It’s Tuesday and I got a message from the boss at Gold Acre, saying not to worry – although you do – but would I please call her. She said she was completing a check-list for Mum, ‘for future care’ needs, of which I will get a copy. She reiterated what the consultant had said – that she has settled well and that when she does become agitated it is predictable – e.g.: noise issues increase her agitation. She was informing me, she said, because Gold Acre is ‘a challenging behaviour unit’ and Mum apparently does not qualify as challenging. I mentioned my anxiety about taking Mum off the Haloperidol and she agreed. She said that they had taken her off and within 24 hours had noticed such a change that they had put her straight back on it.
She said that Mum is one of those who can join in with activities and does. They have activities two mornings a week apparently – I must always come on the wrong mornings.
I arrived a little early at the West Hospital, realising that I was nervous for my little Mammy venturing out into the unknown today. I got myself a coffee and observed, feeling quite transparent myself and somewhat spaced out. I spotted a big taxi with a Mammy in it and a carer, who used to work at West Hospital, began pushing the wheelchair. Mum had a face like drugged thunder. He said that she had been ‘difficult’ and “quite vocal this morning”, but I learned later that she had been ‘aggressive’ and had been given a shot of Lorazepam to make her more compliant.
In the Maxillofacial Unit I was working very hard to cheer Mum up and by the time the nurse came she was smiling sweetly. They sent us to their x ray department with a doubt in all our minds as to whether they would be able to do it, but the team were so friendly and good humoured – it was a delight to be there. They were able to do it with Mum sitting, so I fled. I didn’t want to be around those rays myself. They took her back in for a second x-ray, then we went back to see the doctor.
He was from Ghana and spoke almost exclusively to the chap that had brought Mum from Gold Acre, rather than to Mum or me. He said that the ‘growth’ was a cyst and that he would want to completely remove it, under general anaesthetic, as soon as possible. He used the x-ray to show how the cyst had pushed back the bones and parted the front teeth. It is incredible how a growth could have the force to move the teeth so much in such a short time span, especially when you consider how long kids have to wear a brace to straighten crooked teeth. He went on to say that, because Mum was not in a position to give her own consent, he would need the approval of one other doctor before he could go ahead. I asked whether the person with ‘welfare power of attorney’ could make that decision, but apparently not. He said that if two doctors made a decision that was contested by the person with welfare power of attorney, the latter would not win. It is not worth the paper it is written on in court, he says. I was shocked and fascinated. Not that I can imagine wanting to take a doctor to court. I am sure that medical predisposition is to preserve life, but I can imagine issues about the quality of a person’s life versus medical intervention arising…
I took the boys to see Mum on Wednesday, as they had not seen her since Christmas. She was wet and smelly when I got her out of the reinstated bucket chair. The boys were ‘bored’, but…that’s life. We dropped in on Monica on the way home too – the boys were certainly not bored there.
Mum’s cousin Mike and his wife, Val came with their daughter, the other Dawn. We had lunch, then they followed me in their car to Gold Acre. Mum was in good form again, a bit grumpy initially, but we soon had her laughing. We sat outside and baked in the sun together, enjoying one another’s company.
I received a copy of that ‘NHS Continuing Healthcare Needs Checklist’ yesterday. I was surprised by some of the assessments that they have made. For example, they have three categories of need – “A – meets the described need. B- borderline. C- clearly does not meet the described need”. One category of need reads, “Continence care is problematic and requires timely intervention.” they scored that ‘C’ – no need. But she wears pads all the time and is often wet even with them. The other contentious one for me reads, “Mood disturbances or anxiety symptoms or periods of distress that have a severe impact on the individual’s health and/or well being.” They gave that one a ‘C’ too. We all know that Mum certainly has huge periods of distress. Maybe they think they have her all under control now? I don’t. She got ‘C’s (no needs) for ‘mobility’, ‘nutrition’, ‘skin integrity’, ‘breathing’ and ‘Altered States of Consciousness’. Mobility and the latter I would also question. She only got ‘A’s for two categories of need – Cognition and Communication, the latter which reads, “Unable to reliably communicate their needs at any time and in any way, even when all practical steps to do so have been taken.” That made me feel very tearful.
The person sending the checklist did write that “when we get involved with a community nurse assessor and social worker we will meet with yourself and go through a more in-depth checklist.” So it’s not all set in stone yet. I just worry that they are anxious to pass her on before she is ready.
Last visit to Mum was very interesting. She was in her room after lunch, although a care-worker rushed in to assure me that she had ‘only just come back to her room…she’s not in the bucket…’ Anyway, I found Mum there chatting and crying happy tears with another resident. A nurse then came to remove the other chap and put Mum’s music on. Mum continued talking and I was struck by how much more alert she seemed to be. Several times she looked directly at me, making good eye contact and smiling. There were also more English words expressed and the hummed tunes were recognisable. She was entertaining ‘the babbies’ again with ‘Frere Jacques’, Jingle Bells and some with ‘make you jump’ endings. I realised that she has not looked like Avril for a long time – like ‘the lights are on, but there’s nobody home’. This time there was somebody home.
I passed a comment to a nurse, who said that Mum’s medication had been increased (the Carbomazapine) because she had been becoming more shaky. I think that might explain the improvement in Mum’s alertness too. That medication is to keep the epilepsy under control, but it is also used against bipolar disorders and schizophrenia.
The last couple of weeks finds Mum much the same, though I’m finding the visits more difficult myself. Most of the time she is talking to herself in a way which makes me completely redundant. She doesn’t even answer me with the same degree of clarity that she she does herself.
“Avril? Yes? Diddle dee da bee her? No, I don’t think so. Oh, I see…”
But with me, there is no such level of conversation. Some days she is more shaky, others more alert. She is still very emotional, but not as angry or depressed.
In my recent dreams Mum is constantly with me and I am aware that others do not think that she has any needs. I awake feeling even more protective of her than usual. I have been thinking about all the issues a lot – her past, present and future and how best to meet her needs. Also I have been reading the book that Mum’s cousin has written. In there I learned a little more about the Foster family (Mum’s mum) and the world into which she was born. War rations were still a severe feature until Mum was eight years old and then an explosion of experimentation, ‘Rock n’ Roll’ and the ‘sixties’ (into which Debbie and I were born).
Today, as I was getting ready to go to see Mum, the hospital phoned to say that she had fallen.
She seemed more dozy than usual when I arrived, but she livened up throughout the visit. They had boxed her into the chair by putting her feet up to prevent her falling again. She has a large swelling over her left eye and a big bruise down the side of the right cheek and on her right upper jaw. They said that no-one saw what happened, they just found her on the floor. I wonder whether she had one of her ‘fainting fits’ again, but they have not been mentioned. The doctors gave her a thorough check over apparently and are satisfied. I think she is going to have two real shiners over the next couple of days. We enjoyed one another more today and as we listened to Elvis she kept clapping and telling him how much she loves him.