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 14^th 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 Twenty-One

My lovely Nana, with Avril and Julia

There was a message left for me this morning from the County Councillor – he got my letter about staffing in Care-Homes this morning and responded immediately. He thanked me for bringing it to his attention and is going to take the matter up with the Strategic Director and ensure that I get a proper response asap.

I phoned Broad Glade to see how Mum was before I went in. Apparently she was compliant this morning. The CPN had been in yesterday (I’m disappointed that I missed her, having asked especially to see her) and she has prescribed a new medication. They were unsure what the new medication is, but I’ll find out later.

I got there just before lunch. She didn’t hug me quite so tight, so was presumably not as distressed. She said she was “All right now!” and seemed settled and happy having lunch. Getting ready to go out, she was in the bathroom, when suddenly she looked up and scowled at her reflection, saying, “Does she always have to come?”

I realised that she was being serious, so I asked, “Do you mean that gorgeous lady in the mirror?”

She grunted, “I don’t like her. She’s always there!”

I had to laugh, but it was so difficult to show her that it was her own reflection that followed her into the bathroom. She understood eventually and laughed with me, but I expect she’ll forget again. Maybe she expects to see a younger, brown-haired lady in the mirror? I know I often get a shock when I happen to see myself in a mirror!

We went off to shake collection boxes at Tesco. She wore a rose hat and we filled our boxes and met a few lovely people. We did a good stretch of walking afterwards and Mum and Conor had the chance to chat and play.

Mum is concerned about her eyesight again. When we got back to Broad Glade, they took her to do her night-stuff and Mum expressed some anxiety about not having much money. I reassured her that she had already paid for it all and then she let us go quite happily.

***

Sometimes I get some very morbid thoughts of life and death, etc. I’m not afraid of death, but of dying; and I anguish for those who live miserable lives because they don’t know the love and peace of God; and I miss people terribly, who have died. I have been having emotionally unsettling dreams about my dad, Pa, Pat, Roger and so many loved ones who have died.

I saw Mum on Monday and we went for a very long walk; taking flowers to Pat and Pa’s graves and enjoying each other’s company. She still seems more settled, but whittled again about needing ‘new eyes’. She even mentioned that she’d like to take up the guitar again, which I’ve not heard her consider for a long time. I agree and go along with it all for now.

I did see some senior staff at Broad Glade, but they all appeared too busy to talk, so I smiled only.

Yesterday I got home to find a message from a new Social Worker, saying that he had ‘been asked to do an assessment update of Avril’s needs, as Broad Glade were having problems providing her care’. I found myself shocked to get such a message from a stranger. Fortunately, he saw fit to inform ‘family’ and to get me involved from the beginning of his ‘new case’. I do not understand why Broad Glade did not tell me. I do understand that they have to be proactive, but they could at least communicate their intentions with me.

I found our new Social Worker’s approach to be professional, supportive but non-committal. Interestingly, he said that he’d gone along to Broad Glade on Monday, but that they were all ‘too busy to see him’, so had left again without meeting Mum or talking with anyone. He said they ‘must have been a bit short-staffed’. Broad Glade had contacted Social Services because, they said, Avril had become ‘verbally and physically aggressive’ and had, at one point, ‘pulled a resident out of her chair’.

When I’d recollected myself, I phoned the unit manager at Broad Glade. I now wanted immediate answers about GP, medication, CPN input and anything else they were considering doing or that I might need to know.

I did get some answers: – Mum is now on Trazodone twice a day and apparently the CPN said that that was ‘all they could do for her’, for now. Mum is also now registered with a GP. The unit manager said that they had contacted Social Services to reassess Mum ‘as backup’, so that they can provide the best care for her. She described Mum as ‘quite threatening, although she hasn’t actually hit anyone’. She also described a situation last night, where they had provided ‘entertainment’ and Mum, although enjoying the music, got distressed in the room, because of the noise volume. They then sat her just outside the door and Mum enjoyed it fully, she said. To me it just shows how a little flexibility and understanding enables Mum to fully participate in something she enjoys. She said that they would involve me when Social Services come in to assess and said I must always go and ask, if I have questions. I think that everyone is doing their best, but that priorities and resources vary.

