To Kill Its Power

It’s been a while. And there’s a reason for that. Not the usual writer’s block but rather simply not knowing how to “do it” anymore. I’m talking about writing the post. Stick with me and I’m going to try to “do it”. I’ll explain as we go along. There won’t be anything fancy, just text, because I simply don’t know how to do that stuff anymore. It seems to have gone from my brain and I’m back to being a beginner again. I can hardly find my way around a keyboard anymore.

A few weeks back, a friend asked me how I was. That’s always a hard question. Do they want to know the truth? Can they handle the truth? Can I handle telling them the truth? Or are they just being polite? For a multitude of reasons, those questions included, and a number of others, I told her was fine, just pretty tired.

It was true. Well, the tired bit was. The rest was far from the truth, and for that reason I apologise to my friend who asked. At the time, I was actually terrified, but past experiences (with other people) threw up warning signs in front of my eyes:

“Be careful what you tell people.
It might not be what they want to hear.”

So she got the “tired” line. I really wasn’t sure anyone would handle my “terrified” line and I wasn’t even sure I could explain it if it turned out to be a genuine concern of how I was.

A few days later, a meme jumped up on my screen. They have a habit of doing that, and most are there to laugh at and keep on scrolling. But a few actually have some wise words. This one, struck me as perhaps along the lines of what I could have said. I would post the actual meme, but that is way beyond me right now. So here are the words:

“Are u ok?”

no, I’m not. not at all.
my life is falling apart. i’m depressed.
my life is falling apart.
i want to tell someone.
maybe I should tell u. i
need someone to hug me. tell me it’s
gonna be ok. i want to tell someone
everything. that’s happening to me…

but its ok. i’m fine. i’m just tired, thanks.

And then this morning, another meme… (I promise this won’t be all memes)

It was almost word for word, what I should have said had I thought my friend would handle the truth, perhaps if I could handle telling her truth. I couldn’t. Because I was terrified and putting it into words was too much. And anyway, maybe she was just being polite. I suspect now that she wasn’t, that she really did want to know. But it was too hard. I was too scared.

Sometimes you just need to talk about something ~
not to get sympathy or help, but just to kill its power
by allowing the truth of things to hit the air.

Karen Salmansohn

That hit me. It needed to hit the air I could (even if slowly) do this, to kill its power. And maybe even to share something that someone else might just find helpful.

~

Six weeks after my mother died of Alzheimer’s Disease (back in 2019), my doctor concluded that brain fog wasn’t “the” problem (for me). It was a bit more. I have Mild Cognitive Impairment (MCI). The irony!

Years of supporting my mother through her hellish journey, and now, perhaps I am entering my own.

Of course, MCI is not a death sentence. It’s not even a sentence that says I will definitely develop Alzheimer’s Disease. But it is an indicator that dementia, in the future, is possible. And meanwhile, my cognitive functioning is not quite what it should be, especially considering my age (I’m 56).

If you want a more accurate explanation of MCI you’ll have to talk to Google. I’m not a doctor. More accurate explanations are out there, For now, I just need you to read what I am putting to air.

This isn’t about explaining the symptoms. They’re are there, and growing in intensity. That is why I am terrified. I’ve seen dementia at its ugliest. Not just in my mother, but my grandmother and perhaps more so, the twenty five fellow sufferers who Mum lived with for three years in a dementia facility.

It’s not just about your old grandmother forgetting who you are. Dementia is so much more.

But maybe I will never develop dementia. Let’s hope not, even though some warning signs are there.

Thought, and turning thought into action, is the bit that I’m battling right now. Seeing something through from a thought, not getting distracted or sidelined (by self) and making something happen.

Writing this, is harder than it ever was even nearly 10 years ago when I started blogging. I’m a beginner again. I don’t know what symbols mean anymore and I don’t know how to make anything work the way I think I want it to. Crazy screens pop up in front of me and I have no idea how that happens or how to get rid of it without pressing ‘backspace’ or ‘delete’ a whole lot of times.

MCI took another step up recently when I forgot a PIN for a bank card. I had used it for about five years with no problem, but this time? It was just gone! I thought I’d remember in an hour, maybe even tomorrow. But days later? It’s gone. And I eventually admitted defeat and asked the bank to change it.

