Week Forty-Two

I don’t think I ever really knew what she was thinking or feeling,she held her cards close…

Sunday evening I got a message to say that Mum had fallen out of bed and landed on her head. The call came about 8pm, so I have been wondering…If she gets up at 4pm after her post-lunch nap, has her supper and then joins the others in the lounge, how could she be found on the floor of her bedroom before 8pm? Had they not brought her down for supper? Or had she had the accident earlier in the day, but only just reported it? I’m also not sure how she could have fallen out of bed. I usually find her cocooned by pillows, with the ‘cot-sides’ up as well. If she had struggled to get out of that, she must have been left unattended for a very long time. I have not seen Mum make that amount of effort or movement for many months. Apparently she has been checked over and she is okay, but I would like to ask a few questions.

***

I felt deflated today. Mum was in the lounge again, but her eyes were closed and I got no response from her at all. No talking, no walking, only tears.

I was able to stay and feed her her lunch – it seems she only gets pureed food now. I must find out whether that is for ease of the staff feeding her. If it is, I could request proper food on the days that I feed her myself.

I asked about the accident – it seems that they do get her up for supper at 4pm, but then they take her straight back to her room afterwards. That means she spends about 18 hours a day in bed. I don’t think that can be good for her, but I do appreciate that it is difficult for them to manage her if she’s constantly sliding onto the floor. I’m sure there must be some chairs that can support her better and keep her in the land of the living…I hope someone puts her music on for her when she’s in her room for so long…Apparently there is now ‘no way’ that she can fall out of the bed again.

***

Saturdays seem to be the best days for visiting Mum. Today we had success with a walk-about and a certain amount of joy. I found her nearly on the floor when I arrived, but she hardly slipped at all whilst I was there. She does cry a lot. Sometimes with joy, other times with pain, fear, sadness, nostalgia… even some seeming recognition of something provokes a tearful response. It makes me sad when my own words and endearments cause her to sob. In some inexplicable way she seemed to be glad of my company today.

I spoke again with ‘commentary Kate’ who remembered Mum’s arrival. She said how Mum ‘can’t seem to bend in the middle’ and could really do with a different sort of chair. It’s satisfying to be able to say hello to the residents and offer them a smile and company.

***

Kate is right, Mum doesn’t ‘bend in the middle’. She was crying a lot and nearly on the floor again today. Also there were what seemed like cries of pain, but she cannot tell me where the pain is, so I feel quite helpless.

Last week I asked if it was her head that hurt and she said it was. It is so difficult to diagnose anything because she cannot communicate reliably.

I mentioned it to the ward nurse and she said she’d ask the doctor to check her over and maybe leave a prescription for some paracetamol. I asked them to check that she wasn’t sore from the incontinence pads and to check in case of a urinary infection, which she is prone to.

I did get Mum to walk a bit today, but she stopped a couple of times and made as if to sit down. Fortunately on both occasions I was able to pull a chair underneath her just in time. I fed her the pureed meal and blancmange again, whilst looking enviously at Steven’s braised steak and vegetables, followed by apple pie and custard. I really must remember to ask about the food.

Steven and his wife are both over 90 and have been married for 69 years. She comes every day to see him and is so lively and encouraging. It is so much more heart-breaking when the sufferer is aware of the suffering. I am not sure whether Mum is now suffering or not. Whether she suffers in silence, trapped inside her head and body or whether she just exists in each moment oblivious of the last, I’ll never know. But I know she sobs a lot and that makes me sad, because I don’t know how to help.

***

Mum looked particularly pretty, freshly bathed and fluffy, but very grumpy today. I couldn’t get her to walk – I asked and she said no – and seemed to mean it.

I asked staff about the doctor – apparently Mum has nothing obviously wrong, but she still seems to be in discomfort. I also asked about the pureed dinners. The nurse looked through her notes to find that Mum came to Sunny Meadows with instructions from the hospital to have ‘soft’ meals. We talked it through and I requested proper food. Thankfully, I was then able to feed Mum braised steak, carrots, brussels, mash and gravy, followed by rhubarb crumble and custard. Yummy. I could tell she was enjoying each morsel as I named it and put it in her mouth. Some success today!

On my way out I saw the manager, who is clearly aware of all the issues. She said they had tried a beanbag for Mum to sit in, but that it didn’t work. I asked about the harnesses that I remember seeing at Gold Acre. She has never seen them but will look into it. It is a problem that needs solving as it causes Mum and the staff an unnecessary amount of stress. I also managed to manicure Mum’s sharp claws, which do get sort of locked into one’s flesh!

Monica wants to come with me next time. I went to see her today, after seeing Mum. She has her son and his partner staying to look after her, so that is good. She was in some discomfort, which is to be expected after such surgery, but she is much more positive about it all now. She told me lots of stories about my family too – on the Haynes’ side. I know I’ve heard much of this from her before, but I don’t seem to retain the information long enough to absorb it properly. I love Aunty Monica very much.

***

The NHS Involvement Strategy Group do not meet very often, but the aim of the group is, as the name suggests, to ensure greater involvement between all the stakeholders in the NHS service. That should mean making sure that views and opinions of the service users, carers and staff at all levels are heard and taken real note of in the policies and practice that then ensue.

I am still thinking about what a carer shared with me at the last NHS Involvement Strategy meeting – he has been caring for his wife at home throughout her journey into dementia. He had to give up work four years ago to do this properly, but does have the support of other carers coming in to help.