Trazodone is a serotonin modulator used as a sleep aid and for depression/ anxiety/ schizophrenia.

***

The Social Worker did an assessment of Mum yesterday, but is waiting for the nurse to do an assessment too. He said that Mum was clearly very distressed and that he felt sorry for her. He doesn’t think that Broad Glade is a suitable place for Mum, in that they don’t have the staff, or the time, to give Mum what she needs. His concern is that the sort of environment better suited to Mum’s needs tends to be much more severe in terms of the other residents and their behaviour. It could be quite a scary environment for Mum, if we don’t look carefully.

I had offered to mind Isabelle’s children this morning, but at 10 O’clock, Broad Glade phoned to say that Mammy was very distressed and could I go and calm her down. I was planning to take her out with her sister this afternoon, but…Simon was here and able to fetch her instead. Mammy was in a bad way and cried a lot. What follows are snippets of what she expressed between sobs and tissues. In brackets are some questions or clarifications added by me: –

“Silly, silly man!…He’s gone!…He didn’t have to do that!”

(Do you think he did it on purpose?)

“I know he did!…I’ve said my Goodbyes…He knew he was going…He said so, but I didn’t believe him…He said, ‘I’m going to bed…and he killed himself.”

(How?)

“A knife. I don’t know what sort. Then he threw it away and I couldn’t get it back…Don’t tell the kids will you? …He looked lovely when he went…Don’t tell the boys…Silly, silly man!…He knew that we loved him…I think he was happy…I’d never seen him like that…dying…”

(I thought Daddy died at Jimmy’s house after too much whiskey?)

“Yes, he was there and then he came back…He came in HERE (she was pointing around the table) and he said he was going somewhere…I didn’t know he…YOU STUPID man! …Don’t tell the kids, will you?”

(When did this happen, Mammy?)

“It was round about here…about this time…he said, ‘I’m going now’ and then I found him…Don’t tell the kids…I don’t know what they’ll do…”

(I explained that Josh and Conor, had never met Daddy, that he had died 13 years ago, before Conor was even born. I said that Daddy had never been to this house. Mum frowned for some time, looking very confused.)

“No, he WAS here. I know it sounds silly, but he WAS here.”

I made us all some more tea and came to see her grinning like the proverbial Cheshire cat…

“He’s just come…he’s smiling…he looks lovely…BIG HUG FOR ALL!”

Isabelle collected her children after lunch and Conor took Mum to watch a DVD, whilst we waited for her sister. Today is (their mum’s) Nana’s anniversary – 26 years ago she died. When Julia came, we took some flowers up to the remembrance garden. Julia approves of the remembrance vase. We weren’t there long, then we drove into town to drop her off and I took Mum back to her ‘home’.

She always asks me why I’m going and when I’m coming back. ‘See you soon’, isn’t enough.

***

Today Mum and I came back from the TAB Summer picnic, expecting Debbie any time…

“What are you feeling, Mammy?” I asked, because she was clearly distressed.

“You don’t want to know!” she growled, giving another of her very suspicious, shifty looks.

“I really do want to know what you are feeling, Mammy.”

“Horrible…If you want to know…I want to kill myself…I know it’s wrong, but I can’t go on…I can’t live any more…I’ve felt a long time…I’m sorry. It’s stupid. It’s wrong… I know that I can’t do it though…kill myself…I’m a coward… I’d better clean up. The boys will be coming home…I’m sorry I’m a coward…I can’t.”

“I’m glad you are a coward, Mammy. I don’t want you to kill yourself. Did you think about how you would kill yourself?”

“I can’t even do that!” she sobbed.

