woman's hour

Back in December 2007, when I was settling Mum into the Care Home, I read that the place would be officially opened in mid-January by Jenni Murray, a well-known presenter of BBC Radio 4's "Woman's Hour". Mum used to listen to this show every day during my adolescence, and I thought it would be a treat for her to meet this star - and it might bolster her appreciation of just how special this new place was.

The day came and I remember ringing Mum in the evening and asking what had happened that day.

"Oh, nothing much. No, I can't think of anything we did."

I felt sad that Mum had missed out on the big event.

So imagine my surprise a week or two ago when I was signing out at Reception and I happened to look up at the TV screen they have there showcasing the place. I saw that Mum featured in picture after picture. And there, indeed, was Mum with Jenni Murray, sitting at the dining table, standing in the doorway to her bathroom. It seems that Mum was pretty central to their promotional activities.

Anyway, I asked them to forward me some shots and here are a couple. Bear in mind that Mum looks a lot better these days, now that she's eating better and has access to a hair-dresser (the in-house salon had no staff at this point).

closing the closet door again

"Oh, don't you look handsome with a beard!" says Mum, as I enter her room.

I've been bearded for 2 and a half years now, and Mum wasn't so complimentary back in 2006. This is just one of those plausible comments that Mum makes which disguise her lack of any true memory.

I hand her a large Easter Egg and notice fresh flowers in the room. She tells me that she has no idea where they came from. After a few exchanges, we fall into a conversation about the telephone and how she's just not using it (I haven't seen any billed calls for a good 10 months now). I ask her if there's anyone she'd like me to ring and I'm unsurprised to hear her nominate her Cousin. I dial the number and get through and am astonished to hear that the Cousin visited Mum only last week (so that's where the flowers came from). It's really great to hear that another family member has visited Mum. Before I hand over the phone I get to hear all about how well Mum looked and how lovely the building and facilities are.

After the call, Mum announces that she'd really like a boyfriend, though she's unsure that a suitable candidate is going to turn up any time soon. I tell her that I feel exactly the same way, and she stuns me by asking me 4 times in the next 10 minutes if I've met a nice girl recently. I'm trying not to correct her these days but just work with her reality, so I find myself making the sort of throw-away excuses I had to make to relatives all through my teens and twenties.

one from the vaults

I was tidying up my study again last night (the clutter only makes me worry I've already started with the 'brain diabetes'), and I found a piece of Mum's correspondence from July '07 in a box I was emptying. It was a letter giving Mum permission to go ahead and remodel her bathroom at her old apartment, with the Leaseholders waiving the fee of £41.12 [story here]. Her returned cheque was attached.

As I prepared to shred the cheque, I noticed something odd about the numbers. Why had Mum put two decimal points? She had written "41.12.0". Looking over to the written side of the cheque, I realised with a shock that here was evidence that Mum was already 'time travelling'. 

Mum had written the cheque out in pounds, shillings and pence. UK currency went decimal in 1971.

If I'd seen this at the time I think I'd have felt a mixture of panic and victory: panic that things were indeed heading downhill and victory that I had some proof to take to Mum's Doctor. Nowadays, with Mum blissfully detached from worldly affairs, I can look at this as a curiosity and smile: Mum's in a good place.

veronica

I've not had much to report for the last month, which is good news in one way.

This morning my impish iPod gave me a nudge in the form of Elvis Costello's "Veronica".

"Do you suppose that waiting, hands on eyes,

Veronica has gone to hide

And all the time she laughs at those

Who shout her name and steal her clothes..."

I never imagined, back when this single came out, that this would ever become my reality.

what do you do?

I almost forgot one funny thing. As I was leaving last night, one of the Care Staff asked me what line of work I was in. I launched into the always convoluted explanation of what it is exactly that a Management Consultant does.

She stopped me by saying: "Oh your Mum told us that she thought you were a Butler."

What? WHAT? Where on EARTH did THAT come from?

Mum never ceases to surprise me.

I was born under a wand'rin' star

[image from the ever-inspiring postsecret]

I accepted a Voluntary Redundancy package from my company yesterday. My life is going to change in the coming months and this is likely to affect my contact with my Mum.

The office where I signed the forms is about 10 miles from the Home where my Mum lives, so I travelled on afterwards to see her. I think it prudent to drop in unannounced from time to time.