He has been seeking advice on what happens at the end, having understood that with Alzheimer’s, the sufferer loses the ability to swallow. Apparently, life is not prolonged by feeding through a drip or peg, so the person is left to starve to death. He said it takes about nine days. He was asking if, when the time came, he could give his wife something to end her life painlessly and not have to watch her starve to death. He reasoned that if you allowed a dog to starve to death, you would be imprisoned. He didn’t get a favourable reply from the medics and the thought of watching her starve is clearly bothering the poor man.

It is such a tough question though. Can you ever condone putting someone out of their misery/ending their suffering/playing God? Does a dying person get the grace they need to cope? Do they drift into euphoria with the hunger as they approach the gates of heaven? I don’t know. I suspect that dying is not as bad as we fear. I am not afraid to die. I am afraid of unbearable, torturous pain, but not afraid of death. I look forward to the resurrection, to being with God and understanding some of the immense mysteries that life on earth has kept veiled…I’m not in any hurry to leave this life either – it’s such a beautiful world and I love so many precious souls here. I don’t think I’ve yet done as much as I might either. None of us is indispensable, but there is a task just for me and I need to find it and get on with it.

Week Thirty

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

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

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

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

---

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

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

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

---

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

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

---

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

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

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

Week Twenty-Three

“This is your life” – At Porchester Road

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

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

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

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

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

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

***

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

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

***

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

“Hello Avril. It’s your sister.”

“No, you’re not!”

“I am, I’m your sister, Julia.”

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

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

“I’m your sister.”

What’s your name?”

“Julia.”

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

***

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

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

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

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

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

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

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

***

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

“You’re not my Mammy!”

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

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

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

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

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

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

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

***

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

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

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

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

Week 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 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 8^th 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 22^nd.

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 Twelve

Earlier I was sharing with Mum some of the more general memories from Herbert Street, the Caravan and Porchester Road (Our 3 homes as a family together), but she remembers nothing. I asked if that was frightening – not knowing what your past is, what you did yesterday or what you will do tomorrow. She acknowledges that it’s scary, but wanted more to express the frustration she feels about knowing what she wants to do, or say and realising that she has got it wrong, without knowing why. It must be so frustrating, confusing and very lonely, in a space with no memories to keep you company.

***

Mum is very tearful again today. She couldn’t get dressed and after breakfast she said she would like to read, because she ‘should be able to’. It was distressing to show her why she can’t do it anymore. We looked at one of Conor’s birthday cards to illustrate the point that even if she reads one word, she has forgotten it after reading the next one. Nor does she read across the page, she reads random words vertically down a text, so comprehension is impossible. But she was positive and said,

“I’m gonna keep trying…I should, shouldn’t I? Too many times I try to do something and I can’t, so I throw it away…I’m not going to keep throwing it away…I can keep trying, even if it is silly…I know it is in there, I can see it, but I can’t get it. I hope I get better.”

I asked what was ‘in there’ that she was looking for and she said sadly, but emphatically, “ME!”

“I can see you, Mammy. I know you are there and just the same inside.”

“You are my precious one”, she said, “and I’m proud of you.

Wow! Such comments are more precious than rare diamonds to me.

”Then came the knock on the door and I told her it was the bus.

“Oh, no!” she pleaded, “Do I have to go?”

“Yes, Mammy! I need the space to do what I’ve got to do. I can’t do it otherwise. I’ll see you later.”

She went away with some understanding I hope. I couldn’t cope if she didn’t do the Day-Centre.

***

We have abandoned baths altogether now. After breakfast and shower, when the boys had all gone their various ways, we rested a moment in the peace and quiet and I asked Mum what she could remember of her wedding day. She replied, “Nothing at all!”

“But you haven’t even thought about it yet!” I countered.

“I can’t remember anything.” She repeated. “We were too young.”

I reminded her how Daddy seemed to suddenly change, when a new doctor in Orkney changed all of his medication. She couldn’t remember, so I tried to remind her of the things she had told me, about him becoming ‘a teenager again, smoking roll-ups and starting to be sociable’. I also recalled some of her ‘Tarzan and Jane’ antics, that she had alluded to shortly before Daddy died. It was great that he had a couple of good years before he died, but it was a shame that his medication wasn’t reviewed much sooner.

I also suggested that it was good that he wasn’t around to cope with her dementia and she agreed, but argued,

“I was always like this: getting everything wrong and forgetting everything. He used to hate it and get very angry with me.”

“You were always scatty”, I agreed, “but I don’t think you had dementia. He wouldn’t have known what to do with you now. He might have tried to drown you.”

“He probably would” she nodded, not at all shocked by such an outrageous suggestion.

“How does it feel to have lived 32 years with a man that you knew had tried to kill you and may do so again at any time?”

“I don’t know. We were too young. He was hurting himself. And scared.”

“I guess he was scared, but I don’t think he had the right to terrorise his wife and children! Did you ever think you should have left him?”

“No! How I could I?” she said incredulously.

“I suppose you thought it would be worse if you tried to leave him; that he would find you and kill you anyway?”

She nodded.

“Weren’t you ever angry?”

She laughed. “I would never show it!”

“How do you feel about it now?”

“I don’t know. Anyway I’ve blocked most of it.”

I told her that I was angry about his treatment of her and of us. Although I know that he had his own baggage from his miserable childhood, I believe that he had no right to inflict such cruelty on his family. I think we have the right to be angry. I also loved Daddy and have forgiven him and I pray that he will now know true peace. But the damage takes a lot of healing. It was not her fault. It was not our fault. Daddy was responsible for the damage he caused. And I needed to say that. Mammy is also responsible for the damage she caused by her neglect and coldness – but it is no good opening that can now.

I don’t know how much she followed, but she seemed more at ease after our chat.

