Visiting

Visit to mum on the 19th May 2013
I spent most of the weekend working in Bond Street, but managed to get away to visit at 3pm, getting to Mum's with some red roses - the favourite flower that Dad liked to give Mum at 3.50. She looked really well today, but told me that she'd nearly got out of bed and was just found in time, but was very annoyed as the staff just pulled her back - she'd been wanting to get to her sock and tights draw in order to tidy them up, and perhaps she'd started to already! She said that she'd asked her carer who came in first thing in the morning: 'Where am I' - she'd received the inevitable reply - you're in The Home - it's the classic joke - when someone is lost - you just tell them where they are - the one piece of information that they don't need as it's completely obvious. Later I had a chance to ask mum where she'd like to be and she said by a railway near the railway bridge, clearly some memory from the past.
I took her for a push around the garden in her wheelchair it was nice and we were followed by the cat. When we got back we had time for a quick Gin & Martini and as she sat back glass in hand, she said how much good I did her, and thank god I did. She'd remembered last weekend and the lovely food. Wow I'm lucky!
Mum complained that some of the staff try to play tricks on them with who's where and what and that it's not nice! - I think I need to talk to them about dementia training.

Visit to mum on the 12th May 2013
In celebration of mum's 87th Birthday on the 9th.  I went round to the care home first, and had arranged that I take her out to a restaurant with a view of the river - her beloved Thames. This is really in memory of many times we'd sat at a restaurant in the evening during a London summer. I always find it hard to decide whether to arrange these things. If mum feel's confused or disoriented or doesn't know where she is, I feel that I'm being selfish and doing it for myself.  Apart from realising she wasn't wearing her best clothes and no lipstick! - she was happy, and as we got in the cab the friendly taxi driver put her at ease, and she loved just looking out the window. Then at the restaurant the view was great. My mum has this problem with swallowing ever since her brain surgery and so we have to be very careful she doesn't choke, at the same time, the experience of getting away from (always mashed!) nursing home food, some different wine, and some well cooked food is just great for her. She tucked in and apart from a couple of choking moments (she insists on ignoring any risks if possible) was fine and really enjoyed it. I love her spirit when she does these things, but I still wished she could imagine taking more care! We handed her back to the taxi man, and she waved us away, we pretended she was the queen! - the regal wave. It was a lovely lunch.

Visit to Mum on the 29^th March 2013

This visit hit all of the right notes and everything worked! From the moment when I put the bird feed on the table , we had a few pigeons and then a couple of tits coming to feed.  I read some nonsense poems that she really enjoyed – it’s becoming easier to guess what she’ll like – anything with a strong connection to her own interests, anything about  father or mother figures that she would enjoy.

She had a sort of shaggy dog story to tell me, she’d remembered that my one of my dad’s favourite drinks was green chartreuse (not sure that it was)  and she decided to buy him some, so she phoned up waitrose, and asked to buy three  bottles(!) but the sales assistant didn’t really understand what she was talking about. Then through some odd connections what turned up was a games table – and interestingly enough I noticed a new games table in one of rooms. Funny how these things happen. One of the carers mentioned how my mum loves to chair the ‘user meetings’ in the home. They were talking about the food and my mother said that yes it was very good – but then she said sometimes it’s just too chewy. The nursing staff looked at her – and said really!? – because she has ALL of her food mashed up! They challenged her, and she retreated a little. Somehow the vivid memory of something disconnecting with a recent experience! Mum then also told me how she’d had something happen about going outside and it was like a day dream – and then she said that it was actually a hallucination. The first time she’d said this, but her description of recent fictional events really do have this quality to them she’s entirely convinced that they’re real. So interesting that she may be now experiencing this as a particular mental state.



19^th January 2013

Mum was looking really well in her face today. Hair brushed, wearing her new clothes, smiling and delighted to see me.

She told me that she’s been planning four different holidays. So I asked her what they were, a little unsure whether I’d get an answer, but she said that she wanted to go to the West Country for one holiday, and that she also wanted to go on a cruise in Vienna – it all sounded good actually. Read some more funny poetry with the usual good results.. but some need choosing in advance! Although I think the sound of the words in itself is good. Mum said something about her father – being in touch recently. My mum said that she thinks that some people in the home don’t like Family. I asked her what she meant – she said that well some of them are jealous of her family. I think she meant that now when she mentions her parents, and the carers remind her how they must be either dead or very old now, that she simply goes back inside to her own thoughts and knows that they still live on inside her. To me this state of affairs seems sensible.

 12^th January 2013. Visit to Mum.  She almost didn’t seem to recognise me, but then wasn’t wearing her glasses. When I looked in her bag she had another person’s glasses – they seem to play pass the glasses on an hourly basis. I swapped her glasses over for the near sighted ones and then when I showed her an old kitchen tile that she used to have she recognised what it was and enjoyed seeing these old pictures again. She was very happy and smiley again, which was great, she’s really able to laugh about so many things with very little prompting.

She told me that she’d been collecting nursery rhymes in her head, and that there were really a large number that were about mice, so I asked for an example, and she sang me ‘Pussy Cat, Pussy Cat where did you go…’ it was very sweet, and we then spent some time recalling different nursery rhymes including the one she used to sing to us as kids.. I think our favourite was Golden Slumbers. I found some of the nursery rhymes on Spotify and played them to her – she really loved them and sang along to them where she could. The whole act of remembering seemed good to her. Several times through the visit and then specifically at the end she said that she wanted me to see the three mirrors that ‘Grandfather’ had made ( I couldn’t say if this was her grandfather or her father). She became quite insistent that she wanted to show me before I left, and made to get up to go downstairs to show me them in the garage. There is no downstairs and no garage and she’s not walked for 2 years+, so I’m afraid I just had to say that I didn’t have time. That’s the first time that she’s done that, really taken me to a point of wanting to do an action that’s not real.

