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

You May Think That I Am Crazy

You may think that I am crazy by the time you have read this post, but that’s okay. As long as you don’t abuse me, I am finally (after 50 years) getting to a point where what you think of me doesn’t worry me. It doesn’t change me. You’re entitled to your opinion.

Do you believe in the divine? The supernatural even? Maybe you believe in God, or maybe you believe in some other religious or spiritual being. Do you believe that there is more to this earth than you, me and the animals who inhabit it? I do.

I believe that there is something more. I can’t give you a complicated explanation of why I believe there is something more. I just do. I believe there is something more than us, and there is even something more than our lifespan. Please don’t ask me for an explanation. My beliefs come from my experience. I have experienced what simply must have been a force beyond human kind. I will never be the kind of person who can give you a lecture on this. Maybe I’m copping out, I don’t have to have all my theories worked out, for me to be at peace with what I believe. That’s enough for me.

I started on this earth in a Christian environment. My family lived and breathed the Bible and its teachings. It was my father’s calling in life. My views have changed since then, and I know that some of what I believe wouldn’t sit comfortably with those Christians from my upbringing. That’s okay with me too. We don’t all have to agree.

Time to get to the point, though…

A few days ago I had a particularly hard day with my mother, who has Alzheimer’s Disease. We were talking about family and I was ‘introducing to her’ (for want of a better word) photos of family members whom her decaying brain had wiped from her memory. It was tough. I don’t think it was tough on her, but it was definitely tough on me. When I left I knew that there would be many days ahead when we would repeat the process of identifying the photos of family sitting on her window sill. Explaining why their particular photos were even there.

When I left I really wanted to be with those family members we had identified, but there were none close by. More so, the person I most wanted to be with was my father, who died nearly six years ago.

I did the next best thing and went to the cemetery to spend some time ‘with Dad’. Okay, so it wasn’t really Dad but I believe I can go there and talk to Dad. I don’t do it often. Just when I need to focus on remembering him and identifying for myself what advice he might give me.

I believe that where ever Dad is now, he can hear me. What’s more, I believe he can help me, particularly as I care for my mother. Before you start worrying, no I don’t see him but I guess I can remember being with him. Being loved. Being with someone who believed in me, and always importantly, had hope for me.

When I go to the cemetery I regularly take some coffee. I sit on the grass, drink my coffee and talk to Dad. I usually go at a time when the cemetery is pretty much deserted, just the gardeners maybe, somewhere in the distance. It’s peaceful. And after I have removed the odd weeds growing, I focus on talking to Dad.

That day there was no one there when I arrived. I really needed to focus on how Dad might help me if he were still here. I felt like something my mother had said had swept the wind right out of me. I felt lost and desperately sad.

After maybe fifteen minutes, another car pulled up. Two women and a dog got out and headed towards me. In a huge cemetery, they happened to be coming to a gravestone just two down from Dad’s.

The dog (a Jack Russell) immediately came over to me and was jumping over me and eventually sat down right next to me. The two woman were amazed that their dog was so friendly with a complete stranger. I asked the dog’s name. Her name was Hope.

This is where you might think I’m crazy. I believe that dog came to me as a messenger sent by my father. Hope was a reminder for me that there is hope. It was exactly what I needed, and once I realised this I felt an instant feeling of peace. I no longer had to worry about my mother. I could be at peace. And one day, my mother would be at peace. For a number of reasons that day, it was exactly what I needed.

A dog named Hope.

Think I’m crazy if you want to. It doesn’t matter to me. I believe that there is not just one explanation of the divine forces at work on our planet. There is space for us all to have our own beliefs. There is no right or wrong. If you want to laugh at my interpretation of my encounter with Hope (and hope), that is okay. That’s your choice. What matters to me is that it helped me enormously that afternoon to have that encounter. And so often such gifts for me come in the form of animals. I am so lucky.

“Some people talk to animals. Not many listen though. That’s the problem.”

A.A. Milne, Winnie-the-Pooh

Thanks for reading

 

Cate

Human 2 Human

Relationships with other humans have to be one of the most difficult and complex aspects of life. They are for me anyway, and there have been a few issues which have reared their ugly head for me in the past few days.

