circle in a spiral

I decide to ring Mum, as I didn't hear from her yesterday.

"Hi Mum"

As usual these days, Mum doesn't say hello back but just launches into the conversation.

"Yes,  I got this envelope yesterday...PAYE payment enquiry... and so I rang them and they said I needed to speak to [the company who pay Mum's pension]"

"Hold on.... what's this envelope?"

"It really flummoxed me."

"Well, why didn't you ring me before ringing them?"

"I don't know."

I ask Mum to read the letter to me. She begins at the top and slowly reads each line of the sender's address, then her own, then a jumble of code letters and numerals. She ends there, sounding satisfied.

"Mum. I'm sure there's more to the letter than that. What flummoxed you?"

"Oh!" she exclaims, suddenly realising that the letter is folded and there's more below.

It seems like a standard reply to the Tax Return I completed for Mum recently. It says that they've received it and calculated that she over-paid by a small amount last year.

I ask Mum to post this letter up to me for my records. Mum sounds quite unhappy at the task ahead of her. She asks for my address and I slowly dictate it to her. I then ask her to find a blank envelope and write it out now while she still remembers the task. I remind her where the envelopes are.

A few minutes later, the phone rings. Mum has found an envelope and wants to know my address. I dictate it slowly to her again. I ask if she's put the letter inside the envelope yet.

"What letter? I'm not writing a letter, am I?"

I remind her about the letter from the Revenue. She says she can't find it. I ask her to look for it. 

Five minutes later she rings me saying, "I've got the first line of  your address, but can you give me the code?"

I dictate my address for the third time. I ask if she found the letter yet. There is silence on the other end of the line, then a sigh. Without a good bye the receiver clatters down and I'm cut off.

phone bill

I've mentioned this in passing before, but here's a scan of one page from a phone bill I found at Mum's place. I found lots in her papers just like this. In June, it seems, she was not phoning anyone except for premium rate catalogues and (several times a day) directory enquiries. When I asked her if there was a number that she kept forgetting, she answered that she rang to find out the time or just to have someone to speak to. I find this desperately sad.

little things

I've commented before that it's sometimes the little things, rather than the big crises, that send me over the edge. In a crisis I find myself becoming very calm and detached, and I can think clearly about what needs to be done and in what order.

In contrast, despite the multiple frustrations of today, the thing that finally made me explode was that Mum kept jamming the phone down without saying "Good bye". She's not very accurate replacing the receiver, so I prefer some warning that the conversation is over before my ears are assaulted by the extremely loud clatter of Mum slamming the thing down in several attempts.

After the umpteenth time, I called her back and told her off about it. I feel pretty guilty about being angry with her. But she'll have forgotten any upset in the time it's taken me to type this, so I need to let it go.

the sims

I've never played "The Sims" but I imagine if you had a malfunctioning version of the game it would feel like today did for me, instructing Mum remotely by phone. This weekend Mum found a cheque, lost it, had to be told to look for it, had no memory it, rang the bank instead of looking for it but couldn't recall what she was ringing about, wandered off mid-call leaving the phone on and me calling out... and so on.

Today, the Warden was back on duty and I asked him to help Mum look through the pile of papers on her table. Some time later, Mum rang me to tell me that she'd found something from the Revenue but she wasn't sure what it was. After several attempts to describe it, I was fairly certain it was the cheque, so I sent her off to the Bank to put it into her account.

I rang Mum's Bank, later, and they told me that Mum had been there quite a lot recently, as she doesn't remember her PIN correctly and has to come into the Bank to get cash instead. They're mailing out a fresh reminder to her. Interestingly, Mum's version of this was "They've stopped my account, so I'm opening a new one," which would have given me a heart attack if I hadn't known what was behind it. Meantime we've spent the rest of the day hunting for Mum's Bank debit card, which she announced was missing. At first I'd be calling every half-hour to find that Mum wasn't looking because she'd forgotten it was missing, then I'd get a slew of calls every 2 minutes with Mum announcing what was in each pocket of each coat, or telling me that she'd tried to ring the Bank about it, or angrily telling me that she NEVER puts the card anywhere but her purse (I've experienced otherwise). Finally, just now at 6pm Mum found the card on her table under the slush pile.

