Week Thirty-Three

Mammy, the dancing Queen and music lover

A week later, back from Ireland, I learned that the ward dentist had referred Mum to the Maxillofacial Unit at the West Hospital. I asked Gold Acre to inform me of the date, so that I can go and hear for myself what the doctors have to say.

I finally took Monica out for her birthday treat, then Monica came with me to see Mum. We decided to hoist her out of her bucket chair with a view to a stroll in the sunshine. I was horrified at how unstable Mum seemed to have become. There is no way that she can get out of that chair alone. It took time and a large dollop of encouragement to keep her standing without wobbling. We all but dragged her to the garden, but once outdoors she was off like one of those squash balls in slow motion, bouncing into all the walls. Apart from toppling the bird table, she had fun and enjoyed the sunshine and the breeze. I do need to ask why Mum spends so much time in that chair.

***

The following day I phoned Gold Acre and found the ward manager very calming and sympathetic. He asked me if I had any concerns to which I replied that I would welcome an opportunity to discuss Mum’s ‘care-plan’, as I have no idea what medication she is on currently and ‘I do have some issues’. I imagine he was groaning inwardly, but he remained very encouraging. He said that Mum’s consultant was ‘on holiday’, but that on his return I would be invited to the weekly review. I did express some concerns about her mouth, hygiene and her ‘triangular bucket’ chair.

***

This Friday, three weeks after the ward dentist saw Mum, I have been given an appointment date for the Maxillofacial Unit – 20^th May. That is satisfyingly sooner than I had anticipated.

Before a trip to London, I finally contacted Mum’s friend Wendy. When I next went to Mum’s I spotted a bag of large chocolate buttons and said, “has Wendy been to see you?” and she said “Yes, yes she did.” It is unusual now for Mum to actually say a complete sentence, even one as short as that, so Wendy must have made an impression.

After getting Mum suitably animated with Gene Vincent and Kenny Rogers, I took her hands and, with a “shall we dance, Madam?” managed to coax her out of the bucket chair. Dancing was a bit strange – more like a clumsy smooch around, but Mum seemed happy to be up. She does bump into everything when left to her own devices, so maybe that is why they prefer to keep her sitting – for health and safety reasons.

Julia has decided that she does not want to see her sister again. She wants to ‘remember the old Av’. She admitted that her angle might seem selfish and I tried to give her a different perspective. But…

***

I think that some of my concerns were heard, because on Friday the ‘bucket-chair’ was gone and an ordinary chair in its place. Of course that meant that Mum was wandering around the corridors, getting lost in unfamiliar territory and bumping into everything.

I must write down some questions for tomorrow’s meeting with the new consultant. Care Plan? Medications? Section? Daily routine/hygiene? Meals? Behaviour? Exercise and Stimulation…?

***

So I got my list of questions out… Medication was a straightforward one. She’s still on the epilepsy control (Tegretol), the anti-depressant (Trazodone) and the anti-psychotic (Haloperidol). The latter he has already reduced from 3mg to 1mg daily and intends to drop that one altogether. If the hallucinations and distress come back, he plans to try ordinary anti-dementia type drugs like the Aricept. He said it all so matter-of-fact. I was sort of anticipating that this would happen with the Haloperidol, but I didn’t expect the hospital to do it after spending all this time finding drugs to stabilise her. But I didn’t say any of that, because I don’t think of the right words to go with my thoughts and feelings at the same time. I don’t want her to deteriorate again now she’s finally content (-ish).

He said that her progress is reviewed daily by the staff nurse and three times a week more officially. He does the rounds weekly, but has been away for a month. He mentioned the growth in her mouth and that he had noticed some cellulite on her leg, for which he’d just started her on antibiotics. He asked if Mum had ever had a firm diagnosis and, as I tried to explain, he too said how it was ‘all just academic’. We discussed Mum’s deterioration since 1997 and whether any of us offspring would like to be tested to know if we have that specific gene to cause early onset Alzheimer’s…? He thinks that Mum has both Alzheimer’s and a type of vascular dementia, because she presents such big mood swings and the psychosis. He said that Mum has been taken off the ‘Section’ so I asked whether I could now take her out?

“You could always have taken her out. You only needed the doctor’s permission!” was his astonishing reply.

I don’t know where I could take her now though. It is a scary prospect and I couldn’t do it alone. She is a bit more mobile again now that she is not perched in the ‘bucket’ for hours.

