Week Twenty-Four

Mammy playing and happy

Today I spoke to the Social Worker and to the manager at Broad Glade. The room is left available for Mum, until a decision can be made, though I sense that their decision is made already. The Social Worker will see me at the review tomorrow.


Monica went to see Mum today. She took with her a whole load of photos to share, but she didn’t stay long. Mum was hiding in the loo and wouldn’t come out, so Monica went in. Mammy didn’t acknowledge Monica, wouldn’t look at the photos, was cantankerous and insisted that the photos all belonged to her. Monica could understand her own mother becoming aggressive with dementia, because, she said, she had always been a horrible lady, but she didn’t expect my mum to go nasty. I suggested that because so many horrible things had happened, that Mum couldn’t control, that maybe all her hidden fear and anger was now expressing itself, free from inhibitions.

Monica also fears that visiting the angry Mum just makes her more distressed, confused and angry. It seems to do no one any good. When she’s relaxed and happy Mum gets so much out of the visits, even if they are immediately forgotten, but the moments must add to her general store of well-being.


It is Tuesday morning and I’m feeling strong and positive. Joshua is baby-sitting Conor and I’m off to ask some questions.
When I arrived at the review, they were still discussing someone else, so I swapped Mum’s clothes – dirty for clean, or vise versa. We nearly made a mistake though – the nurse took me to Mum’s room and opened the wardrobe. I noticed how empty it seemed and started to hang up her clean trousers and tops, when I realised that the clothes in the wardrobe belonged to a man. Eventually we found that Mum has been moved into a women’s ward, sleeping six, and I finally got the laundry sorted.

Mum was lovely and not particularly dopey. I thank God. She was giggling and chatting with herself – asking and answering her own questions, but aware of my presence. She asked me if I’m better now and interrogated me with her eyes when I said I was, as if to check that I wasn’t just pretending. I remember that expression.
“Are you sure you’re OK?.. I’m not out of the woods yet.” She added.
“No? But there’s light ahead and you’re getting better.” I offered.
Mum giggled again. “I’m bored. Can I come home with you? What are you here for?”
“I’ve come to see the doctor.” I was happy to say truthfully.
“Me too.” She added. “I haven’t seen you for so long; I thought you were never coming back.”
I had remembered the tweezers, aware that Mum’s beard was growing furiously. I began to pull the wires out one at a time, trying desperately to distract her from the sensation, but she seemed to feel the pain of the plucking more than ever. I didn’t do much before the nurse called me through.
“My turn”, I announced cheerfully, “See you in a moment.”

The review was a bit formidable. There was the dementia doctor and her shadow, the Social Worker and his shadow, the staff nurse and little me. They tried to reassure me that they were all working to find the best solutions for Mum. I trust that they are. They don’t think that Broad Glade is suitable for Mum any more, but they can’t say what is suitable, ‘at this early stage’.
I asked about the medication and put my case for giving Mum more of the Lorazepam. The doctor was quite adamant that Mum would stay on the Trazodone. She says that there isn’t much else on the market and that Trazodone is very effective. She added that Lorazepam should be used ‘as needed’ when Mum is particularly difficult or violent. She argued that because one can become tolerant of Lorazepam, it should be used sparingly if it is to remain effective.
The staff nurse said that Mum likes to be alone and seems quite content wandering about all day. She said that problems only occur when the staff need to get Mum to do something like wash, eat, get dressed, take her medicine, etc, only then does she become difficult and aggressive.
They then said that there is no way of knowing how Mum would progress with the disease – whether she would get more aggressive or more benign as time passed. They would be looking to place her somewhere where she would not have to be moved again as she deteriorates. I wanted to say that I am looking for a miracle, but tears came instead. It isn’t easy to believe in miracles when folk around are throwing negative, pessimistic circumstance and prognoses at you. It’s quite intimidating. They said they’d involve me in decisions… gave me a tissue, and showed me out.