In the shower she had such a lovely smile, she almost looked as if she was enjoying the water. I felt very protective towards her, willing her to feel safe and loved and OK. I washed her gently, so much desiring her well-being and healing.

I am feeling even more sensitive, with some guilt, that I am to meet our Social Worker tomorrow to discuss the possibility of NHS funding for long-term care.

***

Chapter 9

I have been thinking of painting a canvas for the dining room, and was saying how nervous I get when painting. Mum couldn’t understand me, nor could she remember the many paintings, metal ornaments and gadgets that Dad had made during his life. Dad never liked what he had made and on completion would either destroy it immediately, or would present it to someone apologetically. Happily I have three things that Dad made for me during my life – he also made tractors, trailers and boats – always his own unique design – he was particularly gifted with metal work and engines.

After I was disowned at 17, I had little to do with Mum and Dad for the next three years, although I did see them, when they allowed it and when I felt strong and safe enough.

Aged 20, I went to live in Germany and shortly afterwards, Mum and Dad moved up to live on Graemsay, in Orkney. My UK home thereafter was ‘Pa’s’ house.

In the early days on Graemsay, Mum and Dad lived with no running water, no electricity nor any mod cons. They had both always enjoyed ‘The Good Life’ on the television, and being away from people and having an old croft with lots of land, must have seemed like their ‘good life’ was finally about to begin. In some ways it was. Certainly their major responsibilities had been left behind. It was only each other to look out for. Eventually they got electricity and Dad put pipes in to pump water from the well into the kitchen.

Every second Sunday, at 12.30pm, they would walk across to the phone-box in the middle of the island and wait for me or Debbie to phone. I wanted to visit them, but whenever I asked, Dad would say no.

Eventually, as a University student, I took the long bus ride from London Victoria to Thurso. Next came the sick-inducing ferry from Scrabster to Stromness, then the small boat from Stromness to Graemsay. I was very anxious, tired and excited. The journey took 2 days. The views and the wind were breathtakingly beautiful on the sea at that time of the morning. Dad didn’t know I was coming.

After an awkward and difficult entrance, we had a lovely time. I adored the place. It was bleak, but not as bad as the picture that I had painted for myself. They had goats, sheep, chickens and geese and Mum had a good crop of potatoes, onions, curly-kale and plenty of sea-weed to gather. It really was quite idyllic. They had lots of land, fields, part of the beach, where the seals liked to bathe; a barn and lots of tumbled down byers and bothies. Dad made his fire breathing home-brews and even got in some wine and beers later to mark the occasion.

I was hoping to build bridges and bury the ghosts on this trip. In a sense, some of that happened for Daddy and I, because he did apologise and I realised that he simply didn’t think that his actions had been wrong. He thought I was just too young. I also asked Mum if I could be her daughter again yet. She said:

“I suppose so. I never really liked you, but you’re OK now.” Then she added, “But I’ll be glad when you go again, because I’ve got a lot to do and you’re upsetting my routine.”

I certainly felt a great deal better leaving Graemsay, than I did going.

I didn’t see Daddy again. He died five years later at the tender age of 49, of ‘acute alcoholism’, during one of those evenings drinking the home-made fire. He was happy and out socialising with his good friend – one of the 23 residents of Graemsay. God rest his soul. I went up for the funeral in Aberdeen and stayed a fortnight with Mum. She was bereft and devastated.

This wonderful poem was written in memory of my Dad, by a good friend of my parents, Tony.

In memory of Dick Haynes

When the moon comes flying over the sea

and the call of the curlew reaches me,

when sunrise turns the stony shore to jewels,

and golden dewdrops gleam on mushroom stools,

I think of island days, oh days of old,

and some were days of grey and some were gold.

We talked of trailers, tackle, a boats prow,

oh many things. And I remember how

we talked the sun down to the ocean’s rim,

and messed about until the yard grew dim.

Oh man, what days were they that passed us by,

under the wind’s wail and the gulls’ cry.

Never another day, oh never another day

and some were days of gold, and some were days of grey.

A.R Copyright [Notes 2]

Week Eleven

Chapter 8

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

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

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

***

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

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

“I don’t know!”

Do you want tea or coffee?

“I don’t know”

Why are you crying, mammy?

“I don’t know”

Shall we go out?

“I don’t know”

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

“Pardon?”

“Well, I don’t do anything all day!”

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

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

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

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

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

***

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

***

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

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

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

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

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

***

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

***

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

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

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

***

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

***

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

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

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

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

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

Week Ten

Chapter 7

Today Mum had the ‘Spirometry’, a breathing test to measure the force and amount of available breath. Mum does fine breathing, but it is so difficult for her to follow instructions other than the most basic. Like last night when she had pulled off a sock with the trousers and I gave it to her and asked her to put it back on. I came back with some fresh drinking water to find her with the sock on her knee and her foot in the sleeve of the nightie. She couldn’t see what was wrong, but when I explained that she had her foot in the sleeve of her nightie, she thought it was hilarious.

As far as the breathing goes, we are going to try a steroid inhaler for 6 weeks, to see if the cough disappears. Unfortunately, the inhaler they’ve given doesn’t fit into the ‘spacer’ device that she is used to, so we are having to try learn a whole new trick.

***

The ‘School holidays’ have begun. Today I managed to get Josh on an important mission, so that Conor and I could pick up his birthday cake, whilst Mum was out with her ‘Befriender’. It looks fabulous – designed by Conor and made by the wonderful people in the cake shop. The cake is a ‘stage’ with a singer, guitarist and drummer, with ‘Ubaphobia’ (the name of Josh’s ‘band’) written across it, with his name and age – 13. The next task had to be carefully planned, so that neither Josh nor Conor would know about it. I had to go to pick up Josh’s present from town. I left the boys in charge of assisting with Mum’s artwork, took the car and managed the wood shop and the drum shop in town, without arousing any suspicion. There is now one ‘Repenique’ (a ‘Samba’ drum) in the back of the car, complete with strap, case and beaters. I’m very excited.

