christmas

I'm not spending Christmas Day with Mum this year. Bringing her to my home isn't possible any more: she wouldn't be able to manage the stairs to get to the bathroom. Besides, over the past year she has increasingly looked lost or unhappy when out of her new home and has visibly perked up when returned to its familiarity. The alternative is for me to spend the day at the Home with Mum and the rest of the residents (yes, they're all celebrating Christmas there rather than going to their relatives). I must admit that I'm choosing me this year and spending the day cooking a big meal with friends.

Merry Christmas All

[photo is the doorway into Mum's room, with cards]

a confession

I visited Mum yesterday and shopped en-route for some new clothes for her, as a Christmas present. It was pretty exhausting trailing around the various stores looking for her taste in light summery clothing in creams or beige when everywhere is stocking heavy winter party clothes in black and purple.

This leads me to confess something that I've held back on writing about all year. I've considered myself pretty honest and open about everything on this journey, good or bad, but there's one thing that I haven't recorded out of shame and that is what has happened to Mum's clothes.

When I moved Mum into the Home this time last year, she had a very fine wardrobe of clothes - in fact she had so many that her wardrobe doors could not quite be shut. Within about 6 weeks I was noticing that individual items were missing: I'd come to take Mum out for a meal and think "I'll just get Mum's favourite warm top" and it wouldn't be there. The lead Care Worker on Mum's household would say "Oh, it's probably in the Laundry", but these things never turned up again. By Autumn this year there seemed never to be anything in Mum's wardrobe at all, and I noticed that Mum's jewelry box had been forced open by someone who couldn't work out the hidden catch. Mum was invariably wearing something that I didn't recognise when I visited, and I felt dreadful about it. However, since Mum was content and oblivious to all of this, I didn't mention it to her.

But, you see, it's all my fault: I should have labelled all Mum's clothing before she arrived. I had, in fact, bought sew-in labels over the internet and had them ready. But in the days before she went into the Home, when she was living with me, I was run so ragged in dealing with Mum minute-by-minute that this was the one last job for which I never found time, and I handed Mum and her clothes over to the staff in a state of exhaustion. 

I've since felt so guilty about all Mum's lovely clothes going missing. I know they weren't lost in the laundry - someone took them and I think I know who. I arrived unannounced once and walked into Mum's room to find the lead Care Worker coming out of Mum's en-suite bathroom with the jewel box in her hands. I can't prove anything and I don't want to cause any problems because this is someone who is very attentive to Mum and is the only person Mum knows by name. I know that Care Staff aren't highly paid, and I'm sure it's tempting to relieve someone like Mum of her nice things since she is unlikely to notice.

So, along with the hundreds of pounds of clothing I bought yesterday, 

I bought a laundry pen and sat in a car park writing 

Mum's room number and name on the washing tags of each and every top, cardigan, slip and panty. I have no illusions that this will prevent the cashmere cardigan from disappearing, for example, but at least this time I've done what I can.

sticking to the story

My relatives, D&G visited Mum today. 

D rang, as usual, to give me a report. It seems that the cortisone injections to Mum's knees might be doing some good, because Mum was no longer confined to a wheelchair and was getting about with the use of her stick again. Apparently Mum was very bright and cheerful and seemed better than at the big party a few weeks back. They shared a nice meal in the Bistro downstairs where Mum apparently ordered Cumberland Sausage only to say "I don't like sausage" when it was served. [Mum is quickly becoming the Child I will never have]

D said, "I hope I didn't put my foot in it, but I mentioned about you leaving your job and she didn't know anything about it."

I told her that I'd planned to keep the news from Mum until I had confirmed my arrangements. There's no sense in confusing Mum with plans about travel when I might be held up for a few months selling her apartment and getting my own affairs in order. D reassured me that Mum had very quickly said, "Oh, well he was never happy in that job anyway and I've told him for years that he should go overseas."

Whilst that isn't quite true, I was glad to hear that Mum was tacitly supporting my decision.

When I rang the Home, however, I heard a different story. 

