Yesterday Mum was sleeping in the chair, so I sorted her laundry and went back to wake her up, but I couldn’t. She was smiling and twitching and occasionally saying “yes…”, but her eyes remained closed. She managed to drink coffee, eat custard creams and enjoy a massage, all with her eyes shut. There was going to be no other meaningful interaction, other than stroking her hand and kisses, and I felt that she might prefer to be undisturbed, so after an hour I went to speak to the nurse. I had long since meant to ask about her medication – since the time I pretended to drink the ‘orange medicine’ and they looked a bit worried when I acted dopey afterwards. I wondered why she was so dozy now. The orange medicine was the Trazodone (100mg) three times a day. No wonder she is sleepy. The Haloperidol is just once a day and she also takes Carbomazapine twice a day. Apparently these are all to control her mood – mind, agitation etc. There is still no date for the Continuing-Healthcare Assessment, which needs to be done before we know what can happen next.
Yesterday I hit a major low. I have been finding communication with Simon a cause of immense frustration since the end of November (when I told him I was pregnant). I have been trying to change this, but fear I have just pushed him further away. I am finding it difficult to sleep with ear-ache and blocked, streaming nose and racing mind. I think about these last two years: I have lost three pregnancies, two friends, a job, struggled with my Mum and feel I’m losing control of her care – having lost her too, in a substantial way – struggling with the uncertainty of her future and mine and adjusting to this new life in Nottingham. Last, but by no means least, my Isabelle’s recent challenge has also rocked my boat. She has had breast cancer, has had a mastectomy and is now on the road to recovery. Again I feel so grateful to live in the UK with a great NHS provision available.
Taking an inventory of all this loss was illuminating. I think I need to be a little kinder on myself and on Simon. We both need to learn to have a little more fun together and enjoy what we have whilst we still have it.
Anyway, Mum was in much better form on Sunday, and was contentedly gabbling away, making up what sounds like fun little rhymes with sounds.
I have discovered that Haloperidol is an old-style anti psychotic. It is commonly used in hospitals, to control agitation and hallucinations – symptoms of schizophrenia. It blocks the production of dopamine and has a sedative quality. But its value is questioned by those researching Alzheimer’s Disease. Apparently ‘care homes’ usually take their clients off Haloperidol as soon as possible. It is thought to produce a severe stoop and a general comatosed, dependent state. The Carbomazapine is Tegretol to control the epilepsy.
Mum’s mood has definitely improved since she began to take the Haloperidol and she appears to be much less tormented by hallucinations and psychotic behaviour. But yes, she also appears stooped and pretty well comatosed much of the time.
I felt nearly human enough to venture back to see Mum today. She was sleeping when I arrived, so I sorted the laundry before waking her. She was quite disoriented and kept dropping the biscuit that she’d been given, whilst I held the cup of tea. She was also very jerky – huge sudden involuntary ‘starts’ that she seemed completely unaware of. It was alarming. The cup of tea went down very well though and then she started singing. It was hilarious. There is no way I can convey the experience as I beheld it. She was talking to someone invisible to me and then began to ramble – “Wee lee dee baba kaka da, wee dee wee dee dada moko daba, POP!” Then she would laugh and say “What was that?… I’m being silly… You dabada!… Shall I go again? All right then – Wee la ba da ba…”
I said, “I think you’ve gone daft!”
And she whooped and clapped with delight, “Yeah!”
To the annoyance of a frail old lady next to me she continued for the whole hour, but was clearly having such a wonderful time herself. Eventually she stood up to entertain more fully and began to sing even louder, but this time the sounds came to the vague tunes of “Old MacDonald” and “Jingle bells”. It is difficult for me to do justice to the poetry, but she clearly knew what she was singing. Once she stumbled over the flow and started shouting, “Bugger, Bugger…” until I said, “Mother!?” and she laughed, saying that she had forgotten.
“Am I stupid?” she asked.
“No, but daft as a brush and twice as hairy!” I replied, to which again she rejoiced with cheers and laughter. She looked and sounded happily drunk.
It must have been quite a surreal sight, me alternating between massaging Mum’s back and plucking the beard out of her chin; Mum laughing ecstatically and chanting her rhymes; and another lady leaning over me, kissing my head and telling the wall that I was her grandson.