The boys have been talking lots about ‘Faith Camp’ recently and I’m sure Mum must have been wondering what was going to happen for her. She finally pleaded, when the Sitting Service arrived, “Am I coming?”

“What, are you coming camping?” I asked.

“Yes.”

“To sleep on the floor in a tent?”

“Yes.”

“No, mammy, you won’t be able to come with us.” I said.

I imagined with a shudder how absolutely unsuitable it would be. She would hate the noise in the main meeting tent and would need escorting to the toilets every few minutes across the campsite. I would have to watch her 24 hours a day. She knows she’s not coming and she is letting me know that she resents this. I bet she’ll remember that now for the rest of the week.

I got a phone call earlier today from the ‘Evening Post’, to talk about the needs of carers in the light of some new money being ‘poured in’ to help support carers. I reported that everyone in the support services had been great, but that the process was too long and disjointed. The people have been helpful, but the services are spread thinly, are rather inflexible and they don’t interrelate enough. They want to take a photo of me later, to put with the article in tomorrow’s paper. I hope they do put in some extra support. It’s hard to believe that there are ‘more than 80,000 carers in Nottinghamshire – about 10% of the population.’

***

I had a good heart-to-heart with Mum this morning, so I hope it will have helped. She had had a grumpy, silent breakfast as I sat with her. Then she went into the kitchen and started chatting away. She does this a lot – talks lucidly away to herself and says nothing in company. Admittedly, a lot of it is moaning and grumbling that she dare not say outright, but sometimes I’d rather hear it than just feel it.

“Are you talking to me, Mammy?” I called in.

“No.”

“Is it easier talking to yourself? I wish you would talk to me.”

“Don’t I talk to you?” she sounded concerned.

“Not nearly as much as you talk to yourself.”

“I’m sorry. I don’t help you very much, do I?”

“Mammy, you do. You know that the only thing that ever bothers me is when you are mardy and grumpy. Doing stuff for you and with you is good, but I can’t handle the bad moods. We’ve found two day-centres, so that I can do what I need to do and you can meet people and have some fun. After all, it’s much better than following me around the house, looking for something to do.”

“I know, I’m sorry. Sometimes I look at you and I know I’ve hurt you.”

We had a good hug and she went off arm in arm with the driver. I just hope she takes some of that sunshine to the other folk at ‘The Broad Glade Day Centre’ this morning.

***

I knew she would remember that I was going away. She didn’t even break a smile when I put a Willie Nelson tape on. I know she was feeling rotten, but I’m feeling anxious enough about packing, camping and the baby inside; and Mammy is just crying for all my attention. I could hardly stay awake any longer and had to lie down. Simon and I will at least get some time together this week though. I bought a double sleeping bag today.

To wash Mum’s hair now, I climb onto a chair at the open shower door; otherwise the shampoo runs down to my armpits and soaks me. Sometimes I just strip off and wrap a towel around me, but this works too; except today I leaned a bit too far and the chair tipped. Mum couldn’t have stopped my fall, so I grabbed the tiles and all was well, but it shook me. She said she was jealous of anybody who can do things for themselves. I think she is also jealous of me going away without her. Once she was dry, the tears began to fall silently. I kept telling her it was only for a week, Monica was going to visit, camping is completely unsuitable, no toilets nearby, etc…but she kept crying – all the way to the care-home. Conor told her she was snotty and should blow her nose, but she was too far-gone today. I don’t know what the care-workers thought, (there were lots of them around this morning) but I’m sure they’ll cheer her up and she’ll have forgotten it all when we come to pick her up again.

I guess I can turn my mind to camp now. When I come back, it will be August and I’ll have my scan on the Monday. (9weeks).

***

Camp was fabulous. This year is our 7^th Camp together. To have a whole week in the presence of God and His children is such a blessing. The boys are so much more independent now, that I actually had a good rest as well the opportunity to pray and worship. According to Josh it was ‘the best camp ever’. In many ways it was my best too. I love being able to introduce ‘my husband’ to people at last. We had lots of afternoons to ourselves, to chat and laze around in the sunshine. Unfortunately I had a bad last night and in the morning I had such pain in my abdomen and back. It took some hours before I realised that I was having contractions. We managed to pack up quite efficiently as the pain intensified, but it was very distressing. The journey was a blur through a pain screen and when I got home I was bleeding heavily and got an ambulance to the West Hospital. Eventually the morphine calmed me down, but it still hurt – I just couldn’t keep my eyelids open. I had miscarried before getting to hospital, but the rest still had to be ejected, so they kept me in there until Monday evening. Two beautiful babies now that were not meant to be. They are in God’s hands, but I don’t have the space to grieve.

Meanwhile Mum was supposed to come home on the Sunday, but Simon was able to explain the situation and they were prepared to keep her one more day. Simon fetched her on Monday but I wish I could have had a day or two at home alone to rest and grieve. I think Mum had a good time. Pat, Monica and Alf had all been to see her and said she seemed to be well looked after.

