For Her Sake Or For Mine?

World Alzheimer’s Day – 2017

I haven’t been blogging much lately. It’s not because I haven’t wanted to. I have. And generally, I still have a lot to say.

But my brain isn’t functioning too well, and it gets in the way of getting the thoughts (and feelings) from my brain onto my screen. I start plenty of posts but they simply don’t end up saying what I want. And so I don’t even start to write. It’s easier that way because as a writer, there isn’t much worse than not being able to get the words out. Don’t mistake this as writer’s block. It’s not.

The problem I have is called brain fog (aka cognitive dysfunction) and I currently have two chronic medical conditions which make this a daily reality. Then there are several medications I take which contribute to the severity of my brain fog. And let me just say for those who have never had it, that the term ‘brain fog’ drastically underestimates the issue.

It was only a few days ago that I tempted the derision of another by raising the issue with my doctor (again). My brain fog has been so bad lately that I feared some type of permanent brain injury had somehow taken place, or perhaps even early-onset Alzheimer’s Disease. (There’s enough Alzheimer’s Disease in my family to know that it could well be a reality for me some time ahead).

My doctor told me to take a multivitamin. There is a lot I could say about her response, but I won’t because well, this post isn’t about her.

Regular (yes, I realise there has to be something to read to become regular) readers will remember that my mother lives with Alzheimer’s Disease. You can read previous posts that address this aspect of her, and my life here and here, as a starter. What’s important to know is that World Alzheimer’s Day is important to me. It’s right up there as far as awareness days go. Not just because of my mother’s current fight, but also the past fights of an uncle and my maternal grandmother, and of course, that one day this may well be my fight too.

Mum has been living in a secure facility directed at dementia care for nine months now. In that time, I have witnessed her fight become more intense. I have watched as she now struggles to recognise anyone but me. Sometimes she knows I am her daughter, but other times she is adamant I’m not her daughter, and that instead, I am a long-standing friend. Then other times I’m not altogether sure just who she thinks I am, except it is clear that I am of meaning to her. Only a couple of times have I got the sense that she had no idea who I am. Yes, all of that leaves me sad. I am grieving for someone who stands in front of me.

All of that leaves me thinking about why I do what I do?

Why do I spend time with Mum most days, often while I am in a great deal of pain, and often when brain fog is leaving me struggling to even speak with her (and/or the staff)?. Why is it important to me to be there for her, regardless of what physical, emotional or mental toll that has on me? Or simply when I could be doing something else?

I am the only person in her life that she actually recognises now. I find this terribly hard. Each time I have the realisation that she doesn’t recognise someone, it hurts. Each time she tells me she doesn’t remember being married, or the man she was married to, it hurts. I find that one particularly painful, simply because she was married for 53 years (to my Dad) and her brain has shut out all those memories.

But I have a unique opportunity to attempt to keep those memories alive, whether that maybe in telling her about aspects of her life, or simply keeping the memories alive in me. I can do that for her. And I can be her voice in a world she finds increasingly bewildering.

Imagine if you knew only one person. That person would be so important to us, and we would probably rely on them a great deal. I would hate for my mother to not have that one person, and so I do what I do for her sake. For her sake, to have a person in her life.

Realistically though, I know there will come a time when she no longer recognises me, but I am determined to be there anyway. Determined to be that person for her, even if/when she isn’t aware.

The truth is though, that I do what I do for me too. A year or so ago I would have told you that I am there for Mum for the sake of my late father. Doing what I thought he would want. But I know now that I also do it for my sake.

I have never had a good relationship with Mum. Actually, we now have the best relationship we’ve ever had. This is my opportunity to have a relationship with my mother. It might not be the sort you would hope for, but we have a connection. It is unique, it is largely one-sided, but it is something I have never had.

I’m not making up for lost time, but rather simply having what I am fortunate enough to be given at this time. Perhaps neither of us were ready for a relationship before, but now we both benefit. It is for her sake, and for mine.

And with that note, I will take my multivitamin (because I’m just a little scared not to).

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

Liar, Liar, Pants On Fire!

I was sitting outside (okay, so I admit I was having a cigarette) when I saw one of my neighbours walking up the back path towards me.