5^th June 2012.

The Long Diamond Jubilee weekend. I saw mum on the Saturday and then tripped back in on the Tuesday as well – today. She didn’t seem so good today really, it’s that ever present battiness that seems to be coming on. The formula question of how are you, and in my case trying to pretend that she knows that I’ve taken Anna skating, but at the same time not so clear as to who I really am or what I’ve actually been doing. The Gin & Dubonnet was as good as ever – a new bottle of gin added to the stores, the peanuts on the bird table attracting lots of pigeons, and squirrels and a Jay – so all of that was working too.  Last time she asked me if she thought her father felt guilty about her mother’s death – she died 6 years after he did in the early 1980s. Today she said that she wanted to show me the garage. She seems to think that there’s an alternative garage room that she goes to, I asked her what was the difference with her room and she said it was the garage doors. (of course!).  There have been some good things lately, the home have told me about her visit to a school and she reported how lovely the girls there had been. There’s been the regular thing about Stephen just not getting in touch, and had I seen him. So there’s some real consistency, but it’s the ever present battiness that is really hard. I get suffocated by it and have to try and break out and back to some crumb of shared memory or enjoyment. In fact mum was quite happy today, and laughing and smiling about things I said but I didn’t always know what it was that she was liking about what I said, and she seemed to make many mistakes over what she could actually hear. Also she seems not to know her long time carers or care managers, even though they’ve been there over 2 years with her now, she doesn’t seem to quite get them.
26^th February 2012

Arrived about 10.30 on Public transport, mum seemed quite well. In the corner of the TV room, having her coffee. I moved her to her room straightaway and she asked what time I’d left and whether I’d taken Anna skating. These often seem like opening gambits that she likes to use. Good strategies that normally work, for appearing to remember!  I had a long visit today, and put out the peanuts for the birds, a few pigeons and a nice white dove came later. I started to read this lovely diary that mum had made of a trip she made with her father and grandfather. With pictures and written in pencil it was a trip on a boat they had “The Flame of Light” aka “The Flame” and was just so sweet as mum was with her parents, cousin Julie and her Grandfather.  Brought Mum out in a lovely chatty way.

31^st December 2011

I went to see Mum again – after I saw her in the week, early Saturday morning.

On arrival she was fast asleep, evidence of a porridge breakfast liberally applied, mouth wide open.  They washed her and got her up, and she expressed her usual complaints about the staff, about her money, about losing things, about being bullied by one of them, (but wouldn’t or couldn’t name them).  I wanted to make sure that there was really nothing going on, so I let her give free rein to these thoughts, but actually felt it undermined my whole visit. I need to try and protect mum from these things, not indulge and thus magnify her fears. I need to listen in more of a hidden way, keeping a beam of confident sunshine on her face.
Visit to Mum 25^th September 2011

Mum came out with a heartbreaking request today. It’s the one that lurks with every visit to a relative at a care home I think. “I want to go home!”

So I asked her what she thought of when she said that.  She said “Well I want peace, quiet and choice.” So I was able to agree with her and say that was exactly what I wanted – ie wouldn’t that be nice for anyone! So we could share the feeling.

Overall a reassuring visit where she said I think you do me a lot of good. Mentioned Sandy (who she thinks is a grandson) next door and how Dad was simply not getting in touch with her. I reminded her how much he loved her.

Visit to Mum on 11^th June 2011

Wasn’t good today really. Mum didn’t look too well, she seemed tired, she kept closing her eyes.  She still stirred when I spoke. I realised too that I’m sitting on the wrong side of her (for her bad eye) and that doesn’t help.

Positives were she recognised me the moment I came into the room, and when I leant forward to kiss her as I left she said I smelt nice.  But the truth was she couldn’t really string any sentences together or explain anything. Not a single sentence came out and made sense really. I even noticed that after she closed her eyes and I put some fish on a fork to feed her she’d forgotten what she was eating.  I prepared some more flowers, and the previous lot were all fresh enough. I spent a little time tidying up her wardrobe. It seems almost as if it’s a sense of luck if Mum will use a meaningful word when a staff member talks to her.  Just so confused, any sentence or subject I tried to talk around seemed not to link with anything for her, and she’d immediately be referring to some event or context that I didn’t know.

These last few times including the visit to Dad with Mum have highlighted for me what I think is a serious decline in mum at the moment. I don’t know if I get her on her own she’ll be able to show some of herself more. I worry it’s caused by me not being around, but feel too that what I’ve done and the commitment I’ve shown to her has been really good, and that I’ll always have those memories and somehow that intent and positive orientation to our shared path and history .. I could weep a thousand years!

Visit to Dad and call’s 29^th April 2011.

Had a horrible call a couple of days earlier with Dad being convinced that he was in a field somewhere, and first asking if my car was working or whether I could call a Taxi to pick him up. He said he was in the middle of a field and when I asked him how I could hear him on the phone – he said well not right in the middle! But when I tried to joke with him about getting on a Harley and driving home he just thought I was being cruel! There’s always clear rules with Dementia about what you can and can’t say – and I suppose that’s down to how in tune you are with what’s going on, and would suggest I pretty much get it with Mum.
Visit to mum on 19^th March 2011

This was a particularly difficult visit. I’d brought no flowers I wanted to have a clear room, and was feeling oppressed by having to. I really got the impression that mum never quite got me the whole visit. Then at the end she said so how’s your husband!? So I said my husband mum? , and she said yes how’s Mr Hill. I couldn’t think who she can have thought I was.