He also said that Gold Acre is ‘a hospital unit for complex needs and behaviour issues’ and that their job is to stabilise patients ready to send them into more permanent home settings. This I did know, but I had put it to the back of my mind, since the last assessment was that Mum would continue to ‘need at least the same level of care as at St Peter’s Unit’. He said that he would expect Mum to be able to move on in a few months and asked me if I had somewhere in mind? I do not have a clue. How could I know? She isn’t ready for an ordinary nursing home, even one dementia registered. He reassured me that a Social Worker will get involved again when the hospital decide to send her off and that they would all help to place her appropriately.

I tried to ask about daily routines, stimulation and care-plan, but that clearly was not his expertise so he referred me to Mum’s key worker who is…we don’t know? I must find out and run the rest by them. The consultant has given me plenty to think about.

***

Mum is becoming tearful and unstable again – possibly the result of a reduction in medication? Today I met her shuffling the corridor with that look of confusion and rage that she had before.

The nurse said “Look, here’s your daughter, come to see you!”

Mum glowered and said “Who are you?”

She looked angry and started to scream, mimicking Betty (another resident). I took her back to her room away from the noise and closed the door. I asked if I could have a hug and she said that she didn’t have any.

“No hugs for me?” I questioned

“Well I suppose…”

I forced her arms around me and cooed and encouraged. She started to cry and said,

“I want to die…Well, you can’t… I want to kill myself…No, you can’t…”

I just held her, prayed and told her how loved she was. Then I creamed her face, so that she would smell like Mammy again and we both sang and laughed, whilst I fed her lunch. Someone had tied her hair back in double ponytails and she looked very pretty.

When I made to leave, she playfully said, “No, don’t go!” We were both smiling and bouncy when I left.

***

I was nervous about them taking her off the Haloperidol, but this time she seemed fine. She had had her nails painted and was wandering the corridors, singing to herself. She was playful with her gabbling and entertaining the ‘babbies’. The hallucinations are much stronger again, but seem positive. She is often questioning the babbies and telling them off. “I’ll kill you!” was a more extreme reaction, but the babbies are never far away. She was making creepy sounds and faces to a ‘rhyme’ and then building it up to a scary finale to make them jump. She was clearly enjoying herself. She seems to understands the majority of what I say, but unfortunately I no longer understand most of her replies. It doesn’t trouble me, though I would love to know what she is trying to say.

Before leaving I went to check about Wednesday’s Maxillofacial appointment. We discussed how to transport Mum and concluded that a wheelchair and taxi would be easiest all round and I will meet them there.

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 70^th 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-One

My Nana with Avril and Julia as youngsters on holiday.

This week has been busy and different – fun even. As a school Governor, I have been eagerly involved in the exciting and a daunting responsibility of headship interviews.

Yesterday I enjoyed Mum’s company too. In herself she seemed content and playful. She was all clean, sitting alone in the silent music room when I found her.
“So, what have you got to tell me?” I chirped, holding her hands.
“Dabberdaberdada, batterbatter…Cacker a mama… and some food!”
“Right! That’s me told!” I laughed.
Mum was smiling, eyes closed.
“The babbers?..they OK?” she asked me. I said they were.
“Not much clucks, no!.. I just make ’em up as I do it.” She began to giggle. “The babbers are going off and badadaba…daft things!” Mum hooted with laughter and began to giggle hysterically.
“What is it, Mum? Come on, share the joke!” I pleaded.
“It wasn’t me; it’s Callus…I can’t remember now.” She flung her head back and pretended to snore, a wide grin across her cheeky face.
“Somebody else a popper da babasee plos…Yes!” she said, gesticulating knowingly.

I asked her whether what comes out of her mouth is what she had expected.
“No!” she admitted, but didn’t seem too concerned. Then she took a big breath and began an operatic piece, “Day, day, wee, lie twee lie tay lie… Bubbles!” She laughed…”Plopalopa tapatapa weeleelee…” And then to the tune of ‘Jingle bells’, “Da da da, da da da, an da way la day…”
“Mama, Mama” she suddenly whimpered in a sweet baby voice. And she answered herself, “I thought you were carrying on?…OK!…Wye ly wye ly and I lay day lay way and go go go to bed. Plop!” She made as if to snore again. “And they say – ‘Goodnight’.”

I began to laugh at Mum’s entertainment and make some equally meaningless, but encouraging comments myself. She was clearly having fun.
“Why, is it a man?…Because I like babbies!… That’s all right then…I want to go to bed and I want to stay on. Well you have to ‘Eeny meeny, tatty tatty, catter catter…Then you say, ‘How are you today!” She giggled again for some time…”Eh? Mister Matter Mat? Are they fighting?..Little bits, yeah.”
“You are playing, aren’t you?” I laughed.
“Yes, we are!”
I put a CD on – The Everly Brothers – and immediately Mum began to ‘da, da’ the tune, but used no words and all wrong phonemes. She was enjoying the music and after collecting her very smelly washing, I took my leave, smiling too.

