Missing

So – just to bring you up to speed, or remind you, or let you know: my mother died just before Christmas. Don’t worry, you don’t need to feel sorry. She was old and sick and had a poor quality of life despite the best efforts of a number of people; it was her time. She believed in life after death and was ready to go and be with her family again.

I am going to tell you about her dying and her living with dementia Don’t read it if you might get upset.

My mother suffered from advanced dementia, and until last June had been living with us. As her mental condition and physical frailties worsened, it became increasingly apparent she was not safe to stay at home any more so we moved her to a local residential care home where they looked after her far better than I could manage with my intermittent checks between travelling away for work. I took it hard. I felt I failed her because I knew that it would have been the last thing she wanted. Fortunately she didn’t remember that, even though I did, and so she was very happy in her new home. Dementia can have some upsides to it.

When she moved in with us, we built a granny annexe and designed it for wheelchair access. We didn’t make it easy for dementia, for example by making the kitchenette logical. She moved in after Christmas and by Easter we knew something was badly wrong. Finally we had the diagnosis. It was May 2008.

I remember one day, fairly soon after the diagnosis, a mental health worker came to see her, and talked to her in that horrible high-pitched voice about doing some knitting. I had suggested something like that might help her come out of the shell she was constructing.

“Shall we do a little bit of knitting, dear? You’d like that wouldn’t you?”

Well, really! She was suffering from early stages of dementia, not a backwards toddler.

“No,” she said firmly. And set her mouth and turned the television on very loudly.

When the mental health worker told me that my mother was “uncooperative” and “difficult” I laughed at her and said if she had spoken to me in that tone of voice I’d have stuck the knitting needle through her eye. So I got a worse label and we never saw them again because my mother had “chosen not to accept help.” Idiots.

Dementia is a slow disease. We went through phases, and because she had vascular dementia they were often sudden and pronounced. Yesterday she knew how to turn on the television, today she had forgotten. Yesterday she knew all the grandchildren, today perhaps two of them. She wound backwards through her life, shedding people and places as she went; talking about me as a child, then about meeting my father, then about her parents, then settling on a loop asking about the weather every sentence because she remembered nothing more.

“Is it cold out?”

“A bit chilly, nice and sunny though.”

“Oh, that’s nice…is it cold out?”

And so on endlessly. I am not covered in glory here, least of all with my snapping and snarling at her stupid bloody questions.

The December before last she suffered some internal bleeding which wouldn’t stop because she was on warfarin to thin her blood (to reduce further strokes and memory loss). The doctor and I had a long and earnest conversation about which death was worse: bleeding out or stroke. I agreed bleeding out was worse and we took her off the tablets. She declined more rapidly.

Last December she developed problems in her foot associated with her diabetes and poor circulation (no blood thinners!) and eventually had to have a toe amputated. The disruption, operation and subsequent infection all proved too much and her lungs gave out soon after. She had pretty much everything wrong with her: asthma, emphysema, arthritis, rheumatism, diabetes, heart arrhythmia, furred arteries, cataracts, deafness, stomach problems (as a side effect of medication) and, of course, vascular dementia. One of them had to get her in the end, although she eluded them nimbly until well into her 88^th year.

Then my mother finally died. She didn’t quite want to, but she couldn’t find the strength any more. She wasn’t afraid or worried, because her horizons were too close for that. I sat with her, holding her hand, and Sigoth and various grandchildren waited with us. One moment she rattled a breath. Then nothing came after it.

We scattered her ashes a couple of weeks ago, on the day after her 88^th birthday.

My mother’s death was not what I expected. Of course, my actual mother, the one I remember from childhood, vanished years ago, eaten by dementia almost before we even knew it was there. It crept up on us and her from the shadows. My family didn’t get dementia. We have heart attacks and strokes usually, or general immobility and decay from rheumatoid arthritis. We don’t have brains that melt. At least we didn’t until this time round, so I was unprepared for the symptoms and assumed my mother was being bloody-minded when she wanted me to do basic things like turn on the washing machine, because she had “forgotten how”.

“Don’t be ridiculous!” I told her as she sat there with her list of jobs she wanted me and Sigoth to do on our precious Saturday off work, complaining that we never came to see her.

“She’s doing it to get attention,” I thought. Because sadly that was not an unlikely explanation; my mother was a needy individual only too often.

Of course, during this slow evolution into a new person she was aware of the changes and frightened, confused and angry in turns. Thanks to dementia, we were glad when she was finally so ill she didn’t know what was happening at all and so was not afraid of it.

We actually had it easy of course, if this kind of suffering is a competition. She didn’t wander, she didn’t get angry or aggressive, and she didn’t do too many dangerous things (apart from sticking the knife in the toaster and fusing the lights) because she became incredibly passive. As a responsible adult she had always preferred to be looked after, and my father had joyfully accepted the challenge. This attitude became more pronounced over time, so there were few “issues” as her condition worsened. By keeping her at home with us I was the best person to understand her fraying mind and predict what she would expect, so she was comfortable and rarely disoriented enough to become angry. She was described as an “easy” patient, because obviously the most important thing about someone with dementia is how much they disrupt the rest of us. As a result their behaviour garners them blame or praise for being bad or good.

I expected to feel sadness, guilt, relief, regret, possibly anger and even loneliness. I felt comfort and love, both of which were entirely unexpected. I felt that finally she did appreciate me – if only I had known that while she was alive! I didn’t feel as if I had let her down or done the wrong thing, despite the fact that for a number of years she had been letting everyone know my failings. She said some pretty terrible things at times, most of which I ignored as symptoms of mental imbalance, but some hit home and I carried with me. Some of them were deserved.