It really rattled me, even though there are lots of things now days that remind me that MCI really is what I’m dealing with. Forgetting is the least of my worries. I am just in a state of mild confusion. Well, it doesn’t feel so mild anymore, and it seems pretty constant. That’s what terrifies me. What I took for granted is so much more difficult.

For those who battle brain fog, think brain fog at its worst… and on constant steroids.

Everything is becoming harder to think through and to turn tinto the action I want. Not just on bad days but every day.

This is embarrassing. No, it is. Please don’t minimise this and tell me we all struggle sometimes (particularly as we get older). That’s true but it’s not what I am talking about. It’s embarrassing to use wrong words, or not know the word you want to use. It’s embarrassing to not be able to do the things you used to take for granted. To lose track of a conversation. And it’s embarrassing when people try to cover it up by laughing. There is stigma involved in how we function on a cognitive level. It can be hilarious apparently, if it’s not you it’s happening to.

It’s also so frustrating. Years ago I thought by now I’d be at the top of my game by now. I’d have seen my career go the way I planned and life would be pretty good. It hasn’t happened like that. It’s not happening the way I wanted in so many ways.

I have no (accurate) thought about where I’m headed, because I just don’t know. And I don’t know at what speed any further decline will take. But I look at the last two years and I’m terrified.

I wonder how a possible dementia illness might interact with the chronic illnesses I already have. How do I deal with likely kidney failure if I have Alzheimer’s? And how would I deal with the pain of fibromyalgia if I have little comprehension of, well anything?. How does dementia work alongside Borderline Personality Disorder? All these questions. Over and over in my head.

It’s hard not to see my mother’s journey and ask myself more questions about what her reality was. It must have been such a lonely existence for her, inside her head, and while I know that I was there for her every step of the way, I wish now that I had comprehended better what she was experiencing. I wish I had been better able to comprehend life in her shoes.

But cognitive decline is not like that. Scientists don’t know enough. No one can tell me what is ahead and I can’t accurately pinpoint how it will feel for me in the future. I just know that right now I’m terrified. I’m not fine. I’m not ok. I was right to say I was tired, because I live with chronic fatigue and being tired is part of that. But it wasn’t the real story.

In my last post (a while ago now) I said I wanted a village. I’m starting to realise that actually, I need that village. MCI is something that you can live independently with, but I guess for me it is becoming a lonely, rather scary space to inhabit.

For many reasons it’s hard to ask for help. And so I usually don’t. Perhaps I need to find a way of communicating that I’m beyond tired… and right now, I’m not fine. Maybe then, I might lessen the power of the terror.

Thanks for reading!

Cate

Wanted: A Village

Imagine you’re running an ultra marathon. I’m talking miles and miles (kilometres in my part of the woods), in desert conditions. The good thing is you know there’s an end. In spite of the pain and immense fatigue, you know you will eventually arrive at the finish. And you know, that should you become injured, you can always pull out.

But what if you don’t know there’s an end? Or you don’t even know what an end would be like? What if you don’t know you are running? You’re just putting one foot in front of the other, with no sense of what you are achieving, if you are achieving anything at all. Regardless of what you know, you are on a journey, but of that journey you have no idea of a start, middle and finish. It just is.

Mum was on such a journey for about nine years. It’s name was Alzheimer’s Disease. I have to assume she had no sense of a start, middle and finish simply because she mostly wasn’t able to communicate her thoughts to me. She could manage maybe one or two words at the most. And sometimes, they made little sense to me. So I mostly had to just assume, based on what I read about the disease and others who lived with it. Actually, for that social media was a godsend.

I was on that journey with her. Her support team. I ran every step with her, but I had an advantage. I knew the journey would end. I didn’t know how the end would look, when it would happen and what it would be like for her or for me, but I knew that the ultra marathon would, one day, end. I had a huge advantage.

Mum’s journey ended two years ago. I thought my journey would end too, but it goes on. My life is forever altered by the journey Mum and I shared. I will never forget what I saw, what I felt and what I witnessed Mum go through. And I will always have complete respect for anyone who has to go on a journey like ours. For those who choose to stand by their loved ones.