“Do you think you should kill yourself because of Daddy?”

“”I can’t though…”

“Good. I’m glad. Do you think Daddy is waiting for you to follow him to death?”

“Probably…” she drifted away…

“If Daddy’s in heaven, I’m convinced he’ll be praying for you to have the grace to live a full life, not to die.”

“I can’t do it. And I don’t want to…I’m sorry…” she reached out for a touch…

“I forgive you, Mammy.”

“Thank you.” she smiled.

I wish I could takeaway her distress and pain.

Eventually Debbie phoned to say that she was visiting a sick relative-in-law and wouldn’t be in till late, so I took Mum home again. As we got near to Broad Glade, she asked, “Where are we going?”

“I’m bringing you home.” I answered. “See you later.”

“Are you going?” she sighed sadly.

“I’ll be back soon and Debbie is coming too. Be good.”

“There’s nothing else.” She added with evident disappointment.

I went home, sad and disappointed that Debbie hadn’t managed to see Mum today. I always feel I have let Mammy down so badly. Still, it was lovely to see Debbie and her son James when they did turn up. They had very good reasons for not being there earlier. They were on a different, but equally important mission with a dying lady. Debbie and James promised to spend the following day with Mum and we were all happy to share the evening together.

Mammy in Stromness, with her beloved Grandchildren – Rachel, James and Olivia.

Tuesday evening we said farewell to Debbie and James, and then it was Conor’s ‘Farewell to Year 6’, an evening of drama, song and tears – lots of them, like a dam bursting and sending a domino wave over the whole line-up of year six children.

Of course Mammy has no idea now that Debbie has been to see her and there’s no point trying to contradict her. In her reality, she is right. She always has been. A strange mixture of the stubborn ‘I’m right and I know it’ and the other ever-present ‘I am useless/I can’t do it/I’ve got it wrong again’. She does speak conflicting messages to herself. I am not dissimilar.

It’s a busy week getting ready for a trip to Germany and then for Faith Camp straight afterwards. So much to look forward to and so many friends to be grateful for. Most importantly, I have asked Isabelle, Julia and Monica to visit Mum and look out for her whilst I am away. I know that Monica will see her as often as she can. I feel much reassured by that.

Week Twenty

Yesterday before fetching Mum, a Senior member of staff from Broad Glade phoned. She had contacted the new GP surgery with an ‘urgent request’ for a referral to the Dementia Support Outreach team. She used the word “violent” to describe Mum, saying that Mum has been crying all the time, throwing things, pushing staff away… basically it sounds like she is rebelling.

When I arrived, staff were still trying to contact Mum’s dementia doctor for some support. I think the GP switch has gone a bit pear-shaped. They are obviously doing what they can though. The manager said that Mum had thrown her bowl of cornflakes over the table, so they have moved her to a new table, to dine alone –away from the other residents. I hope that is a temporary solution rather than a permanent precaution. On reflection it seems rather severe. One doesn’t put a child on the naughty step forever!

They had told her I was coming and I found her in one of the lounges.

As they announced me with a “See, we told you your daughter was coming”, I had no opportunity to see if she recognised me today or not. I get ever-tighter hugs.

This time she cried, “I didn’t think you were coming back again. Where have you been?”

I had walked there, so we walked back to my house together, earning ourselves a refreshing cuppa. Many times she asked, “How are the boys?” and “So, what have you been up to?” I tried to answer each time.

I tried to find out what Mum has been experiencing that has caused such a change in behaviour. She said that she “does this and that and then it’s all gone, nothing happened… I can’t do anything. I think I’ve done it, but I haven’t.”

She said yes to feelings of frustration and anger. Frustration about the above and anger at herself, “because it’s me that does it”.