I know that friendships, family connections and intimate relationships are really hard for me and now days I am inclined to pull back from all of them.

With one failed marriage behind me, along with a string of failed relationships, I am alone and pretty certain that I will remain alone. I believe now that I not supposed to have  someone by my side. I have never believed that there is a soul mate for everyone, nor will everyone find their soul mate. Actually,I suspect my soul-mate might just have been and gone.  And sometimes circumstances just get in the way and block the way for what might have been true love.

On the other hand, it was some years ago now that I also came to the conclusion that close friendships were perhaps something I would be best to avoid. You may call it sad but I call it safe. After being let down by a number of friendships, I made a specific decision that friendships I might have been able to rely on were no longer worth it. Yes, I do have friends but not many and I try hard not to rely too much on them. I am inclined probably too much to withdraw rather than depend.

And then there is family. I have been fortunate to date with my family connections. Maybe they didn’t always understand me or my needs, but they did seem to love me. I think they still love me, but their availability  for me to rely on them is perhaps changing.

I know that my Borderline Personality Disorder (BPD) plays a part in how I relate to other humans. I’d like to say it isn’t part of the story. I’d like to say that I have it ‘under control’. But it is part of me, part of my personality if you like, and no matter how many ways I learn to control or even recover, I know that it will always be there.

An article I read highlighted for me some of the issues that float in and out of importance as issues for me with BPD:

“Most patients named gaining control over emotions, mood swings and negative thoughts, followed by reduction of municipality, self-harm and other destructive behavior and improving self-acceptance and self-confidence. However, improving relationships and improvement of social participation, social competence and job situation has been mentioned as important.”

It speaks of the issues important to patients with BPD in the treatment they need. But I use it as it easily highlights in a paragraph issues I deal with when connecting Human 2 Human.

It’s hard. It’s constantly hard, and with those issues at play perhaps it is easier to understand why I choose so often to withdraw.

This week someone important to me said:

“I don’t care…” [about you]

Ouch! Actually, it was more than “ouch”. It was fuck! Under my breath, of course.

The rest of their words no longer mattered. I had heard that they “don’t care” I didn’t matter anymore. They possibly weren’t even aware of having said it, but it was loud and clear. Maybe this person was someone I could no longer rely on (for any number of reasons). Maybe this was connected to my having BPD. Maybe I was too much. Maybe I had misinterpreted what another person might have taken differently. But then maybe it was simply about their issues not connected to me. It hurt anyway.

Do you see why Human 2 Human is hard?

Another relationship came up on my Human 2 Human radar. I know my mother’s Alzheimer’s Disease is not about me, but how I respond to something that is ever-changing is totally about me. I can’t escape this one.

In a conversation with my mother, I discovered that her memory has gone so much that she appears to know nothing of my life beyond my name and that I am her daughter (I am thankful that she still knows this). She also appears to know nothing of her life when I have been a part of it. Of course, I knew that this was coming some day but that day had arrived and it cut deep. My own mother doesn’t know me. Maybe even I don’t exist for my mother anymore.

My father passed on nearly six years ago, and it seems that while my mother sits in front of me, she is in some way gone too. I have heard the expression of grieving for someone who still lives, and that is even harder than it sounds. I feel like the wind has been blown out of me.

My parents have always been very important to me, although I admit that my mother and I have never been close, never even been friends. The tension between us has gone now. Something I can’t totally explain. But maybe she has gone too.

Perhaps my feeling of loss this week connects to my BPD. I know there will be a connection because there always is. It’s just that I have yet to work it out, to be able to put it into words. Meantime it hurts. Both instances I have described here. I need to hide away and lick my wounds.

I want the luxury of time with my therapist again, but I have no therapist anymore.

All I can do is write. I don’t claim to have any answers. Just questions. I hope that what I choose to write and share with you makes even the tiniest ounce of sense. I suspect it will make more sense with others who travel with a Borderline mind.

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

 

Fighting Tooth And Nail

That’s what I am doing. Fighting ‘Tooth and Nail’. Nothing seems easy and it’s as if it’s one thing after another. Know the feeling?

