On Tuesday she wouldn’t let me anywhere near her. She was saying, “Go away. No!” the moment she saw me. I couldn’t be bothered to argue, but I’m not giving up hope.
On Saturday she was pleasant again, a bit dopey, but relaxed. She must have asked me over thirty times, “Where’ve you been?” “What are you doing now?” “Where is it?”
For my own sanity I tried using identical responses, then tried varying my replies, but her questions remained the same. At least I got to hug her.
It’s the days when she fights that are the most difficult for me. I want to shake her out of it.
It’s Wednesday 17th September today. I’ve been trying to tie up some loose ends with regards to Mum’s affairs. I spoke to Broad Glade. who have emptied Mum’s room and have all her remaining belongings in storage. I was in school for the afternoon, so I drove by to collect the stuff on my way home. They asked kindly after Mum. I was surprised to see such a large sack full of her belongings still – I thought I had taken most of them the last time. It felt strangely like the end of another era – as if she had died and I was clearing her estate. I found myself in a bit of a trance, but glad to be getting on with inevitable tasks.
I came home for a cup of tea and to collect Mum’s clean clothes. Simon offered to look after the boys’ dinners, homework, showers etc. My head was throbbing – not the best frame of mind to go to see Mum, but it’s all I’ve got today.
I found her alone in the lounge listening to some country music. I should have left her there.
She seemed to be bothered by voices, hallucinations and questions and threw it all at me. If I could have taken it all away from her, I wouldn’t have minded, but she just became increasingly agitated.
“Where’ve you been?… No, it’s not…. You haven’t! Who are you?… You look like her, but you’re not! Go away.”
“I am Dawn and I won’t go away. I love you. And I’m staying here!” I challenged.
“You still here?… Go away! You’re not her!”
‘Lord give me strength.’ I screamed inside.
I told her that I wouldn’t go, that I’d come to see her and that I wanted her to stop acting like a mad old woman. Then she told me that I was dead. That they’d had my ‘thingy’ (funeral?) already. She didn’t seem to think it incongruous telling me that I was dead, so I don’t know why I argued, but I wanted to ‘snap her out of it’. I hated feeling so ineffectual and useless, unable to reach her or comfort her.
“Why are you still there?” she moaned.
“I’ll be back!” I said and went home.
I’m finding it tough being back at work. Two days a week are taking up more than half of my week in real time and much more in head-space. It will settle I’m sure, but I do seem to be running behind myself and catching myself coming in the opposite direction.
I still haven’t spoken to the Social Worker and have heard nothing from the consultant since the first review, over six weeks ago. I know it’s up to me to do the chasing.
Julia calls me from time to time to ask after Mum, but she won’t go again herself. Debbie is moving back to England this week, for good. Actually, not England, but a large cottage on mainland Orkney. I wonder how she’ll find it seeing Mum now? I hope Mum is having a good day when Debbie goes.
Mum had a good day on Sunday. Well, good from my perspective. I actually managed to get two and a half glasses of water and her medication down her. She said the coffee tasted ‘like poo’ and the nurse made some funny comment about NHS services in general… But she liked the water. She also let me accompany her to the loo, which felt like quite an honour after all her recent behaviour. She had a long wee, which must be a good sign of a certain hydration level, but it looked more like ‘cola’ in the bowl when I went to flush it. We talked a lot of nonsense about the boys, my job and the sunshine. Round we went with pleasantries, but then her body language changed and a deep frown set in. She looked so frightened and confirmed it:-
“I’m scared!” she confided.
I asked her what she was scared of, guessing the answer.
“You know what! Daddy.” She whispered, exasperated.
I didn’t know what to say for the best, but I hugged her tight and tried to reassure her that Daddy couldn’t physically hurt any of us any more. We went over this theme for some time and she tossed and turned and wavered in her understanding of the reality that I was presenting. She seemed to understand that Daddy had died and that she had his ashes in a brass case, but she still believed that he could and would hurt her. But having been married to this formidable, abusive and broken man for 32 years, it is understandable.
We prayed together and after some time she seemed visibly less anxious. It was long since time for me to be gone, but I clung on to the moments, feeling happy to be of some use this time.
The Social Worker came round to see me last Tuesday and made me more determined to speak up at the next review. The hospital have been observing Mum for over 8 weeks, watching her deteriorate – not eat or drink or take her medication – but they don’t seem to be doing anything proactive or even trying new drugs. Mammy seems to be becoming more and more obsessed by the hallucinations and monsters in her head and is angry and frightened and miserable – tormented really is the best word. They can’t send her to any other place in this state, but I want to know why they seem to be doing nothing and whether they do plan to do something.