I’m beginning to wonder whether she is perhaps happier with the routines and life in the home, than she is here. She rarely seems to be happy here, no matter how much we lay on for her. At least, she’s happy during the activities, but as soon as she is left just one moment she gets restless and starts to flap with that ‘hanging about’ expression. Last Tuesday was a good example: Pat came to visit, then her Befriender came and they went out for a long walk and ‘put-the-world-to-rights’. They stopped for coffee and cakes and then Mum and I toured the garden and sat out for a chat. At 2pm the O.T.’s artist came and Mum painted her papier-mâché plate; then, after tea, cakes and more friends visiting, the Sitting Service arrived and they had a good laugh, listened to music, had another long walk and drink in the pub… At 7.30pm, Mum’s sister phoned and spoke to her and I heard Mum complaining:

“Nothing much at all! I don’t do anything. I’ve just been hanging about!”

I made sure I spoke to Julia myself and used that day as an example of what ‘just hanging about’ often is in reality.

She’s out walking with her Befriender again now. I often wonder what Mum talks about to other people. I’d love to be a fly on the wall. I want to try doing some alphabet and words later, because whenever we’ve done it in the past, she has improved with the reminder and we’ve vowed to do it regularly – like so many good habits and intentions.

***

It wasn’t a good idea. Not today anyway. She knows how to read the letters of the alphabet still, and can read individual names, but cannot write anything today. She was shrinking her neck backward into her shell and when I encouraged her she would say, “I don’t know what I’m supposed to be doing!”

“It doesn’t matter if you don’t want to write anything today. Your reading is still good.” I tried to reassure.

Then I got out some old photographs, because she usually enjoys looking at them and comments, “I haven’t seen that one before” and smiles longingly as she recognises past times. But not today. The only picture she recognised today was of me, taken when I was about 6 years old. She identified a photograph of her Mum – but she didn’t recognise herself or her sister smiling proudly on either side of her mum. Now she feels inadequate again and I am exhausted.

***

Mum is seeming to deteriorate these past weeks. This morning I woke her, gave her her clothes and came down to make breakfast. After 25 minutes she had done her top, but was rolling the trousers round and round her hands. Taking the trousers from her, she screwed up her face, saying there was such a ‘nasty smell in here’. I said it was probably the commode, as she had used it in the night.

“No I didn’t!” she suddenly growled at me.

“Yes you did!” I retorted. “Do you want to see it?”

“I didn’t use it at all. It wasn’t me. I haven’t been today.”

“Maybe you haven’t been since you woke up, but you used it in the night. No one else comes in to use it, Mammy.”

“They did. I didn’t.”

“Whatever! Please don’t argue with me, Mammy. You don’t remember what you’ve done 10 minutes ago sometimes, so you probably don’t remember what you did during the night!”

“I do know…”

Nauseous, rattled and wanting to stick the commode in front of her nose, I dressed her and led the way downstairs. Conor tried speaking and playing with her, but to no avail. I’d successfully spoiled her mood for the morning. Despite a few meagre attempts to converse, we did the school walk in near silence, holding each other’s sweaty mitts.

One aspect that has noticeably deteriorated is her proprioception. When she wants to touch a part of her body, for example, she reaches her hand outwards to external things. In the shower if I give her the soap and ask her to wash ‘down below’ she reaches out, touching all the sides of the shower-cubicle trying to find the bits to wash.

I now have to wash her bottom for her, she doesn’t even wipe it now; she gets the toilet-paper, screws it up and shoves it into her pockets. At the undressing end of every day, when she gives me her rolled up trousers, I tip several hands-full of tissue into the bin. There is no point arguing or showing her the evidence, because she believes she is doing it properly and gets upset if I challenge her. Sometimes, like this last week, I feel the need to challenge her; but I regret it later.

It isn’t her fault, I have to remind myself – frequently.

Two weeks ago she had another fainting fit. Conor was with Nana in the dining room when she suddenly slumped off the chair and hit her face on the floorboards. Conor was freaked, but Nana did her usual jerks and had a nosebleed. She was a bit fazed by the blood and by finding herself on the floor, but we got her into a comfy chair in the sitting room and attended to her nose. She was complaining about her teeth, which she kept dabbing with her fingers. Suddenly she pointed in front of her to the left and exclaimed, “What’s that?” I looked over towards the TV, which was switched off, and asked what she meant, but she kept pointing and saying “It hurts!”

“Touch what hurts, Mammy” I suggested and gradually her hand closed in towards her face and I realised that underneath her fringe a huge swelling had appeared over her right eye. We got an ice pack and phoned NHS Direct, who sent a couple of paramedics. They did a thorough check of Mum’s blood sugar, oxygen, blood-pressure, heart, pulse, breathing and felt around to check that nothing was broken, cracked, or out-of-place in any way. They recommended Paracetamol and sleep. Poor Mum. The next morning she slept in, but had such a whopper of a black eye. The following day was our planned ‘boat trip day’, with the ‘Take-a-Break’ group. Mammy awoke with two purple eyes, but was feeling much better in herself, so we went to the river. Mum became tired very quickly and I had to answer lots of questions about Mum’s ‘panda’ face. I almost began to feel guilty – like I had given her the black eyes.

Week Nine

Chapter 6

The current night-time routine goes something like this – Mum comes to say prayers and join our ‘goodnight time’, usually in Conor’s room, as Josh’s room is up the second flight of stairs. Simon and I take turns to be with each child. Then I take Mum to the bathroom and for night-dress, medication and bed. Medication is only a mini aspirin (against strokes), a Simvastatin (against cholesterol build up) and two puffs of the Salbutamol (to stop the wheezing). She is usually so tired by this time that her eyes are flickering and she cannot think for herself, so getting undressed is very much a guided affair. I give her a tablet into the hand, she pops it in her mouth and then looks into her hand and at me – back and forth.

“Do you need your water?” I’ll ask..