The final year was hard going, and in the end it was just waiting, some days with more patience than others, for her to die. I had plenty of time to be ready for the actual event. Every day I saw her was a small guilty disappointment; every time the phone rang, I wondered if this was it, the call, until one night at 3am it really was the beginning of the end.

My mother and I were not close. It helped as she declined, so that I did not feel such terrible loss; but it made continuing as her carer harder. Dementia gets you either way.

In contrast my father’s death was sudden and devastating. He died in 1992, just as I was home to tell my parents about the imminent arrival of Offspring Number 4. Dad was really pleased and excited; he liked children. That evening I took my mother out to a concert for her birthday present and when we got home my father was dead. He had had heart failure during the evening, after going to bed.

I was furious with him for leaving me to deal with the family he supported, which included my elderly aunt as well as my mother, to deal with a bankrupt business and a derelict shop property, to re-house my aunt, sell the shop, re-house my mother, sell her house and all while pregnant, working full time and having three other young children. Sigoth got me through it somehow, although we struggled at times under the pressure.

I’m not the kind of person who would do well in one of the caring professions. I get bored with other people’s problems. I get frustrated with slowness. I could be ready to rip the throat out of a doctor who talked down to my mother, but I didn’t want to spend time with her over a cup of tea repeating how warm it was or wasn’t outside. She didn’t remember if I sat with her or not anyway.

Meanwhile, my memories of my father are not sullied by him declining until I no longer wanted to see him. Dementia destroys other people’s memories of the living person and replaces them with doddering, shambling simulacra. It’s the Zombie Apocalypse.

Death isn’t noble, but sometimes it relieves and even pre-empts pain.

The final gift that dementia leaves us is fear. Every time I forget something, every time I have to check if I locked the door or turned off the light, every time I can’t recall a name or a film title or where I left my glasses, on each of those occasions a little voice now pops up and says cheerfully:

“Hi there! Are you getting dementia? Is it all going to happen to you?”

Meaning…

Am I going to drive my family mad and break their hearts and call them names and take so long to die that I turn into a stranger first, like some kind of alien shapeshifter?

Am I going to have carers who make jokes I don’t understand, often about me?

Will I forget to eat or drink and then be hungry and thirsty all the time?

Will I soil the bed and not understand what is happening?

But before I get that bad, will I experience those things anyway and yet still know what they mean and suffer terrible shame and humiliation and confusion?

Thanks for the memories, Dementia.

I want to be clear that every dementia journey, like every human, is unique and special. My mother’s, and my, experiences will have some similarities to others, and some quirks all our very own.

If ever anything taught us the Buddhist notion of patient acceptance, this is it. Or as a Christian might put it:

God, give us grace to accept with serenity
the things that cannot be changed,
courage to change the things
which should be changed,
and the wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.

Amen.

Never give up, never surrender, and never blame yourself. It is what it is.

Namaste.

Letting go

My dears, this is a sequel to my post about my mother’s move to the care home. She’s doing well, by the way, and much perkier than before. She did have a small stroke due to the pressure, but has since been doing splendidly, although I am not sure she is quite aware of who I am all the time.

Since her departure, and in between other trips to various parts of the country, I have been trying to do paperwork related to her new status. It’s actually pretty much the same as if she had died, while she is in fact living happily just down the road.

So – I have been battling in no particular order with British Telecom, the electoral register, Social Services financial assessments, the hairdresser, the Department for Works and Pensions, the Lifeline provider, GPs and pharmacies, her friend in London, domiciliary care, carer’s support, the library and the chiropodist. I was also advised to set up a funeral plan for her, as she didn’t have one. In a couple of weeks I will be meeting a terribly earnest woman to talk about options for caskets.

This weekend I have been trying to clear out the annexe where she lived, deciding what to keep, what to bin and what to send to the charity shop. Most of it has gone into boxes labelled “charity shop.”

A few years ago my mother asked me what I would do with her beloved belongings when she died, and I told her the charity shops would receive most if not all of it. She was appalled.

“But they were gifts!” she wailed.

“Not to me,” I said.

“From my friends…”

“Not my friends.”

“They mean so much to me…”

“I don’t know who gave them to you, when or why. They don’t mean anything to me. They might as well go to someone who will enjoy them because I think they are awful.”

I was skirting around my true feelings of course and may possibly not have said all that out loud. I probably did though. I don’t lie to my mother.

She tried to persuade me to keep them and I stoutly refused. Too much dusting for one thing, and too much searing pain in the eyeballs for another. I am not fond of those kinds of objects.

So here I am, putting things in boxes and reminding myself that she won’t be coming home. You don’t get better from dementia. She really won’t wake up tomorrow and remember who she is. It’s not Dallas.

We took four large bin bags of clothes and shoes to the charity shop yesterday. My mother loved her clothes and shoes. I reckon there’s another two or three bags to go, and that’s not counting the generously packed suitcase I took to the home, nor the pile of laundry that I will take to the home tomorrow to add to it.

I didn’t know how I would take this clearing out. I thought I would get upset. I thought I would get overwhelmed. I didn’t. I am tired, but it’s quite hard work and we have been at it all day.

I feel I’m in a kind of limbo. I can’t mourn for her because she is happily ensconced in front of a television less than three miles away. I don’t feel guilty, amazingly enough, because it’s easier to do it now than it would be after she died. I just don’t really feel anything about it at all, except weariness.

