Slipping away

I’m not sure whether my Mum is losing me, or whether I am losing my Mum. We’ve never been close. We’ve always been complicated. But in some ways I defined myself as much by that complication as anything else. I became a set of “I will never”s as much as a set of “I will be”s.

Now dementia is rewriting that fraught relationship every day. There are upsides. Screaming paranoias that would have lasted weeks or even years now only last a few minutes. Memory loss has its charms, as it turns out.

Sadly there are hidden razor blades, too. My Mum no longer knows how many kids I have, or whether they are boys or girls. That’s not particularly new, but on Monday she went from one sentence berating me for working too hard to asking how the job hunting was going. When I told her I was happy in my job she was puzzled – how long had I been out of work? When I gently suggested she was confusing me with somebody else, she agreed that this might be so, and then, in a small voice, asked me “What do you do, again?”

That small question hit me like an out of control freight train. Being a teacher is a fundamental cornerstone of my soul. It’s who I am. So I am forced to face the fact that my Mum doesn’t know me anymore.

Whoa-oh-oh slipping away from me
Whoa-oh-oh slipping away from me
And it’s breaking me in two
Watching you slipping away
Slipping Away. Max Merritt and the Meteors.

It feels like a short step from here to her not recognising me at all, but the heartbreaking part is that we still know her. We still possess within us all the complexities, the hurts, and the misunderstandings of our lives together. For her they are washed mercifully clean, but for us they churn away in our every response to her. We remain angry and confused about things she has no memory of doing. We are still frustrated and hurt by a history she can’t even imagine.

You may argue that it’s time to let go. To dispense with emotions that are years out of date. But those experiences made us who we are, and they are not lightly or easily discarded.

My grandfather forgot us all, in the end. My personal version of that history is that he remembered me long after he forgot everyone else, but I suspect that’s a story my 13 year old self desperately wanted to believe. It’s far more likely that we all disappeared for him, much the way we are disappearing for Mum, now.

Sometimes Mum calls 6 times an hour, asking the same question, accepting the answer, and forgetting it within moments. Sometimes she doesn’t call for days. She doesn’t remember this afternoon that I saw her this morning, but she can hold onto strange things – like wondering what I have done with her bathroom mirror? (I never had it.) We’re used to the conversation repeating. We’re used to things being forgotten, and her getting muddled. But this loss of identity: this is a fresh shock.

Mum’s young for dementia. At 76 it’s unusual to be this far from your former self. At 43 it seems unusual to be facing the slow, shattering demise of the very essence of your Mum. But this is our world now. This is the future that looms, the grief that stalks us.

Advertisements

Family

Mothers day is always a little fraught for me. My relationship with my Mum was complicated, long before dementia kicked in and kicked over the furniture. So today I have been watching all the heartfelt declarations of love and support on Facebook and feeling a little bruised. A little battered. A little lost.

But then I started thinking about some of the extraordinary relationships in my life. My beautiful girls brought me breakfast in bed. Their handmade cards made me teary. Their hugs were heartfelt, and inevitably followed by a certain amount of coffee-endangering wrestling – don’t tell me girls don’t wrestle. They just do it at a much higher pitch. It all made me smile (once my coffee was safely out of the way).

I reflected on the wonderful people that my work has brought into my life. The amazing support staff. The fabulous teachers who have become dear friends. The researchers and activists I and my students have collaborated with. And the students themselves. That’s when it hit me. I have two children by any normal calculation. But in the 5 years since I became a high school teacher I have suddenly become Mum to every student I have ever taught.

They all have a piece of my heart, and a claim on my time, for as long as they want it (and beyond). They teach me incredible things and give me amazing gifts every time they bounce into the classroom. Every time they email me for help. Every time they find me on Facebook after they leave school. Every time they come back to help in my classroom, or just to sit up the back because they have a study period and they like the atmosphere. Every time they send me interesting snippets they think I’ll enjoy or be able to use in class.

Every time they tease me with while(True) loops and emoji variables (sorry, programming joke).

Every time we meet for coffee. Every time they ask me for career advice. Every time we stay connected. Every time we interact. Every single time. I’m so lucky to be connected to these amazing people. In a very real sense they are part of my family forever. Family is where your heart is. Happy Mothers Day!

