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.

Tokyo... 1968-70

I have no idea what age I was here - maybe 2? Anyway, I like the composition. The girl on the right was called Hisako and took to me as if I was a little white-blond puppy. Dad was the local Vice President of an international US travel firm and he and Mum hosted lots of cocktail parties for ambassadors and visiting Hollywood stars. I tell everyone that being exposed to Judy Garland and Ethel Merman at such a vulnerable age explains everything...

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.

write it down

Mum was a bit croaky over the phone this weekend, so we decided that I should visit next week instead. So here's something I turned up whilst trying to clear my 'Mum' in-tray. I picked it up from her apartment last time I was down there. It's a letter that was sent to her last year to inform her of an appointment for a scan.


As you can see, it's heavily annotated by Mum, mostly with the same two phone numbers over and over. From my experiences with Mum, I'd say that she kept finding this letter on her dining table, getting concerned about the arrangements and ringing the number at the top of the page. They would have given her the correct number to call (already shown at the bottom of the letter), which she noted down before ringing. Mum's written down the number 12 times on this piece of paper alone, but I'll bet there were other places she wrote these numbers. She could have been doing this at an interval of about 5 minutes or over the course of a week.

I do recall an occasion last year where a scan was brought forward suddenly - I wonder if they just got tired of her ringing?

Just a glimpse into the mind of someone falling into dementia.

there's talking and there's listening

“Sorry I didn’t get to see you this weekend, but I was very tired and I figured that you’d already had some visitors this week.”
“That’s okay, Dear. So, do you think you’ll be able to come and see me in a few days?”
“No. Sorry. It’s Sunday now, so I’ve got a week’s work ahead of me before I could visit.”

[pause]

“Okay… Right, I’d better go and… I’m just thinking I should go and ask to have a … to use the pool* tonight so that I’m clean before you arrive.”


[*bath]

plans

I tried to ring Mum in the evening to hear how yesterday's visit had gone for her, but she was already in bed by 9pm, most likely exhausted by the excitement. So I rang again just now.

Sometimes our conversations remind me of those I used to have with my Nieces when they were very young - no matter what I asked them I'd get a one or two-word answer. All Mum could tell me was that it was all "very nice" and I got "yes" and "no" answers after that.

Then she perked up with: "I suppose you know that D has got her teeth into arranging a party for my Birthday."

Family get-togethers are D's speciality, and I'm grateful to her for wanting to arrange this for my Mum's 80th in October and I'm sure she'll do a better job than I would. D and I had an initial scoping discussion last night. 

It sounds like Mum's already told everyone in her flat that she's having a big party.

"Do we know who's coming?"

"Well, your Birthday is a long way off yet, Mum, so we've got plenty of time to invite people and arrange everything."

"Oh....er.....when is my Birthday."

I still get little shocks at things like this. I suppose it's because the accepted model is that those with dementia lose their retention of recent events but remember the older, core stuff with great clarity. But it's more complicated than that, of course. The holes in the Swiss cheese aren't just in the top inch - they can be anywhere.

dementia and racism

Mum was taken out to Lunch today by our Relatives (D&G). I phoned the Home a few times this morning to ensure that Mum had been bathed and had her hair done in the on-site salon, because I knew she'd feel happier if they caught her looking her best. D told me later that the visit was a good one and that Mum looked very well.

Apparently Mum referred to the incident where she called me early on Monday morning. She said "I upset Greg." Now, I didn't get angry with her at the time and certainly not the next time we spoke, so I was a bit embarrassed, but maybe she'll actually remember the lesson if that's the story she tells herself.

Mum's new embellishment to the story, however, disturbs me.