Apparently, Mum was in tears and very distressed after D&G left, worrying that I had been "sacked" and would never get a job again. I spoke to Mum and told her that I hadn't been sacked, that the company had offered us all a package and that I had decided to go for it so that I could do some travelling. By the time I mentioned travelling, Mum had already forgotten the package and was saying "but you'll need some money for that". I think there's going to be some turbulence ahead for Mum as she remembers fragments of this conversation. I've explained the situation to her Care Worker so that she can correct Mum when she distresses herself.

As soon as I've worked out what I'm going to do I'll have to start telling Mum a stripped-down version that I can repeat and repeat like a bedtime story until she knows it by heart and owns it.

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.

big badda boom

So we had the big family do today: the one that my relative D organised to celebrate my Mum's 80th in front of the wider family.

My day didn't start too well. I'd been up until 2am burning a slide show to disc and setting it to music (a desperate attempt to regain some sort of input in a day that had been taken out of my hands). I woke at 7am and hurried across the country to pick up my Niece, only to find that I could have slept in an extra hour since the clocks had gone back the night before... We got to the Home in good time and found Mum in her wheelchair, unable to take a single step now, so that I had to lift her up and place her in the car seat. She made horrible noises of pain even though I was as gentle as I could be.

When we got to the venue, it was beginning to spit with rain, but I had my golf umbrella prepared. Mum still complained that she was getting wet [ * important]. We got her inside and found that the function room was upstairs and there was, of course, no elevator. Mum announced that she needed the toilet and my Niece and another relative took her into the Ladies. Then the relative came out to tell me that my Mum needed a new skirt and underwear [ * Mum had thought it was the rain making her wet, but it hadn't been]. I drove back to the home with D, where we ended up having to search the laundry for clean underwear.

Back at the Inn, some male relatives had supervised Mum's ascension to the upper floor in her wheelchair, carried aloft like the Queen of Sheba. My female relatives got Mum changed and we began the meal. The food was excellent but Mum was pretty out of it: she didn't really recognise anyone save me and D and didn't take part in any conversation. I had to cut up her food for her. She was falling asleep before the dessert came.

We trooped back to the Home, where the Function room had been laid out very nicely by the Care staff for the second half of the celebration, where Mum's fellow residents could join us. There was a full buffet but none of us were hungry any more. Mum was quite bewildered now and didn't seem to understand where she was: she kept saying that she would need to go upstairs to use the toilet, and I couldn't make her understand that she was back home now and mere metres from her own facilities. While everyone else enjoyed the slide show, Mum couldn't keep her attention on the screen and ended up looking sideways at something else.

It seemed to me that poor Mum was being put through an assault course of demands and psychological disorientation and, not for the first time, I questioned who this was all being done for.

By 6pm the relatives were beginning to say their goodbyes and I had formed two conclusions about the day:

(1) I was glad that the wider family had finally seen where Mum is now living, and were impressed with the facilities

(2) D had learned that she can't do this to Mum again (I made sure she acknowledged it out loud)

An odd thing happened to me today. One of the new additions to our family by marriage is a capable chap I'll call C. During his student years he had done a stint working with the elderly and infirm and he spent the day being very practical and take-charge. He was wonderful with Mum. After a year of coping single-handed with this situation, it seemed like I was constantly chasing my tail today, running around looking for my car key (in the ignition), thinking that someone had stolen my umbrella (again in the car), losing the DVD with the slide show (again in the car). I was hot and sweaty and confused and I found myself wiping tears from my itchy eyes and telling C that I believed his competence was allowing me to finally let myself go to pieces a bit.

the hole in the wall

My last entry provoked an anonymous response which I found both comforting and illuminating.

The Commenter, who is in a remarkably similar position to myself with regard to her/his Mother, reassured me that my feelings of coldness and distance are sometimes a necessary protection for the Carer.

But I was particularly struck by a wonderfully apt description of how it feels to talk to our relatives with dementia:

"It's like I'm trying to talk to her through a hole in the wall and the hole is getting smaller and smaller."

I would have been delighted to come up with such a perfect simile. Somehow, for me, the more precisely I can describe an event or situation in my writing here the more tolerable I find it. I can only hope that my anonymous friend gains an equal comfort.

grief and guilt

Just to lighten my mood [!], I've been reading Andrew Holleran's novel, "Grief". It's a Platonic exercise in which a rather thin plot exists to enable various archetypes to hold forth on their particular experience of or views about Grief, so that the book ends up investigating the subject from many different perspectives. I know, I know... it sounds like a real riot. For me, it's a return to a writer I used to venerate in my 20s.