So that’s all good. I mean, there is no wailing or gnashing of teeth. There is no trauma, just a gentle drifting and waiting for the end to come. Each time the phone rings I am nervous, in case its The Call, but otherwise peaceful.

I am thankful she is well cared for and the staff seem kind and patient. She is so happy there it is clearly a success, and that is not a poor way to go.

I worried about what could go wrong, but this time it didn’t.

May you be as lucky as we have been, and find peace through difficult times.

Namaste.

 

 

Echoes

It’s been a while since I last wrote on this blog and that is because I have been dealing with echoes and ghosts; which is just a pretentious way of saying “my mother”. To recap, my mother has dementia and I have been caring for her in a partial way, with lots of support from Social Services, while she slowly and surely unravels before my eyes. There is an episode of Doctor Who called (I think) “The Silence in the Library” where someone’s personality is caught in a machine. At first it sounds as if they are there, and all that needs to be done is to find a way to restore them to their body. Then you realise they aren’t there and it’s just a recording of their final thoughts, on a repeat and fade until finally they are let go. The person who was my mother faded out a long time ago and all there have been are echoes of her occasionally surfacing in a grim pretence. Such is the experience of dementia carers, letting go one brain cell at a time.

It all began a long time ago, probably not long after my father died in 1992. Despite a successful history of working as a senior PA to some very demanding Directors in multi-national organisations, she seemed not to be able to cope with the basics of everyday life. My father had done the traditional thing of managing finances and bills. He even did the shopping because he didn’t trust my mother to stick to a budget, and he was probably right. She was impulsive and often unrealistic about what they could afford. However, she did at least know how to write a cheque and read a bank statement, even iif she didn’t feel confident discussing savings accounts and interest rates with bank staff. So I stepped in and helped then gradually took over managing her money and bills. To be honest I think she could have done it but preferred not to if someone else would; that was the way of her, and I had grown up with the expectation that my mother was someone you looked after.

When we as a family moved back up north, she followed. I found her a flat in Sheltered Accommodation as an insurance for later years when she would grow frailer. She was happy with that and settled in. She had lots of aches and pains, and a very good doctor who gradually worked through all the symptoms and decided her diagnosis of arthritis, given 20 years earlier, was in fact wrong and she had spondulitis. He arranged an operation to sort out a problem with two collapsed vertebrae and during her recuperation she contracted viral meningitis in the hospital and died. They resuscitated her but she was never quite the same. Not long after that we began to notice she was not really quite as mentally competent as before, and I suppose her spiral into dementia had become a very real and present thing, either brought on by the trauma or coincidentally exposing itself for the first time.

What was that like? She was frustrated of course, but so was I. We didn’t know anything was wrong. It seemed she was deliberately trying to get my attention by saying she needed help with basic jobs she had been managing perfectly well only days or weeks before. The problem was, that my mother would behave in that way to get my attention anyway, even when I was a child, so I didn’t suspect anything at first.

As she struggled more, I began to suggest she consider increasing her care arrangements. She swore she didn’t have any care arrangements despite the fact she had carers every day to help her shower and dress. My spider senses began to tingle.

Things reached a crisis when I realised that she was eating bacon that was green (no, my dears, in real life green eggs and ham are not good for you!), and that she was mixing up her medication and taking completely random quantities of Warfarin. To be fair, you need a Ph.D in Mathematics to manage Warfarin doses anyway, because they involve Advanced Calculus in working out which colour and in what quantity you need to take them each day, and in addition this changes on a fortnightly basis depending on blood tests.

We talked it over and she said she wanted to move in with us, so we built a granny annexe and made it so. She couldn’t follow the discussions about planning the layout, which I took to be laziness. The day she moved in she claimed she couldn’t remember how to use the washing machine, which I took to be contrariness. A few weeks later, she listened to one of the Offspring playing the guitar, and observed it was a shame I had never learned to play an instrument.

The family froze. It was my guitar, and I had played classical music for years. My mother had tapes of me playing which she listened to after I left home for university. Something was wrong in a very big way.

I spoke to the GP and he arranged an assessment and eventually she was diagnosed with vascular dementia, for which there is no treatment beyond anti-coagulants such as Warfarin (which obviously she was already taking for other conditions). That was in 2008, and the dementia was already reasonably advanced. Her contrariness and laziness were in fact her brain falling apart at the seams, and I hadn’t realised. No one in my family had had dementia before. We had planned the annexe layout to cater for mobility problems but never for mental problems. It was a long time before we really understood what the diagnosis meant.

And so she has faded away, receding from me and returning to past lives where I cannot follow. She no longer knows her grandchildren; some days she may not be sure of me or Sigoth. Every day when I go to bring her through for dinner I listen at her door to try and hear her moving, frightened I’ll find her cold and stiff in her chair. Every day I wonder if she will panic because I am an intruder, and bring on a major stroke. Every day I hear her asking the carers the same question over and over again, on a loop, and inventing answers to their questions.

I admire her ingenuity at hiding her condition. She is expert at getting people to ask closed questions so she can just agree amiably. She tells everyone cheerfully that she makes herself lunch every day and doesn’t see anyone at all for days at a time. It’s all untrue but she can’t remember. She takes a bite of an apple or pear then leaves the rest because she forgets it. She has a permanent cup of cold tea at her side, equally forgotten. She asks me for a drink because she is thirsty despite the beaker of water next to her. She can’t be trusted with the toaster in case she electrocutes herself sticking the knife into it. She can’t work out how to change channels or volume on the TV or how to write a Christmas card or address an envelope. She can’t remember the way from our living room back to her sitting room. She is convinced that she can do everything for herself and doesn’t need any care, or indeed, receive any care.