When we are not on the sort of journey Mum was on, even like the one I was on as the support crew, it’s easy to think that Alzheimer’s is simply about lost memories. It’s not. Sure, it would be easy to think that. It’s what people talk about but there is so much more to Alzheimer’s, or any type of dementia, than simply that s/he can’t remember your name.

“To understand what dementia really looks like, go on an imagination trip. Imagine you wake up tomorrow morning and you are in a strange house, in a strange bed and there is someone in the house, you have never seen before. You know someone has stolen your wallet and your money. Now, imagine you do not know where the bathroom is, how to get a glass of water and do not know if it is day or night. You see people coming through the windows, the floor on fire and wonder where your mom went and when she will be back, a mom that died over 50 years ago. You worry about your daughters and why they are not home from school yet, even though they are in their 40’s and 50’s. Your body is so stiff and rigid that walking is difficult. You cannot see anything outside of a space the size of a shoebox and do not understand that by looking up, down or to the side, that you can see more. You get unbalanced and fall, but your muscles have weakened to the point you cannot move or lift yourself up. You cannot cut your toenails or wash your own feet. You have not showered or changed your clothes in days but in your mind, you just took a shower and put on clean clothes… You have things to say, but after 2 or 3 words, you forget what it was. You try to say a common word, but only gibberish comes out. No one understands you, so you just give up. You have always been patient & kind to everyone, your spouse has never seen you lose your temper or say a harsh word. You have always put their needs above your own. Now, you curse at them, throw things, threaten them and others and tell them to get out of your house on a daily basis. Your relationship with God was the most important part of your life. Now, you do not understand who God is, how to pray, or even want to go to church… You do not know the month, year, day, time or season. You do not know anyone around you and everyone and everything is strange. Now imagine, you are not even aware of these changes taking place… People stop coming to see you and talk to you like a child.

These are just a few things a dementia sufferer goes through on a daily basis. They are no longer the same person, but they still see themselves as the same and everything and everyone else has changed. Dementia is so much more than just forgetfulness. There is no cure, you will never improve, your brain deteriorates to the point it no longer tells your body and organs what to do, so it shuts down and you will die within a few years. So, when you hear someone has dementia, think about what it really means, it is not just forgetting things.”

Excerpts from ‘Understanding Dementia’ by Linda Eutsler

That was Mum’s journey. And a whole lot more. My journey was to witness it and support Mum every inch of the way. It hurt like the hell that is dementia. Her journey ended the day she died, but mine goes on.

There are many things that will always stand out in my mind as “the worst” but to be honest, it was all worst. It was all worse than anyone should go through or worse than anyone should have to witness and support alone. If you’re going to support a loved one through dementia, you’re going to need a whole village behind you.

There are two instances (of many) that I supported Mum through alone and will never forget the pain they caused me. One was having to take her to the dementia facility she was being admitted to. I told her we were going out to lunch. She had no idea she wouldn’t be coming back. It was one of many small lies I told Mum in our journey of about nine years, in an attempt to make it as easy (dumb word!) for her as I could. (I know many people object to telling lies to someone with dementia, but I chose to do this when it would lessen the pain/confusion my mother experienced).

It was a place she never wanted to go. We had actually talked about it before. Her mother had been on a similar journey years before so it wasn’t exactly a surprise that now Mum was on the same journey. We had previously agreed that her living with me would not work for either of us.

I felt I had deceived her. I felt that I had let her down. But I also knew it was what she needed.

The other “worst” that stays in the forefront of my mind, is the day I physically held her down in an MRI machine. Mum needed an MRI to best judge where she was at with a badly ulcerated leg that had landed her in hospital. She needed it but had no idea of what was happening to her. I guess all she knew was she had been put on a bed and into a “tunnel”. Her legs were strapped down to hold them still. I had to stand at her head and hold her back in her attempts to free herself. It was quite a fight. The alternative would have been a general anesthetic but I knew that Mum probably wouldn’t survive it. That fifty minutes was one of the worst times of my life. Again, I knew it was needed, but everything in me hated that I had to hold Mum down when she had no idea of what was happening to her. Even whether she would ever be released from this prison called an MRI machine.

Why don’t I just “move on”? Because these events were traumatic for both of us, and while she was not alone (she had me), I was alone. I didn’t have a village behind me. I went home alone with my thoughts. How I felt having held Mum down. I was truly traumatised by much of what I had to do. Actually, I needed that village.