When I was at high school I read a book that affected me profoundly. It was New Zealand book Tooth And Nail: the story of a daughter of the Depression by Mary Findlay. I read it firstly because at the time I was interested in the era of The Great Depression. I think we had been studying it in History class. My second reason for reading it was that the author, Mary Findlay was the great-grandmother of one of my closest friends.

She fought Tooth and Nail.  Amazon describe the book as this:

“This a the true story of Mary Findlay during the bitter days of the Depression. When her mother dies and her drunkard father harasses her, Mary is forced to fight tooth and nail for food, work and a place to live.”

It affected me profoundly not just because of the connection to my friend but also that it was a life lived much harder than anything I had ever known. My life seemed easy by comparison.

Right now nothing seems easy. There is one thing after another. I’m sure there are those in my life who still think I have it easy. I don’t have a 60 hour a week job, I don’t have, say four children, nor do I have a partner to think about. It’s true. Compared to Mary Findlay’s life I perhaps have it easy. But to me, nothing seems easy right now. And when it all boils down, it is the person’s own perception that matters.

I could easily write a post about each of what I see as my current hardships. But I haven’t. Mostly because at the time there haven’t been words, and so you won’t have seen posts from me since before Christmas. But here is a taste.

  • My 88-year-old (yes, she had a birthday) is deteriorating fast. Her physical health continues to be great, but her mental health in the form of Alzheimer’s Disease is going down hill fast. I’m learning as I go. Some days there is little to recognise the woman she was in my growing up years. And tomorrow? I face what happens to Mum next in terms of the care she needs now.
  • My doctor stripped me of Fibromyalgia. He says I don’t have it, even after four years of being treated for it and having originally been diagnosed with it by a doctor with more qualifications and experience. Apparently I simply need some Art Therapy (yes, really!) to cure my symptoms. Thankfully a few weeks after this pronouncement he announced he was leaving the country permanently. I am to be assigned a new doctor, and time will tell just what s/he will have to say.
  • My dentist has just presented me with a whopping $2,000 (that’s a whole lot of money in NZ) quote for the work I need to stop some corrosion happening in my mouth. Hear this, if you take medication regularly. The $2,000 problem is caused by dry mouth and having been on lithium for the last 12 or so years. Both of these have a terrible effect on teeth. Right now I’m still trying to pick myself up off the floor. I was gobsmacked! I am likely to have these dental issues for the rest of my life (if I listen to my Psychiatrist and stay on the medication for life, as we have previously agreed). I have no idea how I will possibly pay for this work but meanwhile, I am eating only soft foods to avoid further corrosion to my teeth (particularly my front teeth).
  • And I can’t forget the fibro symptoms of mainly pain and fatigue. You know the fibro that I don’t have? Well, those symptoms continue with more fatigue than ever. I go deal with whatever needs dealing, and then come home and collapse, literally. Day after day.

That’s just a taste, perhaps the really big issues, and maybe that doesn’t seem like a ‘tooth and nail’ battle. But it is. Like I suggested above, it’s how it seems to me that really matters. I might not be in the middle of the Great Depression like Mary Findlay, but it seems like my own ‘tooth and nail’ battle (emphasis on the ‘tooth’ because if I don’t find $2,000 soon I’ll be looking at whatever a pair of dentures cost).

It was a long time ago that I read Mary Findlay’s book but I still remember the impact it had on me. Maybe I didn’t learn this at the time I read the book but I know now that we can’t compare our hard times. As a 15-year-old reading that book, I thought her life was incredibly hard and mine incredibly easy. Actually, I was having my own pretty hard time back then, but I gave no value to my hardship. Now I have learnt that behind the scenes other people can be having incredibly difficult times. Harder than we can imagine. And it really isn’t possible to compare.

If I was to ask each one of you what are the hard things in your life right now, you could probably come up with your own list (like mine above but different). We all have our hardships, and all of those can have a bearing on  mental and physical health. Whether we tell others of our hard stuff or not, it’s there and we’re probably fighting a ‘tooth and nail’ battle to simply keep afloat.