She sings to herself in her chair, and is happy. She leaves the TV on all day for company, even when people call in. She smiles at people and reads out the headline from the newspaper over and over. She wonders about the weather out loud and recites clichés to sound like conversation but can’t respond to other people’s comments.

At Christmas we had to stop her anti-coagulants, designed to reduce the strokes, because of internal bleeding. She is at greater risk of mini- and major strokes than ever, and over the past 6 months she has slid away from me at a faster rate, disappearing around the bend of the helter-skelter while I try to follow.

We have been very lucky that she has not displayed any of the difficult behaviours that often accompany dementia. She isn’t aggressive or violent. She doesn’t shout or swear or hurl abuse. She just gets confused and stressed if her routine changes, so that a trip to the doctor can bring on another mini-stroke and another step down the stairs to a final oblivion.

She is no longer my mother of course. It used to be just me and her, after my father died, but now it’s just me. And her, over there in a different place, her own little island of dreams. There’s no bridge any more, no shared stories or memories. She sailed out past them some time ago, and now is living in her own childhood, before Dad, or I, came along.

Every day I care for her. Until recently when I went to the doctor and he told me that my recent asthma symptoms were in fact stress. That my heart palpitations were stress. That my sleeplessness and irritability and forgetfulness were stress, stress, stress. And that stress is Very Bad for your health. He gave me the look that said “things must change.”

I talked to Sigoth about the fear of opening the door to her room every day and he looked at me with the same look as the doctor.

I called in Social Services to do a review. They gave me the look too.

It was the look I had been giving myself secretly, when I was alone in the night. I knew they were right but I felt like a traitor and murderer. Because she always said to me she would rather die than go into a home.

Yesterday we took her to a local care home and left her there, like an abandoned kitten.

We didn’t tell her before that morning, even though it took some weeks to plan. Whenever I told her I was going out, even for a few hours, she would panic. If she thought we were away overnight she would get completely hysterical, crying and shouting and begging me not to leave her, inducing asthma and going blue. So I didn’t tell her in advance we were taking her to her worst nightmare. Talking it over with the various people involved we all agreed it would be counter productive.

I have a rule that I never lie to my mother, but I lied by omission for weeks. I plotted behind her back and against her express wishes. I put my health above hers, because there was a genuine risk that the move could induce a stroke or heart attack which would kill her. All the Health Professionals agreed. It was a genuine risk. Then they would give me the look again. Things still had to change.

On Thursday night we had our last dinner together, secretly and silently and lying by omission. No toasts and farewells, no reminiscences about what had been and what adventures may be to come, no thanks or time to share unspoken love.

Yesterday morning after the carer had come for the last time I said to my mother “I need to talk to you,” which is the phrase people use instead of just talking to you because something is wrong.

She knew that much. She looked like a guilty child who was about to be told off, because of course that is how it works now. She is innocent and I am the parent who spoils her fun and tells her off and chivvies her along. Take your tablets, use the inhaler, eat your dinner, drink your tea, go to the toilet, get your shoes on, turn off the TV.

“Turn off the TV,” I said and she did. She looked all big-eyed and anxious and I hadn’t even begun.

I told her I had found somewhere to stay for a while to have a break and to give me a break, that I couldn’t look after her any more. She gave me a look too, the one she gave me when I was very small and did something very bad. She was extremely angry. Her mouth went into a line so straight Blondin could have used it walk over Niagara Falls. Her eyes narrowed. Her face was frozen into some kind of kevlar mask. I was a Very Naughty Girl. She argued. She didn’t need looking after.

“You have to give me a break,” I said. “I’m not well.”

Yes, I resorted to emotional blackmail.

For a few moments she protested some more that she didn’t need looking after. Her body was stiff and tight and rebellious. Then suddenly she relaxed and asked where she was going. It may have been another mini-stroke, or it may have been she reached the end of her attention span.

“Not far, just up the road,” I said comfortingly.

“How long am I going for?” she asked.

“Just a few weeks, see how it goes,” I soothed.

Her assessment is for six weeks, so it wasn’t a lie. The omission was that no matter what, she can’t come home. It is no longer safe for her, and I cannot cope anyway.

We went through those two Q&As all the way to the home. When we got there we sat in the sun for a few minutes and I pointed out the flowers in the garden.

The carers came out to say her room was ready, and we went in. As we went in she asked again.

“How long am I staying?”

“Just a few weeks. See how you go.”

The next time she asked the carers said it instead, skillfully, brilliantly taking my lead. I loved them for it. We took her to her room and the carers bustled around her and fussed and pampered and she enjoyed that. We saw the hairdressing salon and she liked that. We talked about knitting and embroidery that she could do, and people to talk to. She liked that because she never sees anyone for days on end at home. She just manages on her own, you know. Company would be nice.

I put out some of her photos in the room, of her parents because she doesn’t know anyone else, and her Rupert Bear pyjama case and her favourite stuffed toys. We had her knitting bag and her books and her newspaper to read to the staff, and her radio that she can’t use but recognises, and her blanket for her knees. It looked a tiny bit like home.

The carer suggested she finish unpacking, so I said I just needed to pop into the office.

“How long am I staying?”

“Just a few weeks, see how you go.”

“You will see me, won’t you?”

That was new. It was an echo.

“Yes, very soon. I’m just down the road.”

They told me to give it a week before visiting to let her settle properly.