Two years on from Mum’s passing I am able to see it all with more clarity than I felt at the time. I know that Mum is at peace. That her ultra marathon is over. I know I will never have to do anything like that to her again. I know that of each “worst” time, I did what Mum needed of me. But it was so hard to do that alone.

The prevelance of dementia in our society is growing and we now all possibly know of someone who is experiencing some form of dementia, or perhaps someone who supports a dementia sufferer through caregiving or day to day support.

Mum needed her village just as I needed mine. Unfortunately we were both pretty much alone, but then there were other residents where Mum lived who didn’t even have anyone in this world. No one visited them day in, day out. If you think it doesn’t matter if you don’t visit your family member, you are wrong.

(Mum and me – 2018)

Caring for a loved one who has any form of dementia, regardless of whether you’re providing 24 hour care or supporting through some form of residential care is impossibly hard. You give up your life for the journey. Many give up their homes and their jobs. Your priority is your loved one. Maybe all your money goes towards their care. You are on call 24/7. My mother needed me in the middle of the night on numerous occasions. I would never have considered not being there.

But it’s really hard to find the support you need. I felt alienated from the world. Mostly friends and family didn’t get what I was doing. Some were vocal in it and others just showed me in their actions. They weren’t there for Mum and they weren’t there for me.

One of Mum’s relatives tried to persuade me that I shouldn’t bother visiting Mum. “She’s all but dead, anyway” she told me. “What’s the point in visiting her when she doesn’t know who you are?”, she questioned.

The point was that I knew who Mum was. She had raised me and she had always loved me (in spite of the difficult relationship we had always had). Perhaps most importantly she was alone, and I knew that I wouldn’t want to be alone if I was ever in her situation. That’s the reason I had made a conscious decision to be there for my mother. And why I would do it all again if one of my family needed me.

I didn’t understand though, that I would be alone or more importantly now, that my journey would go on beyond Mum’s. How do I pick up my life from where I left it the day I made that decision to support my mother? I didn’t give up a job because chronic illness had previously demanded that. I did give up putting myself, my own illness and my other needs first. I admit that I had purpose in supporting her, and when she died, my purpose was gone. The day after her funeral, I questioned what do I do now?

Unexpectedly (to me anyway), I also lost a pseudo family. I spent so much time at the facility where Mum lived that both the staff and the other residents became like a second family. Relatives of other residents became friends. I spent Christmas with those people, I shared in their joys (yes, joy happens in such a place) and their sorrows. I shared celebrations and I shared heartbreaks. I mourned deaths with them.

When Mum died I was relieved because her ultra marathon was over. There would be no more suffering for her. She was finally at peace. But I still grieved. I had lost my Mum, and as my father had already passed some eight years before, I was now an orphan. Yes, I was relieved but I was sad too.

I had not only lost my mother but having finally found a way that her and I could relate to each other (she at least, had tried for all of my life to find a way we could be together peacefully) and love each other, I had lost that and wished that we had found an easy relationship in the years that she was well. I had lost my purpose, I had lost the people who had given up on both Mum and on me. I had lost that family and what had become like a second home to me. I had belonged (even if it was in a dementia facility) and now I didn’t fit anywhere anymore.

In the last months of Mum’s life, I was burning out. I was exhausted. That final year had been full of medical issues and hospital admissions for Mum, financial problems, difficulty getting the care she needed by then and just getting through. I was going every day to feed Mum her main meal. She no longer knew what to do with a plate of food in front of her, and had difficulty swallowing what she did eat.

But I was tired .My own chronic illness was getting worse and becoming harder to ignore while I focussed on Mum. I didn’t know when our journey would end but I did know I was going to crash when I got there.

And crash, I did. No one really got the size of that crash. Quickly, depression enveloped me again. No purpose, and what became no hope for what might be my future. My own chronic illness became my purpose, and I can tell you that such a purpose really sucks. All I could now see was that my illness was what now separates me from my village. Like Mum’s dementia, people don’t understand chronic illness and so I continue to be alone. Some would say it’s my choice. Perhaps it is. I don’t know

They say it takes a village to raise a child.