Anyway, there was a statement midway through the book which caught my attention, since it brought to mind something that I've often thought about since my Dad died:

"When your parents die, you know, your audience is gone. You really have no one who cares about what you do. But I think somebody has to care about you - someone has to think you matter"

When my Dad died in 1999, I was already writing in my journal that it was the end of historical certainty for our family. I already knew that my Mother could not be relied upon to recall events from our childhood or even from the minute before. She was no longer a reliable Witness to our lives. I didn't yet understand the reason for that in those days, but I knew for sure that Truth had died with my Father. And for that I grieved. Now, of course, the situation is closer to what is described in the quotation above. Even though my Mother is still alive, she is not there to care, in any real sense, what I do. There is no point, indeed, in even telling her things that would only serve to confuse her. She's not even sure who I am, sometimes, unless the staff have been reminding her all morning that I'm on my way to see her. I visit her as I would her grave. *

There's also another pertinent remark, in the final pages, which I won't quote other than to say that it points out that a Carer can potentially make an expiation of their lot, assuaging some guilt through a situation which allows them to act selflessly. This idea hit home, hard. All along I've felt a degree of unreality about the way I've cared for Mum. My actions were outwardly those of a loving Son, but I felt cold inside and experienced a growing guilt about that disparity. It has slowly become easier for me as I've done more for Mum. Maybe I feel that I am a slightly better person for having done all this for her, or maybe I've just got better at presenting the facade and it's comfortable to hide behind it, a small mean unworthy thing rattling around inside a shell. 

At some point, does it even matter any more what motivation, or lack of one, lies behind a caring action?

*[I'm shocked that I wrote that]

birthday: part II

Mum was inching her up the corridor to her bedroom when I arrived. She was unable to work out how she could turn around to greet me so she froze, clinging to the railing with one hand and holding her stick in the other. Her face was bright red and peeling, as if from a bad sunburn. A staff-member told me that they'd found some face products in Mum's bathroom again - she's under instruction not to use these as they encourage a fungal infection that is inflaming her skin.

Mum's white hair and red face seemed cruelly mocked by her white blouse and red skirt.

I gave her my arm and we slowly made our way to her bedroom. I've never seen her move so slowly and in so much pain. I kicked myself for not buying her a 'walker' rather than this silly photo frame.

When we got to her room, I let her use the toilet in privacy, but she had to call me inside since she couldn't find the toilet paper or the toilet flush (she was turning to her right when both are to the left).

I sat next to Mum on her bed to show her the digital photo frame. The first picture that came up was one of Mum and my Dad. Mum poked the glass, leaving a smudge over his face. 

To my horror, she asked: "Tell me, who's he?"

I died inside.

We watched just about all of the 400 or so photographs as they displayed. It was so difficult to keep Mum's attention on the slideshow, as she kept looking away to the bathroom door. I found myself announcing what we were seeing, because hearing her pathetic guesses was heartbreaking. By the end she was getting better at spotting childhood "Greg" but she occasionally turned to me when my Dad came up and said "that's you, of course." Mostly, it seemed, she just wanted to go to the toilet again.

Afterwards, I got 2 plates and some cutlery from the kitchen and I cut us each a slice of the cake I'd brought. It was a shame to cut into it, but it proved to be equally delicious as it was beautiful. Mum didn't use her fork but instead grabbed chunks of rich chocolate sponge and chocolate truffle sauce by hand and crammed them into her mouth, making a mess everywhere. When she had eaten most of her slice she became distressed looking down at her chocolaty hands and told me that she couldn't understand how they'd become so dirty. I fetched some napkins.

             

After cleaning her up and helping her down to the Lounge again, I started to feel very sad and I decided that I had to go. In any case, I was supposed to be at work this afternoon and it was already 4:30pm. I had a two-hour journey home ahead of me, followed by a delayed "afternoon shift" that would take me through to midnight or later.

