big badda boom

So we had the big family do today: the one that my relative D organised to celebrate my Mum's 80th in front of the wider family.

My day didn't start too well. I'd been up until 2am burning a slide show to disc and setting it to music (a desperate attempt to regain some sort of input in a day that had been taken out of my hands). I woke at 7am and hurried across the country to pick up my Niece, only to find that I could have slept in an extra hour since the clocks had gone back the night before... We got to the Home in good time and found Mum in her wheelchair, unable to take a single step now, so that I had to lift her up and place her in the car seat. She made horrible noises of pain even though I was as gentle as I could be.

When we got to the venue, it was beginning to spit with rain, but I had my golf umbrella prepared. Mum still complained that she was getting wet [ * important]. We got her inside and found that the function room was upstairs and there was, of course, no elevator. Mum announced that she needed the toilet and my Niece and another relative took her into the Ladies. Then the relative came out to tell me that my Mum needed a new skirt and underwear [ * Mum had thought it was the rain making her wet, but it hadn't been]. I drove back to the home with D, where we ended up having to search the laundry for clean underwear.

Back at the Inn, some male relatives had supervised Mum's ascension to the upper floor in her wheelchair, carried aloft like the Queen of Sheba. My female relatives got Mum changed and we began the meal. The food was excellent but Mum was pretty out of it: she didn't really recognise anyone save me and D and didn't take part in any conversation. I had to cut up her food for her. She was falling asleep before the dessert came.

We trooped back to the Home, where the Function room had been laid out very nicely by the Care staff for the second half of the celebration, where Mum's fellow residents could join us. There was a full buffet but none of us were hungry any more. Mum was quite bewildered now and didn't seem to understand where she was: she kept saying that she would need to go upstairs to use the toilet, and I couldn't make her understand that she was back home now and mere metres from her own facilities. While everyone else enjoyed the slide show, Mum couldn't keep her attention on the screen and ended up looking sideways at something else.

It seemed to me that poor Mum was being put through an assault course of demands and psychological disorientation and, not for the first time, I questioned who this was all being done for.

By 6pm the relatives were beginning to say their goodbyes and I had formed two conclusions about the day:

(1) I was glad that the wider family had finally seen where Mum is now living, and were impressed with the facilities

(2) D had learned that she can't do this to Mum again (I made sure she acknowledged it out loud)

An odd thing happened to me today. One of the new additions to our family by marriage is a capable chap I'll call C. During his student years he had done a stint working with the elderly and infirm and he spent the day being very practical and take-charge. He was wonderful with Mum. After a year of coping single-handed with this situation, it seemed like I was constantly chasing my tail today, running around looking for my car key (in the ignition), thinking that someone had stolen my umbrella (again in the car), losing the DVD with the slide show (again in the car). I was hot and sweaty and confused and I found myself wiping tears from my itchy eyes and telling C that I believed his competence was allowing me to finally let myself go to pieces a bit.

the hole in the wall

My last entry provoked an anonymous response which I found both comforting and illuminating.

The Commenter, who is in a remarkably similar position to myself with regard to her/his Mother, reassured me that my feelings of coldness and distance are sometimes a necessary protection for the Carer.

But I was particularly struck by a wonderfully apt description of how it feels to talk to our relatives with dementia:

"It's like I'm trying to talk to her through a hole in the wall and the hole is getting smaller and smaller."

I would have been delighted to come up with such a perfect simile. Somehow, for me, the more precisely I can describe an event or situation in my writing here the more tolerable I find it. I can only hope that my anonymous friend gains an equal comfort.

grief and guilt

Just to lighten my mood [!], I've been reading Andrew Holleran's novel, "Grief". It's a Platonic exercise in which a rather thin plot exists to enable various archetypes to hold forth on their particular experience of or views about Grief, so that the book ends up investigating the subject from many different perspectives. I know, I know... it sounds like a real riot. For me, it's a return to a writer I used to venerate in my 20s.

Anyway, there was a statement midway through the book which caught my attention, since it brought to mind something that I've often thought about since my Dad died:

"When your parents die, you know, your audience is gone. You really have no one who cares about what you do. But I think somebody has to care about you - someone has to think you matter"

When my Dad died in 1999, I was already writing in my journal that it was the end of historical certainty for our family. I already knew that my Mother could not be relied upon to recall events from our childhood or even from the minute before. She was no longer a reliable Witness to our lives. I didn't yet understand the reason for that in those days, but I knew for sure that Truth had died with my Father. And for that I grieved. Now, of course, the situation is closer to what is described in the quotation above. Even though my Mother is still alive, she is not there to care, in any real sense, what I do. There is no point, indeed, in even telling her things that would only serve to confuse her. She's not even sure who I am, sometimes, unless the staff have been reminding her all morning that I'm on my way to see her. I visit her as I would her grave. *

There's also another pertinent remark, in the final pages, which I won't quote other than to say that it points out that a Carer can potentially make an expiation of their lot, assuaging some guilt through a situation which allows them to act selflessly. This idea hit home, hard. All along I've felt a degree of unreality about the way I've cared for Mum. My actions were outwardly those of a loving Son, but I felt cold inside and experienced a growing guilt about that disparity. It has slowly become easier for me as I've done more for Mum. Maybe I feel that I am a slightly better person for having done all this for her, or maybe I've just got better at presenting the facade and it's comfortable to hide behind it, a small mean unworthy thing rattling around inside a shell. 

At some point, does it even matter any more what motivation, or lack of one, lies behind a caring action?