I've spent the whole day breaking down 2 simple tasks and making sure Mum did them. I've not left my desk, I've not eaten since breakfast. I don't think I'd enjoy "The Sims".

birthday girl

Mum rang me at 8 this morning (I really should go to bed earlier than 4 on a Saturday night, or at least turn my phones off). She was stressing about the cheque that arrived yesterday, which she's now mislaid. I told her to wait until Monday and ask the Warden to help her find it. She said, "He's not here today," which was my point so I let it go.

Then I got a call during which I happened to ask her what she was going to eat today and Mum told me that the meals-on-wheels people had stopped coming some time ago. Now I know that they don't deliver on weekends, so it's most likely that all is as it should be, but it's one more thing for me to investigate on Monday. For the meantime I let it go.

Just now, I got another call in which Mum proudly announced that she'd just heard from the guy who's going to install her new shower (I'd had to intervene earlier this week because she called "Mr O" twice, both times inviting him to take on the job even though he's already agreed and the work is booked in for next month). Mum told me that Mr O had told her today that work would be starting on September 27th.

I didn't let it go.

I questioned the date. She confirmed it. 

I asked her what date it was today. She didn't know. 

I reminded her that it was her birthday and she eventually came up with October 14th. 

"So it's October 14th today and work is starting on September 27th?"

"Yes."

"Do you understand why that can't be?"

"....... No?"

We're more than half-way through the day now.

Happy Birthday, Mum.

deliveries

Mum rang this morning to read out a letter that had arrived from the Inland Revenue. It took her 10 attempts before I could work out that this was a refund with a cheque attached at the bottom (Mum couldn't see it until I suggested it might be there). I told her to take it to the Bank on Monday, but I've got a hunch she'll post it up to me instead.

It's Mum's Birthday tomorrow and I'm dealing with the tri-annual (Birthday/ Christmas/ Mother's Day) confusion of working out whose gift is whose. Today some flowers arrived which sound like mine from Mum's description, but mine were meant to come with a small box of chocolates. Mum was munching on chocolates this morning, but said they were from a much larger and branded box that sounds more like my Brother-in-Law's gift. Mum only remembers one delivery, so I'm left with a familiar conundrum.

As usual, I'm having to accept Mum's enthusiasm for the flowers as an implicit "Thank You". It's funny remembering my childhood and Mum standing over us to force us to write our "Thank You" letters on the day - now she doesn't even think to say the words.

occupational therapist

Minutes after the Warden's worrying news (see last post), I got a call from the Occupational Therapist who visited Mum this week. She had a long list of concerns which she wanted to get through before hearing mine (all I could think about was Mum walking on the bypass). Many of the concerns were about Mum's walking, which is very unsteady. She observed that Mum supports herself inside the flat by holding onto furniture and walls, launching herself across a room only when necessary, like when she needs to lurch into the Kitchen. The OT couldn't get Mum to consider a Zimmer frame, but is arranging a Physio consultation and is instituting a trolley for Mum to wheel her tray of food in from the Kitchen to the Living Room. We talked about ways of helping Mum with the bath, although given that the bath is being removed next month to be replaced by a walk-in shower, this would be a short-term fix. The OT pressed me to arrange a pendant alarm for Mum to wear, and expressed concern about her use of the electric hob (the one she has left hot before with items stacked on it).

Since the call, I've asked the Warden to turn the hob off at the wall (there wasn't a fuse to remove, unfortunately) and roll up the various rugs in Mum's apartment. I'm looking into various options with the pendant alarms. I've also got to make up a card for Mum to carry in her purse with my phone number on it, so that anyone who finds Mum wandering can call me.

wandering

Mum was found wandering on the bypass outside her village yesterday. A motorist stopped and brought her home. She was quite bewildered and unable to recall why she'd walked there. The Warden has done some sleuthing and traced her steps. It seems that she went to the hardware store to buy some light bulbs. At the till, she failed to enter the correct PIN for her debit card, so she told them that she'd go and get some cash from the bank across the street. Mum didn't make it to the bank - for some reason she took a left and kept walking until she ran out of pavement and continued on the grass verge.

