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.

disoriented

I'm in Mum's room, sitting in a chair in the window alcove, looking out over the garden. We're going out to have lunch in 10 minutes or so. Mum, being Mum, needs the toilet first. She decides against using her own bathroom, and says that she'll use the toilet down the hallway.

A couple of minutes later, I hear one of the staff members directing her, as she has evidently lost her way and doesn't know her way to the bathroom, though she's been living here for 2 months now.

A few minutes later, I hear the astonished exclamatory noises that Mum is prone to making on entering a room, only I can tell she's at the other end of the corridor and has obviously walked down to the lounge. I hear the same staff member gently reminding Mum that her Son is visiting her and is waiting in her bedroom. Mum sounds genuinely surprised.

Last year, little things like this would have worried the hell out of me. Now, I just feel a wisp of sadness pass over me and then I feel relieved that Mum is being cared for here.

stray

There's a dog on my street with dementia.

A few times recently, I've arrived home to find this dog loping up the driveway from my garden out back. She gives me a baleful look as she passes me and then trots into the next driveway. Moments later she emerges in the driveway of the house beyond. This dog has forgotten where she lives.

The first time this happened, I caught up with her and read her tag and rang her owner. She lives about 20 houses down the street and has an infant who takes up all her attention. Apparently this dog is old and just doesn't recognise her home any more. This isn't just a stray - you can tell as soon as you see her. There's a look of dull panic in her eyes that I've seen in Mum's on occasion. This dog keeps in motion because she knows that something isn't right. There's a robotic quality to her relentless search for something she has forgotten. The normal doggy responses are missing: stop her and she stands unresponsive as you pet her, waiting to resume her search. Walk with her up the street and she tries every driveway along the way unless encouraged onwards. Her own home is greeted with no more enthusiasm than any other.

Meeting her again this week felt like a nudge from the universe.

the savages

I just got back from seeing "The Savages". In my current exhausted state, I stumbled into the cinema having forgotten why this movie had stuck in my consciousness as something to look out for. I sat down thinking, "Well, Philip Seymour Hoffman and Laura Linney are always interesting."

Of course, within seconds I remembered that this was an unflinching look at dementia and caring. There was a LOT here that I recognised, both in the portrayal of the Father and in the conflicted behaviour of his children. I'm not sure what anyone who hasn't gone through this would get out of watching the movie, but I could feel a lot of issues being externalised and I blushed at times. I've been Jon, unwilling to get drawn in but ultimately both responsible and realistic, and I've been Wendy, neurotic with guilt about what she's done. I wish I could say it was cathartic to watch, but at least there wasn't some Hollywood solution that I'd missed in the real world.

It is a wryly comic movie, though. And the characters grew (slightly) towards the end. There's hope for me yet... as long as Tamara Jenkins is writing and directing my life (oh wait... my writers went on strike years ago).

ADDENDUM: I ended up going out again for the late showing of "Juno", which cheered me up no end - this year's "Little Miss Sunshine".

intruders

Mum is happy in the Home but there are now a couple of residents causing problems for her.

Firstly, there's the jealous old lady I've previously described - she is now, it seems, finding her way up the corridor to Mum's room and coming inside screaming at Mum. When Mum mimics this for me, baring her teeth and wobbling her jaw from side to side, it's very frightening because it makes her look truly demented. Trust me, that's not a look you ever want to see on a member of your family.

Secondly, to my surprise, the rather charming and solicitous gentleman of the household, who I've seen fending off Screaming Lady's attentions, has himself turned up in Mum's bedroom wearing only his underpants, prompting Mum to eject him vigorously. It turns out that he tells everyone that he owns the place. I suspect one of his relatives told him "this is your home now" and he took her literally.

Of course, my first reaction on hearing of these incidents was a strong urge to remove Mum and find her somewhere more genteel, but Mum insists that she doesn't want to be moved. My quandary is that Mum really needs looking after 24 hours per day in a place geared for dementia, but anywhere I found for her is bound to have residents like these (or worse).

When we got back from lunch, the gentleman's jacket was draped over Mum's dressing table chair. He'd been into her room again.

I have shown Mum that she can lock her bedroom door. What else can I do?

micro-managing

My visit this weekend reminded me how much I'd forgotten already. Maybe I ought to get one of those brain-scan thingamajigs for myself.

I had forgotten just how much organisation it takes to do the simplest thing when Mum's along for the ride, how each action needs to be broken down into tiny steps, and how I need to over-estimate the time required to perform each step by a factor of 1o.