“It takes a village to raise a child” is an African proverb that means that an entire community of people must provide for and interact positively with children for those children to experience and grow in a safe and healthy environment.”

Wikipedia

I say it takes a village, regardless of whether you’re a child or not. All of those who have dementia, and those who support those with dementia, need a village around us. I still grieve and I still need that village.

“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.”
― Fr. Henri J.M. Nouwen

One final thought… who will be my village when what Mum went through, happens to me? I don’t know.

Thanks for reading!

Cate

Related Reading

And That’s What Matters (With These Wings)

Norah’s Daughter (With These Wings)

Bewildered (Infinite Sadness or hope?)

Me And Mum (Infinite Sadness or hope?)

My Saddest Day (Infinite Sadness or hope?

What Can I Do?

Aka: “Be Kind To Each Other”

This past week I had to ask for help. It has been a particularly hard week for health. Pain levels have been high and fatigue was through the floorboards. I needed help!

Chronic illnesses meant that I wasn’t coping physically. I was managing to feed myself but that was about it. I managed one shower in seven days, and after that one I need a rest. You’d never think a shower could be so exhausting, until you lived with chronic ill-health.

My mental health was down too. They tend to go hand in hand.

Just my ability to make sense of what was happening around me. I was confused. I needed to hear things twice before I had any hope of knowing what was being said, what it meant and how it affected me. Brain fog was a factor but it was more than that. It felt like my brain was giving up on me. Much like my body.

But this isn’t a “feel-sad-for-me” post. It’s more of a “look-into-my-world-for-a-moment”.

I needed help this past week, but really I had no idea of what help I needed. I just knew that this time I couldn’t just do it myself, as I’m used to, but needed to reach out to someone. Simply to reach out to one other person and say “Help”. Do you know how hard it is to do?

When you live with chronic and debilitating illness, you are often in the situation where things are getting progressively worse. What you could do a year ago is no longer possible. Even what you could do last week can be a monumental challenge to achieve this week.

I needed help this week, and I did actually ask. I summoned up every ounce of bravery and strength and I asked for help. I did it! I did it!

But unless you live with chronic illness, you perhaps won’t understand the achievement. Because we’ve all have to ask for help at some time in our lives, but I’m finding more and more times I need help. That is mostly down to my health. I can’t do it for myself anymore.

There are people in my world who perhaps think the only reason I would ask for help is that I’m too lazy to do it myself. [That says more about you than me.]

Others know me well enough to know that asking for help is anything but easy for me. I always used to be Ms-Super-Independent. I could do it for myself and I would, even if it was a really dumb thing to try to do it myself. Those others know it takes strength, bravery and trust. I have to trust that you will hear me. That you won’t write me off as exaggerating or god-forbid, lazy, and will listen (and respond) to what I need.

I always look at the help-line numbers that the media throw out at us after a particularly sensitive topic like abuse, or suicide, or violence. I know it makes the media companies feel better. The help-line phone numbers they broadcast almost justify the often graphic hurt they have just portrayed or reported on. Social media is often much the same.

The thing is that so many of us would never ring a help-line. Never, ever would we pick up a phone, speak to a total stranger, and hope that just maybe they can help. Yes, there are others who would do this, and would perhaps prefer to ask a stranger but personally I see the numbers on the screen as just a gap until the next post/programme and although sometimes wish I could use them but really know that it is completely beyond me. It’s too hard.

Most times I need to ask, it is beyond me. I am reaching the end of my tether. Whether it is getting a lid off a jar (increasingly difficult) or something more serious and even life-threatening. Sometimes it is just too hard and what I need is someone with enough compassion to say “what can I do?

I was fortunate to have a most loving and compassionate father. He wasn’t perfect by any means but he would listen. He wouldn’t wait for me to ask for help, nor would he jump in with advice (not usually, anyway… I did say he wasn’t perfect). When I finished what I needed to say, he often would say to me,“What can I do?”

Rather than guess what I needed, he opened the way for me to get his help, by taking the ball from me and asking what I needed. What I needed him to help me do with my ball.

I, so often, needed Dad’s help but many times it was too hard for me to ask. There were a million reasons why it was too hard. He knew that but, in his kindness, he opened up the conversation by offering me his help.

