Sunday 27 April 2008

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]

Thursday 24 April 2008

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.

Wednesday 23 April 2008

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.

Monday 21 April 2008

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?"

Wednesday 16 April 2008

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.


Tuesday 15 April 2008

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.

Monday 7 April 2008

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....

Friday 4 April 2008

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!