As I walked down the corridor I heard her reading the headline to the carer, about carrots curing cancer.

I went to the office, it wasn’t a lie. There was paperwork. But I lied by omission because then Sigoth and I got in the car and drove away.

We do what is needed, and we do our best.

Namaste

Dilemma

It was a challenging day today – well, a little more challenging than usual. It all began, as every day should, with a cup of tea. Today, however, Sigoth mumbled at me in bed about how he “supposed” he “ought” to get up and make the tea. Because I am a sensitive and thoughtful kind of partner I proposed that I do it instead and the wretch had the nerve to agree. Well, I ask you! He always makes the tea. Do I look like the kind of person who makes tea first thing in the morning?

Anyway, up I got and stumbled down the stairs. The very nice newspaper man chose this moment to push my mother’s paper through the door.

To recap, I have a demented mother and she lives with us in a granny annexe we built to accommodate her every need. Sadly we did not predict that she would develop dementia so all my plans to allow for a stair-lift and a downstairs shower room came to nought. Still, she has her comfy armchair and she has her television and she sings to herself contentedly, She also enjoys a morning paper.

A while ago, maybe a year or so, we had a difficult period when she found the newspaper headlines distressing and frightening. She is attached to one of the red-tops, because it was the one her parents always bought, back in the days when it was actually a real newspaper and reported actual news. She never quite understood the metamorphosis it underwent at some time in more recent years from daily reportage to mindless fantasy, round about the time Sauron became the owner. As a result she believed what it shrieked at her from its poisonous headlines about immigrants, health scares, the weather and Princess Diana.

It runs on a cycle usually between those four. Lately of course it has been making hay while the sun fails to shine and the country slides beneath the waves in watery Armageddon. If it came in multimedia format it would be chortling with glee and rubbing its pages together in a frenzy of delight over how absolutely terrible things were.

I literally was considering telling her that the paper had gone out of business and substituting the i.  Then she lost another part of her brain and no longer was bothered, so I left it alone. She likes the cartoons and photos of the Queen or kittens or whatever.

But today this paragon of journalistic achievement had finally become disenfranchised with the flooding and moved back to the familiar territory of NHS-bashing:

NHS ban medicine if you are ‘too old’ in new attack on Britain’s elderly

Today I was thankful that my mother no longer understands enough to be frightened by this spurious claptrap.

Allegedly.

In the interests of fairness and proportionality there are other red-tops which provide similar levels of nonsense. Indeed even the so-called broadsheets (some of which are now confusingly in tabloid format) can come up with total nonsense but they use longer words so that it takes longer for the poison to seep through.

My automatic instinct is to stand on the opposite side of whatever these headlines proclaim and usually I find I am then in the right place. Vide:

• When there are conspiracy theories about Royals, I trust my instinct that the government is nowhere near competent enough to carry out such complex operations successfully.
• When it’s going to be the worst weather in a thousand years I assume that they are referring to a bit of a breeze in the Home Counties and not to anything which will affect me north of the Watford Gap.
• When there is a new health scare or a new wonder drug I am generally correct in asserting that they are neither new nor scary/wonderful, but merely statistically interesting.
• When it refers to immigrants and/or benefits scroungers, I understand the hacks are on some kind of manic auto-pilot and suspect their own mothers would be ashamed.

So today, as well as having to be thankful that my mother is so incapacitated that she can’t follow the headlines, I also found that by logical extension of my usual position I support the notion of withholding treatment for elderly people because they are old.

Damn. I’m not that person.

Yet I have to recognise that in fact that is the very position I have had to take recently on behalf of my mother. The doctor and I had some long chats about it following some internal bleeding and general deterioration. We have withdrawn the anti-coagulants which were exacerbating the bleeding and she has rallied very well. The invasiveness of the procedure to check for bowel cancer would be so stressful it is unlikely to be worthwhile, especially as she would not survive any surgery or chemotherapy to treat any cancer that was found. She may not even have cancer; it may have been a tear which is healing. The only way to find out is, as I said, too invasive and would possibly be inconclusive anyway.

Why would I put her through it? She wouldn’t understand what was happening. She may have a stroke or heart attack from the stress. And the results may not show anything, and even if they did, the treatment would kill her.

So I agreed to withhold the anti-coagulants, and yes, it was largely because of her age.

It turns out I am that person. Damn again.

She’s 87 in a couple of weeks. I am interested to know if she recognises her birthday this year. She uses the paper to keep track of date and was able to tell me when it was Christmas Eve, which was unexpected. She hasn’t remembered her wedding anniversary or my birthday for a number of years now. But her birthday was still there in her addled mind last year. We can but hope this year it is too.

I’ve made a decision for the right reasons. Now I just have to forgive myself for making it. And that tabloid isn’t helping.

Namaste.

 

Mostly ‘armless

Well, my dears, today is day three of the post-operative project so I have decided to try a little light keyboard exercise. The equivalent of scales on the piano.

I had my operation on both shoulders on Wednesday as planned. Following an hour’s drive to the hospital through the dark, in rain and fog, we arrived before breakfast and did lots of exuberant paperwork. The NHS loves its paperwork, and I do not complain because I love the NHS.

Then I sat in a bed waiting to chat to the lovely consultant who was going to dig away at my bones. We had a lively exchange of views, as I had a couple of questions which he initially thought impertinent. He soon changed his mind though; he is quite seriously a lovely man.

And so to sleep via anaesthetic.

