A week later, back from Ireland, I learned that the ward dentist had referred Mum to the Maxillofacial Unit at the West Hospital. I asked Gold Acre to inform me of the date, so that I can go and hear for myself what the doctors have to say.
I finally took Monica out for her birthday treat, then Monica came with me to see Mum. We decided to hoist her out of her bucket chair with a view to a stroll in the sunshine. I was horrified at how unstable Mum seemed to have become. There is no way that she can get out of that chair alone. It took time and a large dollop of encouragement to keep her standing without wobbling. We all but dragged her to the garden, but once outdoors she was off like one of those squash balls in slow motion, bouncing into all the walls. Apart from toppling the bird table, she had fun and enjoyed the sunshine and the breeze. I do need to ask why Mum spends so much time in that chair.
The following day I phoned Gold Acre and found the ward manager very calming and sympathetic. He asked me if I had any concerns to which I replied that I would welcome an opportunity to discuss Mum’s ‘care-plan’, as I have no idea what medication she is on currently and ‘I do have some issues’. I imagine he was groaning inwardly, but he remained very encouraging. He said that Mum’s consultant was ‘on holiday’, but that on his return I would be invited to the weekly review. I did express some concerns about her mouth, hygiene and her ‘triangular bucket’ chair.
This Friday, three weeks after the ward dentist saw Mum, I have been given an appointment date for the Maxillofacial Unit – 20th May. That is satisfyingly sooner than I had anticipated.
Before a trip to London, I finally contacted Mum’s friend Wendy. When I next went to Mum’s I spotted a bag of large chocolate buttons and said, “has Wendy been to see you?” and she said “Yes, yes she did.” It is unusual now for Mum to actually say a complete sentence, even one as short as that, so Wendy must have made an impression.
After getting Mum suitably animated with Gene Vincent and Kenny Rogers, I took her hands and, with a “shall we dance, Madam?” managed to coax her out of the bucket chair. Dancing was a bit strange – more like a clumsy smooch around, but Mum seemed happy to be up. She does bump into everything when left to her own devices, so maybe that is why they prefer to keep her sitting – for health and safety reasons.
Julia has decided that she does not want to see her sister again. She wants to ‘remember the old Av’. She admitted that her angle might seem selfish and I tried to give her a different perspective. But…
I think that some of my concerns were heard, because on Friday the ‘bucket-chair’ was gone and an ordinary chair in its place. Of course that meant that Mum was wandering around the corridors, getting lost in unfamiliar territory and bumping into everything.
I must write down some questions for tomorrow’s meeting with the new consultant. Care Plan? Medications? Section? Daily routine/hygiene? Meals? Behaviour? Exercise and Stimulation…?
So I got my list of questions out… Medication was a straightforward one. She’s still on the epilepsy control (Tegretol), the anti-depressant (Trazodone) and the anti-psychotic (Haloperidol). The latter he has already reduced from 3mg to 1mg daily and intends to drop that one altogether. If the hallucinations and distress come back, he plans to try ordinary anti-dementia type drugs like the Aricept. He said it all so matter-of-fact. I was sort of anticipating that this would happen with the Haloperidol, but I didn’t expect the hospital to do it after spending all this time finding drugs to stabilise her. But I didn’t say any of that, because I don’t think of the right words to go with my thoughts and feelings at the same time. I don’t want her to deteriorate again now she’s finally content (-ish).
He said that her progress is reviewed daily by the staff nurse and three times a week more officially. He does the rounds weekly, but has been away for a month. He mentioned the growth in her mouth and that he had noticed some cellulite on her leg, for which he’d just started her on antibiotics. He asked if Mum had ever had a firm diagnosis and, as I tried to explain, he too said how it was ‘all just academic’. We discussed Mum’s deterioration since 1997 and whether any of us offspring would like to be tested to know if we have that specific gene to cause early onset Alzheimer’s…? He thinks that Mum has both Alzheimer’s and a type of vascular dementia, because she presents such big mood swings and the psychosis. He said that Mum has been taken off the ‘Section’ so I asked whether I could now take her out?
“You could always have taken her out. You only needed the doctor’s permission!” was his astonishing reply.
I don’t know where I could take her now though. It is a scary prospect and I couldn’t do it alone. She is a bit more mobile again now that she is not perched in the ‘bucket’ for hours.
He also said that Gold Acre is ‘a hospital unit for complex needs and behaviour issues’ and that their job is to stabilise patients ready to send them into more permanent home settings. This I did know, but I had put it to the back of my mind, since the last assessment was that Mum would continue to ‘need at least the same level of care as at St Peter’s Unit’. He said that he would expect Mum to be able to move on in a few months and asked me if I had somewhere in mind? I do not have a clue. How could I know? She isn’t ready for an ordinary nursing home, even one dementia registered. He reassured me that a Social Worker will get involved again when the hospital decide to send her off and that they would all help to place her appropriately.
I tried to ask about daily routines, stimulation and care-plan, but that clearly was not his expertise so he referred me to Mum’s key worker who is…we don’t know? I must find out and run the rest by them. The consultant has given me plenty to think about.
Mum is becoming tearful and unstable again – possibly the result of a reduction in medication? Today I met her shuffling the corridor with that look of confusion and rage that she had before.
The nurse said “Look, here’s your daughter, come to see you!”
Mum glowered and said “Who are you?”
She looked angry and started to scream, mimicking Betty (another resident). I took her back to her room away from the noise and closed the door. I asked if I could have a hug and she said that she didn’t have any.
“No hugs for me?” I questioned
“Well I suppose…”
I forced her arms around me and cooed and encouraged. She started to cry and said,
“I want to die…Well, you can’t… I want to kill myself…No, you can’t…”
I just held her, prayed and told her how loved she was. Then I creamed her face, so that she would smell like Mammy again and we both sang and laughed, whilst I fed her lunch. Someone had tied her hair back in double ponytails and she looked very pretty.
When I made to leave, she playfully said, “No, don’t go!” We were both smiling and bouncy when I left.
I was nervous about them taking her off the Haloperidol, but this time she seemed fine. She had had her nails painted and was wandering the corridors, singing to herself. She was playful with her gabbling and entertaining the ‘babbies’. The hallucinations are much stronger again, but seem positive. She is often questioning the babbies and telling them off. “I’ll kill you!” was a more extreme reaction, but the babbies are never far away. She was making creepy sounds and faces to a ‘rhyme’ and then building it up to a scary finale to make them jump. She was clearly enjoying herself. She seems to understands the majority of what I say, but unfortunately I no longer understand most of her replies. It doesn’t trouble me, though I would love to know what she is trying to say.
Before leaving I went to check about Wednesday’s Maxillofacial appointment. We discussed how to transport Mum and concluded that a wheelchair and taxi would be easiest all round and I will meet them there.