Mum was still in good form. A man was sharing the two-seater settee with her, with his arm around her waist. I sat in the adjacent chair and tried to talk to her, but the man leaned forward, glared at me and said,
“Go away! I’m warning you, go away!”
“Don’t you start!” I said, feeling both amused and ruffled that he was spoiling my quality time.
Mum looked at him and smiled, chuntering to herself and then kissed him on the shoulder. I sat back and took out some paper to make notes. The man again leaned forward and growled,
“Go away! I mean it. She’s my wife!”
“And she’s my mother,” I retorted, heartbeat quickening. “So who does that make you?”
I laughed at the whole situation and at myself and settled back to look with love.
A nurse came in with a ball and a target. Mum and her new man-friend chose to play. Mum aimed sideways instead of in front and shook her head saying how she’s ‘no good at it’. The man then threw and scored, so Mum had another go with renewed vigour and concentration and scored too. When he had the ball, Mum thought it was still in her hand and was trying to throw nothing.
“I need something a bit heavier,” she complained, looking at her cupped, empty hand.
I noticed that Mum responds to all the conversations around, but doesn’t expect a response herself. So, when the nurse says to someone else, “I’m going to fetch you some tea. Are you warm enough Ivy?”
Mum replies, “That’ll be nice. I think I’m alright…Oh, there you are.”
She seemed to be enjoying this man’s attention and lunchtime was looming, so I made to leave. She asked if I will come back. Of course.


We are going away tomorrow, so I want to see Mum before I go. Conor wants me to phone first in case he can come too. We prayed on the way and found her brimming with tears of joy and hugs for Conor and I. We had the old ‘where have you been?’ and Conor had a smile from ear to ear as he led Nana to a comfy place to sit. Unfortunately, Conor kept opening his mouth and putting his foot straight in it, unwittingly, with concepts that were no longer part of Mum’s reality. I did not fare much better. She kept saying how bored she was, with nothing to do. I reminded her that hospitals can be boring, but you just have to wait until they give you the ‘all clear’.
She didn’t want to hear that she was in hospital.
“Nobody told me.” She complained.
We changed the subject and said, unwisely, how we were going away for the weekend.
“Can I come?” she asked.
“You have to wait for the doctors to finish your assessment, Mammy. They won’t let you leave the hospital until your test results are through.”
“They didn’t tell me. Why? There’s nothing wrong with me!”
It was like treading on eggshells and trying to avoid breakage, so I suggested some music. Conor led Mum to the music room and was a bit confused when Nana insisted that (my) Daddy was there. Fortunately there was no one else in the music room, so we closed the door. There was a Patsy Cline cassette there, so I suggested that. Mum agreed and we danced and sang ourselves silly.
“You look different?” she said after dancing and staring quizzically for some time.
“Do I? Just greyer around the edges, I expect.” I answered, but thinking ‘I feel different – dancing around like this is the best music I’ve ever heard, surrounded by insanity. I feel zany and high myself, but thankful too and sort of content.’
Mum was enjoying the dancing and she looked great. She was much less podgy and was standing up straight and dancing well.
“No, you’re different…It’s Daddy!”
Oh, that makes sense then?

When it was time to leave she was disappointed that she couldn’t come too. It felt like all the fun had been undone and forgotten and only the pain of separation remained for her. It was heart breaking.

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 Twenty-Two

Me and my Mammy

It was great to be back in Nussloch, where I was an Au-pair for two years. I felt very conscious of time passed by. We enjoyed a satisfying balance of sightseeing, walking, eating and relaxing with good friends. It was great to spend time with my special friend ‘Little John’ too.

Now I’m home and mid way unpacking, washing and repacking for camp tomorrow. It’s Josh’s 14th birthday today. My life feels more normal again now.

I know that Isabelle’s crew had all visited Mum on the Tuesday and Monica had been to see her on the Wednesday. Apparently Julia had planned to go on the Friday, but had phoned in advance and was told that Mum had gone to Clumber Park with the relatives of another resident? I must investigate that one a bit further, as I know that Monica had had trouble getting Mum into the car the week before, when she wanted to take her out for a picnic.

