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.

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.

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.

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.

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?"

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.