Before Mum was to go today, I decided to confront her about the Day Centre.
“I do like it!” she said.
When I explained how I saw her behaviour, she tried to explain how ‘it’s the suddenness’ of my leaving that bothers her; that I do things ‘too quickly’ and then I’m ‘gone’. I suppose that with not having a memory backup, everything seems sudden and, simultaneously, everything goes on forever? Life must be very unpredictable for her. She seemed better prepared today though, so maybe I should go back to telling her what’s happening next, to give her more time to respond. I used to do that, but it seemed that I was just giving her more time to worry, but things change, so I will too.
At the Carers’ group last night the St. Peter’s Wing were doing their presentation. I felt slightly overwhelmed by the focus on drugs – drugs for the Alzheimer’s disease, for sleep, for depression, for anxiety, for the bowels, drugs for this, that and everything – and also the emphasis on test scores. Mum scored 9 on her test, but she was in a strange place, with a doctor whose English was not very clear, being watched and put under pressure to perform. As a teacher, I know that these conditions are not optimal for anyone. So, because she scored a severe ‘below 11’, she’s almost written off. Last night I took the opportunity to ask the Consultant again about therapy and why I thought that if I supplied some of the facts about Mum’s past, perhaps a therapist could be of help to Mum in ‘unblocking’ stuff. But I still didn’t get a clear response.
Our Social Worker came again today, to see how things are going. I have given her Debbie’s phone number too, as, having Welfare Power of Attorney, the decision of ‘where it is best for Mum to live’ lies ultimately with her. She said there is a place available now at ‘Broad Glade’ and, if I were desperate, Mum would be considered. Believing that the place was full with a waiting-list, the choice came as a sudden shock. I don’t feel I have the right to make this decision alone. I don’t know who I’m supposed to put first. She won’t rush me and she listened to all of my ramblings. It’s good to know that if I do get desperate, they can step in. Please God that I don’t become desperate, but that things will fall naturally into place at the allotted time and I will know peace.
At ‘Take-a-Break’ again I witnessed more of Mum’s ‘attractiveness to men. I was aware of two new people having joined the group some weeks ago, but I hadn’t had the pleasure of speaking with them. The man was staring at Mum and asked if we were sisters. Mum didn’t even acknowledge his remark, but sat there serenely smiling. Then he said to me,
“She is very pretty, I quite fancy her.”
“And you are?” I asked, somewhat amused by his fixation.
He gave his name and I looked enquiringly at the lady, who smiled, “I’m his wife!”
We were celebrating another birthday. It makes me sad to see Mum – 25 years younger than the birthday girl – so much less able to communicate or function sociably, yet somehow enigmatic for the gentlemen. I presume that the gentleman flirting was the one being cared for by his wife and I wonder how much more difficult it must be to care for a spouse than a parent.
I had arranged to visit the even-more-local care-home, that our Social Worker had told me is considering registering for dementia patients. I had a good chat with the manager, who has been working there for 14 years and has her own mother-in-law living there (which is either a high recommendation or at least expedient). They have between 12 and 14 ‘residents’, but the youngest is already 18 years older than Mum. They do seem very homely and the lady seems to take pride in the place and love the residents. I intend to ask our Social Worker to plan Mum’s next respite there, in the new year and see how well she would fit in. It would be good if Debbie could come and look at these places too and discuss the options with me.
Mum says she wants a diary again. Debbie and Mum always kept a diary. I think I’ll get one for 2008 and we can fill it in together, at teatime perhaps.
I think I’ll also do a ‘This Is Your Life’ style album for Mum – an idea from the Occupational Therapist. It could be very helpful for friends and other volunteers and carers to see something more personal about her and give them more of an anchor for chat and discussion.
This morning Mum had two of her funny turns. It prompted me to phone the Neurophysiology Dept. to find out when we can discuss the results of the sleep-deprived EEG, that she had two months ago.
It seems I have slipped up somehow. Apparently Mum had a ‘missed appointment on 3rd November. It was not in my diary and they had not sent us a letter, but I did find it written in the notes that I had made when we last visited earlier in the summer. Hopefully we will be able to reschedule?
These ‘fits’, or whatever they are, do add to my stress, because I feel nervous to leave her alone for even a few minutes, lest she hurts herself. I saw the first one begin and was able to take the cup from her hand and hold her steady until she had finished, but was then afraid to leave the room. After the second ‘fit’, I put her in the big armchair, with the TV for company and went to have my shower. It struck me this morning that the majority of ‘fits’ have been directly after breakfast, and a couple have even been before breakfast. Is it the suddenness of going from horizontal to vertical that triggers them? Is it a change of blood sugar levels? I must ask the consultant, if they give us a hearing.
I thought it best to stay indoors this morning, so we made a start on the ‘This is Your Life’ folder. I found a pile of good photographs to illustrate the major stages of Mum’s life, but I realised how patchy is my own actual knowledge of specifics – especially dates and place-names in her life. I am sure I will be able to find out this information.
The ‘Age Concern’ volunteer has taken Mum to a garden-centre for a couple of hours – she is superb with Mum. She is interesting and interested and manages to think of purposeful excursions. This week the purpose is for Mum to get some Christmas cards and to see the decorations. The volunteer friend always says that she has had a lovely day out too.
On Friday we go to Marbella, Spain, to stay with an old University friend of mine. I am so much looking forward to it, but as always dreading Mum’s disappointment, when she realises that we are going away without her.
This morning when I went to wake Mum, she was clearly still in a distressing dream. I barged in with my “Wakey, Wakey, rise and shine”, but Mum was sobbing and shrinking under the quilt, crying, “No, please don’t. Please! No!” I was concerned and curious, as she obviously wasn’t fully awake yet. I stroked her head and told her she was having a bad dream. She continued sobbing and saying, “Mum!” Later, when she was more awake I asked her about it and she said that her mum was very angry with her in the dream. Apparently she was never angry or nasty, ‘in real life’. She couldn’t recall why she had been angry with her or how she was expressing it, but it was clearly causing her a lot of distress.
I suggested that maybe Mum was angry with herself (as she’s often pulling herself down with phrases like, “You stupid woman. You silly thing!”) She agreed that she was angry with herself and said ‘it’s like having a big hole in my head’.
I guess it might be just like that. I told her that I see the disease in her brain like a set of fairy lights – every so often one blows and that bit goes dark. I think that maybe the little ‘fits’ are manifestations, or causes, of those blown bulbs and there are dark patches in her brain where once there was clarity. She likes my analogy and says it feels just like that.
Anyway I thought it would be appropriate to go to the memorial garden today and take some flowers. We did get the engraved marble vase, but haven’t been back there since we erected it in August. On the way to the garden, I asked her to describe her mother and she kept repeating that she “was a lady – a gentle lady!”
We arranged the flowers, said ‘The Lord’s Prayer’ together and thanked her mum for being a gentle mum. She said she couldn’t remember anything about her dad at all