That was quite a surreal experience for me – I was on the top of ‘Holy Mountain,’ in Heidelberg and found myself answering my mobile-phone to Monica, who wanted me to reassure Mum that it was OK for her to go out for a picnic with herself and Alf. It was fine then, but apparently, bringing Mum home again was another story completely. It seems that they could not get Mum back into Alf’s van. Monica presented an amusing but tragic image of them chasing Mum around the car park – one which I would have thought would have made them think twice about letting her go off with strangers the next time. Monica, who saw her own mum behaving badly with dementia, saw a side of Mum that shocked even her.

***

After church on Sunday, I walked to Broad Glade with Conor and Violet, intending to then make Isabelle’s house our walking destination for Mum, for tea and cakes and then a good walk back. She appeared very miserable when we arrived and had been sobbing all day, apparently. She didn’t seem particularly pleased to see us, but was glad to be invited out for a walk.

Walking up the steep hill to Isabelle’s house is challenging for most of us, so Mum did really well, stopping only twice to catch her breath. Walking down the other side felt very dangerous, because she didn’t seem to know how to control her balance and not run into the walls or topple forward. She wouldn’t be able to go home again that way.

Mum wasn’t very animated at Isabelle’s and seemed to be physically very hunched up. Walking or sitting her head was bowed low to the ground. I tried to get her to sit upright, to drink her tea or for biscuits, but she couldn’t do it. She seemed to be closing up. Isabelle solved the dilemma of taking Mum back, by offering to give us all a lift home. Mammy was just so heavy and weighed down with grief/depression/drugs? I carried some of it back home with me.

***

Today I called Mum’s CPN. She explained her role in Mum’s care in terms of psychiatry/medication. The Trazodone is to help control Mum’s agitation and depression. She is now on 250mg per day. The CPN will be going to see her this morning and will speak to me later.

Broad Glade then phoned me. Mum has been ‘swearing at and hitting staff’; has been refusing help – dressing, eating and drinking; hasn’t slept for two nights, has been pacing around and won’t come out of her room. They are having a meeting on Friday, for the Nursing Assessment (NHS review), as they feel that Mum now needs a higher level of care.

I believed Broad Glade to be exaggerating, so I decided not to go in until tomorrow morning. Instead I went, as planned, with Conor and Isabelle’s crew to the Ice Stadium and had to take Josh for his eye-test.

Then I began to think about Mammy again.

Chapter 14

I had a call from the Social Worker this morning, to say that Mum ‘attacked the CPN’ yesterday.

The same CPN went together with the Social Worker this morning and Mum ‘attacked’ them both. I should have gone up there yesterday. Mum has not drunk anything and has refused medication and food. She has physically attacked one of the carers too. They think that she needs to be ‘sectioned’ in a secure hospital unit until she can be sorted out.

I’m going straight there.

They don’t want me to see Mum first. They want me to wait until they are all there – dementia doctor, Social Worker and Mum’s GP – as the Social Worker requires both of their signatures to get Mum sectioned. They are meeting at 11.30am.

I want to go and calm Mum down. She sounds scared and like she feels cornered. I didn’t expect this. It all sounds so serious and I don’t know what I’m supposed to do.

Conor has had to come with me as I can’t leave him home alone – I don’t know how long I’ll be. I warned him that he might have to play quietly outside and might not be able to see Nana straight away.

Mum’s ‘unit’ has been cleared of residents. I can feel my heart beating. It all feels very over dramatic – almost comical somehow. I can’t leave her like this so I knock on Mum’s door and hear her growl an emphatic “GO AWAY!”

Opening the door I see her lunge towards me with manic movements and scary eyes.

“Mammy,” I plead, “It’s me, Dawn, your daughter…”

“GO AWAY!” she hisses, demoniacally.

I plead again and she rushes towards me, hands grasping, teeth clenched and growling,

“…Or I’ll f***ing kill you!”