To back-track slightly: when Mum called me at 4:45am her tone was definitely cheerful, as if she was calling me at a normal time. After I had pointed out the inappropriate hour for the 4th or 5th time, however, Mum searched around for an alternative explanation for why she had rung and told me that she was frightened and had called because she could hear people in the hallway coming towards her room (we'd been talking a few minutes by this point). I told her that they would be staff coming to see why she wasn't in bed and that I knew this hadn't been her real motive (it's pointless to argue with someone with short-term memory problems, but sometimes I just DO). Anyway, I told her to open her door and, sure enough, I could hear a staff member asking her if she was alright.

Okay, so today her story was that she'd upset me by calling early, but that she'd only called because she was so frightened by (and this I find shocking) "Negroes coming into my room".

I have never heard my Mum use racist language or ever condone any such language used by anyone around her. I've never heard her use that term. The idea that she would even choose to mention the skin colour of the staff member totally dumbfounds and alarms me. My Mother has mixed with people of many different nations and ethnicities in her life - she lived in Pakistan, in Japan, in India and travelled extensively throughout my Dad's career, taking in every continent. I don't recall her ever being frightened by a skin colour. All I can imagine is that she reverted to some pre-1950s attitude - maybe the sort of language she heard her own parents use.

I haven't got some cute way of ending this entry. I'm speechless.

half a night's sleep

I'm jolted awake. It's dark and I'm disoriented for a few seconds. I realise that the phone is ringing. A wave of dread washes over me - a call at this time can't be good news.

"Hi Greg. I thought I'd better ring you because I'm short of money."
"Mum! It's....oh no...it's 4:45am. You can't call people at this time of night!"

Mum doesn't apologise. In fact, she sounds completely unconcerned, as if she hasn't heard me.

We go through the standard conversation where I explain that everything is paid for where she is, that there is money for her in the safe at Reception, that in the past 5 months she has not once needed money for anything. This is all news to Mum. She asks me what I mean by 'Reception', even though she often eats (for free, as a resident) in the café down there.

I get nowhere in trying to explain why it's bad that she's called me up in the middle of the night. It's something I struggle with, her lack of sympathy, or is it empathy? Mentally I have no problem accepting that Mum's ability to to do either has atrophied. But emotionally? That's a different matter. It's been years now since I could rely on her to feel sorry for me if something bad has happened, but I still am not used to it and I feel the pain of it afresh every time.

I may have to have the phone removed from her room if this happens again. It's a good thing that she's fallen out of the habit of calling anyone else. I think back to last year when I got a few sheepish phone calls from people asking me if there was anything I could do to stop Mum phoning them in the early hours.

Finally, I ask "What do you need money for Mum? What is it you want to buy?"

"Oh, I don't know.... food?"

bookends

"Long ago it must be
I have a photograph.
Preserve your memories.
They're all that's left to you"

Bookends theme, Bookends, Simon & Garfunkel

It's a haunting tune, but what they don't say is that you're lucky if your memories are left to you.

finances

When I first realised that Mum needed more sheltered/assisted accommodation, I worried how we were going to pay for it. True, Mum had a reasonably generous pension coming in each month from my Dad's old firm which topped up her finances nicely. But it seemed that every home I looked at charged almost double her income... and most of them were places I wasn't happy to show Mum anyway. I realised that I was going to have to sell her apartment and use the proceeds to pay for the shortfall each month. After a few selfish moments where I lamented my vanishing inheritance, I set to finding the best place for Mum at whatever the cost.

As my entries from last year show, I was lucky to find a place that not only surpassed all the other 'standard' and corporate homes I looked at but was also a little cheaper. We're still losing around £160 per week on top of Mum's pension, but that's a whole lot better than losing another £350 every week. Okay, I'll stop dancing around it - the place costs £560 per week and Mum's income is around £400.

Since December, I've calculated that the proceeds from selling Mum's apartment ought to see her alright for another 20 years. Of course, if her money runs out sooner, the State would step in to make up the difference (this is where you start commenting bitterly, those of you from the US). It's a comfortable situation for Mum and that's all that is important, but I'm aware of the irony that she'd get the same level of care if she had nothing (6 out of the 8 people in her household don't pay a penny) and that's all my Dad's hard-earned cash disappearing down the drain.