I'd forgotten the shocking fact that I now have to be the one who has to choose what Mum wears, what she eats, have to teach her how to use a seat belt every time we get into the car (and out of it), have to steer her along the sweet aisle in the supermarket to the items I know are her favourites and stop her picking up every bag and bar on the way.

I'd forgotten that, months ago, the Social Worker told me that Mum wasn't really capable of communicating, that she was winging it, instead, by responding in generic phrases that sounded credible but didn't really add up. I miss conversation with Mum. What we have now is entirely driven by me: I say something and Mum gives an expected response which tells it back to me in hand-me-down phrases.

I realised something new this weekend. For ages, Mum has taken to reading things out to me (road signs, menus, anything on shelves in a store). At first I was irritated and would say, "Yes, Mum, I know you can read. You don't have to prove it to me." But now I understand that Mum's choice has eroded away and she's only capable of reading out the options in the hope that I will make the decision for her. This was another symptom of her dementia all along.

careful what you say

I rang Mum last night and we had a really good conversation, one that was somehow more lucid than usual. 

Perhaps that's why I dropped my guard and I told her that I was going to come and visit this weekend, told her what I'd bought for her and would be bringing with me.

Silly Greg.

First there was the 6am call. Then the one at 8:30 on my way in to work. Then, later in the morning, one of the Care Home staff calling me to ask what time I was planning to arrive...

How many times does it need to happen before I learn? The future is always today with Mum now.

rude

There's a woman in Mum's household who screams at her.

She's a rather angry-looking crone who seems to have claimed (unilaterally) the one and only male resident (at least 20 years her junior) as her love interest. Apparently she will put her arms around his neck and hang off him until the staff can pull her away. Whenever Mum is about, this woman is hostile, and I suspect that she sees Mum as a rival. It's another form of dementia, of course.

I saw this woman there a few weeks ago on my last visit. The four residents of the household were eating and those of us visiting were having a rather stilted conversation across the table. The crone was sulking powerfully as we engaged her paramour. He was talking about his time overseas.

"I had a cousin who lived in Canada," announced the crone, interrupting Mum as she began to say something.

A few minutes later, in the course of conversation, Mum tried her best to engage this woman by making reference to this cousin.

"What is she saying?" cried the woman, "I don't understand what she's saying!"

Mum blushed quite redly but kept her temper and repeated herself again calmly.

I wanted to remove Mum from this awful situation, this embarrassment and indignity, but it was another case where I realised that Mum is still capable of fighting her own battles sometimes. There's no reason to concede to this woman when the home is just as much Mum's as hers. It's my guilt at being responsible for Mum's move that is behind my desire to remove her at the first sign of difficulty. It's obvious that Mum still thinks this place offers enough to balance one difficult woman.

remember me?

Mum called this afternoon, and we had the same conversation we've had 10 times since I visited her last, which was 10 days ago. As usual, she started by enquiring about her bank account and asking me if I knew that she gets a pension from Dad's old company...

I resisted the temptation to mouth the words to myself, and I let her get it all out in her own time without interrupting her. A couple of days ago I bought Mum a writing notebook and I've printed out a simple diagram explaining her finances. I'm hoping that she'll refer to this when she wakes up at night with her "sudden thoughts".

Midway through extolling the food again ("... and it's free, you know") and telling me what had been going on at the Home, Mum paused and asked me: "Have you ever been here? Have you visited this place?"

That took me aback somewhat.

office

“Ah, he's here... Hello, Greg?”
The call comes around 4:30pm while I'm at work. Mum sounds bright and urgent. I can hear activity in the background.
“Hi Mum. What can I do for you?”
“I’m in the office here and I wanted to talk to you about this….er..... So…. I’ll call you later.”
“Mum… I don’t understand… You’re calling me now to tell me that you’ll call me later?”
“Yes.”
“Is there anything wrong? We can talk now. What did you want to tell me?”
“Well it’s about the money… this money… this 5… er…. To pay for one room here.”

Mum's clutching at straws. She’s desperate to make sense to prove to me that she’s competent, but everything she says betrays her. Behind this conversation, I suspect, is the loss/theft of the five £20 notes I left in her purse 3 weeks ago. At the weekend, we had several discussions about this, where I explained how all her pension was now going towards paying for her stay in the Home.

“Well, so I’m in the office now…”
“Is Christine (the Manager) there?”
“I don’t know… [shouts]… is there a Christine here?…. No…”

I hear a plate go into a washing-up bowl.

“Where are you, Mum?”
“In the OFFICE… I told you! You know… where we have the television and the sofas and they cook things for us in a kitchen.”
“The Lounge?”
“Yes, the Lounge.”