Snatching her hands I try to look her in the eyes. She fights me and tries to bite my hands, but fortunately I am physically strong too. She slams the door into me as I try to squeeze through, but she seems to have a room full of invisible guests, with whom she is busy arguing.

She really seems like a person ‘possessed’ and tormented. I come away, because I can see I am not helping and because Conor has followed me down and is becoming very distressed at this hideous sight…

***

The Social Worker and doctor explained to me that Mum would go to the St Peter’s Wing at the hospital and be properly assessed there. She gave me all the contact details I would need and sent us away, before the ambulance and police came to restrain my poor little Mammy and take her away.

We were quite shaken up by the time we got home. Conor knew it wasn’t Nana, but was like a bad spirit that had made her ill. Broad Glade is no longer adequate for Mum, so something better will come of this.

***

Part 3 Sectioned! Hallucinations, drugs and laundry.

A nurse from St Peter’s Wing phoned to give me an update. They expect Mum to be there between 6-8 weeks, during which time they will investigate her responses to different treatments, drugs and environments to see what will be best for her. She said she expects me to come regularly and to do Mum’s laundry. Mum had no belongings with her, so I need to take her some clothes and toiletries urgently. She advised me not to bring the children, as the ward ‘can be quite distressing’ and scary, with ‘unpredictable behaviour, screaming and some violent outbursts’. Visiting hours are quite strictly 2-4pm and 6-8pm. Mum has two key nurses assigned to her. This is my Mammy they are referring to.

‘One Flew Over the Cuckoos Nest’ springs to mind. Not a lot has changed institutionally it seems. But I haven’t been yet, so I cannot judge. I am still in shock, I think.

The Social Worker then phoned, to say that Mum had ‘put up a good fight’ not to leave the room, but when she arrived at St Peter’s Wing ‘she changed completely!’ Apparently she responded to tea and biscuits and tried to communicate to the Social Worker that she knew that they were doing their best to help her, but that she didn’t understand what was happening. She asked where I was and he told her that I had been there this morning. She wanted to know why I wasn’t with her then.

It was good of him to phone me. I felt a bit better.

I am down in their paperwork as ‘nearest relative’ and Debbie as ‘next of kin’. The Social Worker did phone Debbie, after phoning me this morning, before they ‘took her away’. I can recall my dad singing, ‘They’re coming to take you away; ha, ha!’

I’d better tell Monica and Julia too.

Isabelle took me back down to Broad Glade to pick up some things for Mum, but I’ll take them tomorrow, as I’m completely drained now.

I was surprised that Broad Glade seem to be in a hurry to clear her room and give me all her stuff. I wasn’t prepared for that and said I had come only for immediate supplies, but that I would be in touch after speaking to St Peter’s Wing. As far as I know, no decision has yet been made for her not to go back to Broad Glade, even if it is not the most suitable place for her. Still, they will have to wait for me to take a larger hold-all to clear it properly, but I’d better check with the Social Worker first. It seems to be another new era of the unknown…

Week Fourteen

This week’s is a little longer, but you won’t get one next Friday, so it’s a chance for some of you to catch up...

Chapter10

It’s now nearly two months later. Christmas has been and gone and yesterday we celebrated the ‘Epiphany’. So much has happened emotionally and events-wise over this interval.

Debbie came for a few days at the beginning of December, but as she was largely concerned with shopping, I didn’t get a break. I did communicate some of my concerns about me coming to the end of my ability to look after Mum at home. She says she will support me in any way she can and does understand that it has been very difficult for me.

We saw Monica briefly, but apart from that we have had few visitors. It is like that now.

On Christmas Eve, Joshua had a burning fever and spent most of the day in bed. After mid-night Mass, Simon was also burning up and the two of them spent the next few days with an appetite only for Paracetamol and water. Most of Christmas dinner went into the freezer.

