Another Heartbeat

I’m the first to admit that my heart has been firmly closed off to all other heartbeats for a number of years now. There was no way I wanted to even know that another heartbeat existed.

There was the terribly hurtful, disastrous relationship from a few years ago. Most of that I never breathed a word of my pain to anyone (although if you can handle cryptic you could check out here and here). That’s about as forthcoming as I chose to be, for a whole host of reasons. But what I can say is that I firmly zipped up my heart and determined never, ever to let it free again.

And then about a year before was a grief of another kind when my dear cat, Penny (see here) got her angel wings and left this earth. She was sick and suffering, and as hard as it was to let go, I had to let her free. Penny and I had been together for twelve years. We had got each other through thick and thin, and to go through her final days and then to grieve when she was gone took a very big toll. I wondered whether I would ever be able to bear that burden of love for an animal again, knowing that at sometime heartbreak would come again.

As time has gone on I have struggled to think of allowing myself to love another animal. I had decided, and have no doubt that I won’t be loving another human in that intimate way again, but I tossed and turned about a pet, and each time deciding that I just couldn’t go there.

There were good excuses too. Money, earthquakes (yes, really!), housing, money again, and of course the fear of loving and then losing again. I came to the conclusion at one point that I would like to get a dog instead of a cat, and so then there were all sorts of excuses why that wasn’t going to happen either. Money, earthquakes, housing, even more money, would my health limit my ability to exercise a dog adequately, and the age-old fear of loving and losing. It was looking like it was never going to happen.

Until about three weeks ago, when for some reason I didn’t really understand I drove out to the local SPCA Animal Rescue Centre just to look at the cats. I wasn’t at all prepared to adopt a cat that day; I was “just looking”. I saw two cats that I was instantly attracted too. One of them was adopted by others later that day. I was certain the other would go within days.

And then I got sick (a long story not for this post) and I just assumed that ‘Zion’ as he was called, would be happily adopted and settling into his new home. I told myself I would have adopted ‘Zion’ if I hadn’t got sick, but now I (and he) would never know each other beyond that afternoon together on the floor of the SPCA.

But strangely ‘Zion’ waited. I finally got back to the SPCA Centre two weeks later and I was sure he would have gone. He was a two-year-old, healthy and friendly male and I couldn’t see any reason why he wouldn’t have been snapped up. But as the SPCA staff explained animals often choose their owners and perhaps ‘Zion’ hoped/knew I would come back. Either that or my guardian angel had kept him out of public view for two weeks.

‘Zion’ and I have been cohabiting for one week now and I think we are both happy with our new arrangement. After a long discussion (admittedly a little one-sided) he has changed his name to ‘Hobbes’ (after my favourite cartoon character) and he is settling down nicely. He’s fast asleep at my feet as I write.

What felt good was to having some ‘thing‘ else in the house with a beating heart. Something else, alive with likes and dislikes, good and bad habits, and of course a unique personality. I hadn’t banked on any of that. I had forgotten the joys of pets and to find another heartbeat near mine is a good thing.

It’s odd because when I think of another heartbeat, what comes to mind is that beating sound and sight of the ultrasound of a pregnant woman’s belly. I have never been a maternal person. I never wanted to have children (for lots of very good reasons mostly documented somewhere across the years within this blog), and actually, the thought of another heartbeat within my body actually freaked me out a bit.

As it is, I’ve got another heartbeat, not inside me, and not a human one thankfully, yet one who still takes up half of the bed. I am growing quickly to love him. He doesn’t yet understand when I am in pain and so don’t appreciate that some of his endeavours to express his affection, and I guess that is much like a young child. I do believe though, that in time he will come to understand my needs of him as much as I understand his needs of me.

We are a partnership. If my theory that he waited those two weeks for me is correct, I hope he will soon come to the conclusion that I was worth the wait. That will be something I can only guess at.

Maybe my desire to keep my heart safe isn’t altogether that healthy. I don’t know, but it’s necessary to keep my mental health intact for now. It’s taken me just over five years to get another pet, and I hope that has allowed me the time to find within myself what I need to be able to give to Hobbes. He deserves the best of me, and I hope he gets it.

Before I forget, meet Hobbes:

“Our perfect companions never have fewer than four feet.”
— Colette

Thanks for reading

Cate

When The Mind Breaks

Rock-a-by baby On the tree top,
When the wind blows The cradle will rock.
When the bough breaks, The cradle will fall,
And down will fall baby Cradle and all.
                                                    – Mother Goose, c.1765

A nursery rhyme that has always struck me as (just a little) scary. Who puts a baby in a cradle, and then in a tree? What do you expect? The baby IS going to fall.

Right now (and actually for a long while previously), my life is dominated by minds that have perhaps been put in a metaphorical tree, the bough has broken and so has the mind.

Firstly, the onset and continuing existence of mental illness in my own life. Mental illness has been very obvious for around twenty years now, although thankfully (for now) it’s not quite the crisis that it has been previously. There’s always the possibility, though that the branch may break again. With the diagnoses and history I carry, I would be a fool to deny that possibility.