Sigoth collected me on Thursday, after a slight delay while they x-rayed my chest because I was still a little breathless. The pain was minimal and I have good movement. The unanticipated problem was how tired my arms feel. Just using my hands to do anything is exhausting. This is not the worst of it however. Brace yourselves for true horror – I cannot make tea! I can’t life the kettle you see. It’s too heavy. How I suffer, my dears, how I suffer.

More annoyingly I feel quite foggy in the head still. Certainly when I woke up I was quite dazed and confused so was quite unable to take in what the physio was telling me about exercises. I am doing some exercises with great dedication. Whether they are the right ones I have no idea. There is a leaflet. It seems broadly similar to what the nice man said.

I also have to make various follow up appointments for a certain number of days after the operation. I am not quite sure when or with whom. I hope to sort that out on Monday. In this I would take issue with the professionals. Really they expect too much of people who have been drugged unconscious for hours.

It seemed to me that this is what dementia is like. I was able to hold coherent conversation with the nurses, joking and being terribly British about the level of discomfort. I did all the things expected of a patient; I was brave and grateful and didn’t like to complain. I managed by myself but accepted  help graciously. I said “sorry” and “thank you” alot. I was charming and tired and a little wan, but generally a good sort. Really they deserve to be treated right by those in their care. They are trying so hard to be helpful.

But I still have no idea what I am supposed to be doing next. The advice is very vague. Do what you feel able but don’t over-do it. Move as much as you can but rest. Wear the support stockings to prevent DVT but only if you are not active. I lead a sedentary life, with computer based work and generally armchair hobbies. What is active in this context? No one could tell me.

So this is how my mother sees the world. I don’t like it. I am letting people down by not understanding their apparently reasonable instructions. I know what the words each mean, but somehow they don’t fit together in my head to make sense. I can’t work out what to do next, what is expected or who I can ask.

I am lucky. My head is getting clearer and I will probably be all over it tomorrow morning. Mother meanwhile is oblivious, and I am glad she has now reached that stage. The journey was terrible, but seeing her sitting in her  bubble of being-in-the-present is some kind of victory. So we each cope with our confusion.

Thank you for your kind thoughts while I have been recovering. Hopefully more coherent service will soon be resumed.

May your thoughts be clear and your minds sharp.

Namaste.

 

Santa made me cry

Saturday night in front of the telly and my evening’s viewing was disrupted by a noise outside. I put my glass of wine down carefully and tweaked back the curtain. It was the Lions’ Christmas float, cautiously inching past the cars on the bend in the lane and blaring out carols while people in high-vis vests ran about with buckets to collect money. There were lights and music and cheery greetings, and goodness me, there was Father Christmas, taking time out from his busy schedule to parade through our hamlet. The elves must have everything under control back at base while the wily old gent scouts out the terrain ahead of the Big Night. Mind you, the elves are pretty experienced and the wily old gent has been doing the rounds on floats for as long as I can remember.

Sometimes he sub-contracted.

If you are a big devotee of Father Christmas and write him imploring letters every year, do not read further. It may be distressing. If you are not sure what to do, check with your mum or dad and take their advice.

Meanwhile, all I can tell you is one of the sub-contractors was my own dear papa, and in fact this is why as a child I never believed in Father Christmas (although I do believe, perhaps more foolishly and childishly, in peace on earth and that Christmas tree smell; my eyes are still full of tinsel and fire).

My Dad was the local Rotary Club’s Santa. His costume would be hanging up to dry in the kitchen throughout December and I knew that Dad was all there was (it was more than enough) and other kids were deluded. I didn’t tell anyone though; it would have been unkind.

So he would go out on the float at night, and when I was a little older I was allowed to go too and help with the collections. I always got a good haul because people were sentimental about a small child lisping her way through the spiel about raising money for the poor and elderly of the locality. It also meant I got to go on the annual coach trip to the seaside with the old dears, who spoilt me thoroughly with toffees and boiled sweets.

I even wore the costume on Christmas Day to hand out the presents.

It might help to explain what happened when I saw the float on Saturday if I tell you a bit about my week, or rather my Thursday. Recently the nurses found that my mother’s blood tests were indicating a lack of iron. As she has a good and varied diet the doctor decided she was bleeding internally, although he didn’t know why. She seemed well and was eating and drinking without problems. So we stopped her anti-coagulants, which would be exacerbating any bleed, and waited a bit. Her blood results have been improving steadily so she is no longer bleeding. Excellent news.

Except she is no longer taking her anti-coagulants, which means she is at increased risk of stroke and as she has vascular dementia, at increased risk of more vascular incidents which will further melt her brain.

The doctor and I talked it all through on Thursday. The bleed may have been a temporary problem highlighted by the anti-coagulants thinning her blood; it may be caused by some disease of the bowel; or it may be bowel cancer.  To find out would require difficult, uncomfortable and potentially inconclusive investigations, which she would find inexplicable and terrifying because she can’t understand what is going on. Even if they found the cause, which is not guaranteed, we would then be faced with a decision around whether she is strong enough to take any treatment, such as radiotherapy, chemotherapy or surgery. She isn’t, and even if she were, the trauma could be either damaging or fatal by stressing her too far.

So I decided we would let her alone. We’ll restart the anti-coagulants when her blood tests indicate she is back to normal, hoping she doesn’t have a stroke or vascular incident in the meantime (it should only be a couple of weeks). If her blood tests then get worse again, we will have to decide whether to risk stopping them or not.

So it had been a stressful Thursday.

There I was 48 hours later looking at a Christmas float pass by and waving to Santa, who waved back and boomed out a “Merry Christmas!” and I fell apart at the gate, in the dark and cold, where no one could see.