As I came into the Lounge, I spotted Mum leaning out of an armchair, her attention fixed on a conversation taking place at the dining table. She was smiling, rapt in fascination, and I was instantly glad that she is here now, surrounded by activity, and no longer isolated and unvisited in a flat 300 miles away. 

Mum was delighted to see me and started introducing me to everyone: staff and residents that I already know by name, having met them dozens of times over the past year. Mum told me that she kisses a picture of me every night before bed, although she's previously told me that she does that with a portrait of my Father, so I'm not sure if she wasn't a bit confused.

I started going through Mum's 'Life Plan' folder, signing my name to observations and suggestions made by the staff: the Home is very diligent about telephoning every time the Doctor prescribes new medicine, but they were keen that I leave some written record of acknowledgment.

So I was sitting there, turning the pages and reading about Mum's mobility problems and thinking about my own mobility plans - the possibility of doing some traveling once I've worked my notice. Just then, one of the Care Staff walked behind my chair, talking with an IT technician about a webcam.

I had intended to ask about emailing Mum from wherever I was in the world, but it turns out that they've just installed a webcam on the computer in the Lounge, so I might even be able to chat to her face to face from Outer-Whereveristan.

I'm not superstitious normally, but it's moments like these that make me feel guided by angels.

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.

if the shoe fits

I'm on the phone with Mum:

"These slippers I'm wearing are too big, they're slipping off."

She's told me this a few times now. Last time I visited I checked and there was no looseness as far as I could tell, but I made a play of unfastening the velcro and pulling the fold-over tighter, and then Mum was content for another half hour until we went through the same process.

There's little point in me telling Mum that we had to buy them big because her feet were very swollen at the time and may well be again ("Really?" she'll ask, professing ignorance), or even that the velcro can be adjusted ("Well, I didn't know that!"), but I usually do go ahead and explain anyway.

This time she started relaying what I was saying to a member of staff. It went something like this:

"You can adjust them to make them tighter, if you want, Mum."

"Really? Oh... He's telling me that they fit"

"We had to buy them that size because your feet were so swollen a few months ago."

"I don't remember that."

"So... all you have to do is unfasten them and then pull the fastener over a bit further to make the slipper tighter."

"He's telling me that this is a company that takes pride in being one-size fits all and that these are special shoes that can fit anybody..."

I'm almost tempted to speak any old rubbish into the phone if she's going to make it all up anyway.

now and then: a visit

My Brother-in-Law and my Nieces were in the country last weekend (one of my Nieces is starting school in the UK). I picked up Mum and took her to see them. Here's a photo of Mum with my Neices (that's me hunched down behind the chair). We spent a lovely afternoon together eating, looking at photos and catching up.

On the day it seemed like business as usual, with me shepherding Mum through hurdles (physical and mental) as patiently as possible. In some ways I could see a deterioration in her: I had difficulties helping her up the steep stairs in the house whenever she wanted to use the toilet, and she told a story about giving away a toy dog 3 times while we were there and a further time on our drive back. But I just smiled and let it pass - Mum hasn't got so many stories these days so I should let her enjoy those she can still remember.

However, looking at this picture I am struck by how much happier and healthier Mum looks now. It sends me back to the following pictures I still have on my phone, taken last December when I decided that I needed to intervene in Mum's life.

a dream

In my dream this morning, I was with Mum at a construction site of some sort, maybe apartments. We were wearing hard hats. Mum announced that she needed the toilet, so I was taking her upstairs to the nearest one. She was out in front of me. I remember a spiral staircase and then a balcony area that wrapped around a central atrium. Then Mum sped up and got away from me, lost. I was running around corridors looking for her.

A year ago this would have been a nightmare. Today I just woke up thinking about Pacman.

times are hard

Mum had some visitors today.

D just rang me to tell me that she and my Uncle spent a pleasant afternoon with Mum, taking her out to lunch at the place where we will be hosting her 80th Birthday party later this year. D said that Mum appeared well. They had asked her if she was settled and happy and she had assured them that she was, and had extolled the staff and facilities.

D said, however, that Mum was noticeably quieter than on previous encounters, and that it had been difficult to engage her in conversation. Also, Mum had seemed a good deal more confused than at their last meeting. 

For instance, Mum had announced that they were now forced to sleep two to a bed at the Home, and that the lady sharing her bed last night had rolled over and fallen to the floor.