Joshua, Simon and Mum are all still coughing badly. They had a virus, apparently, but Mum had a chest infection too and is now on her second prescription of antibiotics. Unfortunately Mum’s coughing has caused ‘stress incontinence’, which has given me wet chairs, wet mattress and a whole heap of extra washing to do.

Sitting in the waiting room at the surgery, with the whole family, was a rather comical experience. Other service users were quite clearly avoiding sitting anywhere near us. Mammy was distressed, coughing and wheezing severely. Joshua looked mentally disabled with his ashen face poking out from under his long woolen hat, exploding into coughing fits; the doctor even asked me if he attends ‘regular school’. Simon was looking like a vacant, zany zombie and Conor, wearing gloves and a T-shirt with ‘Heavily Medicated for Your Safety’ printed across the front, was acting the part, twitching and groaning, for fun.

I saw the doctor alone last and, not surprisingly, she recommended anti-depressants for me (which I refused) and prescribed the pill, which Simon had suggested that I now take. I had hoped that we would have a baby, but perhaps I am too old. To take the pill would be to give up hope. I could carry on with the uncertainty, expectation and the disappointment and agony each month? It is another difficult dilemma.

Mum went into respite over New Year and we set off to see the New Year in with Simon’s family.

The prospect of putting Mammy, against her wishes, into a home; the thought of there being no hope of a baby; the house full of sickness; and Simon’s increased anxiety are all pulling me down very low. Lord, give us wisdom.

Today is back to school, but it’s Conor’s turn to be sick, so I’m tied to the house again. At least I went out into the garden for a tidy-up and felt a bit more enthusiasm creeping back into my spirit out there.

***

Tuesday today and finally an hour’s solitude. I managed to have a chat with the garden, but I missed the phone – it was Mum’s dementia doctor and I now feel really agitated because we have waited 6 months for this and I missed it. January 8th was firmly printed on my mind, calendar and diary – but all I had remembered was that Mum’s Befriender was coming this morning and the district nurse this afternoon. She left a message that she would send another appointment, I just hope it won’t be another 6 month wait.

Out in the garden I was delighted to see deep-red wallflowers, emerging pink stocks and little proud fresh-green shoots from last year’s bulbs. I was feeling a sense of awe in the hardiness of Nature. Only the second week in January and the flora is waking up again to dazzle us for another year. The mini-roses are still in bloom and the Sweet William has not stopped flowering since last March.

When I woke Mum she was lying curled up on top of the duvet. Being slow to learn, I asked her why she doesn’t get back under the quilt, after she’s been to the toilet. It was a stupid question that she obviously couldn’t answer and made her feel distressed and grumpy.

I have to dress Mum every morning now. The socks she can usually manage if I present them one at a time. This morning she put the left sock on and then sat looking quizzically from the sock in her hand to the socked foot and to the bare foot, for what seemed like 5 minutes, so I took the sock and put it on for her – to put us both out of our misery.

The inhalers are now used at least twice a day and she still does her happy piggy impression and asks, “What does it do?”

When Mum was last in Broad Glade, they suggested that we request incontinence pads from the NHS, as they are both free and effective. She came home wearing one more like a nappy that day. A nurse bought some pads with her last week and, after filling in copious forms, she left me with a ‘urine chart’, to fill in during the week, and a sample bottle, ready for her next visit. Apparently all is well – the sample was good and the scan to see how well she empties her bladder is fine too. She’s going to keep us supplied with big and small ‘nappies’, so that should really help my washing load. They are all valuable improvements and a blessing.

Yesterday I went in to Mum’s room to find the commode upside down on the carpet. There was nothing I could do, but get on with it – it really makes me heave! Of course the urine soaks through the carpet and the poo gets flattened by the seat and various components of the commode. To have to reassure Mum and get her ready, with a nostril full of it, is quite unbearable for me. Mum holds on to those negative experiences for so much longer than she does the positive ones. Throughout the morning she was downcast and sniveling, despite my hugs and reassuring words.