So I believed for the last 5 months. But then a couple of weeks ago I fell to chatting with a distant relative about Mum's situation.

"You need to buy a flat or a house with the money and the rent will pay for the shortfall," she said.

I'm such an idiot. Why didn't I think of that? I rent out a house myself, so it should have been obvious. The rent raised could cover the shortfall and we would still have the asset at the end!

I'm posting this not just to how dense I can be, but as an option for those in my situation. It's currently my intention to do something like this when I get around to clearing Mum's apartment and selling it (falling market permitting!)

It could be that there's a flaw in the plan. Judging by my past performance, I ought to see it by August.

soap opera

I'm beginning to learn more about the new characters in Mum's life.

I was with her on Saturday. I took her for a cosmetics run to a large department store, where we allowed the Clinique girls to go to town on her face and sell her some new playthings. The staff quickly worked out that giving Mum a choice wasn't a great idea and that she takes suggestion well. They cooed over me, saying that she was lucky to have a Son like me to take her out. It made me wonder what normal Sons get away with. I don't feel like that brilliant a Son.

Anyway, back at the Home, the Screaming Lady was mostly asleep at the table and when she was awake she was feeble and whiny and sounded very scared. I did hear her refer to "those bitches" but she was immediately challenged by a staff member, which I found reassuring. I'm a bit sorry for her now, as she sounds very confused and seems to live in a frightening world where everything is being taken away from her. As I keep telling Mum, this is a troubled lady, but Mum no longer has the subtlety of distinction necessary to understand this. Like an child in a playground she categorises people only as 'nice' and 'nasty'. I try to tell her that every drama needs to have some conflict and that she's now living in her own private soap opera with Screaming Lady as her Nemesis.

'The Gentleman', is my new focus of concern. He was constantly wandering off down the corridor, past his own room and disappearing into those of others. I made a point of running after him whenever he was headed for Mum's room, and the staff member on duty caught on and began coming with me. 'The Gentleman' kept insisting that they were all his rooms, which claim we firmly refuted. When the staff member asked him what he wanted in those rooms, he said that he was looking for cash, which pretty much answered for me the question of what happened to the £100 I left in Mum's purse all those weeks ago. At one point, the staff member took him to each one of 'his' rooms and pointed out that they all belonged to different people and each had that person's name on the door. 'The Gentleman' strode back, apologetic and saying "You're quite right", but 2 minutes later he was off down the corridor again. He's too much of a handful when there's only one staff member on duty. I need to speak to the Manager about him.

So we have a Nemesis and we have a Gentleman Thief.

Also in the lounge was a new resident I hadn't met before. At first I wondered why she was in the Home, as she seemed normal enough and made sense in conversation. But after a while I noticed that her conversation was cyclic and came around and around to possessions of hers that had gone missing. Now I knew that she and Mum had clashed over a black coat in Mum's wardrobe to which this woman laid claim. The woman's own coat had then been located in her own wardrobe, but this didn't stop her retelling the story about 5 times while I was present. When I circumvented her on the last occasion to say that I knew all about it and that Mum hadn't taken her coat, her face fell and she asked for the telephone and started weeping, holding it in her hand. We had actually met this woman earlier in the department store, shopping with her daughter, and she was wearing her black coat...

So that's a Nemesis, a Gentleman Thief and an Accuser.

Then I met Mum's Special Friend who, again, seems quite normal, if maybe a little fragile and excitable in temperament. She sat next to Mum gazing adoringly at her, as if Mum was made of diamond, and drinking up anything that Mum said and repeating it back to us both. She seemed positively ecstatic to meet me (so she's definitely nuts). Mum doesn't even remember her name, which is slightly embarrassing. She's told me before how her new friend hugs her and kisses her goodnight, but I was amazed to hear that they've even shared a bed on occasion when Screaming Lady was prowling the corridor.