When I heard this, I wondered whether this was Mum time-travelling back to her Depression-era childhood (Mum was born in 1928 in Boston, Massachusetts). 

D told me that she had questioned a staff member at the home and discovered that the doubling-up idea had originated with Mum's neighbour, who cannot find her way back to her bedroom in the evening and had wandered into Mum's room and exclaimed "do we have to sleep two-to-a-bed now?" The rolling out of bed incident had had happened to another resident ('screaming lady') a few weeks ago.

D told me that when she questioned Mum's version of events, Mum had become uncharacteristically angry and insisted that it had happened exactly as she had described.

folly

I just checked and this little pile of boxes cost my Mother £300 (reduced from £480).

The boxes contain pills to combat hair loss (something that Mum obsessed about constantly whilst all the time losing something much more important).

I rescued these (and there were several times this many) from my holistic holocaust a while back, when I threw away all the 'alternative' potions and pills, lotions and sprays I found all over Mum's flat, all of them opened and then stuffed in a drawer, most of them out-of-date.

I rescued these because of their name. I know that it refers to hair, but I'm struck by the irony of "folly grow".

back to school

I haven't seen Mum for a few weeks and I can't go this weekend.

Even though I've already visited her more times this year than the past 5 put together, it's hard not to feel guilty.

I give her a call. As usual, at the other end it sounds like they're having a great time, laughing away at something as Mum comes to the phone.

"Bums on seats!" I hear someone call out as Mum settles herself.

We have the usual generic conversation, necessary as she can't recall anyone's name there or any activities she may have been engaged in. Typically, Mum gets caught up in the conversation around her for a bit and I'm left with one side of the discussion until she's prompted to talk to me again.

I'm just telling her that I'll visit her next weekend when she stuns me with: "Yes, it's difficult for you with you being at boarding school, isn't it? When you come it can only be for a few hours."

This is another example of Mum explaining the world to herself with the available fragments of memory. It's 33 years since I was at boarding school (a miserable and traumatic period for me), where I was only allowed out for a few hours on a Sunday.

Recently I've tended to visit on a Sunday and my visits have typically been from lunchtime through to early evening. So I can see why that particular jigsaw piece seemed like a good fit for her.

It's still a shock whenever she does this, though. And shocking in the context of our family, where my incarceration has never been discussed as it used to upset me so much. Her mention of it felt like a slap but I know it was entirely innocent.

The irony is not lost on me that I've now been the one to uproot her and place her in a Home not so very far from that dreadful institution...

Munich dreaming

Folks, I'm on holiday in Germany (I know... it seemed a good idea at the time), so I've little to post at the moment. I'm trying to keep my mind off Mum for a week, but it's difficult.

Today, I thought of a way to convey Mum's odd deja-vu moments to you.

Here's the scenario:

We're driving down a country lane. Suddenly a fleet of flying saucers cross the road overhead. I slam on the brakes, my mind boggling and my heart pumping.

I can guarantee that Mum's response would be to say:

"You know I was just thinking that they always cross in THAT direction."

simalacrum

Phone conversations with Mum are increasingly bringing to mind the Turing test.

Her conversation is plausible on the surface, but after a few exchanges I'm aware that Mum's responses are generic fragments of her former speech, crusts of old sentences tossed into the mix, comments that would imply credibility were it not so easy to spot the prompts in my news that have triggered each facsimile phrase. There are so few of them that it's easy to anticipate what's coming up next.

There is no familial nourishment in these conversations, no sense that I am communicating with another soul. Her larder is quickly emptied of stock expressions and Mum ends the call or suggests that I talk to a member of staff. It's almost as if Mum is conscious that she's taking a test and wants to keep it short to avoid exposure. I'm left feeling that I've missed a connection.

family wedding

My favourite member of staff at the Home had made sure Mum visited the hairdresser, had bathed her and had picked out and accessorised an outfit for her. She told me that Mum had been asking every day of the week whether Greg was coming. It’s gone into Mum’s 'Life Plan' * now that they don’t tell her about anything more than 24 hours in advance.

In the car, Mum turned to me and asked, casually, how things were “back home” and then asked after the health of a couple of relatives who have been dead for 12 and 30 years, respectively. My heart sank a little: Mum was trying to prove competence again, which is seldom a wise tactic on her part because she inevitably proves just the opposite.