But now, I’m living the day-to-day reality of caring for my mother who has Alzheimer’s Disease. It is different from my own broken mind experience yet there are some very real similarities. Sadly, at this stage of medical knowledge, there is no light at the end of the tunnel with Alzheimer’s. Rather it is getting steadily worse and will continue to do so. People don’t survive Alzheimer’s. Not yet, anyway.

That breaking of minds is something I could write about endlessly. Both my own mind, and more recently my Mother’s. But it’s not where my thinking is today. Rather, I’m thinking about what is left when the mind has broken. That thinking comes from the image below, one I came across yesterday on a great Facebook page, Alzheimer’s Sucks – Memories for Joe Hennington. As an aside, I can tell you that Alzheimer’s does indeed suck, so that immediately tells me this page is a good one. It is worth a visit.

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Image credit: Permission to reproduce obtained from FB: Alzheimer’s Sucks – Memories for Joe Hennington

Let me say from the outset, that it is not my intention to conclude whether or not the message contained in this image is correct. I don’t know the answer to that, and I wonder whether anyone really knows. I share it because it made me think, and so I want to discuss it. To hopefully at least start to sort out my own thinking, and maybe find a little of what others think.

This image stopped me in my tracks. “The heart holds what the mind can not“.

I had seen a similar statement before but perhaps because of where I am at with my mother’s Alzheimer’s journey, it really made me ask yesterday:

“When the mind breaks, does the heart step in and protect what really matters (what the mind held)?

Is what was loved, sustained?”

Yes, that is what I want to know. I know the easy way to look at this. I can tell myself, “yes, my mother still loves me now and will continue to do so when she no longer knows me“. That is, of course, what we all want to believe.

And what about with severe mental illness? When my mind was so terribly broken (in an admittedly different way) and I didn’t want to know my family, I suspect they might have wondered “did she still love us?” Clearly, there were times when my actions and words indicated otherwise.

I can remember my then-husband wondering “do you still love me?” Such a question came at a time when he was having to watch me continuously, primarily because the mental health services were simply not available and someone had to make sure that I stayed alive and ate something. I hated it (and I’m sure he did too). I reacted in such a way that he must really have wondered. It probably appeared that I hated him. Perhaps I did.

I don’t think I had the capability to love him (or anyone) at that time. My mind was very much broken and was fighting for survival in such a way that I wonder if love was even possible. If you could magically take away the mental illness then, of course, I would say then that I loved him. But magic isn’t real life, is it?

My mother’s Alzheimer’s Disease is different. She’s not having to fight me for her survival, in the way that I had fought my husband. There is also not some hope that we will get her back, as she was. The mother I knew, has largely faded. I don’t buy the train of thought that the person with dementia has already died and that we are simply left with her body. But that’s a whole other post so I won’t go there right now.

A few days ago Mum and I were in her room looking at something that she has always loved. I said something about it, and I saw her looking at it as if she had never seen it before. Then she looked to me and clearly wanted some explanation. It was an object rather than a person but I found it startling because it was an object she had loved. Only in the last few weeks, she had referred to it with affection, but now she had no connection to it.

And so I wonder, what about when it is a person. When it is me? When the time comes that she doesn’t recognise me, will her heart still hold what the mind has lost? Will she still love me?

I want to believe that she will, even though she won’t even be able to communicate it. Who wouldn’t want to believe this? But I suspect that it’s not quite that easy. Maybe that’s the glass half-full person I am. I don’t know.

Perhaps too, it comes from my own broken mind. I have struggled to believe my mother loved me for most of my life. We haven’t had an easy relationship. It’s difficult for me to believe that her love will be sustained when I’ve spent nearly fifty years doubting the existence of that love.

What matters is that I will keep being there for my mother, even if that love has gone. More so, perhaps I need to turn all of this around. What I need to know is that she will still know that I love her.

And in terms of my own broken mind journey, perhaps what really matters is whether I could still somehow comprehend love from my husband and my family. Actually, I’m pretty sure that I couldn’t and perhaps that was part of the problem. I’m really not convinced that my heart could hold what the mind had lost.

I suspect these are questions for which there will perhaps never be adequate answers (for me anyway). Something I perhaps have to accept as it is, without understanding.

What do you think? When the mind breaks, what happens to what the heart held? But please don’t tell me that of course, my mother loves me. If you do, I will know that you have missed my point.

“You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.”
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me.”

— Lisa Genova (Still Alice)

Thanks for reading

 

Cate

My Saddest Day…

The Saddest Day That a Daughter Has To Bear. That’s right. Today is my saddest day.

I’ve been there with the death of a parent, and yes, that was tough. My father died suddenly nearly six years ago. He wasn’t well, but no one expected he would die. I pounded on my father’s chest doing CPR for twenty minutes. It was just fortunate that I had learnt CPR about 25 years earlier. With the help of Emergency Services on the phone, I roughly knew what I was doing. Enough, anyway.

I felt it as one of my father’s ribs cracked beneath my pressure. I remember thinking he would be grumpy with me afterwards with his broken rib. I didn’t stop to think that my efforts to revive him wouldn’t work. I guess I couldn’t afford to think that he might die.