Oh my, this is a progressive soap opera! It seems we've got a potential Lesbian love interest, too.

I'll be back after these messages from our sponsors....

if the shoe fits

A while back, on one of my visits to Mum, we went shopping for shoes. Mum has suffered from enormous bunions for a few years now, and it turned out that she needed a size 4 shoe on her left foot and a size 5 on her right. Thanks to the pesky new technology at the till we didn't get away with 'accidentally' picking up mismatched sizes from the shelf, so I ended up having to pay for 2 sets of shoes in each style.

Recently, Mum's feet have swollen up even further and a staff member at the Home rang me this week to suggest that I buy some especially-stretchy numbers from the 'Cosyfeet' catalogue. I got her to sit with Mum and pick out the styles and colours she wanted, and then the staff member rang me back with the catalogue numbers. She's gone for the Eliza slipper and the Katie shoe, in a size 6 this time, and I've had to buy matching Velcro extension strips for when Mum's feet swell even further. These are both pretty ugly examples - there are nicer ones in the catalogue, in my opinion. I'm tempted to see these choices as another sign of Mum's decline, but then it could well be that she was steered towards them by someone who doesn't know her tastes the way I do. The trick these days is how NOT to influence Mum's decisions.

I'm still going to use a wheelchair when we go shopping, though. It can shave a whole hour off a store visit!

throwing mum away

It’s like an archaeological dig clearing out a parent’s home. Every cupboard, every drawer divulges some artefact that you remember from elsewhere in your ancient childhood.

Then there are the geological strata of purchasing to go through, where useful items like, say, batteries have been bought, stored, covered by something, then bought and stored again in repeated cycles. Empty canisters, used products are added to the heap, unaccountably. Peeling away these layers of carelessness is depressing. Once again, the bin bags are swelling as I come across new stashes of detritus. Everywhere there is evidence of Mum trying to carry on her life but failing, and stashing the evidence rather than disposing of it. This chaos is indicative of her mental state, it somehow is her, and I’m ruthlessly throwing her away in handfuls.

I am in her bedroom now. The bed is one of those electrically adjustable ones. It’s frozen in a half-up state. I find that a cable has been dislodged. How long has it been like that? Is that another reason why Mum started sleeping in her chair in the Living Room? This is all so pathetic that I feel tears rising.

I sit in the Living Room trying to concentrate on the flickering, malfunctioning TV, eating my microwave meal. It’s too quiet and lonely here, and I write as someone who normally looks for solitude. I think about Mum’s existence here and the tears come.

bridge

I’m ending a call with Mum and, as usual, I ask if anyone has called her. No. So…has she called anyone? No.

At this point, it is my habit to suggest someone that Mum might telephone, and the last few times I’ve suggested ‘J’, each time provoking an enthusiastic reaction.

This time, however, Mum says “Now I’m glad you mentioned that because I can’t find my address book…” And Mum launches into a detailed story of how, when she came here, she had packed her (one) suitcase and it had been “full to bursting” and that she remembered putting the address book in a front pocket on the case, but that when she came to unpack it wasn’t there and she wonders if maybe it fell out on her journey.

This is confabulation, a sort of mental bridge that Mum has built across a chasm in her memory to help explain her current situation. She has been doing this for a year or two now. It must be half-conscious because she accepts my own version of events without any argument. I remind her that she didn’t pack or unpack, that I did all her packing and that there were several cases and a couple of car-loads of stuff. What’s more, I say, every time I visit her she tells me that she has no address book even though it’s either lying in plain view beside her telephone or in her dressing table drawer.

Mum grasps onto the idea of the dressing table drawer and says that she’s going straight to her room to look for it.

“And then you’ll phone ‘J’?”

And I get the usual enthusiastic reaction as if the idea of contacting ‘J’ has come right out of the blue.

