Monica seems to be coping well. When we got to Mum’s I introduced Monica to Kate, who I’m becoming very fond of. Mum was sleeping soundly in a super new lounge chair. The chair was on loan and certainly Mum looked very comfortable. One of the carers said she had managed to fall out of it, but maybe I misunderstood? Anyhow, we were tickling Mum, talking to her, kissing her, shaking her… but nothing would rouse her.
Monica and I had a chat, but I felt I’d cheated Monica somehow. Mum woke to be fed, but not enough to really acknowledge anyone around her. I was sad not to be able to get her walking again, but glad that the chair seems to be saving everyone the distress caused by Mum sliding onto the floor.
I saw Mum again today and she was much the same – very sleepy and away from the world. I feel like she has given up, but it may just be the natural result of the ‘lights all going out’ in the brain.
Apparently having a harness is frowned upon in homes – understandably seen as restraint and loss of freedom, so the super-chair has, I believe, been ordered instead. They seem to be doing their best to solve this problem.
In a couple of weeks the Social Worker will be doing a review of Mum’s situation and so far my own impression of Sunny Meadows is positive. I will meet him there on Thursday 15th – two days after Mum’s birthday.
Change is life. There was a sadness about the dining room today. Mum and Steven were at the table and Steven was cross. No Jude. Mum was fast asleep and slipping out of the wheel chair again. Steven was frustrated and didn’t want to eat his dinner. Jude came looking frazzled and worried, because she was late. They are so lovely; they kiss and declare their love for one another and she keeps him in line in a very kind way. She soothes him with a reminder that a gentleman is always polite and he need only say thank you for the kindness of others.
They are an inspiration, fighting valiantly this trial. Jude said that Steven was the first man to ever fly over the North Pole. She is worried that they might move Steven into the other part of the home – the Challenging Behaviour Unit, where Mammy was originally going to be. There was dignity and treasure in the sadness, but it all felt so heavy.
On Saturday Mum was already in the dining room, alone, sleeping. Her face looked terrible – a huge swelling bulged over her right eye and was quite black. There was some redness under the eye too, but it looked as if she had taken one neat bash.
I looked around with a question mark on my face to the carers around, but they were all busy. The Manager was there, doing the ‘meds’ and eventually I got her attention. She came over looking shocked at the sight of Mum, as if I had just whacked her myself. I asked what had happened, but she didn’t know. Nobody knew. “It wasn’t like that at breakfast” was all I got, but surely the person bringing Mum to the dining room must have noticed.
I asked for an ice-pack and some paracetamol, but they had no ice-packs – the best they could do was a wet flannel. A member of staff then brought two paracetamol capsules for Mum and knowing that Mum would chew the foul tasting things, I asked if she could have liquid paracetamol instead? Apparently not without a prescription. I watched her screw up her upper lip as she slowly chewed the capsules one by one. Fortunately she still had dinner left to wash away the nasty taste.
I wondered whether she could still feel pain – given that she can’t have made much of a fuss about whatever had hit her eye – so, as I held the wet flannel gently on her eye, I tried to pluck one of the bristles from her chin. She yelped. So she would have felt the bump to the eye! Successful experiment, but unsuccessful in removing the whisker. Apart from the slow chewing and breathing she was as if asleep and all felt quiet and lonely.
“No Steven today?” I asked a passing carer.
“No, he’s gone upstairs.” came the reply.
Their leaving us is a loss. As the carer said, once the funding bodies have made their decisions you have to comply otherwise you lose the funding. It seems strange that one of the most ‘with it’ of the residents gets moved to the CBU. I don’t know the full story, but again it seems to have been a decision made without the consent of the carer or the ‘service user’.
Monica sounds much better. The stitches have been removed and she goes for radio-therapy in a few weeks.
Simon came with me to see Mum today, for the first time in nearly two years.
She had birthday cards all around and seemed to respond a little as I read them all to her. She appeared uncomfortable again, though a bit more awake. She was able to give some possibly appropriate yes/no answers to questions and indicated that she was in pain. Her eye was very purple and still a little swollen, so I requested more paracetamol. Shortly afterwards a doctor introduced himself and said he would prescribe her something soluble. Good.
Simon and I tried to get Mum up and walking, but she wouldn’t open her eyes or stand today. I hate seeing Mum so distressed and tearful and be unable to help in any way. I kept wiping her tears and telling her that she is safe and loved and that all is well now, but I don’t know whether all is well. Maybe she still has a head full of monsters? Or questions and feelings that she wants to talk about and can’t? Maybe she is in terrible physical pain or discomfort inside? I just do not know. I fed Mum whilst Simon rubbed her back and imitated a goldfish, like a parent feeding a toddler. Mum still enjoys her food and it does seem to be always hot, tasty and nutritious.
I asked about popping up to visit Jude and Steven, but they told me I shouldn’t go up there as the residents can be unpredictable and violent. They didn’t say that when I went to look around initially, with a view to putting Mum there.
Simon was glad to have seen Mum again. Obviously he noticed a huge change in her.
Today I had the review at Sunny Meadows with the Social Worker and one of the senior nurses. The Social Worker outlined the purpose of the meeting, which was to review Mum’s care and make sure that we are all happy with the situation and, if all is well, for him to close the case as far as he is concerned.
The nurse representing Sunny Meadows said that they were satisfied that they could provide for Mum’s needs and I expressed how happy I was that they seemed to be addressing the challenges well. I mentioned the chair, which I understood to be on order and asked if it would be possible for Mum to have a bedroom on the ground floor if one were to become available. They promised to look into it, as it would make Mum’s afternoon naps less isolated. I mentioned the mysterious eye too, with no response. I am thankful that Sunny Meadows believe they are willing and able to meet Mum’s needs.
The Social Worker has also reassured me that I can call on him if normal channels of communication fail and I need help. I am grateful for the Social Worker’s help over these two years. He has always had Mum’s best interest at heart.
We then went to see Mum and her now rich-purple-and-yellow eye. Again her eyes were closed but I did get some sweet smiles.
I sometimes think about how I will feel when she does die. Part of me will be happy for her to be free of the limitations and frustrations of her physical disability and mind. I will miss her. It won’t be like missing a mum – I dealt with that a long time ago – it will be like losing a very treasured part of my life. I feel such tenderness towards her nowadays.
She will go at the time she is given and I believe we will get the grace to deal with her loss.