By the twenty minute mark I was so exhausted, and every muscle in my body ached. When you see actors doing CPR on the television, you don’t realise that actually it takes an enormous amount of energy and strength. But then they’re not really doing it. Are they?

I was so exhausted I had to stop. Unthinkable really, but I simply had not an ounce of energy left in me. I had done long-distance running and knew what that point of utter exhaustion felt like, but this was so much different and so much more. Fortunately, it was at the very minute the first paramedic came through the door. You can draw your own conclusions about how that happened right at the very moment I had to stop. The paramedic carried on for another twenty minutes. Beyond the call, really. My Dad had gone and my mother and I watched and waited for the funeral director to come. This was a new stage in our lives.

Losing my father was terribly hard. He was my best friend, hero and someone who had believed in me every step of my life. Now he was gone. I carry a diagnosis of fibromyalgia now as a reminder of the trauma, both physical and emotional, that I bore that day.

But today was quite different. Today I was ‘losing’ my mother to the Alzheimer’s Disease which has increasingly swallowed her up. She hasn’t died. I guess I haven’t really lost her. But then, I know that I have. There is no coming back from this.

Today I moved my mother into a secure (read locked!) dementia care unit. It was the saddest moment when she said in a pleading voice “you’re not going, are you?”. I had done my best to make her new room familiar, I had walked her into her new home and now it was time for me to leave. Time to let the staff take care of her.

Mum hadn’t known where we were going today. To have told her would have been wasted. We were simply going for a walk (her new home is on the same property as the old). When we got to her new room, she thought it was my room. She looked around and recognised a few of her things. Theo, the teddy bear she had once made was on her bed, as was a cushion she had embroidered back before she was married. These were her things. This was her room.

I’m no expert on Alzheimer’s Disease but perhaps since my father’s death, I have become somewhat of an expert on my mother. She’s scarcely the woman I knew. She’s barely the woman who raised me.

We used to argue day in day out, but that tension is gone. Now she depends on me for her life. When I’m not visiting, she spends hours looking for me. I have become her link to life, because while physically she’s holding on, mentally she is a shell. And today I took that shell out of her semi-familiar surroundings today and gave her a totally unfamiliar new home.

I came home and I cried. Cried for the mother I have lost. Actually, I never thought that I would cry for her. We just didn’t have that kind of relationship. Actually, we barely had any relationship. It’s not that I didn’t care, or that she didn’t care. It’s just we had never found a way to get along.

One day, my mother will die and I guess I will cry again. But the woman I knew for fifty plus years has almost totally gone. Simply leaving a shell. And that makes this my saddest day.

Thanks for reading

 

Cate

 

 

Me And Mum

World Alzheimer’s Day – 21 September

Image credit: courtesy of digitalart at FreeDigitalPhotos.net
Image credit: courtesy of digitalart at FreeDigitalPhotos.net

I hadn’t intended to post again so soon after my last post, but World Alzheimer’s Day today is too good an opportunity to say let’s support the people in our communities who live with Alzheimer’s. People who have the disease, people who support those with the disease, and people who are employed in working with both groups of people.

In writing about Alzheimer’s and my family’s journey it is really important to me that I don’t take advantage of my mother’s plight. She deserves her privacy, something which she has always held tightly to. She doesn’t deserve to be some kind of joke. The struggle she lives with is real, but she is also real. She has feelings. Part of my task in supporting her is to protect those feelings, even though she might not be able to express or even understand them.

This post comes from my own reactions to my mother’s illness. I have tried to write from a perspective of my journey, rather than my mother’s. I hope that in doing so, I have preserved at least some of Mum’s right to privacy.

It’s funny how things happen. I think I would be pretty much the last person my mother expected or even wanted, to be there for her as she traverses her last years – with Alzheimer’s Disease.

“The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect… [ someone] whose love for us has assigned them to the honorable, yet dangerous position of caregiver.”

Peggi Speers, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Mum and I never got on. Not when I was a child and not for most of my adult life. It might seem harsh but the reality is that I think Mum and I tolerated each other for the sake of my (now late) father. I always got on great with Dad, but Mum didn’t appear to understand me and I didn’t understand her. I fully expected that when she was old, we would simply go our own ways.

My father died suddenly nearly six years ago. My parents had been temporarily living with me (after they lost their home in the Christchurch 2010/11 earthquakes). I remember the night after Dad’s funeral, I looked across the room at Mum and wondered how we would go from here. Mum hadn’t been diagnosed with Alzheimer’s at that stage, but both Dad and I were clear that she was showing symptoms.

You see, Alzheimer’s runs in my family. My grandmother died of it, as did one of my uncles more recently. Earlier generations possibly bore it’s burden too. I have known it for most of my life, being only about ten when my grandmother was moved into residential care back in the late 1970’s.

Sadly, it’s something we have grown to expect. Mum never talked about this family heritage, but I’m sure she was probably quietly terrified. Frankly, I’m quietly terrified of it myself. But I’ll face that when I get there. My fear is not the focus for today.