It is a year ago since Mum left my home to live at Broad Glade. I feel sad remembering her having to go, still doubting whether I did the best thing for her.

---

I have just dropped Isabelle and Brian off at the hospital for Isabelle’s first Chemotherapy dose. I am looking forward to taking them home again later and knowing that she is fine. I want to see Mum as well, but Isabelle comes first today.

On Tuesday Mum seemed content and lucid – hardly babbling at all. I took her into the music room and we sang, danced and had a laugh. Her nails were ripped and jagged, so I pampered her nails. Then she showed signs of discomfort and agreed to let me take her to the toilet, change her pad and wash her hands and face.

I had been told that there were some student nurses doing studies on the ward and that one student had chosen my mum. I took my leave of Mammy and went to speak to the student, who was a fourth year medical student with many questions. He had already spoken to Mum and was wondering who “Cacker” was, but I have no idea.

Mum was wandering when I came out, but she was angry and distressed again. I tried to calm her, but she shouted, “Just GO, if you’re going then!”
So I stole a hug and left.

---

On Saturday she was clean and smiley and trying to converse in her light-hearted babbling. I helped with her tea and biscuits as she no longer uses her hands or eyes very effectively. I can put a biscuit to her mouth and she won’t think to tell her hands to hold or catch the biscuit once she has bitten into it. I asked her what she could see. She didn’t know. I asked if she could see her hands, so she held them up and looked at them. Can you see your wedding ring? She couldn’t, so I swiveled it around her finger, marveling on how it has been there for forty-five years. I asked if she could see me – she looked and smiled, “You look lovely”.

---

I got a call from St Peter’s Unit to say that I should not visit at the weekend as they are decorating the corridors, so I went to see Mum on Friday night instead. I haven’t done an evening visit for some time. Mum was in a gentle mood, clearly tired and wanting to go to bed. Her body seemed to be twitching in spasms, but not bothering her at all. She was hallucinating and talking to the babies; ‘Cacker’ was there it seems, but ‘Cacker’ is apparently not one of the babies. She seemed to enjoy my company and the back rub as always.

Yesterday I got another call from St Peter’s Unit, to say that a place has now come up at Gold Acre. Gold Acre is spacious, pretty, peaceful and strangely unpopulated. A nurse showed me around and I am very impressed. I think Mum will be very comfortable there. There is another unit for severely challenging behaviour that is separate from the rest. Opening hours for visitors is much more flexible (simply avoid arriving at meal times) so I hope Mum might get more visitors there. She will be taken there on Wednesday morning in a black cab. I think it will be better if I go up to see her when she’s arrived and settled a little, because too much fuss stresses her out. I wonder how she is going to experience the move, having not even been outside of the ward since last August? I’m sure the nurses are experienced in handling these situations and they will ease her transition gently. It is all moving once again into the unknown and a new era is beginning again for my mum and for me.

---

Chapter 18

Today I saw Mum in her new ‘home’. The staff at St Peter’s Unit had escorted her with her belongings to ‘Gold Acre’. I found her in the large dining room dozing on a two-seater settee. Nearby was a familiar face from St Peter’s Unit, strapped into a comfy chair and demanding a lot of attention. I engaged with the other lady a little, finding she had a mischievous but agreeable nature. There were three members of staff sitting drinking tea, probably having a breather after lunch; they said that Mum had ‘settled well and eaten her lunch’. I sat next to Mum and gently woke her, but it was a cross face that looked back at me.
“Who are you? What do you want?”
She seemed irritated and unsettled by the unusual morning and journey. She looked all clean and fresh and had had her beard shaved off for the occasion. I gave her some tea then suggested that we have a walk around as the loud lady was annoying Mum considerably. I could see a door to a pretty garden, but Mum said she couldn’t ‘be bothered’ to go outside today. All the names of Cacker, Caller and Avril came up with the ‘babbies’ again as she spoke to them, but she soon began to cheer up.

I looked at her room, which was not yet ready – there was a blow up mattress and sets of tools and cleaning equipment in the en suite bathroom. The wardrobe was still empty. Mum kept walking towards the window and bumping into the radiator. Then she would turn, walk and bump into the bed, turn, walk and bump into the door. She didn’t seem to be ‘seeing’ anything at all and was walking with a strangely tilted gait. I managed to steal a few hugs, but she just leaned against me, quite still and resigned. Still, she seemed to understand when I explained that I would need to go to fetch my babies and she let me kiss her goodbye. The nurses assured me that Mum would be well looked after.