This is a worrying development. And it's not something I can bring up with Mum either, since I don't officially know about it and I don't want to have her start hiding things from the Warden. She is sounding all bright and cheerful today and I'll bet she has no memory of this incident.

comings and goings

I call Mum. For a change, the phone hardly rings once before she answers it.

"Hi Mum."

"I'll tell you what has happened. The dog's been sick and it's red. I think there's blood in it. So I've rung the Vet and she's coming out."

"Oh, I'm sorry to hear that. Where was she sick?"

"On the carpet."

"I mean where in the flat?"

It turns out that the dog puked right by the phone. That's why Mum didn't take 15 rings to answer.

"Anyway, I must go and get my coat on if I'm going to get down there..."

"Mum, didn't you just say that the Vet was coming out to you?"

"Oh yes, that's right."

"Are you sure now?"

"Yes!"[angry]"Yes, she's coming out to see the dog here!"

I tell her I'll get off the phone and leave her to tend to the dog.

10 minutes later, on a hunch, I decide to call the Warden. He tells me that Mum told him the same - that the Vet was coming out. Then, a few minutes later, Mum passed his office on her way to the Vet's surgery. After a short period, Mum was back, explaining that she'd got as far as the surgery before realising that she'd gone down without the dog...

The Warden reckons that it's any deviation from usual routine that throws Mum.

ADDENDUM: Mum ended up taking the dog down to the Vets, after all. She called me back 10 minutes ago to tell me that she had some tablets for the dog and that she'd been instructed to feed her on fish. When I asked Mum how and when she was meant to administer the pills (having had SO much trouble scheduling her own), she couldn't tell me. So I rang the surgery, who gave me a more complicated picture. Firstly the dog is to be starved tonight. The pills Mum has are to start tomorrow night. Meantime, over the weekend, Mum is to give her bland food such as chicken or fish. Also, there are 2 further sets of pills which Mum failed to take with her on her way out which she is meant to start tonight. I put down the phone feeling somewhat depressed at the task ahead of me. I rang Mum and dictated the instructions slowly, but when I asked her to read them back to me she was unable to read her own handwriting. So, I've sent her down to the surgery again and asked them to write out a set for her. I feel really bad about it, but I think I may try not to get involved any further. It seems a hopeless regimen for Mum to follow. It was excruciating and depressing coaxing her through taking 2 anti-biotics a day for herself. THIS is beyond possibility.

ADDENDUM 2: Evidently, the Vet has begun to understand the problem. Mum forgot to return to the surgery that day, despite another reminder. The next day, the Vet gave the dog an injection that would suffice in place of the 3 prescribed medications. Once again, I'm glad that those around Mum are finally recognising the problem - if they're trying to think of easier ways to deal with things then there'll be less I need to manage over the phone, and consequently fewer frustrating tearful conversations.

community psychiatric nurse

Mum had a visit from a Community Psychiatric Nurse yesterday. I had a phone conversation with her before she visited Mum, where I panicked trying to recall 5 years of desperate concerns all at once. She then called today to give me her impressions.

It's a bit perverse of me, but I exhaled with relief to hear that Mum had proved "quite confused". But it means so much to know that this situation is now being recognised by other people. Apparently, Mum didn't score badly enough on her test to cross a particular threshold (possibly for drug treatment - I'm a little vague on the details), but the Nurse was still concerned, based upon Mum's conversation before and after the test. She has decided to re-visit Mum in a couple of weeks and meantime send an Occupational Therapist to visit Mum. the Therapist may be able to suggest ways for Mum to cope better with her daily activities, or put her in touch with services that will help care for her.

days of our lives

I've bought a clock for Mum which shows her the day of the week, the month and year. It's made by "Karlsson" and seems to be available at a range of prices from £65 to £145, depending on where you shop online (be aware that it's also available in super-size). Mum's clock sits on her mantelpiece, though I'm sure it's more of a wall-clock. I did look at an LCD clock with a digital display at half the price, but it wasn't so attractive and I wasn't confident that Mum would be able to tell the time, being of an analogue generation. Mum seems highly pleased with the clock, and I've been asking her what day it is each time I've phoned, in an effort to get her accustomed to looking at it.