Because last year my mother saw the float and we remembered how Dad used to be Santa. She cannot now.

Because I wanted my dad here to help me. He cannot now.

Because whatever the blood tests tell us, nothing will be good or beautiful or gentle. Yet I must choose.

So I cried silent self-pity in the dark and cold where no one could see, then wiped my eyes and went back into the warm house and sat with Sigoth by the fire.

Because I have joy as well as sadness.

On Joy & Sorrow

Then a woman said, “Speak to us of Joy and Sorrow.”
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that hold your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

Namaste.

Dark

Well my dears, it’s been a while, but here I am again.

Busy, you know. Thinking of you all but just plain busy. Things may be turning a corner soon though. Hope springs eternal.

This weekend the clocks changed, by which I mean we agreed as a nation to move from British Summer Time to Greenwich MeanTime, the real time by which the world spins.  So tonight we ate dinner with the dark night looming outside instead of merely fading light. And this year for the first time in my memory my mother didn’t remark upon nights drawing in. It was a tradition almost, that every year when the clocks changed she would mourn the loss of light in the evenings.

This year she is unaware of the change. By this token is her decline measured.

This weekend I finally caught up with the Internet – it seems to have managed without me for the last couple of weeks. Who knew that could happen; I had been concerned.

Anyway I came across a quote by Robin Williams:

I used to think the worst thing in life was to end up all alone. It’s not, the worst thing in life is to end up with people that make you feel all alone

When we completed dinner without the obligatory nod to winter’s imminence, I realised that in a way we were both alone. And that the pain of living with a relative with dementia is that you live with someone who makes you feel alone, because they are no longer present with you.

I’m sorry this is rather depressing to share. I have much to be thankful for regarding my mother. We are able to provide care for her that allows her to be happy. She is not aggressive or hard to deal with. She is cheerful most of the time. She eats well and asks for very  little. You can make her smile just by saying hello.

But when we sit together in a room, neither of us has anyone sitting with us.

John Donne claimed no man was an island, but perhaps dementia makes islands of us all.

May you enjoy the presence of loved ones, even those who are far away but can phone or email or tweet.

Namaste.

How long we live, how long we take to die

One of my hobbies is researching my family tree. I’ve been at it since I first saw some old sepia photos of forebears when I was a teenager and my Dad was looking for something in a cluttered bureau. For once he was willing to talk about his family history and I scribbled names on the back with a pencil in my flowery teen-girl handwriting.

My family came alive to me. The great-uncles who died in the Somme suddenly became faces of real (albeit antique) people, gazing solemnly into a camera. My own grandmother, wrinkled, toothless, crippled by arthritis, was a beautiful young woman in a lacy Victorian blouse. Her fiancée looked like a film star. My very serious uncle was a tiny baby kicking his feet as he lay on a rug. My Dad’s sister who died when she was seven, and whom my grandmother occasionally mistook me for, stood clutching a teenaged Great Aunt Lettie’s knee and looked like just like me.

In this way my family still lives on. I never really knew them. They are my inherited ghosts. But from then Armistice Day did have meaning.

At the going down of the sun and in the morning,

We will remember them

So life goes on, and we all carry our ghosts with us, some more than others, some gladly, some sadly. Yet still they matter.

My dad died very suddenly on 26 September 1992. This week was the 21^st anniversary of his death and my mother missed it more utterly than ever before. Even last year she was vaguely aware of it, and I was able to remind her so we had a few moments together remembering that kind and gentle man before her melted brain turned back to the weather as a topic of conversation. Dementia robs the person and their family of memories, including memories of those no longer with us.  In this way it exterminates the sufferer and their family line. There is a Maori concept of whakapapa which relates to the identity of a person as part of a cultural heritage, and I feel that remembering our predecessors is important to us in a similar way.

I remember my Dad. I have stories about him, some buried in this very blog, which I tell my children. He died the weekend I went home to visit and tell him about his latest grandchild, due to be born the following Spring, He was so happy with the news, but still he died a few hours later, after he got home from work and before my mother and I got back from a concert. It was unexpected.

Twenty one years is a long time. The grandchild is now at university. His wife is fading slowly and excruciatingly.  His only daughter is still misses him on a daily basis. It feels like he is in the next room, or about to phone. We were very close, and in a sense still are. He has been dying for twenty one years, in a sense, and will not completely pass away until I, and possibly the children, can no longer remember him.

What will become of more modern generations? How long will my blog be archived after I am no longer around updating it? I’ll be a wispy little ghost in the machineries of the Web. Every now and then my shade will whisper to you…

“Namaste.”

B4Peace: Music and the brain

Each month I try to contribute to the Bloggers for Peace topic, and this month we are asked to think about music.

Let me start with the death of a brain.

My mother has dementia. I have mentioned this before so some of you will be nodding along at this point, thinking, “Oh yes, that’s right, EBL’s mother is the one with dementia” and so on.

To be fair she is not as far gone yet as she will be, but further along than anyone would really like. This means she knows roughly where she is, who we are (although on her bad days it takes a moment or two), and how to do some knitting. She likes to look at the pictures in the newspaper and read out the headlines to whoever is there. She likes to read books, although several at a time because she can’t really follow the story and forgets which book she was reading last. She likes to have the TV on so there is light and movement in the room, and to have the light on the electric fire on, so it looks like coals are burning in a friendly, comforting way, even in the heat wave we have just had.

The other thing she likes to do I have also mentioned before; she likes to sing. She sings to herself throughout the day, usually “Que sera, sera” over and over. It was a favourite song of hers when I was little. When she is singing it I know she is feeling OK.