On my way home I pondered my unhappiness. I realised that I had put myself through a LOT of stress to get every detail perfect for someone who could no longer appreciate these things. Who had I really been doing this for? Myself, maybe? Mum would have been happier to be taken out somewhere instead. It's late and I'm exhausted ... I'll have to come back to this.

* I have chosen photographs that make Mum look a LOT more lucid than she proved today because I just can't bear looking at the ones I've discarded.

birthday: part I

I've spent the last week in a continual panic, trying to cope with an increasing workload piled on top of me by my increasingly unavailable Manager. At the same time I've been trying to get everything in place for my Mother's 80th birthday (today).

As I've mentioned before, one of my relatives has taken it upon herself to organise a family get-together for Mum at the end of the month, and has taken the preparations so far out of my hands that I have not been allowed to invite Mum's closest relation "because there's not enough room". In many ways, what's being planned for the end of the month has little to do with Mum any more and is really about my relative, who always exhausts herself micromanaging these things and then has a nervous breakdown at the event, when her guests want to do their own thing, and declares that she's never going to organise ever again!

I decided that I couldn't let today go by without marking it in person, just Mum and me.

To that end, I found the most wonderful cake at the weekend, which is a chocolate sponge surrounded by what look like Shoji screens. The chocolate bird's nest and rose are somewhat over the top, but I'm excited at the prospect of eating gold leaf!

I also bought a rather expensive but elegant Sony digital photo-frame and I've spent the last 4 nights delicately teasing photographs from albums (quite scary when they've been glued for decades) and scanning them into my computer in order to transfer the images to the frame. I was up until 4am Friday, Saturday and Sunday night, and 2am last night, working until I couldn't safely wield the blade any more. Last night I painstakingly re-titled the images with numbers, hoping to display them in an order showing Mum's lifetime, but when I finally came to upload them at 2am this morning, I found that the frame's slideshow ran according to other criteria and photographs from the 1940s and 50s were, for some reason, distributed across the other decades. 

Oh well, nothing I can do about it now. And the photos do look amazing. I hope she doesn't cry. I've telephoned the Home and made sure that they're expecting me. They've agreed to present their own birthday cake with the evening meal, so that mine is the first that Mum sees.

It's midday and I'm about to set off.

Happy Birthday, Mum!

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.

the right to die

I noticed this story on the BBC News website today: once again someone has suggested that those with Dementia should be allowed to end their lives if they feel they are ‘a burden’ to others.

This brings back memories.

When my Father died nine years ago, I went home to help Mum with the funeral and ended up staying for a month. I had to go through all their papers as part of my role as Executor. Hidden away in one part of the study I found a stack of magazines from the Euthanasia Society. It turned out that these were Mum’s. She tried to tell me her feelings on the matter, which I suspected were somewhat parroted. Having just lost Dad, my sympathy with these ideas was not great. I rather angrily threw the magazines away with the junk.

Over the intervening years, Mum’s concern shifted from wanting to end her life at a time of her choosing to being terrified that she might be cremated alive. “When I die I want you to make sure that I’m dead,” she would anxiously tell me and I would picture myself hesitating over her prone body with a hammer. She even asked her Solicitor if she could put a stipulation about it in her Will, but we pointed out to her that by the time the Will was read it would most likely be too late. We talked about a 'Do Not Resuscitate' order, something I'd seen countless times whilst watching 'ER', but nothing was ever drawn up.

Now that Mum has Dementia, if anything I feel more resolute on this issue.

You see, I know that Mum can be so very easily influenced to believe strongly about just about anything. She is incredibly dependent, not just physically but mentally; so much so that I need to be extremely cautious what I say around her. Her ‘Self’ is so wispy and undefined these days that any strong statement from me could distort her into someone unrecognizable. I’m not going to be using words like ‘burden’ around Mum, ever.

And just because Mum is losing her wits, it doesn’t mean that she isn’t capable of enjoying the attention and stimulation she’s getting at the Home. She’s happier now than she’s been for a few years.

If Mum was sound of mind and suffering from something incurable that was only going to get worse and more painful then sure I would countenance her right to make an informed decision about the manner of her passing. But she lacks the ability to make such a choice now.

