the right department. I got it wrong. It didn’t seem to matter and we didn’t have long to wait today.

The Neurologist wasn’t a native English speaker and Mum found her difficult to understand, but she was very sweet to Mum, explained things well and listened well to me. She concluded that Mum has a ‘form of’ epilepsy – (not the more well known one) – that is affected by ‘frontal lobe seizures’ and is linked to the progression of the Alzheimer’s. She will have to undergo some kind of ‘brain wave monitor’ to be sure of this diagnosis, but that won’t be today. With epilepsy she will have to be on medication, which may have side effects and…she will see us again in November. Meanwhile, if she goes all ‘stiff and purple and foams at the mouth for 5 minutes’, then I am advised to call an ambulance.  Apparently the ‘wobbly eyes’ is also a symptom of the Alzheimer’s and nothing can be done about that.

Back up 7 flights of stairs and then spinning the wheel back down again. Only £2.50 for the parking this time. Looking through my calendar I see that today was our 25th appointment at a clinic, hospital, dentist or optician since January. That doesn’t including all the regular trips to the GP. That’s well over £50 in parking fees as well. I now tell Mum she’s going to have to dream up a complaint with her ears, nose or kneecaps, as these are the only bits that haven’t been thoroughly examined yet.

It was still early so I delivered her to the ‘Broad Glade Day Centre’ and went off looking for cards and presents. I went into a local gift shop and came out feeling very fortunate. No matter what your circumstances, you always manage to meet someone who has been through something worse than yourself.  I mentioned my situation with Mum and realised again how very blessed I am to have such a supportive husband. Simon positively encouraged me to keep her here, at least until we could decide what to do, but he wouldn’t have let me send Mum back to Orkney, even if I had wanted to. This lady’s husband is refusing to let her care for her mum at home and she was heart-broken.

***

Mum loved her home, ‘Clett’, on Graemsay, where she could roam all day, and always someone would find her and bring her home again. She used to tell me she was ‘in the safest place in the entire world’. Maybe she was, but if the council would oust her and put her in a home, miles from her family and friends, she would possibly wither and die, confused, angry and terribly sad. I can’t think how awful it would have been.

When Simon married me last June, he suddenly had a family of four. He knew he would be taking on the boys, but neither of us expected a mother (in-law). It was a strange four months before Mum came and it seemed somehow unreal.  The boys were settling in really well, which was a great relief, and Simon was hardly affected by the change of location, as his work and pastimes (the computer) had come with him. But I was very unsettled and anxious. I had busied myself with domestic stuff and exploring the garden. The big job was to rid the garden of the ‘ground elder’, which was a huge, underground, spaghetti root-ball extending the length of the back garden. There were rosy apples relentlessly showering the garden for much of that time and I was busy finding good apple recipes. I visited friends, attended school events and became ‘Parent Governor’ at Joshua’s secondary school – which seemed necessary for my professional development and interest.

There was also the possible luxury of Simon and I slipping away together after lunch… I became pregnant and tried to get plenty of rest, reading and living very much in that hormonal chaos of early pregnancy. The overstated, ‘blooming time’ of sore boobs, greasy hair, nausea and ravenous hunger.

Then we went for our first scan – 6th December – so excited.       

The baby was dead.

The shock numbs all sense.

Medical intervention was deemed necessary as I had a long journey to make to Aberdeen, to meet Mum for that first Christmas holiday.

So I did the hospital and fetched Mammy from Aberdeen, for our first Christmas together since I was 17.  Roger, our friend from Graemsay, had taken Mum down to Aberdeen and booked us all in for the night. The plan was for Mum to return to Orkney with Roger on 8th January 2007. I was then going to look for supply work at local primary schools and other ‘early years’ settings…but seemingly that wasn’t part of the bigger picture.

A man’s heart plans his way, but the Lord directs his steps.’ (Proverbs 16:9)

***

Tonight Mammy had what I think is another little fit. It didn’t look all stiff and straight like the Neurologist demonstrated earlier, but she was shaky and jerky for about one minute. We were watching a film and she had begun to doze. Again she sat up suddenly, wondering momentarily where she was.  I wonder how many of these episodes she actually has?

I first noticed these ‘fits’ on March 12th. Mum had had a shower and I was helping her on with her pants, when suddenly she was less responsive to instructions and then began to topple backwards. I remember it all being in ‘slow motion’, as I caught her and tried to hold her upright to steady her and get a response. She became very heavy and as I tried to sit her onto the chair she began throwing her arms and head about and shaking in a jerky sort of way.  My heart was pounding, but Mammy looked up at me and said “Am I ready yet?” with a big smile. She had no idea that anything had occurred, so we came down and had breakfast – I thought maybe she had low blood sugar – and she was absolutely fine. As I was putting her plate back in the kitchen, there was a slump and thud and she was out cold on the floor – her head just missed the brick hearth by an inch. Again, swooping to her side to reassure, her arms, legs and head threw themselves about shaking jerkily and then she came back round. This time she looked very drained and was confused to find herself on the floor. I sat her down and pulled up close beside her to hold her and try to explain what had happened…and she went again, within minutes – slump, jerks, shakes and back again. Simon called NHS Direct and an ambulance. The paramedics came and we took Mum to the hospital to be monitored. It was a very unnerving experience – just not knowing what might happen next and having no control. 15 weeks later we still don’t really know what it is, or when or why it may happen again, although we do suspect epilepsy and are hopefully en route, via the neurologist, to a conclusion.