Dying to talk about it

When my best friend, Di, died I felt a subtle pressure to stop talking about her as soon as possible. It wasn’t that anyone told me I should get over it, or asked me not to mention her. It was that talking about death made people visibly uncomfortable. We were young – she didn’t make it to her 25th birthday – and most of us had never faced death before. Never been struck across the face with it, never felt its shockingly cold breath on the back of our necks.

This stark evidence that death could swoop down out of clear skies was something nobody wanted to remember. But grieving silently – hell, doing anything silently – is just not me. So I write about her. Talk about her with the patient few who let me bare my soul to them. And hold her close in my heart every day.

And still we pretend that death comes at the end of a long and busy life, a blessed relief when strength has dwindled. That we are immortal, right up to that final moment. That we will never lose the ones we love. And I think this is a terrible mistake.

Three years ago my cousin, Chris, died – another death that struck like an atom bomb on a sunny day. No warning. No farewells. One day full of life and love. The next a gaping hole in our lives. Last week I saw him in a dream, and I hugged him and cried – knowing even in the dream that he wasn’t real, but so grateful to see him, to have the chance to hold him again.

But seeing as this was about death, I didn’t tell anyone about that dream. I hugged it to myself, and buried the melancholy memory deep, so as not to make anyone uncomfortable. My daughter was 8 when Chris died, and she loved him dearly. His death ripped her foundations out from under her, as she confronted the shocking awareness that death could strike at random and rip her world apart without warning. Much the same way Di’s death did to me when I was 25.

I wonder, sometimes, whether we would both have coped better if death was something we were allowed to talk about, rather than a deeply uncomfortable taboo. If we retained the matter-of-fact honesty of childhood, talking easily about our feelings and our grief.

Years ago I had a miscarriage, and because I was open about it I found that tales of grief and loss, of miscarriage and infertility, began falling around me like petals from a tired rose. So many of my friends had borne their grief in silence, because that is what we think we are supposed to do. We don’t want to make anyone uncomfortable. We don’t want to go on grieving longer than we think we should. We don’t want to bring everybody down.

But maybe talking about death could actually bring everybody up. What if all that honest and raw emotion could provide comfort to others coping with feelings they never see anyone else show? What if that real and current experience of death could provide just a little cushion, as people see that death does strike without warning, but that kindness, compassion, and time make it possible for the rest of us to go on living even so.

What if people saw each other suffering, and grieving, and struggling, and knew that they weren’t alone?

What if we actually talked about death?

A part of life

I love anniversaries for the excuse to celebrate. Birthdays, wedding anniversaries…any excuse to get together with my loved ones and say “Hey, we’re doing well” or “Hell, we’re still alive!” is ok by me. But just as reminders to be happy roll around regularly, so do the anniversaries of sadness and tragedy.

The anniversary of my Dad’s death is creeping up on me, and although I haven’t had time to give it much space consciously, it lies heavily on my heart.

The death of a parent is a funny thing. All around me I see people much older than I am who still have living grandparents, and whose parents take an active role in their lives, yet I also know that many lose their parents much younger than I lost my Dad. It’s not shocking, demographically speaking, to lose a parent when you’re in your 40s, but the heart doesn’t consult statistics before it reacts. I knew my Dad was dying. His death was a release from terrible suffering, but I still miss him.

A year ago I was sitting in a meeting when the phone call came. There followed a flurry of people to notify and things to organise. As the year went on there were more and more things to sort out. We are still getting letters for him in the mail from companies we have never heard of, still notifying organisations who hold accounts for him or want to sell him stuff. But slowly the administrative burden has subsided, together with the shock.

Now we have grandparent days at school with a hole in them, and music concerts that he will never attend. Stories he won’t get to appreciate, and family celebrations where he won’t tell those terrible, terrible Dad jokes.

Sometimes I think I wasn’t the daughter he hoped I would be, and there were times when he wasn’t the Dad I wanted. Relationships within families can be complicated. There were so many conversations we never had, so many truths we never faced. In some ways I am grieving for the kind of relationship we never managed to create between us, and the things we never quite sorted out.

No relationship is ever perfect. I suspect no parent raises a child to adulthood without regrets. My oldest child is only 10 and my list of regrets is already too long to count (which is probably another post or 2… hundred). My relationship with my Dad wasn’t perfect, but he was my Dad, and I love him.