Then we get ‘the shakes’, a few attempts to swallow and then the next tablet. Lastly, the Salbutamol – she looks surprised to see it, screws up her little nose and squishes it against the mouthpiece – she looks like a little pig – and we both laugh – it’s part of the routine.

“Suck!” I instruct… “Now breathe out through the nose… Suck…out through the nose…Well done!”

Nine times out of ten, she will giggle and say something along the lines of,

“What is it supposed to do?”

And I take a deep breath, smile, and explain all over again.

***

I awoke to the sound of Joshua’s alarm this morning, at 6:30am. Mum came down then with her trousers on back to front, but that’s OK, as her tummy is bigger than her bottom, so they actually fit better that way. She had her shoes and socks on and an open cardigan on top of her bra. Something else wasn’t quite right though and she was particularly unresponsive.

When finally all the boys had gone and we sat down with a second cup of coffee, Mum said, “Oh yes, there’s something I need to tell you.”

In essence she said that she had got up in the night, looked around and wondered where everybody was, come downstairs, looked this way and that, and had gone ‘out onto the road’ to find us. Then she had come back in again, but couldn’t find anyone.

“It has been such a long night!” she moaned.

I don’t think I handled it correctly. She clearly hadn’t been out onto the road, or out of the house, because she cannot get out. She has never yet managed to get out of the front door, nor close it. The door is so stiff that you need two hands, elbow grease and a knack. And it is extremely noisy to open and even more so to slam shut.

But she had her story firmly in her mind. Somehow this sticks in her memory as real to her. Was she hallucinating? Had she dreamt it? Had she heard the road and looked out of the window? Was she remembering a childhood reality or fear? I don’t know. I tried to explain all of this, but she refused to accept it, “because I was there!” she insisted.

So I asked her to go out and show me what she had done. This was perhaps cruel, but I didn’t want her believing that she was unsafe and able to wander in danger. Needless to say, she couldn’t even find the door to the road, so I showed her the door and asked her again to show me where she had gone. She could not open the door. Of course, then she was frustrated that I didn’t accept her story and was ‘scared’ by the confusion. More hugs and a chance for her to release some more tears.

I should have pretended that she was right.

I tried to make her laugh with the idea of her story in this evening’s papers – ‘page three lady, out in the road early this morning, looking for talent.’

The bus came ten minutes later and Mammy still seemed ‘flat’. I hope she doesn’t carry it with her all day.

***

Mum has been dissatisfied and ‘bored’ all day. I’ve had some chores to do, but we went shopping together and visited Pat, she spoke to her sister on the phone, did a tour of the garden, had tea and cakes, and listened to ‘Far from the Madding Crowd” on cassette. By 7pm, I thought she was going to burst, she looked so angry and huffy.

“All I do is wander about, with nothing to do. Just walk about.”

She cannot remember going out today, or anything else she’s done, so she does believe that all she does is wander about. Sometimes I have nothing useful left to say. I do recap on the activities of the day for her.

Today she did apologise, after my explanation. She does seem to realise when she has been ‘mardy’.

I’m also a bit nervous for Conor on Wednesday – he goes for his general anaesthetic and teeth pulling.

The boys don’t know I’m pregnant yet. That’s the other thing – this is the start of my 7^th week, and the last baby died during the 7^th week, they said. That is making me out of sorts too.

***

Today we’ve been busy all day and it has felt good. After the usual Monday routine, we walked up to the church where I recently discovered that Mum’s mum and dad both have their ashes ‘buried’. Mum and I sat contemplating in the beautifully peaceful memorial garden. I discovered that the vicar lived next door, so, feeling brave, I rang the bell. He was very accommodating and took us to see the plan of the garden and the book of records – their names were there: Elsie Marjorie Cowen, died 1982 (A8) and James Alvin Cowen, died 1992 (B39). It was very satisfying and felt quite strange, that after all these years, Mum and I should end up living a ten minute walk away from her parents’ place of rest.

We have decided to get a marble memorial ‘flower-pot’ made as soon as possible. Mum is very pleased with the idea and wants to pay for the work, which is fitting. Anyway, with the back pay coming from the Pension Service, she can afford it now.

I want to be buried when the time comes.

I asked Mum, but she doesn’t seem to know. It became a family discussion and Josh said he wants to be ‘left to nature’ or fed to the lions and Conor wants to be cremated and his ashes thrown to the wind from the top of a high mountain.

***

I loved my Nana and Granddad Cowen. They were the only family to ever to take us on holiday and they told amusing stories, sang songs and were a bit ‘risky’, cheeky and daring. Nana wore make-up, fur coats, perfume and lots of smiles, and she chain-smoked. She was riddled with cancer when she died – only 65. Granddad was 5 years younger, wore a cap, braces and smoked a pipe. He was not much liked by his own kids, but loved by his grandchildren. He was 70 when he died. Nana was an Anglican and brought her children up through the church to confirmation. I remember Mum telling me, many years ago, that she had decided at the wise old age of 13, that the Bible was a ‘bunch of lies’ and that she was a non-believer.

Years later, when Daddy died, Mum used to experience ‘him’ coming to visit her regularly and this caused her to ‘know that there is life after death’ and accept Christianity for herself. As she put it in a letter to her ‘Aunt Grace’, in December 1995, “It’s my first ever experience of anything ‘unusual’ and now I’m a firm believer!”

***

Last night was the ‘Joseph and his Technicolour Dream Coat’ presentation at Conor’s school. It was all a very welcome distraction, because I was getting nervous about today. We were up at 6.15am for Conor’s general anaesthetic and operation. All were good-humoured at home and no one dawdled getting up. Then Mum collapsed again at the breakfast table and fell off her chair. We kept it low-key, as again she didn’t know it had happened. Simon has taken the morning off work to help. In the car to the hospital, Mum had another turn. Simon will have to inform the Day-Centre when he drops her off later. I keep a record of all her fainting fits.