I first noticed Mum’s word-substitutions at Christmas. They're cropping up more and more frequently.

scrabble

I’m sitting playing Scrabble with two relatives of another resident in the communal lounge/diner, wondering if the presence of a Scrabble board here is therapeutic or a cruel joke, given the level of Aphasia in this room.

The staff member is having trouble getting Mum to the table for her meal. The food keeps going back in the oven because Mum has wandered off down the corridor to her room. She’ll go and fetch her but the moment she turns her back to plate the meal, Mum has risen because she’s just remembered something or she needs the toilet. For someone who has such trouble walking, Mum certainly puts in some good mileage.

Eventually, she is sitting and eating.
“I must show you the pool,” she says to me, standing up suddenly.
“Pool? I didn’t think this place had a swimming pool.”
“Oh yes, a large one. It’s over that way. They use a chair to lift you in and…”

Mum’s talking about the bath.

my perceptions confounded

A couple of days ago I came home to find my answer phone blinking. The caller was Mum. As usual, she had started talking too soon, and all that the machine caught was "This isn't working." I thought the worst, naturally. This was Mum's judgement of her new living arrangement. She wanted to go back home.

When I listened again more closely, I could hear that there had been someone with Mum helping her use the phone. Mum had probably been thrown into confusion when my answer message began, and she had told the staff member "this isn't working."

I begin to see a pattern now: I misread the signs, projecting my own fears and concerns onto Mum's somewhat Delphic utterances, and then sometimes I am granted  a clearer understanding.

Yesterday was a case in point. Now, I've felt conflicted ever since the day I took Mum to live at this Care Home, chiefly because she was simultaneously offered a place at the home nearer me, the one where she had received day care. In my estimation, the place near me was far nicer, better organised, more genteel and genuinely warm and caring. Without wanting to sound a snob, it felt more like my Mum's sort of place - a Country Club, if you will. The only trouble was that they didn't cater to those of more advanced Dementia than Mum, and Mum is likely to deteriorate further at any time. Oh, and the place was too far away from other relatives for them to visit easily.

So, since then I've found myself holding Mum's new home up to comparison with the 'nicer' one, and I've been hypersensitive to every discrepancy in care that I can see, wracking myself with guilty feelings. Anyway, yesterday I arrived at 1pm and took Mum out to a restaurant for Lunch. I had decided that we should go shoe shopping afterwards (Mum had been complaining about her one pair of shoes hurting). As we got into the car to go to the Mall, Mum said: "I hope you're not taking me back to that place."

My heart took a dive, somersaulting expertly on its way down into an Olympic-sized pool of misery.

"What place is that, Mum?" (Where did THAT question come from?)

"You know... the place where you talked to them and... er.. I don't know how to describe it."

After several attempts, it finally transpired that Mum was talking about the 'nicer' Care Home. She told me that she had never felt that she fitted in there, and that she felt the residents excluded her somehow. She went on to say that she was happier where she was now and that she particularly enjoyed the food.

I kept a straight face, but inside my brain someone was reworking the layout and doing extensive renovations.

manager

I rang the General Manager of the Care Home today to talk over a few concerns.

Firstly I asked about the in-house Hair Salon. Mum had told me a few times that she had tried to get her hair done but that there were no available appointments. She's gone a whole month now without having her hair 'set' and I know she'll be miserable about that. The Manager agreed that the Salon was meant to operate 6 days a week, but that she was having trouble sourcing staff to operate more than 1 or 2 days. As elsewhere in this newly-opened complex, the facilities are excellent but the planning and manpower are lagging behind somewhat.

Next, I told her that Mum appeared to be bored and reckons that she does nothing all day. The Manager replied that she had found Mum engaged in a game of Scrabble only yesterday, playing the other residents and a member of staff. I had wondered if it was really just Mum's memory problems that meant that she couldn't tell me what she had been doing. All the same, I asked that the Events Manager make a point of calling on Mum and encouraging her to get involved in some activities.

Finally I got around to the money that I think has gone missing. The Manager sighed and said that this was the first incident that she'd heard of here, but that the same thing had happened at other homes in the group. She took the issue very seriously and said that she would perform a thorough search of Mum's room before taking things further. We discussed using a cash control system whereby I would leave an amount with the Reception staff, who would dole it out to Mum on request, keeping an account updated. I'm going to give that system a try this weekend, when I'll be visiting Mum again.

alone again

I tried not to get attached to Mum's dog over this last month, but she wore me down with her unflagging ecstatic unconditional enthusiasm and love. It was revolting and irresistible in equal measures and I found it a daunting challenge to my miserablist sensibilities. After Mum was housed, the dog and I quickly settled into a routine.