One year on from that shocking day – the day that I waited for, wished for, and dreaded – and I am past the shock and well into the grief. I miss my Dad.

Perhaps Love

On Tuesday my dad died.

The writer side of me watches and documents my whirling emotions with bemusement and a busy keyboard.

One moment I’m fine. Getting the kids to school. Doing the shopping. Eating breakfast. Showering.  Helping my 9 year old with her homework. Everything seems almost normal.

The next I’m in floods of tears. Hot, bitter, unbearable, never ending tears.

Then, together with my sisters, I’m calling undertakers, sorting paperwork and making lists of who to call and what has to be done. The practicalities provide a focus for a brain that has lost its moorings. Drifting and uncertain, I check 3 times that the door is locked and still turn back halfway to my destination, unsure if I locked it properly.

The pattern of the week is destroyed, blasted apart by the shock. I don’t know what day it is, where I should be, or where anyone else is.

And I am angry. I don’t know why, or who with, but don’t get in my way. And I am overwhelmed by the love and support I have received from the moment I took that dreadful phone call with blank incomprehension.

“Dad’s dead.”

What?????

Then the shaking set in, both mental and physical. I made phone calls, I accepted a lift home, I sorted details. People use the term “on autopilot” at moments like these, but in truth I don’t think there was even an automatic system in charge. I was following a logical pattern of things that had to be done, while my brain freewheeled in the sky overhead – refusing to come back, like a kitten bitten by a snake. Not going back there! That hurt!

The stages of grief are not a linear progression. It’s more like a random drunken walk. Lurching from phase to phase. Often inhabiting several at once. Denial. Anger. Pain. Anger. Denial. Anger. Pain. Denial. Pain.

Perhaps love is like a resting place
A shelter from the storm
It exists to give you comfort
It is there to keep you warm
And in those times of trouble
When you are most alone
The memory of love will bring you home

Perhaps Love – John Denver

This morning I find the last 25 years stripped away. I am 15, sitting at the piano and singing “Perhaps Love” with my dad. He had a beautiful tenor voice, and I loved singing harmony with him. We sang Perhaps Love, My Cup Runneth Over, Send in the Clowns, and probably others I have forgotten. My piano playing was rather on the fumbly side, but he waited patiently through my stumbles and sang as though accompanied by a virtuoso. Strange the things that come back to you.

Last night I lay in bed not sleeping, listening to my 5 year old crying “I want Pa” in her sleep. My girls are hurting, and it kills me that I can’t fix it for them, any more than anyone can fix it for me.

Grief and I are old adversaries. It will do its worst, but it won’t beat me.

But it hurts.

I can’t take it anymore!

After weeks of sleep deprivation due to our 3 year old’s coughing, we are hanging onto sanity by our fingernails. My goodness, health problems with kids can feel never ending. The worst part is listening to their distress, unable to help. Last night she wound up in bed with me, coughing almost continuously despite the cough medicine, and crying piteously because all she wanted was to be asleep.

Today she is happily watching television, but still coughing non-stop – not a chesty cough, but a dry, tickly cough with no pause longer than about 45 seconds. Cough. Cough. Cough. Sometimes between coughs she rests her head sadly on my shoulder, yawns deeply and looks as though she could just nod off, until *COUGH*.

This has been one long, virus laden winter. We started with gastro, which became gastritis and vomiting blood (they call it coffee ground haematemesis, because it looks just like coffee grounds – if you ever see that, trot off to the doctor PDQ), moved onto a case of shingles for dad, and then collapsed into the cold zone, where cold, wet weather was miserable, damp and gusty, inside and out. AH CHOO! Hack. Hack. Hack. We have been there ever since.

I don’t remember when we last slept well. It’s nothing serious. Nothing life threatening. Just a constant assault on our immune systems, sleep, and general well being. It gets to the point where I want to be permanently armed with disinfectant guns, ready to shoot anyone who comes near us with so much as a sniffle. I do try not to be paranoid, but with a house full of permanently sick people, the idea of someone knowingly bringing another virus to our door is more than I can stand.