Happy Easter

I’m down in Sussex in my Mum’s old apartment, trying to make some progress in clearing the place. I’m noticing that every time I make a start on a task I suddenly remember a telephone call I need to make or a blog entry I need to compose. The jobs before me are each manageable in their own right, but I panic at the huge cliff-face rather than focussing on the first hand-holds that will start me on my ascent. This is very peculiar after the huge steps I took in December – why am I freezing now?

So, anyway, for a few minutes I’ll record some news that I’ve missed out over the past few months.

Firstly, Mum is generally very happy in her new home. I never find her in her own bedroom when I ring her – she’s always in the Lounge. She has made a close friend on the household and is very fond of the staff members, even if she can’t recall anyone’s name. She praises the food and loves the way they do her hair. There seem to be some group activities going on from time to time.

Secondly, Mum has had visitors at last. My Brother-in-Law and my Nieces turned up in the country on a whistle-stop tour and visited Mum in February. They told me that they were very impressed with the Home, which came as a tremendous relief to me. D & G also visited and took Mum out to lunch one weekend. They were equally enthusiastic about the Home and told me that I couldn’t have found a better place for Mum. It’s stupid how important this is for me to hear.

I’m a bit disappointed that no-one else has been in contact, though. Those of Mum’s friends who’ve found out where she is now living have all said that they would call her, but they haven’t. It’s like a taboo for them, like if they don’t speak to her it won’t be true. I suppose they just want to remember Mum as she was, but it would be lovely for Mum if they’d call. Yes, she’s a bit confused about where she is and what day it is, but she’s still the same person. All that’s changed is that she’s being looked after now (in a “hotel”, if you believe her).

Right…. I’d better go and get busy with the bubble wrap.

Happy Easter!

fight club

Mum’s telling me about a run-in with Screaming Lady. As usual, the crone had come up to her and was calling her a Bitch.

“So I pushed her and she fell over and was screaming even more.”

I’m shocked to hear this. I’ve never known Mum to be violent in any way. Even more shocking to me is Mum’s amused tone of voice. I tell her that she can’t go pushing old people to the ground.

“She’s not old” she says, scornfully, “She’s young… she’s a young woman.”
“Mum, she’s older than you!”
“No…. she’s about… “. I hear Mum ask a staff member…. “She’s 86.”
That’s 7 years older than Mum. I don’t expect Mum to be able to do the calculation, but I would hope that she would realise that 86 is “old”.
“Mum! You can’t push over an 86-year-old. She could break a hip or something. You’ll get into trouble. Can’t you just walk away from her?”
“I suppose so.”

Parenting is so hard.

reminder

Mum calls me: “Hello Greg. I thought I should call you because we haven’t spoken for quite some time now.”

This is Mum’s current favourite opening line, although she rings almost every day. I suspect, to her mind, that it makes her sound competent and like she’s managing me. Mum has thought about this call in advance, and she quickly switches to a theme I haven’t heard for a while: that she’s short of money. Once again I go through the familiar list: she doesn’t need money at the home for things like hair-dressing and chiropody; I’ve left money at Reception for her and she only has to ask for it; in three months she hasn’t once needed money for anything… This is all received as shocking news to Mum and she keeps interjecting with “Really?” or “I didn’t know that!”

Then our talk turns to this weekend. Mum wants to know if I’m going to visit her. I explain that the Easter weekend is the first time since January that I’ll have a chance to travel down South to continue clearing her apartment, and that I’m working in London on Thursday and will continue on to the flat afterwards. I start listing the things I have to get done down there. When I say that I’m going to lift the carpet in the bathroom to find out why the floor is swollen, Mum says: “But there isn’t any carpet in the bathroom – it’s just… lino” and I realise that she is thinking about where she is living now (her new bathroom is a wet-room). I explain that it’s the flat in Sussex I’m travelling down to, not where she is living now. Mum pauses for a moment, but I don’t immediately see the significance.