It wasn’t long after Dad died that I got a very clear sense that he would want me to ‘be there’ for Mum. People have since told me “don’t be silly, he wouldn’t put that burden on you” but that’s not the way I saw it. To me, it was just one last thing I could do for him. I never stopped to see it as some type of burden. It was just the way it was going to be. Strangely, doing it for Mum never came into it back then. Supporting her would be definitely something I did for my father. Perhaps that’s just the way I needed to see it back then.

Mum was finally diagnosed about two years ago, but symptoms were obvious to those of us who were with her regularly, about six years earlier. And I’ve been learning ever since. I thought I knew the disease, but I really didn’t know anything until I learnt to live with it daily. There are new lessons each day.

Our relationship has changed enormously. It’s still not what I would call a typical close mother-daughter relationship. It never will be. Our relationship centres around her, and what she needs. My needs don’t really come into it. Some days that is really hard. Some days when I’m not well myself I want to scream “what about me?”. But mostly it’s okay. While Mum isn’t able to acknowledge it, I know that she needs me to prioritise her. This is her time now.

Mum needs me. She is living in a rest home, so yes, her basic needs are met. But I see her most days. I am clear that when I am not there, the staff take good care of her, but they are clear that Mum needs (and wants) my presence.

I’m the one that meets all Mum’s other needs. It might be the little things that no one would ever think of, or maybe bigger things like making decisions for her. I’m the one that notices the dirt on her shoes and stops to scrub it off just before taking her out to church. Maybe the dirt doesn’t matter, but it would have mattered to her… and so, now it matters to me.

Mum never appears to have any difficulty knowing who I am. She’s never once hesitated over my name and has no problem telling anyone who will listen that I am her daughter. That said, there are times when it’s quite clear to me that she is talking to me thinking I am my father. Other times I am a mystery third person, who she was eventually able to reveal to me was her sister (she never had a sister!).

I know that Mum has a great deal of difficulty knowing who most other people are. She’s confusing names or having to ask me who someone is. I admit that I try to keep the family names alive in her mind. I talk about my brothers (by name), about her grandchildren (again by name). I talk about my father because I can’t bear to think that she might forget the man she was married to for 53 years.

Maybe I do all of that for my own sake. Maybe I make decisions for her in such a way that will save me from having to see her suffer. I don’t know if it’s that I don’t want her to suffer, or that I can’t bear her suffering. Does that make sense? The two things are different to me.

Alzheimer’s Disease is a terribly cruel illness. I’m not the first person to write that. I see it’s cruelty daily as it robs little pieces of my mother.

I see the pictures in many Alzheimer’s publications of two brains side-by-side. On the left is a ‘normal’ brain and on the right is the smaller ‘Alzheimer’s’ brain. I wonder what my mother’s brain looks like now. How much has it shrunk? And for how long it can go on as it is? I don’t know.

The future of the journey which Mum and I are on is unknown. There is so much that is unknown. Each day, I don’t know what it will contain. Even though I already see my mother struggle so much, I know the struggle will only get worse. It’s just a matter of time. Will it be today? Or some time ahead?

What I do know, is that I have a remarkable opportunity to serve a woman, my mother, in her final days. What an honour. Seriously. I never thought I would say that, but Mum’s willingness to let me be there for her is a gift.

I read that “being a mother is about protecting your children from every conceivable thing that might cause them hurt”.  I’m not a mother myself but I now see my role as protecting my mother from everything that might cause her hurt. Sometimes I can achieve that but sometimes I can’t. At least I can try.

By choosing to look at our journey in these ways makes it bearable for me. I dearly hope that I am somehow making it bearable for Mum.

Thanks for reading

 

Cate

 

Other Posts You Might Be Interested In

Bewildered

Never Say Never

 

Bewildered

Bewildered was reflected in my eyes. I hadn’t seen it before, but there was something devastatingly familiar in that look. I couldn’t turn away from it.

I had been Bewildered in times past. It came as a symptom often not recognised, from too many anti-depressants, benzodiazepines, antipsychotics and even too much ECT (yes, it is possible to have too much). Those left me with little idea of the world around me. I didn’t know the people around me. I didn’t know the world around me. I was a little bit scared but mostly I didn’t care.

The Bewildered now reflected in my eyes was mostly not there to reflect mine in the days I needed it. I was mostly alone. It’s not that they didn’t care. I had just pushed away anyone who cared. I had moved away to places no one knew me. Those that cared were few in number. Well, that’s what Bewildered wanted me to believe.

Actually many people, admittedly at a distance, cared. Actually, many people, family and friends, wanted to care, but I couldn’t see it. Perhaps it was the psychosis, the depression or perhaps it was the drugs… they wanted me to think I was alone. Actually, Alone was the last thing I needed. Alone would kill me if I let it.

It’s what made me think when I saw Bewildered staring back at me last night. Alone is the last thing that Bewilderment needs. It’s not that it would kill them. Well, not yet and not in the way it threatened to kill me.

It is easier to stay away. Because it’s difficult. What do I say? How do I respond to Bewildered’s strange statements? How do I stay, when Bewildered seems to push me away?