Or maybe she was just time travelling again and was visiting a time when these relatives were alive - in that case, who was I?

At the Church, I helped Mum down the steps and we shuffled up the aisle, past our remaining family. I saw a couple of them visibly shocked at the transformation in Mum as I helped her gingerly into a pew. For her part, it didn’t seem like Mum recognised anyone at all.

After the Service and the confetti and photographs, we made our way to the Reception venue (a 20 minute car journey). En route, Mum asked me 6 times where we were planning to go for lunch. Each time she had no recollection of a wedding or where we might therefore be going. Irritated, she took to pointing out things in the villages we passed through, saying how she’d seen whatever it was last week and was amazed that it hadn’t moved. This is something I’ve noticed Mum doing for about 6 years now – she experiences unshakable déjà-vu and treats my logical proofs that she’s never been there before with unconcealed disdain.

At the Reception, Mum ate unenthusiastically, glancing at me in her inscrutable way and replying in the vaguest terms to questions from other guests. She lasted longer than I had anticipated, but a couple of hours after the meal she’d had enough and suddenly asked to go.

As we said our goodbyes, I stood beside her and quietly announced each person as they came up to her, but she didn’t seem to register either names or faces. She didn’t even appear to understand the significance of the girl standing in front of her wearing a big white meringue…

Safely installed back at the Home, Mum gained confidence and gave me the first true smile of the day. I sat with her for an hour or so and she regaled me with the usual stories about the other residents. Here she was happy and engaged and interested in what was going on around her, in a way that had been lacking all day.

[*a continuously-updated document stating Mum's memories, relationships, life events and her wishes and needs]

dialling down

I get an itemised phone bill for Mum from the Home every month. Over the last 6 months I've noticed that I'm the only person she's telephoned in the whole period. I've urged her to ring the friends and relatives in her phone book, but obviously to no avail.

On the plus side, at least there is enough stimulation in the Home that she doesn't feel the need to ring Directory Enquiries every few minutes for the human company. That proved very expensive last year.

On the negative side, I'm saddened that she has lost the knack of staying in touch with her friends.

The latest bill arrived this morning. There are only 10 entries in all. Looking down the list, I see the 4:45am call that disturbed me in April. After that there are a couple of calls and then signs of a further decline. I see variations on my number, where she's made single-digit mistakes, or repeated a digit.

After that she is dialling too short, with a 5 digit number, a four digit number...

The final attempt is '01'. That was a couple of weeks ago.

table manners

Mum’s looking at me with an inscrutable expression. It’s quite unnerving. Every time I look up from my plate she’s staring at me.

After a few minutes of yes/no conversation, we’ve lapsed into silence and I’m (as usual) worrying what it means and (as usual) concluding that she’s upset and unhappy with me over her change of circumstances. I hold her look for a second and it feels awkward. I pull a face. After a few heartbeats she raises her eyebrows slightly. A minute later we’re doing it again.

“I’m wondering…..whatever happened to that gorgeous little boy I brought up.” she says, eventually.

After a stunned moment, I realise that this isn’t a snide remark. I think she really is having a little trouble recognising me as Greg.

Mum’s worrying me this week. She’s very frail and uncertain, hesitating over her knife and fork, looking to me for cues, reaching for her glass when I take a drink from mine. She seems nervous and out of her depth. How much longer will I be able to take her out to restaurants like this?

Getting up to go, she needs one hand on my arm and the other holding her stick. She does a sort of stationary jig before we set off, like she needs to wobble her legs into motion.

incomprehension

Mum's still a bit croaky and on anti-biotics, so here's another letter from last year. When I registered my Power of Attorney over her affairs, I was surprised to find a new account in her portfolio: a telephone account, requiring a password to operate. I was surprised, as this wasn't Mum's sort of thing, so I closed it and moved the balance back into her savings. My guess is that someone from the Bank's marketing department had rung Mum and persuaded her to open this account.

Anyway, amongst all the scraps of paper that were piled on her table or her desk was this letter from the Bank, listing the details of the new account:


Notice that Mum has written: "This offer not taken up" at the bottom of the page. She didn't understand what the letter was about. She thought it was an offer which she decided not to accept when in fact she had already accepted it and this was a confirmation of that decision.

I find that note poignant, a little bit of administration where Mum is trying to demonstrate herself in control of her own affairs but simultaneously showcasing her incomprehension.