Conor and I arrived at the hospital in good time, but had a very long wait. At first we had fun, playing a game with two soft toy characters that he’d brought with him, then we had some great chairs to play in and two and a half-hours later we were called to the operating theatre. The anaesthetist was excellent. He kept Conor distracted beautifully whilst he put the needle in. I watched it go in, then looked at Conor and got such a shock. He was out cold. They told me to kiss him and go. His eyes were open like a corpse, and it was all I could do not to close his eyelids or to cry as I kissed him.

“Look after him please.” I pleaded.

I went and prayed, marched around and drank some coffee.

He was ‘down’ for 70 minutes, due to his little body, they said. He was very woozy afterwards, but he wouldn’t sleep. He kept trying to stand up, only to find his legs too weak and would fall. He was feeling sick and of course his mouth was still all very numb from the anaesthetic, which made drinking water and eating ice cream satisfyingly messy.

Then we had a heart tugging film to cuddle up to – just Conor and I. I feel like I’ve been awake all night and day – that spaced out feeling.

Mum is home from the Day Centre now and Conor’s got a big fat lip and is complaining of a bad back. After tending to him, suddenly I felt compelled to look out of the window, just in time to see Mum disappearing out of the back garden. Down I ran and caught her at the corner, heading for Burton Road. I suppose I should have waited to see what she would have done, but this time I couldn’t leave Conor, so I had to bring her straight back. She insists that she knew where she was and how to get back, but I don’t have the energy to risk losing her today.

Week Seven

At the age of 17, on a beautiful August day my lovely Nana finally gave in to the cancer that had riddled her body. I was devastated. Dad took Mum to Nana’s house and then went to his yard, a motor- mechanics’ business, which he had inherited from his dad a couple of years earlier. They had left me at home to mourn in peace. I took my one cassette tape (Fleetwood Mac) out into the garden and lay in the sun, crying and thinking about Mum and Nana. After what seemed like several hours, I heard a dreadful noise. It was Dad’s car returning. My stomach in knots again I waited, hoping he’d go to bed and leave me in the garden. He banged on the kitchen window and beckoned me in. What followed is unclear, like a storm. He was ranting about me being a whore to the neighbours, disrespectful to my Nana and a nasty b***. He whacked me repeatedly around the head and kicked me to the floor, knocking the ironing board and other furniture flying. He was mad. Arms and legs pumping, he screamed at me to get out before he killed me.

I knew he meant it and how I got to the front door and got out, I don’t know. I ran as fast as I could, shaking and crying until I found myself near Isabelle’s house. She was away on holiday with her mother, but her Dad was at home. I stood sobbing on his doorstep, before plucking up the courage to knock. He was very good to me and offered me sanctuary. Later that day, Mum found me and forced me to go back home, saying that she was not going to lose her mother and her daughter the same day. I made her promise that Daddy would not touch me again. I don’t think he did. He had very little to do with me after that.

When Isabelle returned, she was furious and begged me to come to live with her. Her Dad (Mr K.) was happy with the idea and we devised a marvelous plan: one day a friend with a car came to my house when the coast was clear. We quickly loaded all my belongings and took them to Isabelle’s house. Then I walked to Mum’s shop, to give her the key and tell her what I thought she should know. It didn’t go as planned. I’m not sure how I expressed what had been happening all those years, but now it was Mum’s turn to be angry and thump me. She called me a deceitful liar, amongst other things, saying she had never liked me and threatened that if I didn’t have everything back at home by the time Dad got home, then Dad would come and kill Mr. K., as well as us. I called Isabelle and told her that I had to go back, having no idea when Dad would return. We no longer had the friend, or his Mini, so Isabelle and I legged it back and forth with box after box, until it was all back in order.

For the next few months at home, Mum was in charge and I had certain freedoms. At weekends I was allowed to stay at Isabelle’s house. I did as many of those things that young girls are not supposed to do. We rarely stayed in at Isabelle’s house, but her Dad was fabulous. She could phone him on a Sunday morning and he would always come and fetch us, from wherever we had stayed the night. One such Sunday morning, between Christmas Day and New Year’s Day, Mum saw Mr. K. drive up the road with an empty van and return with us party girls about 20 minutes later. She put two and two together and made ten, deciding that we were prostitutes, drug dealers and whatever else you think of, and that she didn’t want me in her house anymore.

She had formally disowned me. I was no longer her daughter, she no longer my mother. She typed out a contract for Mr. K. to sign (as I was not yet 18), giving him full parental rights over me. Mr. K. was happy to sign it.

That was a New Year to rejoice! How happy I was to leave. It hurt to have her disown me though.

She didn’t want to face reality. Even when Dad died, the first thing she said to me – when I rushed all the way to Orkney, from London, with my baby Josh was:

“I don’t want to hear anything bad about your Dad, now or ever. I want to remember the man I loved.”

Doesn’t that say it all?

When he was gone, she slowly lost a grip on how to ‘seem to be normal’ and then lost all the secrets and most of the memories. I can’t blame her for wanting to forget though.

***

Chapter 5

I have been extra busy and a little ‘down-in-the-dumps’, with little irritations making me more tired than usual: my eyes and ears are sore, the head aches a lot again, the back is giving me ‘jip’ and, due to decorating, the skin on my hands is cracked and stings.