I’m lucky in a way. I have my Grandfather’s example to follow. He wasn’t alive by the time I faced my Bewildered, but I know what he would have done because I’d seen him do it before. He would stare Bewildered straight in the face, and say, “I’m not leaving you”. And he didn’t.

Whatever Bewildered you find reflected in your eyes, I challenge you to stare them straight back in the face and say “I’m not leaving you.” It seems so small, but maybe if it can take out a little of the fear that Bewildered faces alone, it has to be worth it. It will probably be difficult, but still worth it.

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of these things and still be calm in your heart.”

 – Unknown

Peace is something that even the Bewildered deserve. No matter where that Bewildered is sourced, I believe that I can help someone Bewildered find even just a little of their own peace just by being willing to let that Bewildered be reflected back in my eyes. In that, they are not alone.

Thanks for reading

Cate

 

Never Say Never

I did say ‘never’. More than once. Actually I said it repeatedly for about 20 years. That’s a long time to say ‘never’ but I was sure of myself. I was sure that I never wanted to do this again. I’d been, got burnt several times, and wasn’t going to go there ever again.

About six months ago I had my first inkling that perhaps I had said ‘never’ with a little too much certainty. But I had never pictured myself in this situation, ever. While I was still saying ‘never’, I was starting to realise that I might have to change my mind sometime in the future.

I can tell you that I hate that! Having been adamant for so long, having been sure that this would never happen, and now because of a number of decisions I had made over recent years, I knew that I should never have said ‘never’. Never say never, Cate!

I have shared in past posts that my mother has Alzheimer’s Disease. It’s a cruel disease. Everyone says that but I had little idea just how cruel it was. I had seen my grandmother’s journey through Alzheimer’s. An uncle’s journey more recently. And one thing that’s sure is that I’m nowhere near the end of this Alzheimer’s journey yet. I know now that contrary to past thinking, it’s a much worse experience for my mother than it will ever be for me.

I remember being told “at least they don’t know what is happening to them”. That was a somewhat comforting thought. Just yesterday someone told me “they’re really already dead” (ouch!). But research has now found that patients do know. It’s just they don’t know what they can do about it. It’s a good reminder to me that no matter how hard this is for me, it is much worse for my mother. That’s enough for me to never say ‘never’.

For all of her life, my mother has gone to church. It has been central to her life as a child and as an adult. She was married to a minister. Now it continues to be a key aspect of her life, although she is more limited in the extent of her church activities. Apart from perhaps when she has been in hospital (rarely) I can’t think of a time when she didn’t go to church on Sunday.

When mum had to give up her driver’s licence and so couldn’t get herself to church, we set up a system where another brother (who went to the same church) would pick her up and take her to church. I would be waiting outside church at the end of the service to take mum home. Many times I have been invited to go to church with her, but I was saying ‘never’… quite firmly. I had absolutely no intention of going. But the system we had set up worked.

For a big chunk of my life, I had gone to church. I had grown up in a minister’s family so church was central to our family activities. As an adult, I had continued to go to church.

Several things happened in my teens and twenties. They dulled my enthusiasm, although I never said anything and I kept up my participation. When I was first diagnosed with a mental illness, in my late 20’s, a number of statements made to me by a few unwise people, left me concluding that church was no longer the place for me. I felt judged, and I felt uncared for. To the extreme perhaps, people who had hurt and abused me were somewhat more important to some church people than I was. My needs for safety and protection were seemingly unimportant. My experience was that church was not the compassionate and accepting place they said it was.

And so I stopped going to church… about 20 years ago.

Until now.

My thinking has driven me further away from the church. But just sometimes, it’s necessary to put that aside. My mother now needs someone to be with her when she goes to church, otherwise she probably wouldn’t be able to go for much longer.

I made a choice. I would go to church with her until the point where she can no longer go (with me).

Aside from my own beliefs and thoughts, I’m not ready to see mum unable to go to church. It is very important to her, even with her disease. For some reason that I don’t fully understand yet, I’m prepared to help her keep it in her life.

Ok, so I have only been once so far. There is little that has changed in 20 years, except some of the music. It wasn’t somewhere I felt comfortable, but my comfort was not what this exercise was about. I don’t call myself a Christian, and suspect that will continue. I didn’t agree with everything that was said. It is a middle-class church and I wondered where the inclusion of others was.

But I will be there, with her, again this Sunday. And the Sunday after. And for as long as Mum can make it.

This is about being there for my mother. Making sure that something so important to her remains in her life, and setting aside my own thinking, I hope, for her sake,  that we can keep doing this. You see, when we can’t keep going, a very large chunk of mum’s life will have been taken away by Alzheimer’s. And that will be tragic.

It’s going to be a hard road for me. But I am willing to do it, not because I love her but simply because I hate to see this disease swallow up someone’s life before it has to.

Thanks for reading

 

Cate

“looking at my reflection, in the window opposite, hollow and translucent, I see a woman disappearing. It would help if I looked like that in real life – if the more the disease advanced, the more ‘see-through’ I became until, eventually, I would be just a wisp of a ghost. How much more convenient it would be, how much easier for everyone, including me, if my body just melted away along with my mind. Then we’d all know where we were, literally and metaphysically.”

