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.