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."