ADDENDUM (March 2008) - I was frustrated when Mum moved this clock into her spare bedroom soon after. Now that I've inherited it, I think I understand why. Be warned that it makes a VERY loud whirring noise at least a couple of times a day, which always catches me unawares and makes me jump.

pills 2

This morning is the 6th day of a 7-day course of anti-biotics that Mum has been taking.*

As I've previously described, before leaving Mum on Wednesday I wrote the appropriate day on each blister in the pack, wrote an instruction on the box for Mum to wait until I call before taking a pill, and I've called twice a day since. It has been, nevertheless, hell every single day, with Mum totally unable to confirm what's been taken or remains to be taken. By Day 6, I would hope some routine to have been established but this morning Mum gave me to understand firstly that she'd already taken both pills for today already (though she couldn't say when) and then that she still had yesterday's AND today's pills to take.

I instructed Mum to take the pack to the Warden and get him to ring me. He told me that today's pills are still there, but that Mum missed both pills on Thursday and one yesterday. I wonder what it was that she audibly glugged down over the phone last night?

What hope do I have to help Mum when she can't follow simple instructions? Do I need to tell the Surgery to hospitalise her the next time there's a course of medication to be taken?


(*or not taking)

envelope

A tax form arrived over the weekend, which I asked Mum to post up to me. She told me that she would have to ask the Warden for an envelope. I questioned this, since I'd left a pack of 50 envelopes in her desk drawer, but she was adamant that this form wouldn't fit in them and she insisted that the form wouldn't fold. I could tell from her reaction that she had not tried these envelopes, indeed she had forgotten that she had them. I'm curious to see this form, which is evidently printed on a large piece of steel.

This morning, Mum called me to ask for my address. Now we had this problem about 2 years ago where Mum misaddressed a couple of items of mail, only one of which arrived. Back then it would take us about 6 extremely tearful and draining attempts to dictate my address successfully, so I sent her a large laminated card with my address on it, which she has used since. It looks now that she has forgotten all about this. We struggled through my address again, falling on all the familiar fences ('Avenue' versus 'Road', 'S' versus 'F' in the postal code). She read her effort out to me in a variety of versions, only to complain that it was all written on the top corner of the one envelope that she'd taken from the Warden and it was spoiled now...

pills

It's evening, and I ring Mum to tell her to take her second anti-biotic of the day.
"It's okay, I've taken them already."
"Them? What do you mean 'Them'?"
"All of them. I've taken all of my pills already."
I calculate quickly - that would mean that Mum's taken at least 8 strong anti-biotic tablets in one day. I don't know how your heart can sink while it's leaping into your mouth, but my heart has been showing off lately. I'm wondering who I should call about this, because I imagine it could have serious medical consequences, when it occurs to me what might have happened.
"Mum.... can you look at the strip of pills that you've taken, please?"
"It's gone. I've taken them all."
"Do you mean that the box is empty?"
"Yes."
"Is it possible that the strip is somewhere else in the flat?"
I get her to look. She finds the strip. The pills are not all taken. We take some 10 minutes to establish which ones are gone, despite my care to label each and every one by the day it should be taken. After I've listened to Mum swallow her 'Sat PM' pill, I say my goodnight.
"Are you ringing tomorrow morning, then?" Mum asks.
"Yes." I answer, thinking how we are on the fourth day of a week's pill-taking, and how each day's pills are a fresh new challenge.

complications

I call the Warden of the flats to let him know my progress with one of the issues I’m dealing with for Mum. He has news for me regarding Mum. Apparently, she headed off down to the Vet this morning after all, then came back 2 minutes later in some confusion without her front door key, and asked him to ring for an appointment. He rang the surgery and made an appointment for her, found the front door key in the front door of the development and took her back to her flat. 5 minutes later she was back, with her shopping trolley and saying that she was going shopping. When she returned she had no shopping with her, and no key. She explained that she had gone to the Vet and made an appointment in person. The key turned up inside her flat, which was unlocked. The Warden says her mental state is markedly declined since yesterday.