I’m having one of those mornings of racing morbid thoughts:- If it’s all down to genes, I’ll either get a heart-attack, cancer or dementia. But as Josh once said, “We have to die of something. These health freaks will feel a bit daft in hospital when they are old and dying of nothing!”
I am trying to justify my existence again, busy with various projects and people, but because I am not earning an income, I feel wrong, restless and my confidence and self-esteem are very low. An important project for me at the moment is to sort Mum out, but I am finding this waiting process very frustrating.
I feel a bit more cheerful now, after a call from my lovely Isabelle. Her dressing is removed and her wound is healing well. She also has permission to drive again, which will be a great relief. Meanwhile the sun is beaming out through the January rain and a little snow-drop has appeared in the garden. I’ve been doing some digging recently and I am so much looking forward to the delight of Spring splendour and itching to get some fruit and vegetables planted.
I got a call from the Social Worker on Wednesday morning to invite me to the Multi-Disciplinary Meeting (MDM), which was to take place that morning at 11am. I wished they had given me more notice as I had already arranged to spend our anniversary with my husband.
I told the Social Worker that I was nervous about what would happen to Mum if the home she goes to should take her off the Haloperidol and her hallucinations and torment should return. He said that he’d seen her on Tuesday and she was looking very dishevelled and distressed. She had looked greasy and unkempt on Monday too, but I didn’t ask anybody why, as she had been in such good humour.
The Social Worker phoned me back later with feedback from the meeting. It was much more inconclusive than I had hoped. Apparently two nurses had done the ‘Continuing Care Assessment’ and had agreed that Mum was not at all ready to be discharged. They felt that the only place suitable to meet Mum’s needs would be the ‘Gold Acre’, which I remember being mentioned to me last Summer. What I hadn’t realised was that Mum’s dementia doctor had put in a recommendation for Mum to go to the ‘Gold Acre’ weeks ago, but that the staff at Gold Acre had refused her on the grounds that they didn’t agree that she needed their level of care. Apparently, ‘Gold Acre’ is a brand new NHS unit, offering ‘excellent care’, but their budget is restricted and so they are not able to employ enough qualified staff to run to capacity. It also seems that they do their own independent assessments of appellants and, strangely, do not consult with any other professionals or interested parties. The nurses doing the assessment on Wednesday, on the other hand, are of the opinion that Mum will continue to need at least the same level of care that she has had in hospital and that any other care home would not be able to cope with her needs and therefore she could end up being readmitted to hospital. That is my concern too.
I was surprised to learn that Mum’s dementia doctor was not at the MDM either, so we will now have to wait whilst she reads the report and makes her response. The nursing team also recommended that Mum’s medication be reconsidered and that Mum’s doctor should reapply to Gold Acre for a place.
The Social Worker said that Mum was even more distressed and “vocal” (shouting and angry) on Wednesday and that she seemed to be in a very tormented state again. He said that she was still unwashed, because apparently she is being very uncooperative with the staff in the mornings.
I have arranged to see Mum’s dementia doctor at her earliest convenience to discuss these issues properly, but that meeting may not be for another four weeks.
Anyway, I’m going to see Mum again myself and see if I can make any more sense of the situation.
Well, she was fine with me if a little dopey again. She was smiling, singing her own version of ‘Daisy, Daisy’ and copying some of the voices and sounds around her. She was well laid back on the sofa and still very twitchy. Occasionally she would lift herself up to a sitting position and then lower herself back down again – like a version of ‘sit-ups’.
She greatly enjoyed some chocolate and we managed a sort of a conversation – I asked many questions and she made various responses. She thinks that Wendy has been to visit her, but not Julia or Monica. She can’t be bothered to do the gardening any more and doesn’t miss Orkney. She cannot remember much about her mum or dad, but thinks that Julia was bossy. Being a mum was sometimes really lovely, but sometimes ‘Brrrrr!’ She’d like to go and look at the Spring flowers when they’re out in bloom, but she is a ‘big baby’, even though she thinks she is not big.
I asked a member of staff about the greasy hair, wondering whether her fear of water had returned. Apparently this week, the nurse said, Mum has been distressed, difficult to handle and shouting in the mornings, but she is going to ask the night staff if they’ll bathe her this evening. She was unsure, but believes that the doctor may have already made some changes to her medication.