On my way home I went to see Monica, to explain where Mum now resides and to update her generally. I find it hard to believe that Monica will be 70 this month.
It just remains to phone Mum’s sister Julia and her friend Wendy, who both expressed a wish to see Mum when she was no longer in St Peter’s Unit. I wonder whether they will visit her now?

Today Isabelle phoned to say that her hair is malting so much from the ‘Chemo’, that her husband has given her a close ‘number 1’ crew cut.

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-Nine

Little Avril and littler Ju…

Yesterday Mum was sleeping in the chair, so I sorted her laundry and went back to wake her up, but I couldn’t. She was smiling and twitching and occasionally saying “yes…”, but her eyes remained closed. She managed to drink coffee, eat custard creams and enjoy a massage, all with her eyes shut. There was going to be no other meaningful interaction, other than stroking her hand and kisses, and I felt that she might prefer to be undisturbed, so after an hour I went to speak to the nurse. I had long since meant to ask about her medication – since the time I pretended to drink the ‘orange medicine’ and they looked a bit worried when I acted dopey afterwards. I wondered why she was so dozy now. The orange medicine was the Trazodone (100mg) three times a day. No wonder she is sleepy. The Haloperidol is just once a day and she also takes Carbomazapine twice a day. Apparently these are all to control her mood – mind, agitation etc. There is still no date for the Continuing-Healthcare Assessment, which needs to be done before we know what can happen next.

***

Chapter 17

Yesterday I hit a major low. I have been finding communication with Simon a cause of immense frustration since the end of November (when I told him I was pregnant). I have been trying to change this, but fear I have just pushed him further away. I am finding it difficult to sleep with ear-ache and blocked, streaming nose and racing mind. I think about these last two years: I have lost three pregnancies, two friends, a job, struggled with my Mum and feel I’m losing control of her care – having lost her too, in a substantial way – struggling with the uncertainty of her future and mine and adjusting to this new life in Nottingham. Last, but by no means least, my Isabelle’s recent challenge has also rocked my boat. She has had breast cancer, has had a mastectomy and is now on the road to recovery. Again I feel so grateful to live in the UK with a great NHS provision available.

Taking an inventory of all this loss was illuminating. I think I need to be a little kinder on myself and on Simon. We both need to learn to have a little more fun together and enjoy what we have whilst we still have it.

Anyway, Mum was in much better form on Sunday, and was contentedly gabbling away, making up what sounds like fun little rhymes with sounds.

I have discovered that Haloperidol is an old-style anti psychotic. It is commonly used in hospitals, to control agitation and hallucinations – symptoms of schizophrenia. It blocks the production of dopamine and has a sedative quality. But its value is questioned by those researching Alzheimer’s Disease. Apparently ‘care homes’ usually take their clients off Haloperidol as soon as possible. It is thought to produce a severe stoop and a general comatosed, dependent state. The Carbomazapine is Tegretol to control the epilepsy.

Mum’s mood has definitely improved since she began to take the Haloperidol and she appears to be much less tormented by hallucinations and psychotic behaviour. But yes, she also appears stooped and pretty well comatosed much of the time.

I felt nearly human enough to venture back to see Mum today. She was sleeping when I arrived, so I sorted the laundry before waking her. She was quite disoriented and kept dropping the biscuit that she’d been given, whilst I held the cup of tea. She was also very jerky – huge sudden involuntary ‘starts’ that she seemed completely unaware of. It was alarming. The cup of tea went down very well though and then she started singing. It was hilarious. There is no way I can convey the experience as I beheld it. She was talking to someone invisible to me and then began to ramble – “Wee lee dee baba kaka da, wee dee wee dee dada moko daba, POP!” Then she would laugh and say “What was that?… I’m being silly… You dabada!… Shall I go again? All right then – Wee la ba da ba…”

I said, “I think you’ve gone daft!”

And she whooped and clapped with delight, “Yeah!”

To the annoyance of a frail old lady next to me she continued for the whole hour, but was clearly having such a wonderful time herself. Eventually she stood up to entertain more fully and began to sing even louder, but this time the sounds came to the vague tunes of “Old MacDonald” and “Jingle bells”. It is difficult for me to do justice to the poetry, but she clearly knew what she was singing. Once she stumbled over the flow and started shouting, “Bugger, Bugger…” until I said, “Mother!?” and she laughed, saying that she had forgotten.

“Am I stupid?” she asked.

“No, but daft as a brush and twice as hairy!” I replied, to which again she rejoiced with cheers and laughter. She looked and sounded happily drunk.