Many people are very considerate, warning us in advance of their collection of bugs, so that we can make our own decision about whether to take the risk. But I remember when our oldest was only a few weeks old. We went to a friend’s place for dinner, and discovered that he had the flu. Had we known that before we got there, we would never have gone, but we didn’t have the choice. Within a week or two we were all down with it – and there are few things sadder than a 6 week old baby whose nose is so blocked that she can’t even feed. I wanted to strangle that friend, but I didn’t have the energy.

Too many people share their viruses around with an alarmingly generous hand (or nose). If I were brimming with energy and enthusiasm now I would wage a campaign – Keep Your Bugs to Yourself! Don’t “soldier on” and take your flu with you to work. You will recover quicker, as will your workplace, if you keep your bugs at home and rest. Don’t send your sick child to child care, on the premise that “he probably got it from there anyway” – you are dooming other families to illness.

Above all, do not believe the myth that “once you are showing symptoms you are not infectious anymore.” This is rubbish. It may be true of a vanishingly small proportion of bugs, but many rely on transmission via droplet infection – that is, they are most infectious when you are throwing billions of them into the air with every cough and sneeze. Go and look at the health department’s advice on infectious diseases – you will find that many of them are transmitted via the symptoms – the coughing, sneezing, and dribbling out of various other orifices that I won’t disturb you with here.

Sure, it might be just a cold, but to anyone with a lowered immune system, a chronic illness, or who has simply been suffering from a succession of infections, it may be the last straw.

So please, if you are ill, don’t spread it around. If you are sick and planning to visit someone, warn them and let them make the choice: to take the risk of infection, or to postpone the visit. To you a cold might be a mere inconvenience. For many, it is one more intolerable burden in an overburdened, sleep deprived and desperate time. Do everyone a favour and keep your bugs at home.

Move over, Scrooge!

Call me a curmudgeon if you will, but I just have to confess that I loathe mothers’ day. Not, I must make clear, because I have any issues with my own mother, or because I received a traumatic paper cut from a mothers’ day card in utero, or any other deep seated psychological trauma. Indeed, I also loathe Fathers’ day, Christmas, and sometimes even birthdays.

It’s the myth that these “celebrations” are actually about relationships in any way that drives me nuts. Let’s be perfectly honest here: Mothers’ day is not about mothers. It’s about massive consumerism and obscene profits. It’s about selling stuff.

We are bombarded with marketing that makes it quite clear: to express our love for our mums we must SPEND. Because dollars are a measure of love, apparently. Whether you “say it with flowers” (bought, of course – not home grown, unless you are under 5, when you might just get away with it) or “treat mum to a day of pampering” (not by you – paid for by you, but delivered by strangers, because that’s so much more meaningful), buying stuff “shows your mum how much you care”. Your devotion is best measured in dollars.

Even worse are the ads showing Mum receiving a “bad” gift. Here we ramp up the pressure – failing to pick the right gift is a failure of love. Don’t risk it! Spend more.

I hate feeling pressured to buy a gift at a particular moment, whether it’s a hallmark holiday like mothers’ day, a birthday or Christmas. If I find the perfect gift for someone I care about, I love to buy it and bestow it immediately, and then not fuss about arbitrary calendar deadlines. Sadly,  I usually don’t do this, because the pressure to conform is strong, and not everyone thinks this way. So I usually save up the good gifts for birthdays and Christmas, where they get swallowed in the rush, and I bow to the pressure to come up with the goods according to those arbitrary markings on the calendar.

While there are some positive sentiments around events like mothers’ day and Christmas, these too can often become a source of stress for families. If Christmas is a time to spend with family, which family? Many people face the traumatic juggling act of deciding which family to spend it with, or they drive themselves to distraction trying to spend a part of the day with each branch of the family, incorporating those complex sub-branches where Doris and Aunty Beryl can’t be in the same room, but each expects more of your time than the other, as a measure (again) of your devotion.

Regardless of the arbitrary nature of designating one particular date on the calendar as important, the precise day is often treated as fundamentally crucial – businesses market it aggressively, restaurants clamour for your business that day of all days, and the pressure ramps up.

I am all in favour of expressing my love and appreciation for the important people in my life. But I like to do that as a spontaneous reflection of how I am feeling at a particular moment. Not on demand at the ringing of a bell. Woof.