― Rowan Coleman, The Day We Met

4.35am

It is five years today since my city, of Christchurch, was shaken so badly that I seriously thought the end of the world had come and was happening right on my doorstep.  A shallow, 7.1 Richter scale earthquake began a rollercoaster of quakes which would last more than two years. What followed was four earthquakes over 6 Richter scale and a staggering 16,000 plus quakes to today.

Not to mention the physical and emotional damage, it is without exaggeration that I say my life totally changed that day. How I live, how I think, how I feel and perhaps most importantly (in my eyes anyway), what matters to me. I am more compassionate. More mindful.

Christchurch wasn’t a city that got earthquakes.  That was Wellington (head north).  I had grown up knowing how to deal with earthquakes (run for the nearest doorway and hold on!), yet that 40 second quake was beyond anything I knew or had ever thought would happen to me.

It was 4.35am, so it was dark and I was asleep when I hit.  When I woke to the bed rocking and rolling, I immediately knew I had to get to the doorway (some maybe two metres away). You have no idea how hard is to get to a doorway in the midst of such a quake.

As I left my bed I instinctively grabbed one of my most precious possessions which was sitting by my bed. But when I (finally) made the doorway I realised I had left another very precious item still beside the bed. I immediately wanted it with me but wasn’t sure I could get back to the bed to get it… and perhaps most importantly still be alive. I chose not to go back.  I didn’t think I could get back and then back to the doorway alive. I still find it incredible that all that was in 40 seconds, it seemed so much longer.

No one died that day but more quakes happened, and people did die,  I admit I moved my focus of what mattered.

When people died in the quake of 22 February it really hit me that lives were at stake.  As I stood in an office car park with hundreds of others, having been evacuated from the building I was in, I saw injured people. While I probably had no doubt by then of the risks we faced, I heard on the grapevine that other buildings had collapsed. I knew that lives would be lost today. That said, my parents were by my side so I knew they were safe.  It was only a few hours before I could speak to my sister-in-law and knew they were all safe.  This was bad, but the worst (death) was happening to other people. I know that sounds a little callous, but it is what I was thinking at the time.

185 people died that day, one was known to me.

Six weeks later, my thinking changed again in a very abrupt way. The quakes continued and as a result of extreme stress, my father suffered heart failure. I was down on the floor in my lounge (my parents were by now living with me as their home had been declared unlivable and would later be demolished) doing CPR on Dad. I had never expected to be here, but thankfully had learnt CPR some 20 years ago. It took 20 minutes before paramedics arrived and took over (many roads were still blocked and impassable), another 20 minutes before they declared Dad dead.

Now this ‘worst thing possible’ had happened to me. Earthquakes now meant death, what’s more, death of my father and best friend. I now had to look after my mother, and this time when the phone calls were made to the family, I could no longer say that everyone was safe.

Some seven months earlier, my focus was on my possessions.  Of my most valuable, I had one with me but had left the other just a few metres away. The death of anyone hadn’t really  occurred to me. While the quake was bad, I never thought someone close to me might die. Now the unthinkable had happened.

Draw your own conclusions, that’s really what we have to do in such situations.  But I’ll tell you my conclusions.  I’m reminded of them each time I feel yet another shake (last night).

I’ve concluded that taking one day at a time is not an option. It’s essential. It’s what I have to do because I simply don’t know what tomorrow will bring. I don’t know if I’m going to be able to say “I love you” tomorrow and I don’t know if I’m going to be able to say “I’m sorry“. I don’t know if my precious possessions will be gone, and whether my house will still be standing. Think that’s going too far, and in my opinion (now) you’re fooling yourself. My aim now is to take each day as it comes, because I really don’t know if tomorrow will actually come.

Five years on and I’m still waiting for my house to be repaired.  It is expected to start in November and will take six months.  I’ll be looking for somewhere else to live shortly. My brother’s business was all but destroyed five years ago. He’s still working hard to try to rebuild it. We are not finished with the aftermath. Not by a long shot. It will be a long time yet before we can breathe easily again. But meantime, kiwis (and especially kids) are now taught to “Drop, Cover, Hold” rather than trying to run for far away doorways.

Kia kaha, Christchurch
(Be strong)

Cate

To Cope

cope

Pronunciation: /kəʊp

 VERB
[NO OBJECT]

1(Of a person) deal effectively with something difficult:
 

his ability to cope with stress; it all got too much for me and I couldn’t cope

(Source: Oxford English Dictionary)

And now that the English lesson is over for the day, let us get on to more meaningful issues around this word.  Like how do we cope?  What coping mechanisms do we use in order to get through life?  Are those means of coping, healthy or otherwise?

But here’s the catch… I don’t want you to tell me how you cope.  I have enough dealing with my own means of coping.  Tell yourself, instead.  Tell yourself what coping mechanisms you use to manage physical or mental difficulties.  Maybe you have both and so you need to tell yourself about both.  And check with yourself, are they healthy or unhealthy?  And perhaps more to the point, does it matter?  Be honest with yourself.  Know what it is that keeps you going.