My reaction to this news story is based entirely on my experience of one individual with Dementia and I'm not claiming any authority on the subject. I haven't even read the originating article that prompted the news report. I just worry about less sympathetic carers influencing their relatives or clients for nefarious purposes. It's a gut reaction and I may revisit this subject another time.

I will survive

Folks, can I point you to a new link in my side bar for the blog 'citygirltalks' ? 

I've linked specifically to one post because it's a history of her Mother's long illness all in one entry and it's all useful. There's some of it I know already and some I hope never to see personally. I find it very moving and I love the sentiment at the end: 

" you will survive. "

Thanks, Citygirl.

(by the way, although I've linked to the one entry, there's plenty more to see in her blog)

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".

nobody home

It's taken me 8 months to clear Mum's old apartment.

I live 5 hours away by car and I'm usually too exhausted to drive down at the weekend. Those weekends I could spare I've usually visited Mum in her new place rather than get on with this job.

But now it's done. All I have to do is call a handyman to come and touch-up some woodwork in the bathroom, replace the stained carpet there, get the place professionally cleaned, and then I can put it on the market.

Mum was living in this flat for 6 years but you wouldn't know it. She refused to have pictures on the walls, preferring to stack family portraits beside the boiler in the hall cupboard. Maybe she found blank walls soothing. Maybe they mirrored the growing blankness within.

6 years ago, I can remember being annoyed by what seemed Mum's meekness, her wish not to disrupt the authority of the plasterwork. Now I'm grateful that I don't have to have the place redecorated for sale.

Thanks for making it easier for me, Mum.

B*st*rd Lady

Yesterday I was down in Sussex, finally clearing the last of Mum's possessions from her old flat.

On the mantelpiece I found a list Mum had drawn up of all her fellow residents and their flat numbers, perhaps when her memory for names was faltering. Looking down the 27 names, I saw 'Joyce', 'Dori', 'Vanda', 'Barbara'........and 'Bastard Lady'.

I was highly amused. Growing up in this family I certainly never heard my parents use such a word, so it's comical to find my prim Mother even thinking of it. I wonder what the lady in flat 2 ever did to Mum?

Anyway, I spent hours moving heavy trolley-loads out of the flat and taking them either to the charity shop or the local 'household recycling point'. The corridor from Mum's flat is long and twisty and there are double doors at the exit that were hard to navigate on my own with a trolley. Directly by these doors is a communal lounge, where a group of about 15 residents were sitting and passing the day together. I recognised Mum's neighbour and several other faces. I got a nod in return for my 'hello'.

No-one asked about Mum.

No-one stirred to help me with the doors.

Bastard Ladies

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.

Tokyo... 1968-70

I have no idea what age I was here - maybe 2? Anyway, I like the composition. The girl on the right was called Hisako and took to me as if I was a little white-blond puppy. Dad was the local Vice President of an international US travel firm and he and Mum hosted lots of cocktail parties for ambassadors and visiting Hollywood stars. I tell everyone that being exposed to Judy Garland and Ethel Merman at such a vulnerable age explains everything...

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.

there's talking and there's listening

“Sorry I didn’t get to see you this weekend, but I was very tired and I figured that you’d already had some visitors this week.”
“That’s okay, Dear. So, do you think you’ll be able to come and see me in a few days?”
“No. Sorry. It’s Sunday now, so I’ve got a week’s work ahead of me before I could visit.”

[pause]

“Okay… Right, I’d better go and… I’m just thinking I should go and ask to have a … to use the pool* tonight so that I’m clean before you arrive.”


[*bath]

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?"

bookends

"Long ago it must be
I have a photograph.
Preserve your memories.
They're all that's left to you"

Bookends theme, Bookends, Simon & Garfunkel

It's a haunting tune, but what they don't say is that you're lucky if your memories are left to you.

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.

soap opera

I'm beginning to learn more about the new characters in Mum's life.

I was with her on Saturday. I took her for a cosmetics run to a large department store, where we allowed the Clinique girls to go to town on her face and sell her some new playthings. The staff quickly worked out that giving Mum a choice wasn't a great idea and that she takes suggestion well. They cooed over me, saying that she was lucky to have a Son like me to take her out. It made me wonder what normal Sons get away with. I don't feel like that brilliant a Son.

