Missing

dementia poem

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 88th 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 88th 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.

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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

B4Peace: Ideal self

It just so happens, my dears, that EBL’s birthday is in April. Some years ago I received a gift of a necklace with a rune on it for “hawthorn”, which is supposedly the April plant (despite being called “May” or “Mayflower” in modern English). I have no idea what the source of this claim might be and I don’t really care. I was dead chuffed, as we old folks say, with the hawthorn connection because I had also in my youth read Robert Graves and learned that the hawthorn is the symbol of the Goddess representing at various times of the year her different faces of maiden (pure white flowers), mother (luscious red berries) and crone (gnarled black branches during winter).

triple_goddess_symbol

We have a hawthorn in our garden and it is a joy to live with. The flowers are gorgeous, the berries attract hordes of greedy birds and the branches clutch the winter skies with thorny fingers demanding that Spring return and refusing to take No for an answer, refusing to give in to winter’s icy brutality.

What if my inner goddess was like that, pure, nourishing and unyielding? What if I was able to be like the hawthorn?

In this month’s Bloggers for Peace post Kozo asked that we imagine our ideal self and how we could make peace happen in the world.

This is the point where I should do a polite thing and mention triggers because this post is not about to be joyful. The more I thought about this prompt the more I struggled to find my ideal self. The more I thought, the more I realised that no matter what I do or how hard I try to be the positive me, the goddess, it will not work and underneath I am still the old, twisted, damaged and depressed self, and there is no end to it. So if reading about someone’s struggle with depression is difficult for you, please take this opportunity to find something more nourishing for your soul and shake the dust of this post from your virtual feet.

I’m not sure how moaning on about my depression will promote world peace except that through understanding someone’s experience, one among far too many, we might all learn to live together more healthily.

I’m not sure it will work, but I promised I would post for peace each month so here we go.

To meet this month’s challenge I tried to find ways in which there was some kind of inner goddess inside this rather pointless person. To retain the vestiges of convention I started with maiden. What kind of a girl was I and how could I bring her best qualities into my life? As a child I wanted to be good, and make my family happy. I suppose children do usually want that, at least initially. I was loved, there is no doubt, by my father and grandmother and various relations, although I was a huge disappointment to my mother and we never were really close. Yes, this is the mother who lives with me now, brain eaten by dementia. I have been caring for her and disappointing her for as long as I can remember and nothing changes. I no longer expect it to, of course, but sometimes I think it would have been nice to have had a good relationship. However, we did not connect for whatever reason. Overall, it leaves me painfully aware that I failed as a child.

Well, perhaps there is more luck to be had as Mother. After all I have four Offspring, so perhaps I did something right. I always wanted a large family and a country home with chickens, home-baked bread and possibly a vegetable plot. That was based on Enid Blyton stories and daydreams of roses over the door and being able to climb the Magic Faraway Tree during holidays.

Except I was a terrible mother. I had no role model to use except the unrealistic ones in books, magazines and films. I had post-natal depression very severely for several years and I went out to work while Sigoth stayed home and parented. He is great with children. It turns out I am not. We lived in an Edwardian terrace near London so I could get work. I worked ridiculous hours to earn enough to support the family, at one point holding down three jobs at once. I was exhausted and depressed and terrible with the children, and never had the time or energy to pay them attention. It’s a miracle they stlll talk to me, but then I expect they want to be good children too.

OK, EBL, some of us are late developers. Perhaps you will make a wonderful Crone. You are enjoying getting older after all.

It is true, this is the most positive period in my life, and I want to celebrate the accumulated wisdom and experience of my first half century. But when I look at what I can contribute I honestly see nothing. The best thing I can do is to go away and die so I am no longer harming anyone. That way I can decompose and give back some useful nutrients to the soil. Sorry if it sounds melodramatic; it is, of course. That does not make it invalid.

This is the sum of my wisdom. The ideal me is a dead me. The best I can do is no hurt. The best I can give my children are no demands.