And now I will get on with my post. I have had a means of coping with a particular aspect of my life, for a very long time.  Actually I have used this means for as long as I can remember.  I’m talking pre-school.  I can’t remember when I didn’t do this as a way to cope.  This is a very longstanding way to cope.  And it worked.  First as a child, and then as an adult.

There are only two occasions in my life where this coping mechanism of mine was denied (for want of a better word).  Actually they were similar but different.  One involved me sharing some small detail of my means to cope with another, and that other using it to abuse me.  Obviously that didn’t work.  The other refused to accept me if ‘me‘ included that means of coping

Both times I had to weigh up what was more important, my coping mechanism or the people involved.  Both times it required a potentially life-changing decision.  These people insisted I remove the coping mechanism from my life in order to have some type of connection with them.  Actually I chose my means to cope with my life, and it hurt like hell.  But… I never had a doubt that I had done the right thing.

For a third time, this week my means to coping was challenged.  Actually it was more than challenged because of the environment involved.  This time my means of coping was totally chucked out and I was told I ‘couldn’t use it anymore’.  Gone.

If I could go into details, then I could go some way to explain just how devastating that has been.  I can’t.  But maybe it doesn’t matter so much because perhaps my feelings are what are important.  I’m not sure if I can adequately put those in a few words but I will try.

Hurt, denied, shut out.  I was fighting for air to breathe.  Literally my means of life was being denied.  It hurt to the extent that it felt my skin was being peeled off.

I know that it is difficult to comprehend, but go back to your own means of coping.  Maybe one you used from childhood, or something you had to do to keep yourself alive as an adult?  One that actually meant a difference between life and death.  Now have that taken away from you, by someone important in your life.  Maybe it’s happened to you already.  Can you see now a little of how I might feel?

To be honest, I spent most of the week in denial.  There was too much to do, people to face, it couldn’t work any other way.  It simply was the only way to handle it, without totally losing it.  But then I had to go back to the person who did it.  That’s where it felt like my skin was being peeled off all over again. Fuck!

And I felt myself crumbling, not sure if myself even existed anymore…

“You think you’re lost but you’re not lost on your own. You’re not alone. I will stand by you, I will help you through when you’ve done all you can do.
If you can’t cope, I will dry your eyes
I will fight your fight, I will hold you tight and I won’t let go”

— Rascal Flatts

Good Intentions

I had good intentions.  You know when an event is coming up and for once you’re organised?  Each day leading to the event is planned?  That’s how I was with Christmas this year.  I knew what I had to do, I had most of what I had to do done.

But then I got a phone call on Monday morning.

It changed all that.  While Christmas still happened (like such events have a habit of doing regardless of what we have happening in our lives), Christmas changed.  The days before, and the days afterward changed.  I think I’ll remember this Christmas.

I had already come to the conclusion that Christmas this year would be about family.  For once, I was actually looking forward to the day.  I don’t usually.  I’m one of those people who would rather ignore the day.  Usually I grudgingly do the things expected of me, but mostly detest this celebration… for a number of reasons.  This year was going to be different.  Somehow my mindset had changed just a little.

Early Monday morning I got a phone call to say my almost-87-year-old mother was not well.  I wasn’t yet dressed but threw on the nearest clean clothes I could find, and drove over to Mum’s flat in a nearby retirement village.  And there began a search to get help for her.

To be honest, I wasn’t quite sure what to do to begin with.  We are all fairly new to all this.  Thankfully I was able to get some quick advice and then acted on it.  Many phone calls later, Mum had an emergency appointment with her doctor in a few hours.  That followed with more appointments.

I can tell you that a few days before Christmas is not the time to seek help from health professionals.  Everyone wants to see them, but luckily those involved made room for mum.  Unfortunately the problem wasn’t solved and the conclusion was eventually that family would have to provide the care Mum needed.  That basically meant me!

What followed was three nights on Mum’s couch.  The most uncomfortable sofa bed I have ever had the misfortune to attempt to sleep on.  I have now spent seven days with Mum, although we agreed that she didn’t need me so much at night and that because my back was now extremely sore, I have been home at night.  I only live five minutes away and I can easily jump (if my body lets me) in the car and go back (as I have had to do).

Nearly a week on, Mum is doing better although is not herself.  I wonder whether I will ever see that ‘herself‘ again.  I don’t know.  That’s the nature of the illness.

I will continue to spend days with my mother, and then on Wednesday she will move to a rest home, providing residential care for the elderly.  This is something that was already planned.  This past week we tried unsuccessfully to move Mum early.  It didn’t happen because… well, I won’t get into that here.

That is the short story.  The purpose of sharing it here, as well as to simply write out for myself what happened, is that it very much fit with what I had already been thinking of for Christmas, and what I had intended to post about on Monday.  Obviously it didn’t happen.

Image credit: Permission obtained from Penny Redshaw http//: motivating giraffe.wordpress.com

I am sharing this image firstly because I love Penny’s blog.  Somehow, without my involvement (obviously… it is not my blog) she illustrates what I am thinking.  Amazing!  I also love images of giraffes.  I’m sure I would love giraffes themselves but there are not many in this country.