I told her that being ‘mardy’ makes everyone else miserable as well, because they want to cheer her up and help, but they cannot if she’s ‘being mardy’. I wish I knew how to help. I think she would prefer to live here with us, but it became too difficult for us… I do wonder if I should have just forced myself to keep going for her. Sometimes I think she’s so sweet and defenceless; that I’ve not been fair to her.

When I took her back yesterday, the evening staff were standing in a corner chatting and said to ‘put her in a chair somewhere’. I am grateful to them, but I do wish they had more staff and would do more with her and try to interact – more like they do in the day-centre – with conversation, activities and games.

She is safe there and I don’t have to do all the work now, so I must not complain. I’m sure she feels that I’ve abandoned her. I have to remind myself that she was often frustrated and bored living with us. I am trying not to think what would happen, if her defences and mask falls altogether and she decides to rebel against all the fear, pride and pain that held her for so many years… If she finally lashes back, what will she do, or what will they do to her?

I need to speak again to the dementia doctor, or to the Outreach team.

We talked about family and Daddy. I had Mum’s brass tankard downstairs, which still contains some of Dad’s ashes. Mum had it inscribed, it reads:

Malcolm T. Haynes

(Dick)

Dec. 1945 – April 1995

A Very Special Brew

&

no half measures.

It’s supposed to be funny. Special Brew was his favourite beer. Clearly he had had a very full measure that night – it killed him. He was definitely not a man for moderation. All or nothing. Gee, that’s a legacy I keenly feel.

Mammy with her ‘special brew’ – the love of her life (and a goat!)

Chapter 13

It seems that all the ‘carers’ services are compiling surveys at the moment. It was strange to think back to the various volunteers and Befrienders we have had and to how much I valued them for what they offered to Mum in terms of their friendship. Mum could speak with them in a way she would never speak to me, as her daughter.

I did mention, on one form, that I had been disappointed that when Mum went into Broad Glade, none of her volunteer ‘friends’ were allowed to visit her. They each took Mum out walking and would have a good laugh and ‘put the world to rights’. Even though Mum didn’t like going to the day-centres, she still had a variety of activities on those days too. Now she only has me to visit her and take her out. The rest of the time she is stuck in that warm, enclosed environment, surrounded by old people.

I asked Age Concern whether any volunteers could give some friendship and company to the lonely residents in these places too? Perhaps I just need to go more regularly and be satisfied with taking her for a walk around the block, or to the shops.

***

This morning I got another call from the unit manager at Broad Glade, saying that Mum has refused drink, food and medication and is pushing everyone away. She had gone off to another Unit and walked into someone else’s bedroom. The unit manager asked me to come and calm her down and get her to take a drink.

Mammy was in her room, door closed, music on and she was crying. We had a long hug and she apologised for ‘being mardy’ again.

Her general complaint is still that there’s ‘nothing to do’. And she hates that beaker with the spout. I tried to explain that the people there are trying to help look after her, but she said, “Oh, I don’t want that!”

I said that these people make meals and cups of tea for her and help her with washing and dressing, but she said that she does ‘all that’ herself.

She let me put her walking shoes on, glad to get out for a while. As always she transformed the moment she hit the fresh air and soaked it all up. We had a brisk forty-minute walk, up hill and down dale, and got back to Broad Glade in time for lunch. I wanted to defy the system and restore her to her place at table, with the others. So I did and I sat with her through lunch and dessert, helping and encouraging her in a way that they cannot (not because they don’t want to, but because they are too busy).

The other two ladies on the table thought I had come to visit them. Mammy did well with the main course and I fed her the dessert, at which she melted into raptures of giggles and delight at each mouth-full.

Mammy looked suspicious when we first sat down at table and her expression told me that her thoughts were not good. She laughed when I reminded her that I’d known her all my life and knew when there was something awry. What she expressed was that she didn’t trust the people around. She thought they were taking her things from her, as some triggers from the unconscious mind were in fear and mistrust. It reminded me of when she thought that the wild flowers were hers and that someone had stolen them. I reasoned that the people there were too busy cooking her tasty dinners to be stealing cardigans.