*[I'm shocked that I wrote that]

birthday: part II

Mum was inching her up the corridor to her bedroom when I arrived. She was unable to work out how she could turn around to greet me so she froze, clinging to the railing with one hand and holding her stick in the other. Her face was bright red and peeling, as if from a bad sunburn. A staff-member told me that they'd found some face products in Mum's bathroom again - she's under instruction not to use these as they encourage a fungal infection that is inflaming her skin.

Mum's white hair and red face seemed cruelly mocked by her white blouse and red skirt.

I gave her my arm and we slowly made our way to her bedroom. I've never seen her move so slowly and in so much pain. I kicked myself for not buying her a 'walker' rather than this silly photo frame.

When we got to her room, I let her use the toilet in privacy, but she had to call me inside since she couldn't find the toilet paper or the toilet flush (she was turning to her right when both are to the left).

I sat next to Mum on her bed to show her the digital photo frame. The first picture that came up was one of Mum and my Dad. Mum poked the glass, leaving a smudge over his face. 

To my horror, she asked: "Tell me, who's he?"

I died inside.

We watched just about all of the 400 or so photographs as they displayed. It was so difficult to keep Mum's attention on the slideshow, as she kept looking away to the bathroom door. I found myself announcing what we were seeing, because hearing her pathetic guesses was heartbreaking. By the end she was getting better at spotting childhood "Greg" but she occasionally turned to me when my Dad came up and said "that's you, of course." Mostly, it seemed, she just wanted to go to the toilet again.

Afterwards, I got 2 plates and some cutlery from the kitchen and I cut us each a slice of the cake I'd brought. It was a shame to cut into it, but it proved to be equally delicious as it was beautiful. Mum didn't use her fork but instead grabbed chunks of rich chocolate sponge and chocolate truffle sauce by hand and crammed them into her mouth, making a mess everywhere. When she had eaten most of her slice she became distressed looking down at her chocolaty hands and told me that she couldn't understand how they'd become so dirty. I fetched some napkins.

             

After cleaning her up and helping her down to the Lounge again, I started to feel very sad and I decided that I had to go. In any case, I was supposed to be at work this afternoon and it was already 4:30pm. I had a two-hour journey home ahead of me, followed by a delayed "afternoon shift" that would take me through to midnight or later.

On my way home I pondered my unhappiness. I realised that I had put myself through a LOT of stress to get every detail perfect for someone who could no longer appreciate these things. Who had I really been doing this for? Myself, maybe? Mum would have been happier to be taken out somewhere instead. It's late and I'm exhausted ... I'll have to come back to this.

* I have chosen photographs that make Mum look a LOT more lucid than she proved today because I just can't bear looking at the ones I've discarded.

birthday: part I

I've spent the last week in a continual panic, trying to cope with an increasing workload piled on top of me by my increasingly unavailable Manager. At the same time I've been trying to get everything in place for my Mother's 80th birthday (today).

As I've mentioned before, one of my relatives has taken it upon herself to organise a family get-together for Mum at the end of the month, and has taken the preparations so far out of my hands that I have not been allowed to invite Mum's closest relation "because there's not enough room". In many ways, what's being planned for the end of the month has little to do with Mum any more and is really about my relative, who always exhausts herself micromanaging these things and then has a nervous breakdown at the event, when her guests want to do their own thing, and declares that she's never going to organise ever again!

I decided that I couldn't let today go by without marking it in person, just Mum and me.

To that end, I found the most wonderful cake at the weekend, which is a chocolate sponge surrounded by what look like Shoji screens. The chocolate bird's nest and rose are somewhat over the top, but I'm excited at the prospect of eating gold leaf!

I also bought a rather expensive but elegant Sony digital photo-frame and I've spent the last 4 nights delicately teasing photographs from albums (quite scary when they've been glued for decades) and scanning them into my computer in order to transfer the images to the frame. I was up until 4am Friday, Saturday and Sunday night, and 2am last night, working until I couldn't safely wield the blade any more. Last night I painstakingly re-titled the images with numbers, hoping to display them in an order showing Mum's lifetime, but when I finally came to upload them at 2am this morning, I found that the frame's slideshow ran according to other criteria and photographs from the 1940s and 50s were, for some reason, distributed across the other decades. 

Oh well, nothing I can do about it now. And the photos do look amazing. I hope she doesn't cry. I've telephoned the Home and made sure that they're expecting me. They've agreed to present their own birthday cake with the evening meal, so that mine is the first that Mum sees.

It's midday and I'm about to set off.

Happy Birthday, Mum!

birthdays

My 13-year-old Niece stayed with me this weekend. Naturally, Grandma was a topic that came up in conversation.

I was explaining to her that Grandma often gets her muddled up with my Sister, and will typically dredge up a story from our 80s schooldays and attach it to my Niece's name. I explained that it wasn't just her, though, and that Grandma sometimes thought that I was still at school, myself.

My Niece told me that last year she'd received a birthday message from her Grandma that said, "Happy 24th Birthday!" It was hard not to be slightly amused at that one. I sometimes wonder what it must be like to grow up with a dotty Grandma. At least my Niece will know what's happening if her own Mother begins to get things wrong.

Mum's 80th is just over a week away. She's finally caught up with the age that she's been telling everyone for the last 3 years. We're having a family get-together later in the month. I'm planning to scan a pile of photographs and make her a DVD of memories which we'll project onto a wall during the event. I think I might buy her one of those digital picture frames for her Birthday and load some of them onto that.