We’re finishing up the call soon after, and Mum says “Well, I’ll see you at the weekend, then.” I say that, no, I’m travelling down South to work on her old flat. She hesitates again and I suddenly realise something. “Mum… do you know where you’re living now?” Mum is indignant “Of course I do. In the place that… that… we bought for me!” “And where is that, Mum?” And she names her old address down in Sussex.

Mum’s memories of the last 5 months haven’t stuck in her head. This is why she cannot name anyone she’s living with or any of the staff members. Now it seems that she has elided her new home with her last one. I suppose it’s a positive sign that this place feels like home to her. I’m reminded again how good a thing it is that she is being looked after and I think how wretched her life would have been now if I’d not done anything a few months ago.

the way we were

I was in stuck in town recently and expecting a call back home, so I rang my house phone to listen for messages. It turns out that my machine insists on playing every stored message before getting to the new one.

As the first messages played I was transported back to last October and the calls I would get from Mum.

As usual, I feel guilty for this further betrayal in posting these calls but, at the same time, I want to preserve them as a record.

memory

The phone rings once, then stops. A couple of minutes pass and it rings, once, again. Mum's trying to call me.

I'm out of the bath by the time she gets it right. She tells me that everything is fine. She wants to know when I'm visiting next as it "has been a while" but then, when I protest, she claims to remember my visit last Sunday. She tells me that she'll have to go as she needs the toilet. I've worked out that this is her subconscious strategy to avoid facing that she's got anything wrong.

30 minutes later she's back on the line and sounds down in the dumps. I ask if the Screaming Lady is giving her a bad time. No, she says, but someone phoned her with some bad news. She can't remember who it was, but she names one of her relatives and says that the caller told her that he's very ill. Now, this relative died just after Christmas, and I know for a fact that Mum has been told the news 3 times since. I gently remind her and she claims to remember, and says she needs the toilet and that it's only because her life is so hectic nowadays that she made the mistake. Hectic?

As we end the call, I suddenly remember a conversation we once had when I was a teenager. Mum was talking about my childhood and the amazing places we lived while my Dad worked abroad.

"Whatever happens, Greg, no-one can take your memories away from you. You'll always have them."

Funny I should remember that now.

Mothering Sunday

I turned up at 1pm with a big bunch of flowers to find Mum at the dining table clearing the last morsel from her plate. The staff member on duty gave me a guilty look - perhaps suddenly remembering that I'd phoned to tell her I was taking Mum out to lunch today. I sometimes feel like pointing out to this place that their web url contains ".org", which stands for "organisation" - something they noticeably lack.

The table was booked for 1:30pm at a Restaurant about 5 minutes away by car, so we got there 20 minutes late. Since the parking was around the back and Mum walks so slowly that passing glaciers tut as they overtake, I let her out of the car directly in front of the Restaurant and said, "There's the door - follow those people inside and tell them we have a reservation. I'll park and join you in a minute." I found a space and ran back around the corner to find a gaggle of old ladies assisting Mum, who had managed to walk another 20 yards down the road and had been trying to enter a private house, telling the owner that she was sure she had a reservation. Mum wore her usual beaming bewildered expression that is there whenever she is the centre of attention.

I thought maybe Mum would perhaps just manage a starter and dessert, but she ate a whole second lunch. At the table she regaled me with the same stories of Screaming Lady and the Gentleman, who has morphed over the weeks into Screaming Lady's husband in Mum's imagination. She's still calling the Home "that Hotel I'm living in". She tells me the same stories every time we speak.

A very large lady came in at one point and sat at the next table. Mum very loudly commented that the lady's blouse was not the best choice for someone so fat. I think even the kitchen staff heard that one.

We had a good afternoon and I didn't get frustrated with her once. Well, it was Mothers' Day and not "Chronically Single Sons' Day", after all. I must look up that date.