medications

The phone rings. Early. I’m exhausted from my 9-hour road trip home yesterday, so I’m a little groggy at first. It’s Mum, naturally.
“Well you can guess where I was”
“Hello Mum. Where were you?”
“On the toilet”
“….Okay.. why have you rung me up to tell me that?”
“….Oh…er…”
I can picture her looking around for clues to why she has called. She hits on one that makes sense to her – I can hear it in her voice.
“Because these tablets say ‘G will ring you when it’s time to take one’ “
“Yes Mum, but I haven’t rung you yet, have I?”
At this point, I anticipate Mum will change the subject to avoid embarrassment.
“Well, I’d better get off. I’m taking the dog down to the Vets about her ears.”
“Mum, I thought she went to the Vet yesterday?”
“No.”
“Mum, I was there when the Dog Groom lady took her for you. She came back with some drops for the dog’s ears.”
“Yes, I’ve got some drops for her ears here.”
“Well then she’s already been to the Vet. Now, since you’ve called me I’ll get you to have your first pill of the day.”
I can hear the unwillingness on Mum’s end. This is just too much for her right now.
“Mum, the box of pills is right by the phone. Can you see it?” (I’d hope so since she’s just read the label I put on the side of the box)
“Yes”
“Get the pills out of the box…. Do you see that 2 have been taken already? … Do you see that the next 2 have “Thu” written on them? …. Take one of those 2”
I end the call quickly before she can be distracted.

I can’t work out which is more stressful and infuriating: trying to help down the phone or in person.

2nd visit overview

I had thought that this second visit would pass more smoothly, since we achieved so much in the last week I was down about a fortnight ago. However, Mum seems to have degenerated further.

I find that she’s been put on anti-biotics for a foot infection (she hasn’t been cleaning properly between her toes), and she isn’t able to remember to take the tablets. She’ll angrily claim that she’s taken 6 that morning when she’s only meant to have taken one and there are the same number of tablets that there were last night.

Mum is constantly telling me “You’ve said that before, of course” when we’re talking. This reminds me of a road-trip we took 5 years ago, where we would have massive arguments whenever she insisted we had been on a particular French street the day before, even though she acknowledged that we had started that day 300 miles away in anther place entirely.

Each morning, when I’m at breakfast, Mum will glance down at my legs and criticize my running shorts, saying “We can’t go to the Doctors/Bank/Shops/Walk with you wearing those! You’d better buy yourself some long trousers.” This is despite the fact that I’ve been wearing long trousers every day this visit and the last.

Mum never never says “Thank you” to me once, even when I spend a whole evening cleaning her kitchen.

We watch television but she doesn’t understand the plots of the simplest dramas. After about 5 minutes of anything, I’ll find that she has fallen asleep hunched forward in her chair.

I test Mum this evening, after a full day which has involved 3 visits to the Doctor’s Surgery and much fussing around her. I ask Mum if she’s taken the dog out for a walk today.
“Yes, of course!” she says.
I ask her to tell me where she took the dog, and she describes the whole route.
Of course, I was with Mum all day and we neither of us took the dog for a walk. This confirms my suspicions about all the times she’s told me over the phone that the dog has had a walk that day.

stomach pain

After giving about 6 big vials of blood at the Surgery this morning, Mum wants to go out for lunch to this particular restaurant. We get there and Mum is 2 bites into a rather expensive roast salmon when she winces and cries out a little. She tells me that she has a sharp stomach pain. She experiences a few more twinges and I notice that she's not eating any more. I ask her if she'd like to leave. She would.

On the way back to the village, I ask if her preferred stomach medication would deal with the pain, but Mum says no. I divert to the Doctor's Surgery, only to find it closed for the afternoon "for training". We ring the emergency number, but the Doctor on the end of the line is reluctant to offer any treatment since Mum is unable to give a consistent history. We make an appointment for Mum's surgery after 5pm, when the training is over. At home, I find that Mum's 'Gaviscon' settles her almost at once.

Shortly before 5, I stir Mum from her slumbers in front of the television to tell her that we need to leave for the surgery.
"Why?" She can't remember the pain now.

We see a different Doctor today. She is warm and funny. I do most of the talking at first, mentioning Mum's previous problems with constipation. Mum is adamant that the pain was from her stomach and not her bowels (she remembers it now!). The Doctor asks for a urine sample and uses a testing strip which instantly tells her that Mum has a bladder infection.