It is a truth universally acknowledged, I am led to understand, that a dementia sufferer who becomes distressed can be calmed and soothed by music. There is a growing body of research to indicate that music therapy may be helpful in overcoming the loss of language production and comprehension in advancing dementia. Google it – there are lots of studies out there.

According to one researcher:

‘We know that the auditory system of the brain is the first to fully function at 16 weeks, which means that you are musically receptive long before anything else. So it’s a case of first in, last out when it comes to a dementia-type breakdown of memory.’

Music is with us throughout our lives and plays an important role in maintaining our mental health and well-being. It can reach the lizard brain, by-passing the logical bits that get in the way of feeling and experiencing the world. We hear a tune and we are absorbed, sometimes in a memory, sometimes in the joy of the moment.

The other week I watched the BBC Prom with the Scottish Symphony Orchestra playing Beethoven’s 5^th Symphony as well as his Coriolan Overture.

I like a bit of Prom on a Friday evening to finish off the week and settle down for the weekend.  I like Beethoven, in part because I grew up listening to a lot of it. My father loved Beethoven and played him frequently. I could identify the Symphonies before I knew who the Beatles were. I liked Beethoven because he was deaf but still wrote incredible symphonies.

My dad would have loved the modern world. He was a geek of the first water. He would have loved computers and digital TV and streaming radio and downloadable music and digital cameras and Netflix and Skype. He would have loved the Proms on BBC4 on Friday evening. We would have sat and watched them together in some kind of cosy family cocoon. We always watched Last Night of the Proms; it was the only time I was allowed to stay up late when I was little, and we both conducted furiously to the Sea Shanties and Jerusalem and Land of Hope and Glory. It was better than Eurovision.

So as I sat and watched the Prom the other week I felt a great sadness because there was Beethoven’s music and I wanted to turn to dad and ask what he thought of this conductor, Runnicles. Dad was a big fan of von Karajan until he discovered Barenboim; he was always open to new versions.

I felt such a sense of loss as I realised I couldn’t have that conversation, yet the music made my dad feel so close to me, twenty years after he died. I suspect he may have retained his allegiance to Barenboim, but he would have enjoyed the performance nonetheless, especially the Coriolan Overture.

Thinking about dad brought home to me why music is such a comfort for my mother. That effect of reaching into your heart and soul means it is connecting to pretty much the only thing left when dementia has taken away the superficial veneer of speech and rationality. In this way it brings her peace.

May music bring peace to you and those you love, wherever they find themselves.

Other blogs on music and peace include:

http://everydaygurus.com/2013/08/01/monthly-peace-challenge-one-good-thing-about-music/

http://bloggers4peace.wordpress.com/

http://mylittlespacebook.wordpress.com/2013/08/14/a-joyful-noise/

http://sarahneeve.wordpress.com/2013/08/13/august-b4peace-i-dedicate-to-my-dad/

http://grandmalin.wordpress.com/2013/08/03/august-post-for-peace/

http://bloggers4peace.wordpress.com/2013/02/11/kozo-cheri-asks-that-you/

Namaste.

The Knitted Monet Mind

Ah, Monet – the go-to artist for the ocularly-challenged. I love Monet; everything is fuzzy and uncertain, just like life. I like Turner too; these are my people!

Rarasaur’s latest Prompt for the Promptless introduces us to the phrase “a total Monet.”

“A total Monet” is an expression used to describe someone or something that looks good from far away, but up close is a total mess.

My mother always knitted. She knitted my jumpers when I was little, right up until I started secondary school, when you had to wear school uniform and contend with raging hormones that required you to fit in by wearing something more fashionable. She knitted her own jumpers after that, rather sadly, but understanding a girl’s need to be accepted. I suspect in fact it was a relief as she had also gone back to work and had little time and my treason meant she could concentrate on her embroidery.

Still, she always had some knitting in progress and as time went by, and she began her slide into senility, this at least did not change.  She moved into sheltered housing near where we lived and started knitting granny stripes, sewed them into small blankets for keeping old ladies’ knees warm, and gave them to the Age UK charity shop where they became a local hit. As time went on and dementia ate her brain she still knitted; she still does, although now without knowing what she is knitting any more.

I was clearing out some of her cupboards a while ago and discovered a haul of knitted strips which she had never sewn up, so I decided that as she had made the effort to knit them I would make the effort to sew them. I took them all into my living room to sort out and emptied them from their bags into a big heap on the floor, anticipating an enjoyable hour of choosing colours to put together. It was as if the 1960s had landed in my living room. There was every kind of colour rubbing shoulders with every other, all just being loud and happy and a bit manic, wanting to provide love and hugs through woollen embraces.

An acre of knitted hugs

 

Oh my, oh my! It soon turned out that dementia had eaten her brain earlier than I had realised. The stripes of knitting, so eager and cheerful and bright, were horrendously muddled, all in different lengths, and different weights of wool. In some places she had run out of wool mid-row and joined in wool of an entirely new colour and weight there and then. Piecing them together took me and Sigoth an entire morning, by which time we had turned an acre of knitting into six or seven sets of approximately similar sized strips to be sewn up.

The mad kaleidoscope of woollen strips seemed a perfect reflection of her poor, muddled head. I’m sorry to say the analogy ends there. I have restored some order to the wool; her head is beyond us all, a total Monet in its own right.

She may have lacked the ability to do the deed, but her intention was good and kind. Perhaps that is what matters most.

Namaste.