It must have been quite a surreal sight, me alternating between massaging Mum’s back and plucking the beard out of her chin; Mum laughing ecstatically and chanting her rhymes; and another lady leaning over me, kissing my head and telling the wall that I was her grandson.

***

I’m having one of those mornings of racing morbid thoughts:- If it’s all down to genes, I’ll either get a heart-attack, cancer or dementia. But as Josh once said, “We have to die of something. These health freaks will feel a bit daft in hospital when they are old and dying of nothing!”

I am trying to justify my existence again, busy with various projects and people, but because I am not earning an income, I feel wrong, restless and my confidence and self-esteem are very low. An important project for me at the moment is to sort Mum out, but I am finding this waiting process very frustrating.

***

I feel a bit more cheerful now, after a call from my lovely Isabelle. Her dressing is removed and her wound is healing well. She also has permission to drive again, which will be a great relief. Meanwhile the sun is beaming out through the January rain and a little snow-drop has appeared in the garden. I’ve been doing some digging recently and I am so much looking forward to the delight of Spring splendour and itching to get some fruit and vegetables planted.

***

I got a call from the Social Worker on Wednesday morning to invite me to the Multi-Disciplinary Meeting (MDM), which was to take place that morning at 11am. I wished they had given me more notice as I had already arranged to spend our anniversary with my husband.

I told the Social Worker that I was nervous about what would happen to Mum if the home she goes to should take her off the Haloperidol and her hallucinations and torment should return. He said that he’d seen her on Tuesday and she was looking very dishevelled and distressed. She had looked greasy and unkempt on Monday too, but I didn’t ask anybody why, as she had been in such good humour.

The Social Worker phoned me back later with feedback from the meeting. It was much more inconclusive than I had hoped. Apparently two nurses had done the ‘Continuing Care Assessment’ and had agreed that Mum was not at all ready to be discharged. They felt that the only place suitable to meet Mum’s needs would be the ‘Gold Acre’, which I remember being mentioned to me last Summer. What I hadn’t realised was that Mum’s dementia doctor had put in a recommendation for Mum to go to the ‘Gold Acre’ weeks ago, but that the staff at Gold Acre had refused her on the grounds that they didn’t agree that she needed their level of care. Apparently, ‘Gold Acre’ is a brand new NHS unit, offering ‘excellent care’, but their budget is restricted and so they are not able to employ enough qualified staff to run to capacity. It also seems that they do their own independent assessments of appellants and, strangely, do not consult with any other professionals or interested parties. The nurses doing the assessment on Wednesday, on the other hand, are of the opinion that Mum will continue to need at least the same level of care that she has had in hospital and that any other care home would not be able to cope with her needs and therefore she could end up being readmitted to hospital. That is my concern too.

I was surprised to learn that Mum’s dementia doctor was not at the MDM either, so we will now have to wait whilst she reads the report and makes her response. The nursing team also recommended that Mum’s medication be reconsidered and that Mum’s doctor should reapply to Gold Acre for a place.

The Social Worker said that Mum was even more distressed and “vocal” (shouting and angry) on Wednesday and that she seemed to be in a very tormented state again. He said that she was still unwashed, because apparently she is being very uncooperative with the staff in the mornings.

I have arranged to see Mum’s dementia doctor at her earliest convenience to discuss these issues properly, but that meeting may not be for another four weeks.

Anyway, I’m going to see Mum again myself and see if I can make any more sense of the situation.

***

Well, she was fine with me if a little dopey again. She was smiling, singing her own version of ‘Daisy, Daisy’ and copying some of the voices and sounds around her. She was well laid back on the sofa and still very twitchy. Occasionally she would lift herself up to a sitting position and then lower herself back down again – like a version of ‘sit-ups’.

She greatly enjoyed some chocolate and we managed a sort of a conversation – I asked many questions and she made various responses. She thinks that Wendy has been to visit her, but not Julia or Monica. She can’t be bothered to do the gardening any more and doesn’t miss Orkney. She cannot remember much about her mum or dad, but thinks that Julia was bossy. Being a mum was sometimes really lovely, but sometimes ‘Brrrrr!’ She’d like to go and look at the Spring flowers when they’re out in bloom, but she is a ‘big baby’, even though she thinks she is not big.

I asked a member of staff about the greasy hair, wondering whether her fear of water had returned. Apparently this week, the nurse said, Mum has been distressed, difficult to handle and shouting in the mornings, but she is going to ask the night staff if they’ll bathe her this evening. She was unsure, but believes that the doctor may have already made some changes to her medication.

Mammy loving the abundant garden at Porchester Road