I said: “Hi”
He said: “How are you?”
I said: “Good”

And that was it. I had lied through my teeth, but it was okay because he just kept on walking and then walked in his door, leaving me to contemplate what I had just done. The conversations (if you can call them that) I have with this neighbour never amount to much more. I have similar conversations with another neighbour. I lie to him too. But that’s how we talk to most neighbours, isn’t it?

This time I was struck with how easily the “good” rolled off my tongue when actually I was feeling anything but good. Would it matter if I said, “good” in answer to any such questions, for the rest of my days? Does anyone actually want anything beyond this lie?

It’s easy to say, and it’s easy to hear. I’m not requiring anything of you when I answer your question this way. You can just keep going about your day. Even for friends and family, it’s easier that way. No need for you to do or say anything. I’ve given you a ‘free pass’.

But I could get side-tracked by that as I write. It’s easier for me if I don’t tell you how I really am here, on my blog, either. Maybe it’s easier reading for you too. But I’m going to push myself to not opt for the easy. You see, I’m not good. Actually, I’m struggling.

I know you want to read positive stuff on a blog that refers so often to hope, but right now I’m struggling to find my hope.

My mood is dropping and I am fairly sure it has to do with the stress in my life right now. The more stress, and the more I struggle. My stress comes mostly from caring for my mother. She needs more from me now, but has less to give me in return. She mostly knows who I am. She certainly always still recognises me, but clearly has trouble connecting that recognition to the right person. Me. Sometimes she thinks I’m her sister and she used to mistake me for my father. That doesn’t happen so much now. She struggles to remember him at all (he died nearly six years ago). Nearly 54 years of marriage seemingly wiped from memory! This illness is so cruel.

It’s hard. I don’t have expectations of her, but it’s not easy day after day, teaching her the same things. Telling her stories of her life. It would be heartbreaking no matter who she was, but this is my mother. All the things she taught me as I child, I now teach her. And I feel very alone in this.

There’s more, though.

My eating is considerably off track, and to even admit that much takes an enormous amount of courage. Much more will require more than simply an empty screen before me. You’re just not going to get the details, this time anyway.

In the last year, I have lost 17 kilograms with no conscious effort. I know, lots of people would love that to happen, and true I love that I have lost it. I needed to, I was overweight (yes, people who have had Anorexia twice can be overweight!) but I hadn’t done anything to lose it. It has really gone through firstly ill health back at the middle of 2016, and the rest I guess, has been through stress.

The reason I’m telling you this though is that unless you have been where I’ve been you have no idea how tantalisingly dangerous it is. Seventeen unconscious kilos are tempting me to consciously step back onto the eating disorder ‘merry-go-round’ (don’t think for one moment though, that such a move would be the fun of the fair!).

I don’t make it a habit to weigh myself, mostly because of this reason. It’s too easy to get taken in by one kilo lost and before you know it I’ve been sucked into losing 20 or 50. I was weighed when I was admitted to hospital briefly back in July. I saw then that I had lost seven kilos. Then I was admitted to hospital briefly a few weeks ago for an minor procedure. The deadly mistake was looking down at the scales. And I choose to use the word ‘deadly’ because that’s exactly what it can be when you have an eating disorder.

So I admit it. I am back to considering every mouthful. And part of me hates being back there, but I admit, part of me loves it. That’s the ‘deadly’ part.

But then, there is more…

  • My black and white thinking is very definitely more black and less white.
  • There is no light at the end of the tunnel. Whoever said there was, was fooling me.
  • Everyone is against me. I struggle to think anything different. I can’t believe that anyone would be on my side.
  • I said a few weeks back that I would write about anxiety. Meanwhile,it’s just getting bigger and bigger. And yes, more consuming
  • Is the sun going to rise tomorrow? Right now, I just don’t know.
  • I’ve come to a new appreciation of people who choose to keep their curtains pulled shut through the day. Sometimes it’s a way to cut the world out. They can’t get me! I fool myself so easily!

I’m sorry if you came here for a post full of recovery and hope. I guess what I need to say to you is that recovery and hope is not a linear journey. Sometimes the dark overwhelms us. Sometimes people are throwing so many lemons at us, that it is almost impossible to make the damned lemonade. Sometimes all we can do is throw the lemons back. Let someone else make the lemonade, I’d rather have a coke.

Thanks for reading

 

Cate