I personally think that Mum is suffering from more than ordinary dementia, but I don’t know that. She appears psychotic or schizophrenic, but I know that these behaviours are also manifest in dementia. The nurses are very concerned for her and do not seem happy with the care plan themselves. We have to trust that the consultant does know more about dementia and available drugs than the rest of us, but I know more about Mum than they do. I feel that she is in too much distress and I feel responsible. I want to make it better.
Busy with all these things, as well as school, I also heard that an article I wrote over the Summer has been published in the October edition of the ‘Curate’s Diary’. It is the first thing I’ve ever had published, except school policies. Also, some bad news – Ofsted have announced they are coming next Tuesday for a one-day inspection. There is an ‘f’ in Ofsted! Obviously I have offered to be there to support my colleague. I then realised that I was expecting Debbie and family over that weekend and that Mum’s long-awaited review is the same day as the inspection.
Debbie came and went to see Mum, but didn’t get a better reception. She had gone with Olivia on Saturday and found Mum typically monstrous. Mum had scratched Debbie too. Despite my warnings, I think they were still shocked to see the way Mum has deteriorated these last two months.
On Monday I decided to do my job application before I went to school. As it is a temporary contract, I have to now apply formally for a permanent post. I don’t have time to think about whether I have the energy for all of this, but we need the money.
I also had to prepare for Mum’s review. Debbie and Monica are coming, so we are going in force.
On Tuesday it all went to plan – the Inspector came into our shared Year 1 class and as she left at 10:15, so did I. Apart from the buzz of nerves, there was a very positive and warm atmosphere throughout the school. I felt proud to be a part of it. We expect a good report.
Mum’s review was positive in that the consultant does have something that she wants to try. It is Haloperidol, a drug often used for schizophrenia. One of the difficulties at the moment is that Mum won’t take medication orally so that limits them to drugs that are available for intravenous injection. Hopefully, if this one calms the monsters in her head, then they might be able to get her eating and drinking again and she might consent to taking them orally. She will not consent to the injections, but part of having a ‘section’ means that they can force an injection. It isn’t really possible to force someone to swallow. It’s not ideal, but it is a move forward. So I am satisfied for now and will keep monitoring the situation. Monica and Debbie also made their thoughts and wishes known, so it was positive in that respect too. Sitting discussing Mum in this way got to me again and I couldn’t restrain the tears.
I had attempted to see Mum before the review, but she saw me coming and screamed at me to go away, so I went and did the laundry. Monica had a more successful attempt later. When her mum finally went into a home, they prescribed what Monica describes as a ‘Happy Pill’, which made a considerable difference to her angry, malicious behaviour. Monica clearly hopes that the Haloperidol will be a ‘Happy Pill’ for Avril, but it could have been Diazipam.
Anyhow, more anxiety over for now. We next await the RE Inspection at school and I await the interview for my job.
Three weeks later and the Haloperidol seems to be having a beneficial effect, Gradually Mum is mellowing again. They have found that she will take tablets orally if administered just as she is waking up. She is still different every time I see her, but each time a little better. I am so grateful for the positive changes in Mum. Maybe I’ll take Conor again next time. Last time I saw her she was much calmer, but talking such nonsense it was nearly impossible to understand anything. She seems to have renamed everybody and everything. She was ‘Aferbabby’ and I was ‘Ackally’, and I really cannot remember it all. But she was not laughing then (although I was).
Today she was laughing and giggling and busy trying to ‘sort things out’. I don’t tell her who I am any more, but I tell her what the boys have been up to and she tells me about ‘the to-do’ with the ‘people upstairs’ and all the things going on in her busy head. But she seemed so relaxed today. They said she’d had a cuppa just before I came and I persuaded her to drink a glass of water. She was talking to the water and trying to play the glass like a trumpet. Of course she got wet, but we were both in stitches.
She still has nonsense conversations with people in her head and is clearly very confused, but she doesn’t argue with me or attack me any more. It is great to enjoy each other’s company again.
I finished a tough half term at my school: the inspections both went very well and last week was a whole day of interviews for my job. There were four applicants including myself. I know my nerves got the better of me doing the teaching task and I bodged it terribly. I wouldn’t have hired me on that performance and I didn’t get the job.
For now I’m just thrilled for Mammy and I’m exhausted.