This weekend was my first opportunity to go down South again and begin the process of preparing the flat for sale. I knew that I should contact the Groomer and ask if she was still happy to take the dog off my hands, but something in me resisted. I wasn't sure if maybe I was dreading hearing that she had decided against it. Or maybe I was reluctant to give the dog up: I found myself calling Sachi to sit with me on the couch and absentmindedly petting her for hours. I wondered if maybe, as an adoptee, I was incapable of letting go this relationship with a being that loved and depended on me no matter what - basically a child. I knew I had to do this, though. The breed shouldn't be left alone for more than 3 hours, which was inconsistent with my normal working arrangements and a logistical exercise going out at all. Setting my house alarm meant I had to confine her to an upstairs room, where her yowling was heartbreaking. The only practical way forward was to telephone. Resolving not to think about it any more, I telephoned.

The Groomer said that she still wanted Sachi. So now I was committed to going down South this weekend. Still, Friday afternoon came and went. I transitioned from my work PC to my home Mac and soon it was late and I was too tired to drive. Stalling?

I set off at midday Saturday and arrived about 5pm. The Groomer rang en-route and was there within minutes of my arrival. Sachi was ecstatic to see her but then flopped on the sofa as we talked over the practicalities. As far as she was concerned, this was a normal grooming run, and she trotted out of the door with her new owner without a look back.

I got a lot done on Sunday, hauling huge sacks of junk mail and clutter out to the bins and taking photos of the furniture to circulate to family or possibly to advertise on eBay.

The odd thing is that, ever since Saturday evening, I keep halting with a sudden start and realising that I'm on my own. It comes on like a little shock. I realise that absolutely every step I've taken for the last month, day and night, has been with Mum or her dog in mind. I get a little shock when I think about going out and realise that I can (that I don't need to think about what to do with the dog). I get a shock when I realise that I can open a door at normal speed and not have to be cautious any more just in case the dog is lying on the other side. I get a shock when I suddenly remember that I haven't checked Sachi's food dish or water today, and then realise I don't have to any more. This is silly - why didn't I feel this when I'd dropped Mum off in Cheshire? It's ludicrous that I have this reaction over her dog, isn't it?

Perhaps these are the shocks I would have had after Mum's departure if I'd been alone then. That little dog was like a sticking-plaster over that particular wound.

worries

Our phone conversations are short. Mostly, when I ring, Mum has very little to tell me. She says that she hasn't been doing anything, that she can't remember what she ate, and then she pretty much wants to hand the receiver to a staff member so that they can speak to me instead. I don't know if talking on the phone is too much for her or if she's upset with me and doesn't want to talk.

Mum has rung me three times now about money. Today she told me that her purse only contains a £10 note. Now I put five £20 notes into it on the 26th December and the staff tell me that Mum hasn't left the building since. Everything that can be 'bought' there is included in the fees for Mum, so I'm worried that someone has taken her money. Worried and a bit depressed.

I know that it's early days as yet, but no-one has visited Mum apart from me.

money

Mum has asked a couple of times about money. She's aware that I'm holding her Debit Card and chequebook. I really don't feel it's safe to leave them under her control. Anyway, everything in the complex is either included in the fees or will be added to the bill that comes to me by Direct Debit. The Finance Officer had recommended that I leave some cash in Mum's purse purely to reassure her. And, of course, the staff might take Mum out to the local shops to buy sweets or something occasionally.

So, the day after Christmas, when I took Mum back to the Home, I stopped at an ATM and withdrew £100 from her spending account. When I had Mum settled in back in her room, I showed her that I was putting the money inside her purse. Then I announced that I was leaving. Mum walked down the corridor with me to the Kitchen. As we shuffled along, I suggested to her that she should keep the money in her handbag a secret from everyone for safety's sake. She turned to me and said, rather loudly, "But I haven't GOT any money!" She was still carrying the handbag, so I opened it up again to show her.

This morning, Mum telephoned. "Now.. you have my card... don't you?"

"Yes, Mum."

"Yes, as I told you.... er.... I.. I need some money."

"Have you used up all your money already, Mum?"

"I haven't GOT any money!"

I asked her to look in her handbag. She told me that she had £10. I asked her to look again and she eventually realised that it was all still there.

Strangely I'm reassured by things like this: by the times I hear that she needed help to shower, or to dress, or that she woke in the middle of the night and pressed the nurse call button as if it was 'room service'. They're all indications that (1) I did the right thing placing her somewhere like this and (2) she seems to have quickly got the hang of asking for help.