***

We had an interesting discussion on Tuesday morning. We had been out walking a couple of times already and we were having a cuppa and listening to an inspirational piece of music, when she began to cry gently.

She said, ‘Daddy is here!’

During the course of the conversation I learned that she couldn’t see him with her eyes, but that he was smiling and at peace. She was questioning why this happens to her, remembering that it used to happen a lot more, but that she didn’t think he would still be coming to see her. I asked whether she believed in an afterlife and whether they would meet each other again. She didn’t know quite what she believed, but added that if they did meet again, ‘I hope he doesn’t hurt me’.

Poor thing. I shared my hope that, if we do meet again in the afterlife, then ‘Every tear will be washed away’, (*Bible: Rev 7: v.17) That there will be no more pain and that we will know truth.

***

I received a new appointment to see the dementia doctor on April 22nd.

The ‘epilepsy specialist’ in Neurology has written to the GP, saying “These features [on the EEG] are suggestive of an increased disposition to epilepsy. Please let me know if I need to see her again.”

The GP doesn’t know what to do and has passed it back to the specialist to ask what, if any, medication she recommends. The dementia doctor didn’t want to ‘step on the toes’ of the Neurology specialist, so, thus far, nothing has happened. And I missed both appointments.

***

Well, she’s still coughing and it’s causing her so much distress. We went again to the doctor, but the chest infection seems to have gone, so a new investigation – ‘reflux’- is being tried with the intervention of an stomach-acid reducer, ‘Lansoprazole’. I also enquired of the GP about communication from Neurology and ‘Hey, Presto’, there was a letter on the system saying that Mum should start taking drugs to treat her ‘epilepsy’. So, now she has to chew some ‘Tegretol’ after supper too.

***

Another Monday and we are back to the doctors. This doctor wants to try oral steroids again, to see if the cough clears with them. If it does, he will deduce that it is definitely asthma-related and then we might be able to move forward with that approach.

Today we had to stop halfway to school, because Mum was distressed and refusing to walk properly, but wouldn’t say what the matter was. I sent Conor on ahead and Mum told me that she ‘keeps peeing’ and ‘can’t stop’. She said that her clothes weren’t wet though and that she wasn’t doing it at that moment, so we changed direction and went home. She isn’t making much sense at all recently and is often wet. I’m so glad we got the pads.

I wonder if the Tegretol isn’t making Mammy more dopey and confused than ever, but it’s hard to tell, as she has good and bad moments anyway.

I am so grateful for my garden. Several times a day I wander around that beautiful space, marveling at the new growth and constant miracles and change. I watch the birds – still flocking and flying in fabulous formations. I speak to the garden too. Mum talks to the plants as well and hugs the trees – so we must both be potty! I have two lovely, orange crocuses in the front garden and bunches of bulbs waiting to flower all over the place. We are eating lots of brussels now, so that I can get the vegetable patch prepared – to plant beetroot, red-onions, blueberry and blackcurrant. I’ll do rocket, courgettes and beans again later too.

I finished an email and went through to Mum and to make some tea. She was sitting hugging herself tightly, which looked to me like she was cold, but

“No, it’s Roger” she sighed shakily, “He’s dead!” Pause.

“He died last year, Mammy. We went to his funeral.”

“No, he was here, we were talking…and then he had to go…he was there (points to the window) and a car came…it knocked him down…he’s dead! …We were talking here, just now… That lady was here too…I’m going mad! …He came up here and I spoke to him…Is he alive? … I’m going crazy…”

“You are not going crazy, Mammy, you are just mixing up your memories. Roger used to come to see you a lot on Orkney and he came here too, to see us last Christmas, so you have seen him in this room. He did die in a car though; it was tragic, as he mistakenly reversed his car off the pier on Graemsay, after picking up his groceries.”

I wonder whether the ‘visits’ from Daddy weren’t also part of a confused thought and memory process?