Interestingly enough, it turns out that a bladder infection can cause memory problems, according to the Doctor.
"And there was me thinking your brains were dribbling out of your ears!" I say to Mum on the way out.

a trip to the seaside

Mum has been saying for months that I should take her out for day-trips when I come down, but she has shown little enthusiasm since I’ve been here on this visit. I decide that we should drive to the coast (about 25 minutes away) and have lunch down there. I pick a town I know to be on flat terrain, and which I know is less bustling than others, and we set off. At the seaside, Mum shows no interest in the views, the pleasant surroundings, or in anything at all. There are a good selection of cafés and restaurants and I ask Mum what she’d like to eat. I see her scan the shop fronts in view. She starts reading out notices and store names that she can see. I step in front of her and ask her to think what she would like to eat and say that we’ll find a place that serves it. She can’t think of anything she’d like.
I suggest “Fish and Chips” and she pulls a face.
“Oh no, I don’t like Fish and Chips.”
“That’s odd, Mum, because you told me a couple of days ago that you hadn’t been able to have Fish and Chips for ages and that you loved it. You certainly tucked into your Fish and Chips on that day!”
“Yes, I’d like some Fish and Chips”, she says.

After our meal and an ice cream which turns into an ordeal of keeping the drips off Mum’s clothes, we wander back to the car via some shops, buying Mum a gold watch, some items from the chemist and some clothing. In Marks & Spencer, Mum can’t find her size on a rack of clothing. I ask her what size she’s looking for and she says “12”. I help her to see the many many size 12 items right in front of her. Clutching them to her breast, she looks vacant for a moment and then says, “Perhaps we could ask an assistant?”
“What for, Mum?”
“Size 18, of course!”

I suggest that since Dad’s grave is nearby we should take that in on the way home. Mum agrees without any sign of interest. At the cemetery we haven’t walked a hundred yards before Mum says, “Shall we go back to the car now?”
“Mum, we haven’t got to where Dad is buried, we haven’t seen the tree that you planted or the memorial stone you paid for.”
Mum says she’s going back to find a toilet, and I wander on feeling a little aggrieved that she’s not interested in being here when I thought I was here for her.

On the journey home, I ask Mum what her wishes are regarding her funeral and burial, assuming she will say she wants to be placed with Dad. She tells me that she has no idea.

doctor's quiz

It’s been 6 months since I wrote to Mum’s Doctor about my concerns, and I’m fairly sure nothing has been followed up. I make an appointment and drive her over. At the Surgery, Mum is well-behaved and doesn’t interject much as I list a few of my more recent observations and concerns. The Doctor pulls out a sheet of paper and starts asking Mum some questions. First off, he asks her to remember 3 words: “candle, ball, shoe.” Then the questions begin:
“What day of the week is it?”
She can’t tell him.
“What month is it now?”
She thinks it might be August.
“And what season is August in?”
“It’s late Spring, at the beginning of Summer.”
The Doctor concedes that this year, particularly, it’s been hard to judge what season we’ve been in.
Next he asks Mum to subtract 7 from 100 and keep going. He offers “93” as the first answer.
“93….er…89….er….87?… er 82?”
The Doctor points to his watch and pen and Mum identifies them correctly. He asks her the name of the village she lives in and whether she knows where she is now. Both are answered correctly, with a touch of indignation. He then asks her to copy a drawing of 2 intersecting irregular polygons. For some reason, Mum feels that she’s completed her copy when she’s only drawn one of the polygons. Finally, Mum is asked if she remembers the 3 words the Doctor gave her at the beginning. She can recall only “candle”.

The Doctor sits back and tots up Mum’s score. I’m feeling a mixture of emotions: anxiety and shame mixed with a surprising relief that the Doctor finally has witnessed a little bit of Mum’s problem. While she’s still normal on some areas, there are others (numbers particularly) where her capacity is gone. I picture her brain like a Swiss cheese.

The Doctor decides to refer Mum to a specialist Elderly Psychiatric team who can analyse her in more detail and possibly prescribe drugs that might help. They will also be able to refer Mum to specific Council services. The Doctor also wants to take some blood tests, and we set an appointment the next day for blood to be taken.

Finally, I ask whether I need the Doctor’s referral to get Mum a “meals-on-wheels” service. He thinks not and gives me a leaflet on the local volunteer service.