Anyway, back at the Home, the Screaming Lady was mostly asleep at the table and when she was awake she was feeble and whiny and sounded very scared. I did hear her refer to "those bitches" but she was immediately challenged by a staff member, which I found reassuring. I'm a bit sorry for her now, as she sounds very confused and seems to live in a frightening world where everything is being taken away from her. As I keep telling Mum, this is a troubled lady, but Mum no longer has the subtlety of distinction necessary to understand this. Like an child in a playground she categorises people only as 'nice' and 'nasty'. I try to tell her that every drama needs to have some conflict and that she's now living in her own private soap opera with Screaming Lady as her Nemesis.

'The Gentleman', is my new focus of concern. He was constantly wandering off down the corridor, past his own room and disappearing into those of others. I made a point of running after him whenever he was headed for Mum's room, and the staff member on duty caught on and began coming with me. 'The Gentleman' kept insisting that they were all his rooms, which claim we firmly refuted. When the staff member asked him what he wanted in those rooms, he said that he was looking for cash, which pretty much answered for me the question of what happened to the £100 I left in Mum's purse all those weeks ago. At one point, the staff member took him to each one of 'his' rooms and pointed out that they all belonged to different people and each had that person's name on the door. 'The Gentleman' strode back, apologetic and saying "You're quite right", but 2 minutes later he was off down the corridor again. He's too much of a handful when there's only one staff member on duty. I need to speak to the Manager about him.

So we have a Nemesis and we have a Gentleman Thief.

Also in the lounge was a new resident I hadn't met before. At first I wondered why she was in the Home, as she seemed normal enough and made sense in conversation. But after a while I noticed that her conversation was cyclic and came around and around to possessions of hers that had gone missing. Now I knew that she and Mum had clashed over a black coat in Mum's wardrobe to which this woman laid claim. The woman's own coat had then been located in her own wardrobe, but this didn't stop her retelling the story about 5 times while I was present. When I circumvented her on the last occasion to say that I knew all about it and that Mum hadn't taken her coat, her face fell and she asked for the telephone and started weeping, holding it in her hand. We had actually met this woman earlier in the department store, shopping with her daughter, and she was wearing her black coat...

So that's a Nemesis, a Gentleman Thief and an Accuser.

Then I met Mum's Special Friend who, again, seems quite normal, if maybe a little fragile and excitable in temperament. She sat next to Mum gazing adoringly at her, as if Mum was made of diamond, and drinking up anything that Mum said and repeating it back to us both. She seemed positively ecstatic to meet me (so she's definitely nuts). Mum doesn't even remember her name, which is slightly embarrassing. She's told me before how her new friend hugs her and kisses her goodnight, but I was amazed to hear that they've even shared a bed on occasion when Screaming Lady was prowling the corridor.

Oh my, this is a progressive soap opera! It seems we've got a potential Lesbian love interest, too.

I'll be back after these messages from our sponsors....

if the shoe fits

A while back, on one of my visits to Mum, we went shopping for shoes. Mum has suffered from enormous bunions for a few years now, and it turned out that she needed a size 4 shoe on her left foot and a size 5 on her right. Thanks to the pesky new technology at the till we didn't get away with 'accidentally' picking up mismatched sizes from the shelf, so I ended up having to pay for 2 sets of shoes in each style.

Recently, Mum's feet have swollen up even further and a staff member at the Home rang me this week to suggest that I buy some especially-stretchy numbers from the 'Cosyfeet' catalogue. I got her to sit with Mum and pick out the styles and colours she wanted, and then the staff member rang me back with the catalogue numbers. She's gone for the Eliza slipper and the Katie shoe, in a size 6 this time, and I've had to buy matching Velcro extension strips for when Mum's feet swell even further. These are both pretty ugly examples - there are nicer ones in the catalogue, in my opinion. I'm tempted to see these choices as another sign of Mum's decline, but then it could well be that she was steered towards them by someone who doesn't know her tastes the way I do. The trick these days is how NOT to influence Mum's decisions.