To be clear, I don’t hate my life. I have a job I enjoy, a partner who is practically perfect, children I adore, friends, a social life, a supportive community, enough income for my needs, a home I love. I am very fortunate. There is the odd event which causes distress, as in everyone’s life, but nothing unusual. I don’t want to change anything. I just don’t want to live. I feel no serious connection with the world and so no attachment to it (not in a good Buddhist sense though). I simply don’t have anything to live for. I have felt this way since childhood.

People think depression is caused by a thing, an event or a circumstance. It may be so for some people. Not for me. This is simply the way I am and there is no discernible reason. I am just a defective human.

I believe in good things like love and peace and happiness, but they are not for me. I cannot describe the best thing that happened to me today or this week or in my life, because none did. Or rather, they did happen but I don’t remember, like a dream that fades as your eyelids creak open in the morning.

I thought I was getting past this, but apparently not quite. I am not so distressed or perturbed as I used to be, but nothing has filled the gap left by those destructive feelings. There is just a big hollow. It’s not actually unpleasant but it isn’t as if it has been replaced by unicorns and rainbows. Looks like I missed the boat on those. It is an improvement I suppose. I won’t be distressing Sigoth or frightening the children by sitting in my chair crying and rocking for hours on end any more. That’s good. Perhaps that is the best I can be, and if so, then I shall hope it continues until I attain perfection in the way that is inevitable, a consummation devoutly to be wished.

Elsewhere shining lights burn more brightly than mine. Other bloggers for peace include:

http://everydaygurus.com/2014/03/31/monthly-peace-challenge-woman-in-the-mirror/

http://sarahneeve.wordpress.com/2014/04/06/april-b4peace-post-my-portrait/

http://klamiot.wordpress.com/2014/04/03/woman-in-the-mirror-i-wish/

This post also contributes to the Mental Health Awareness Blogging Project.

Namaste.

 

Purple on the inside

birthday cake

This is the time of year when I start to think about age. My mother’s birthday was last week, mine is next month (she remembered hers alright, unlike the names of her grandchildren or when my father died; it’s so ingrained she won’t forget that until the last), along with Sigoth’s and two of the Offspringses. It’s pretty much birthday time all the time at EBL Towers just at the moment.

Ageing is not a popular pastime in western culture. I think that’s a shame, because we all do it every day and we can’t change that, so we might as well enjoy it. For example, I am about to become 52, which sounds like fun. There was a song my mother liked when I was a child about a deck of cards. It’s mawkish and sentimental, but at least it makes 52 a magic number. I have to say, 51 is not very exciting unless prime numbers are your thing. I like proper numbers that are made up of other smaller numbers, in different patterns and combinations. I think it makes them more interesting. I am not interested in a number you can only make by multiplying it by one. It leaves no room for creativity.

Perhaps I will invite friends round to play cards and eat cake.

There are many reasons I enjoy getting older. I have mentioned before that I suffer from depression. I have done so since I was a child and there hasn’t been anything anyone has been able to do about it, myself included. It doesn’t sit well with me, because I am a fixer. The pills don’t work, no matter which ones I try. Talking therapies are too expensive, although the occasional short series of sessions I have managed to access have been partly helpful but insufficient for any long term benefit. Pulling my socks up has only made holes in the toes.

It turns out that in my case ageing seems to be part of the answer rather than part of the problem. I know many people don’t like it or see it as positive but I really enjoy it. My depression has generally been worse during times of hormonal excess – puberty, pregnancy and menopause were all especially difficult, when the demons were at their worst. Now I am past all that nonsense, things are calming down.

I don’t know how other people experience depression, if they do. In my case it has been like a veil between me and the rest of the world. At times the veil has been relatively thin and I can reach through it and make contact with people. At other times it has been so solid and unyielding that I am trapped, able to see dimly through it but disconnected, unable to be heard or seen by others. The veil is always there, but lately it is gossamer thin, at least most days. It has worn away to a cobweb over time and I for one am cheered by that. Perhaps it will turn out that I am the mightier, that I have more staying power, that I will be the one to win the race. That is not what I expected, and I am glad for it. Who’s the stronger now, eh?