For some weeks I have been thinking about what is important for me at Christmas.  My thoughts came from a disappointment that I simply wasn’t going to be able to give my nieces and nephews gifts this Christmas.  I had no money as a result of not only a very small income but also because of some recent very large and unexpected bills.

I started (a few weeks back) to feel pretty down about this, not to mention embarrassed.  I had to shift my thinking somehow, and I started to do that with Penny’s statement in this image.  Remember what is important.

What is important is that I am alive and can be with at least some of my family.  The niece and two nephews who I would be with were really what mattered.  But that doesn’t exclude the other family members I would also be with.

When my mother got sick this week, it gave me a new appreciation of the fact that I still have her, and that regardless of her illness she would (and was) with us on Christmas Day. Who knows how long she will be with us? I had to take her presence on Thursday as another thing that mattered.

It’s been a long, hard week.  And it’s not over yet.  My fibromyalgia is screaming, as are side effects of a new medication which made it almost, but not quite, impossible to get down on the floor and do jigsaws with four-year-old niece L.  Getting up afterwards was even harder.  But it was fun, and that was what was important.

Hey, life goes on and I have a new appreciation of what’s important for me.  It didn’t matter that I hadn’t given gifts.  I suspect the teenagers might have objected a little, but they didn’t to me.  We just had fun together, with their Grandma quietly looking on.  I wonder what she was thinking.  I know I’ll never know

But that’s what’s important to me right now.

 “My dear young cousin, if there’s one thing I’ve learned over the eons, it’s that you can’t give up on your family, no matter how tempting they make it.”

― Rick Riordan

What I Did And Didn’t Want

Do I exaggerate? That’s a rhetorical question for most of you.  My family (who might or might not be reading) are welcome to try to answer that question but you must be kind.  Very kind.  Your purpose in attempting to answer must be purely to educate me and not to, in any way, attack me or get back at me for some random, unrelated misdemeanor.  The question is really one for myself if I am completely truthful.  It won’t be the first time I try to answer, and it certainly won’t be the last.

I just have got the impression over the years that those people close to me have the impression that yes, I do exaggerate.  Personally I don’t think I do.  I think that I feel things strongly and that I notice a lot of what is happening around me.  Perhaps more than others.  But when I express it, it’s not exaggeration but simply what I am seeing and/or experiencing.

This past week I have been through a lot, and for some of the people around me, they have been through even more.  It has been really hard.  Emotional, soul-searching and stressful.  And no, that’s not an exaggeration.  It has been hard on us, and it’s not over yet.  Actually in some ways I suspect it is only just beginning.  For some of us, it has been something that we always knew might happen, going even as far back as childhood.

It comes down to what I did, and didn’t want.  Clear as mud, I know!

It’s always important to me that just because I am a blogger, that doesn’t mean those around me must have their lives printed here too.  As such, there are no details.  If you’ve been reading my blog for a while, you will know that is how I sometimes write in order to protect the privacy of those people.

For what seems like a long time, I have been very concerned about something that others around me seemed to not see.  Of course, we see not only what is apparent but also what we are open and willing to see.  In addition, we can only see what is there.  If it comes and goes, if at times it gets hidden, it is pretty hard for others to see.

No one has said it out loud but I got the impression that they thought I was exaggerating.  Maybe they thought that was because of my mental illness.  I don’t know.  No one has ever said.  Maybe they thought I was simply too emotional and reacting too strongly to what I could see.  Again, I don’t know.  No one has ever said.

This week finally, some other people told me that they could see what I could see.  Wow!  That was such a relief (in some ways!).  As I watched them, watch what was going on, I was quietly terrified that they would say they couldn’t see it.  They didn’t.  They could see it clear as day.

It’s hard because I wanted them to see, but at the same time I wanted to be wrong.  I know that will make little sense, but I guess it’s just human nature.  I wanted to be right, but I also didn’t want to be right.

I was right, and actually those other people assessing what was happening, were even more concerned than I was.  I didn’t know how to feel then.  I wasn’t quite ready for the depth of their concern, even though I was glad they could see and were concerned.

What had been sometimes unspoken, and sometimes barely whispered, had now come amongst us.  I had really hoped it never would.  Others around me had hoped it never would.  Even those who had passed on hoped it never would.  But now, here it was, and there was no denying it… for any of us.  I got what I wanted.  I wanted others to see.  But now I really didn’t want what I had got.

I can’t wind back the clock, and that is painful.  I want the clock set on today when everyone concerned can see what I see, but I so don’t want it.  It’s totally thrown me off-balance, even though I wanted this, I also knew that what I wanted was the last thing I would ever want.

If you’re confused, then I apologise, but just imagine how I might be feeling with all this in my head.

I think I need a rest.

“Because that’s life, you know? Good and bad. You can’t have one without the other. The bad brings out the good in us, and the good can be corrupted by the bad. It’s always a struggle—to fight for the good, so it tips the scale. – Jet Phoenix”

― Rachael Wade, Repossession