***

Mammy has now seemingly forgotten how to swallow tablets – but not food. Yesterday she had to take her first dose of 8 tiny, red, steroid tablets. She just couldn’t do it. The tablets kept lodging between tongue and teeth, as she gulped down several glasses of water. An hour and a half later they were finally gone. We had the same problem then at bedtime with the ordinary tablets – even the capsule she tried to chew and splutter out all the gritty contents.

This morning’s 8 steroids got to me. After spending half an hour on the first two, I abandoned the job and we took Conor to school. We had to come back and take the rest, before I could take her to the Day Centre. It was another hour before, with one still in her mouth, I took her out.

On the way back I spoke to the Pharmacist who said that there are soluble steroids, but the doctor would have to prescribe them. I spoke to the doctor’s secretary and she wrote it all down. She was very empathetic and I felt myself beginning to cry, so I thanked her and left.

What a difference soluble tablets make. And she likes the taste of them. She still can’t do the bedtime ones though.

Week Thirteen

Before Mum was to go today, I decided to confront her about the Day Centre.

“I do like it!” she said.

When I explained how I saw her behaviour, she tried to explain how ‘it’s the suddenness’ of my leaving that bothers her; that I do things ‘too quickly’ and then I’m ‘gone’. I suppose that with not having a memory backup, everything seems sudden and, simultaneously, everything goes on forever? Life must be very unpredictable for her. She seemed better prepared today though, so maybe I should go back to telling her what’s happening next, to give her more time to respond. I used to do that, but it seemed that I was just giving her more time to worry, but things change, so I will too.

At the Carers’ group last night the St. Peter’s Wing were doing their presentation. I felt slightly overwhelmed by the focus on drugs – drugs for the Alzheimer’s disease, for sleep, for depression, for anxiety, for the bowels, drugs for this, that and everything – and also the emphasis on test scores. Mum scored 9 on her test, but she was in a strange place, with a doctor whose English was not very clear, being watched and put under pressure to perform. As a teacher, I know that these conditions are not optimal for anyone. So, because she scored a severe ‘below 11’, she’s almost written off. Last night I took the opportunity to ask the Consultant again about therapy and why I thought that if I supplied some of the facts about Mum’s past, perhaps a therapist could be of help to Mum in ‘unblocking’ stuff. But I still didn’t get a clear response.

Our Social Worker came again today, to see how things are going. I have given her Debbie’s phone number too, as, having Welfare Power of Attorney, the decision of ‘where it is best for Mum to live’ lies ultimately with her. She said there is a place available now at ‘Broad Glade’ and, if I were desperate, Mum would be considered. Believing that the place was full with a waiting-list, the choice came as a sudden shock. I don’t feel I have the right to make this decision alone. I don’t know who I’m supposed to put first. She won’t rush me and she listened to all of my ramblings. It’s good to know that if I do get desperate, they can step in. Please God that I don’t become desperate, but that things will fall naturally into place at the allotted time and I will know peace.

***

At ‘Take-a-Break’ again I witnessed more of Mum’s ‘attractiveness to men. I was aware of two new people having joined the group some weeks ago, but I hadn’t had the pleasure of speaking with them. The man was staring at Mum and asked if we were sisters. Mum didn’t even acknowledge his remark, but sat there serenely smiling. Then he said to me,

“She is very pretty, I quite fancy her.”

“And you are?” I asked, somewhat amused by his fixation.

He gave his name and I looked enquiringly at the lady, who smiled, “I’m his wife!”

We were celebrating another birthday. It makes me sad to see Mum – 25 years younger than the birthday girl – so much less able to communicate or function sociably, yet somehow enigmatic for the gentlemen. I presume that the gentleman flirting was the one being cared for by his wife and I wonder how much more difficult it must be to care for a spouse than a parent.