And I blow a raspberry at the veil. It mutters to itself in a corner and I start to see it for what it is – a bully, not insuperable, not immortal and not intact.

Today the veil was thin, yesterday it had a burst of energy. But I think I am winning the war, if not every battle. The tide is turning.

I like ageing. As I grow older I become careless. I care less what people think or say or do. I not only quote Jenny Joseph but actually wear the purple on the inside as well as the out.

Namaste.

 

Most people don’t realise

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Today I have five things to share with you. Buckle up, blogfriends!

  1. Most people don’t realise that I learned to play classical guitar.
  2. Most people don’t realise that I wore built-up shoes as a child due to knock-knees.
  3. Most people don’t realise that I am genuinely ambivalent about Marmite.
  4. Most people don’t realise that I don’t recognise faces easily.
  5. Most people don’t realise that I have wanted to kill myself.

We hide, intentionally or not, many facets of our lives. Sharing everything would be information overload of the most intense variety. However, depression and mental illness are too often hidden because of stigma.

This post is a contribution to the Blog for Mental Health Project 2014. You can read more about it by following these links.

http://acanvasoftheminds.com/2014/01/07/blog-for-mental-health-2014/

http://blogformentalhealth.wordpress.com/

I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”  

What don’t people always realise about you?

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.

 

Keep Calm and…

Newer readers may be shocked to learn this, but regular victims readers will know that EBL is not a naturally calm and cheerful person. I hide it well, by which I mean not at all.

Today is in theory the day they let me come home from hospital, so all being well I will be travelling back across the Wolds today, moaning and complaining all the way. If Sigoth manages to grit his teeth long enough to get me back, rather than opening the car door and slinging me into a ditch on the Beverley Road, then I will be ensconced somewhere and resting.

I have had a run of health issues over the last year or so, resulting in 5 general anaesthetics; this will be the sixth. Experience tells me I wake up manic and then crash completely, so I assume I will nto be able to write a post to you. Therefore I lined this one up before I left.

Now I enter the strange grammatical vortex familiar to those of us who like accuracy and also have recorded answerphone/voicemail messages. These will have been along the lines of “I’m not here right now – well, of course, I’m here in the “right now” of recording this but not the “right now” of you listening to this” variety.

“I am not here right now. Please read my blog and leave a message. I’ll get back to you as soon as possible when I return. “

There must be a medical term for the kind of anxiety some of us experience trying to phrase all this correctly so we are not being untruthful or inaccurate. I resorted to “I can’t take your call” for a while, but it didn’t sound right. It sounded like I just couldn’t be bothered to talk to the caller, as if they were not important.

A former colleague had a very brief and efficient message of “You know what to do and you know when to do it!”, which had the elegance of being concise but was a little too casual for a professional voicemail in my opinion. Also I didn’t think it would go down well with the various Aunties who might encounter it on my home phone. I swear I have more problems with Aunties than Bertie Wooster, although fortunately none of them chew broken bottles or kill rats with their teeth.

I had another colleague once who was (and presumably still is) American and spoke with the kind of accent which is rather a flat and monotonous tone. It was a perfectly pleasant voice to listen to when you were with him, but whenever he answered the phone people thought he was his own answering machine and tried to leave him messages instead of actually talking to him.

So hopefully the situation is this, if I can get my tenses lined up correctly. I have been/will be at the hospital and coming/back home today. At some point in the future (oh, that bit was easy!) I will again be able to write posts over which your suffering souls may shudder. In the meantime, I am being/will be doing my best to keep calm and not commit crime induced by boredom.

Do you enjoy enforced bed rest? Because I don’t and won’t and can’t. Tell me how you manage, before I have to bite my own arm off in a desperate attempt to escape lethargy. Amuse me, I beg you.

Namaste.