On Tuesday I had to take Conor to the West Hospital – this time to Orthodontics. Simon had to take the day off work, so that Mum could have her ‘Befriender’ and ‘Sitting Service’, which are both on Tuesdays. The ‘Befriending scheme’ is a service provided by volunteers and organised by the Alzheimer’s Society. Simply put, a volunteer will agree to visit the ‘service user’ at a mutually convenient time each week and ‘befriend’ them. ‘The Sitting Service’ is a more specialist voluntary organisation, run in Nottinghamshire by ‘Trent Crossroads’. These workers have some training and are paid by the Council, but they perform a similar task to the Befriender.

(See Appendix 2: ‘Helpful Organisations’)

It was a bit squirmy in orthodontics, when they put the green putty in to make the shape – and fitting the tight metal rings was painful, but the rest of the day was great. They are making him a ‘palatal arch’ for when they extract his molars. Poor Conor has to have 8 teeth pulled out in July and he is going to need a general anaesthetic – he’s still my baby and I don’t like the idea at all. I hope he gets to like soup. We didn’t get back until three. Mum had had a good day so far and remembered having ‘something yummy’ to drink in a café with her ‘Befriender’.

The Sitting Service volunteer came then, and Conor and I went for his last swimming lesson.

Interesting things happen when we become hormonal. Apart from the physical bits being more sensitive, the nerves cut like knives. As for making decisions – I become almost paralysed, as if facing a life-changing choice, like: shall I make a pot of tea now, or when I’ve finished hanging the washing? And I keep banging into things.

Yesterday and today, in amongst the decorating and gardening, I’ve been sewing up ties, cutting Mum’s hair, doing HMRC assessments, ordering a disability badge for the car and managed some prayer time. Feeling satisfied, but there’s such a lot planned, that I think I’m feeling some anxiety too. Simon’s friend is staying over tomorrow before his wedding on Saturday. Mum is coming with us to this wedding, so we all need dressing up and I have to drive. It is not easy to get ‘babysitters’ for people like Mum and as we are not sleeping away, Mum should be able to handle it.

Bruno’s and Violet’s First Holy Communion is on Sunday, with a party to follow. Debbie is coming on Tuesday, until…? On Wednesday: the Pension Credit People are coming AGAIN to ask more questions and hopefully get these forms finished… Ana is coming on Thursday night, and on Friday Simon and I fly out to Jersey, leaving Isabelle and Ana to look after the boys and deliver Mum to Broad Glade. Ana was one of our many fantastic Au-pairs that we had whilst I was working and living in London. She was our Au-pair for two years and then later lodged with us for another year before we left London. She still works in London and comes to visit us for holidays.

I am really looking forward to a break in Jersey with Simon. It will be our first time away – just the two of us – since our honeymoon.

Yesterday we went to see Mum’s dementia consultant, who I understand to be the ‘top dog’ at the St Peter’s Unit Unit. She didn’t keep us long, but what she said has knocked me for six. The very thorough O.T. had given her notes to the consultant, who, on reading them, doesn’t feel that Mum is presenting Alzheimer’s at all.

She might not have Alzheimer’s?

She said that the report suggests ‘frontal lobe’ deterioration, which is apparently not consistent with Alzheimer’s. ‘Frontal lobe’, of course, is what the ‘epilepsy specialist’ was talking about too. So if Mum is having ‘frontal lobe seizures’, would that not cause ‘frontal lobe deterioration’?

I didn’t ask these questions. The consultant wants to refer Mum to another neurology specialist for a second opinion. How will I feel, if I discover that Mum has had epilepsy all this time, which, had it been diagnosed and treated correctly, might not have resulted in this incapacitating dementia? Could treatment now halt or reverse the deterioration? Does that mean Debbie and I probably haven’t inherited Alzheimer’s? I guess some of these questions will be answered in time. Meanwhile we await the ‘brain-wave test’ (EEG) and the neurologist’s ‘2^nd opinion.’

It does offer some hope though, as well as questions.

Mum had another ‘little episode’ on Monday. She didn’t faint this time, but she ‘blanked’ and her eyes rolled for a while whilst she shook. Her hands and skin look white and puffy and she is coughing again quite a lot. The GP must be sick of us by now, but we visited her again to formally get the results of all the recent tests – chest X-ray and blood tests. All of it is clear.

But the cough is still a big problem to Mum. We now have 2 more avenues to explore: asthma or possibly something to do with ‘reflux’ from the oesophagus into the lungs.

The dementia consultant has just phoned me. Her ears must have been burning. Like many of the professionals involved with Mum, she has shown genuine concern for my ‘state’ as well. The epilepsy specialist that is arranging the EEG has told her of her own doubts about the Alzheimer’s, but the other specialist wants to keep the case herself. According to the consultant, the question of type of dementia, is ‘all very academic’, compared to the day to day job of caring. Apparently in the 10% of dementia sufferers who have neither Alzheimer’s nor Vascular dementia, there is a relatively rare ‘frontal and temporal area’ dementia, which may present like Mum’s does. Anyway, the EEG should uncover more of this and I will see the epilepsy specialist to discuss findings in November. It seems a long way off. The consultant said it sounds like Mum is having chronic seizures, which prevents oxygen reaching the brain; so if it gets worse, medication for epilepsy would be better than whatever side-effects may result from the medication, but…It is very difficult watching everyone doing tests all the time, but nothing conclusive happening. I think we would all feel somehow ‘rewarded’ if even one test result would point to a definitive cause and a possible solution.

I know they are all doing their best. We all are.

I still wonder whether therapy for Mammy could be helpful. I did mention it to the consultant, that she has ‘had lots of bad stuff in her life’. She said something vague in response and I dropped it, but…