***

I had arranged to visit the even-more-local care-home, that our Social Worker had told me is considering registering for dementia patients. I had a good chat with the manager, who has been working there for 14 years and has her own mother-in-law living there (which is either a high recommendation or at least expedient). They have between 12 and 14 ‘residents’, but the youngest is already 18 years older than Mum. They do seem very homely and the lady seems to take pride in the place and love the residents. I intend to ask our Social Worker to plan Mum’s next respite there, in the new year and see how well she would fit in. It would be good if Debbie could come and look at these places too and discuss the options with me.

Mum says she wants a diary again. Debbie and Mum always kept a diary. I think I’ll get one for 2008 and we can fill it in together, at teatime perhaps.

I think I’ll also do a ‘This Is Your Life’ style album for Mum – an idea from the Occupational Therapist. It could be very helpful for friends and other volunteers and carers to see something more personal about her and give them more of an anchor for chat and discussion.

***

This morning Mum had two of her funny turns. It prompted me to phone the Neurophysiology Dept. to find out when we can discuss the results of the sleep-deprived EEG, that she had two months ago.

It seems I have slipped up somehow. Apparently Mum had a ‘missed appointment on 3rd November. It was not in my diary and they had not sent us a letter, but I did find it written in the notes that I had made when we last visited earlier in the summer. Hopefully we will be able to reschedule?

These ‘fits’, or whatever they are, do add to my stress, because I feel nervous to leave her alone for even a few minutes, lest she hurts herself. I saw the first one begin and was able to take the cup from her hand and hold her steady until she had finished, but was then afraid to leave the room. After the second ‘fit’, I put her in the big armchair, with the TV for company and went to have my shower. It struck me this morning that the majority of ‘fits’ have been directly after breakfast, and a couple have even been before breakfast. Is it the suddenness of going from horizontal to vertical that triggers them? Is it a change of blood sugar levels? I must ask the consultant, if they give us a hearing.

I thought it best to stay indoors this morning, so we made a start on the ‘This is Your Life’ folder. I found a pile of good photographs to illustrate the major stages of Mum’s life, but I realised how patchy is my own actual knowledge of specifics – especially dates and place-names in her life. I am sure I will be able to find out this information.

***

The ‘Age Concern’ volunteer has taken Mum to a garden-centre for a couple of hours – she is superb with Mum. She is interesting and interested and manages to think of purposeful excursions. This week the purpose is for Mum to get some Christmas cards and to see the decorations. The volunteer friend always says that she has had a lovely day out too.

On Friday we go to Marbella, Spain, to stay with an old University friend of mine. I am so much looking forward to it, but as always dreading Mum’s disappointment, when she realises that we are going away without her.

This morning when I went to wake Mum, she was clearly still in a distressing dream. I barged in with my “Wakey, Wakey, rise and shine”, but Mum was sobbing and shrinking under the quilt, crying, “No, please don’t. Please! No!” I was concerned and curious, as she obviously wasn’t fully awake yet. I stroked her head and told her she was having a bad dream. She continued sobbing and saying, “Mum!” Later, when she was more awake I asked her about it and she said that her mum was very angry with her in the dream. Apparently she was never angry or nasty, ‘in real life’. She couldn’t recall why she had been angry with her or how she was expressing it, but it was clearly causing her a lot of distress.

I suggested that maybe Mum was angry with herself (as she’s often pulling herself down with phrases like, “You stupid woman. You silly thing!”) She agreed that she was angry with herself and said ‘it’s like having a big hole in my head’.

I guess it might be just like that. I told her that I see the disease in her brain like a set of fairy lights – every so often one blows and that bit goes dark. I think that maybe the little ‘fits’ are manifestations, or causes, of those blown bulbs and there are dark patches in her brain where once there was clarity. She likes my analogy and says it feels just like that.

Anyway I thought it would be appropriate to go to the memorial garden today and take some flowers. We did get the engraved marble vase, but haven’t been back there since we erected it in August. On the way to the garden, I asked her to describe her mother and she kept repeating that she “was a lady – a gentle lady!”

We arranged the flowers, said ‘The Lord’s Prayer’ together and thanked her mum for being a gentle mum. She said she couldn’t remember anything about her dad at all

***