She had another episode in the bath on May 15th,  and that one tonight, but I’m sure she has had many more. On that first Saturday, when she went into hospital overnight, (ostensibly to be monitored, but wasn’t) I phoned a couple of people from Orkney to find out whether this had been a common occurrence in the past. I discovered that several Graemsay residents had all witnessed Mum’s ‘funny turns’ and that once she had even been helicoptered over to Balfour hospital, after one such episode. I also learned that the doctor there had reduced Mum’s dosage of Aricept because of this. Some communication between health professionals could have been useful here. When I went to collect Mum from hospital, after ‘being monitored overnight’, I gave the consultant this information from the islanders, and he said to discontinue the Aricept altogether, admitting that he was aware of such possible side-effects. I was particularly cross that when she came home it was obvious that she had not even been undressed for bed and came home with the tube for the needles still in her arm.

***

Another morning: and I nearly slept through it. Simon kindly let me have a Saturday lie-in, whilst he got up to see the boys off to Music School. Mammy got up very early too, but was happily being entertained by some Saturday morning programmes on the wireless. I say happy, but apparently she needed a hanky, as a lady on the wireless was recounting her ordeal of when she lost a small child… I would no doubt have been blubbering too, had I been awake and listening. I emerged after 10am and later I asked Mammy about the child she lost.

There are 22 months between my sister and I, but between us, on 15th February, 1964, another baby girl was born and was named Avril, after her Mammy. The baby died. Mammy can’t remember whether she was weeks, days or only hours old, or even whether she was born dead. She remembers that no one else was in the house, that the baby was ‘tiny’ and she remembers Daddy being angry and blaming her. Apparently, the baby died minutes after being born and her sister believes it was because Mum had starved herself, in order to feed Dad and baby Debbie.

Dad can’t have been angry for long, as I must have been conceived within the next few months.

I have very few (conscious) memories of our first house on Herbert Street. I remember being served privet leaves for supper once, after being warned not to eat them off the bush. I remember that the house was one of a terrace and that one winter it snowed so much that the back gate was nearly buried and Dad leapt over it with such style. Sometimes I was so proud of my father and thought him very cool and handsome. Most clearly I remember our bedroom at Herbert Street – early one morning, in May, just after I became 4years old, Dad came upstairs, sat on the edge of my little canvas camp bed and told us that we were leaving the house and going to live in a caravan. I took a mental photograph of that room, which has never left me. I have had other, hypnotherapy-induced memories of that house dug out of my sub-conscious mind over the years – but they were very sad and scary.

***

Chapter 4

Mammy has come down in her vest and trousers, so I fetched her a top and she wants to find her shoes, so we are going hunting. She has a funny way of saying things to sound as if she has understood everything.

“It’s that way,” she grinned, with both arms out, pointing in opposite directions.

Gradually she inched her way hesitantly down the hallway and then turned, as if to come back, but I was in the way, so she continued…recognising the stairs, going up…and straight along to the bathroom.

“I’m here”, she announced. She had forgotten what she was looking for, so I reminded her of the mission. She remained standing.

“Is this your bedroom?” I asked, almost surprised.

“I think so”, she said, looking at the bath and peering gingerly at the label on the door. Realising it was the ‘bathroom’, she laughed.

Eventually she did find her room and had no trouble exchanging slippers for a matching pair of shoes. Well done, Mammy.

Back in the kitchen, she was hovering behind me as I prepared food for the freezer.

“Who said you could watch me?” I laughed cheekily.

“But you’re my Mummy!” she whined in a pretend little-girl voice.

It’s funny, but more than one person has introduced me as ‘Avril’s Mum’ already. I guess the roles get fixed in the brain more than the ages.

We are going out to a restaurant this evening, so I suggested a rest first, since she was up so early today.

“Do you know where to find the ‘sitting room’ today?” I checked.

“Of course I do…it’s here, where we live!” she laughed.

I must take her for a bath soon. I wonder what adventures we’ll have today?

We had a lovely evening at the restaurant, but I was a bit worried at first, because when she sat down, Mammy looked as if she was having a panic attack. A cacophony of voices and other restaurant noises enveloped us and it was all too much for her. I was trying to help her choose a main course and I thought she was going to freak on me again.

The last time I took Mum to church in town she did freak and cry and I had to take her out. She complained that the noise was ‘just so intense’. It is loud. We discussed how it felt for her and whether earplugs might be a good idea. I think it might be like it is for babies – they cry when there’s a lot of noise that they cannot understand, but as we get older we understand the noise and can tune some of it out. Some autistic people cannot tune it out either and maybe Mum can’t now? I don’t suppose it’s worth having the ears examined – I’m sure they’ll just say that it’s another symptom of the disease. Then we’ll be down to just ‘nose and kneecaps’.

Before we went out Mum gave me a big hug and thanked me for everything and for looking after her so well.

“I hope I don’t annoy to you too much?” she said. Of course she does sometimes, but that’s my problem.