The noises in the dining room were disturbing. The TV and a radio programme were both on high volume. There was additional noise from the carers, who had to shout to find out what the residents’ wishes were.

“Do you want ice cream or custard with that, Avril?”

There were involuntary and more unpleasant noises from some of the residents too.

Mammy was not the only one disturbed by the cacophony. It seemed to make them all a little fractious and jumpy.

I spoke to the carers for a while before I left. They are all working very hard, but are obviously severely understaffed and are unable to provide the level of care that they feel the residents deserve. They pointed out that, as the residents in their care get older, their needs increase and for some residents their needs change more rapidly, as Mum’s have done. There are two carers for 15 residents, which, at peak times is nowhere near enough. It is a residential care home, rather than a nursing home, but they are registered for dementia and many of the residents do need high maintenance.

I have decided to write a couple of letters – to the Council and to Age Concern – to make a few observations and suggestions. They cannot form policies and make changes without ideas for outcomes and solutions from others. So I’ll give them some of mine concerning staffing and volunteers and see what comes of it.

Debbie rang, so I was able to tell her first hand about Mum’s change of behaviour and how she is at the moment.

Something I remember my mum saying from quite a young age:- “They shoot horses, don’t they?” I think it was a film with that title, but I remember her explaining to me the meaning of the title. Now, when I see her so lost in distress, confusion and frustration, I think of those words and wonder… I think that she really does not like her life.

***

I got to Mum’s about 11am yesterday to meet the Physiotherapist, but was told that Mum had had nothing to eat or drink and no medication again that morning.

They didn’t know that the Physiotherapist was coming either. I was also told that there have been complications with the GP situation. Mammy is no longer registered with our GP, her medical records have been sent on, but the surgery to which they were going have changed their mind about accepting new patients. So Mum doesn’t have a GP at all.

The home is desperate to get her seen by a specialist, and a CPN (Community Psychiatric Nurse) from St Peter’s Wing is expected to visit soon.

I found Mum marching down a corridor towards me, being herded along by one of the friendly carers. She approached with her head down, eyes up, face like a charging bull in thunder.

I said something like, “What’s up, Misery?” and thought she would kill me. She dodged defensively until I said, “Mammy?”

Well, she gave a desperate cry and rushed into my arms, sobbing – grabbing so tight as if terrified, relieved. “I thought I’d never see you again!” she sobbed.

I’d only seen her two days before, but of course she doesn’t know that. When we were hugged out and wet with tears, I took her to her room. She kept saying how she was daft, stupid, mardy and that she tries to do this and that, but can’t. Unfortunately she doesn’t know why she can’t do it, or what it is that she can’t do. She knows she keeps crying and ‘being loony’, but doesn’t know that she’s being aggressive to others. She is scared. She thought I’d gone forever. She said that she keeps seeing Dad and that he wants to take her somewhere. She wanted to go, but it didn’t happen. She said she doesn’t want to hurt me and I poured out all the reassurance and love possible.

When the Physiotherapist came, Mum was red-eyed but calm. I was surprised to learn that she’d already been to see Mum last week and had shown one of the carers some exercises to do. They were fairly straight forward breathing exercises and I’m not sure how effective they can be. But we did them.

Then I checked out Mum’s medication to make sure there were no more surprises. She has had codeine for the cough (and now needs something to loosen the bowels, because of the codeine). And she is on another dose of antibiotics. I gave her the medication and we played music in her room and had lunch there. We were listening to Willie Nelson, so she was maudlin rather than eating.

“Stop sobbing and eat, or I’ll turn the music off”, I laughed.

“Yes, Mammy!” she replied, taking another mouthful.

Mammy was staring at me again with a soppy look, put her arms towards me and said, “You’re lovely!” She kissed me.

It’s strange but lovely – finally having the warm hugs and kisses that I’d been desperate for as a child.