I haven’t listed my current hardships out of wanting sympathy. Or wanting you to say you’re sorry for me. Rather I share it with you because maybe it reminds you that we’re not alone. We all are probably fighting ‘tooth and nail’. Life is hard, but we don’t do it alone. Just because your hard stuff is different from mine, it doesn’t stop me from being aware that you’re having a hard time. And that, makes a difference to me, so perhaps it makes a difference to you.

Thanks for reading

 

Cate

To See A Light That Shines

Source: To See A Light That Shines

“For me, and maybe for you, if you’re in a similar situation, it became harder to let my light shine as I got older. As my mental illness took over, it became a life and death battle to keep that light shining. Depression wanted to suck the life out of my flame. It wanted to kill the spirit within me. It wanted to change, and even murder, who I was. Actually, there were times when Depression, Anorexia and Borderline Personality Disorder did a good job.”

To See A Light That Shines is my latest post on A Canvas of Minds…

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

Vicious Circle

It goes round and round. Each time the circle escalates and the effects grow more.

Stress causes Pain cause Stress

Oh, and add in depression.

It looks like this:

Image credit: www.orthop.washington.edu
Image credit: http://www.orthop.washington.edu

I have one month to find somewhere else to live.  At that time, the repairs to earthquake damage to my home will finally begin. Don’t get me wrong. Because I’ve been waiting nearly five years, I am happy that they are finally about to start. Very happy. The repairs will take approximately six months.

The biggest stress right now is that I hope my insurance company are going to help with the costs of shifting and somewhere to live. But they won’t tell me how they will help (I mean specifics beyond what the policy document says) until the insurance company doing the repairs provide a specific completion date. I’m waiting. And I understand because they can’t finalise exactly how long the work will take until they lift up the floor and see just how bad things are down there. Meantime though, what my insurance company want is a best estimate.

The reason that’s the biggest stress for me right now is because I can’t find somewhere to live until I know what assistance I’m getting. You see I expect to have to pay three to four times what I am currently paying in rent. Yes, three to four times! And that is more than I get in income each week. I REALLY need my insurance.

My current rent is low, thanks to my family who own the property. But equally rents in Christchurch have skyrocketed since the quakes because of demand for housing, and a little bit (that’s generous!) because many landlords have been mean and taken advantage of the situation.  The Government keeps reporting that rents are coming down again, but not when you look at what is advertised. Rent is still really steep. The demand for rentals is not as great as it was maybe two to three years ago. Repairs are getting completed and homeowners are moving home. But it’s still not going to be easy.

So there is plenty of stress in my life, and the vicious circle kicks in because, for me, stress is the biggest trigger to fibromyalgia symptoms. Stress equals pain. And pain equals stress because pain means I can get less done. And when pain goes on, increasing stress, then I start to get depressed. Or more accurately, more depressed. Oh, and add in fatigue… and an unhealthy amount of brain function. In other words I can hardly function at all and I’m hardly likely to come over as a great budding tenant to an agent or landlord.

This week I have been in a lot of pain all week (it’s Thursday here). I have rated my pain  as “being able to leave the house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping and using the computer“.

I have limited activity to visiting my mother (she has Alzheimer’s and doesn’t really understand why I can’t visit her). I don’t know for sure but I suspect an Alzheimer’s patient works on the way many people choose to view Invisible illness. S/he can’t see it so it doesn’t exist. Maybe that’s a bit harsh, but I think it’s something like that. Certainly there is little understanding. From Mum’s perspective, I get it. Some others, I’m not so charitable.

Of course, Mum’s illness simply adds to my stress. Today I decided to say “no” and not visit her. I wondered whether by keeping up the daily visits, whether I was exacerbating my own illness.

There are actually more and more facets to my vicious circle. What I really need is that completion date and then the details of how my insurance company will help me. Right now insurance companies are not my favourite people…

Instead of focusing on the negative, the positive is that by mapping out that vicious circle I actually remind myself what is going on. Better yet, maybe I can stop it all winding up just through awareness. I know for myself that if I can limit the flow of stress then I can limit the onset of pain and depression. And that will make for a happier Cate. Anything for that!

PS. By the way, do you remember Lucy? Lucy is my music hallucinations, and she continues. This week she is louder and more invasive than ever. I’m starting to think that Lucy is also affected by stress.