I'm still going to use a wheelchair when we go shopping, though. It can shave a whole hour off a store visit!

throwing mum away

It’s like an archaeological dig clearing out a parent’s home. Every cupboard, every drawer divulges some artefact that you remember from elsewhere in your ancient childhood.

Then there are the geological strata of purchasing to go through, where useful items like, say, batteries have been bought, stored, covered by something, then bought and stored again in repeated cycles. Empty canisters, used products are added to the heap, unaccountably. Peeling away these layers of carelessness is depressing. Once again, the bin bags are swelling as I come across new stashes of detritus. Everywhere there is evidence of Mum trying to carry on her life but failing, and stashing the evidence rather than disposing of it. This chaos is indicative of her mental state, it somehow is her, and I’m ruthlessly throwing her away in handfuls.

I am in her bedroom now. The bed is one of those electrically adjustable ones. It’s frozen in a half-up state. I find that a cable has been dislodged. How long has it been like that? Is that another reason why Mum started sleeping in her chair in the Living Room? This is all so pathetic that I feel tears rising.

I sit in the Living Room trying to concentrate on the flickering, malfunctioning TV, eating my microwave meal. It’s too quiet and lonely here, and I write as someone who normally looks for solitude. I think about Mum’s existence here and the tears come.

bridge

I’m ending a call with Mum and, as usual, I ask if anyone has called her. No. So…has she called anyone? No.

At this point, it is my habit to suggest someone that Mum might telephone, and the last few times I’ve suggested ‘J’, each time provoking an enthusiastic reaction.

This time, however, Mum says “Now I’m glad you mentioned that because I can’t find my address book…” And Mum launches into a detailed story of how, when she came here, she had packed her (one) suitcase and it had been “full to bursting” and that she remembered putting the address book in a front pocket on the case, but that when she came to unpack it wasn’t there and she wonders if maybe it fell out on her journey.

This is confabulation, a sort of mental bridge that Mum has built across a chasm in her memory to help explain her current situation. She has been doing this for a year or two now. It must be half-conscious because she accepts my own version of events without any argument. I remind her that she didn’t pack or unpack, that I did all her packing and that there were several cases and a couple of car-loads of stuff. What’s more, I say, every time I visit her she tells me that she has no address book even though it’s either lying in plain view beside her telephone or in her dressing table drawer.

Mum grasps onto the idea of the dressing table drawer and says that she’s going straight to her room to look for it.

“And then you’ll phone ‘J’?”

And I get the usual enthusiastic reaction as if the idea of contacting ‘J’ has come right out of the blue.

Happy Easter

I’m down in Sussex in my Mum’s old apartment, trying to make some progress in clearing the place. I’m noticing that every time I make a start on a task I suddenly remember a telephone call I need to make or a blog entry I need to compose. The jobs before me are each manageable in their own right, but I panic at the huge cliff-face rather than focussing on the first hand-holds that will start me on my ascent. This is very peculiar after the huge steps I took in December – why am I freezing now?

So, anyway, for a few minutes I’ll record some news that I’ve missed out over the past few months.

Firstly, Mum is generally very happy in her new home. I never find her in her own bedroom when I ring her – she’s always in the Lounge. She has made a close friend on the household and is very fond of the staff members, even if she can’t recall anyone’s name. She praises the food and loves the way they do her hair. There seem to be some group activities going on from time to time.

Secondly, Mum has had visitors at last. My Brother-in-Law and my Nieces turned up in the country on a whistle-stop tour and visited Mum in February. They told me that they were very impressed with the Home, which came as a tremendous relief to me. D & G also visited and took Mum out to lunch one weekend. They were equally enthusiastic about the Home and told me that I couldn’t have found a better place for Mum. It’s stupid how important this is for me to hear.

I’m a bit disappointed that no-one else has been in contact, though. Those of Mum’s friends who’ve found out where she is now living have all said that they would call her, but they haven’t. It’s like a taboo for them, like if they don’t speak to her it won’t be true. I suppose they just want to remember Mum as she was, but it would be lovely for Mum if they’d call. Yes, she’s a bit confused about where she is and what day it is, but she’s still the same person. All that’s changed is that she’s being looked after now (in a “hotel”, if you believe her).

Right…. I’d better go and get busy with the bubble wrap.

Happy Easter!

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.