This week, I wished my Dad was still alive (this is a wish I have pretty much every week) because there are not many people in my life who seem able to see that maybe I need something but it’s too hard for me to ask.

[There’s also not many that I trust with my vulnerability and helplessness, but perhaps that is a different topic.]

Our world is full of “Call me if you need anything” or “Let me know [if you need anything]”. “Ring me [if you need anything]” or of course, “Text me [if you need anything]”. We (mostly without thinking), expect the other person to initiate their own getting help. We expect them to ask us for help.

But it’s not that easy.

Just sometimes I need you to say, “what can I do?”.

And sometimes I need to do the same.

In New Zealand, where I live, we currently have a Prime Minister (Jacinda Ardern) who often instructs us to “be kind to each other”. It is regularly repeated, especially when she’s throwing us back into lockdown or lowering alert levels, or even telling us of a community-transmitted Covid case (thankfully, that is big news here. For now, it’s not happening often). Imagine. World leaders asking us to be kind. Completely unheard of but so wise.

I think of that when I go down this track of both needing, or maybe offering help. “What can I do?” is being kind. Sitting back and waiting for me to ask. Knowing that it’s going to be beyond hard for me, and that probably I will never ask, so will never get the help I need… is not kind. It’s actually cruel.

It’s not kindness. It’s not compassion. And it’s not what we humans have the capacity to do. Be kind this week. Ask someone, “what can I do?” Give it a go. I know the person will appreciate you doing this.

As for me, I did ask for help this time. It took almost everything I had but I trusted this person and they heard. There was no “what can I do?” in so many words, but the compassion I received went some way to restoring my faith in people to be there. To be there when I needed them to be.   

“Write what disturbs you,
What you fear,
What you have not been willing to speak about.
Be willing to be split open.”

Natalie Goldberg

Thanks for reading!

Cate

Ten Years Later

““Drop, Cover, and Hold!”

This coming Monday, my city of Christchurch, New Zealand will remember that ten years ago, an earthquake would strike and leave us forever changed. We who lived it will never forget where we were and what happened around us. My family will also remember that this is the day we changed.

I know what it’s like to live through a major earthquake… I don’t know what life is anymore. The land has shifted and I’m trying to see where the goal posts are now.

The land had indeed shifted, literally and we learnt all about earthquakes really fast. We had already learnt, from the first quake on 4 Septembein 2010, how earthquakes aren’t just about the magnitude or position on the Pacific Ring of Fire. Instead, what matters most is depth, distance and time. All these will go some way to determining what impact it will have. This one was really shallow, the epicentre was really close and it struck right in the middle of the day. But it was much more that had impact that day, and ten years later, it is good for me, if not still somewhat painful, to stop and remember.

I have written about the events and their effect on my life across this blog and my previous Infinite Sadness… or hope? blog. I don’t intend to repeat myself (too much) and I don’t intend to consider the some 12,000 quakes we went on to endure over the next couple of years. I’m not a geologist, although we all pretended we were. What I am is a person who lived those quakes, who lost, and who carries on.

In the days following the deadly quake ten years ago we came to be taught new advice for dealing with quakes. As I child I had learnt run to the doorway or to run outside. Now I knew that wasn’t necessarily the best idea. Now we were told to “drop, cover and hold“. Drop to the floor, cover your head and hold onto something secure. Perhaps hold on for dear life. What was meant was to hold onto something sturdy like a table or a doorway. But what I learnt as well was to hold onto what is precious, and most importantly who is precious. Those people are what matters.

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.”

— Laurell K. Hamilton (Mistral’s Kiss (Merry Gentry, #5))

185 people died on 22 February 2011. My Dad died suddenly six weeks later. I know it was the stress of loss, uncertainty and change that became too hard physically (but also emotionally) for his heart to bear .

The wounds of the quakes were far more than just those who died or were physically injured. Far more than broken buildings or homes. We were people who bore inward wounds, some that we would talk about and but many that we kept to ourselves in something of an effort to keep going day by day. Some of the wounds, we didn’t even realise we carried. That was perhaps especially true for children, but truly for all of us.

My parents walked away from that quake with only the clothes they were wearing. That was all. They lost their home, most of their possessions, friends, and knowledge and a certainty of where their future lay. They moved in with me that night. It changed them both. I’d go so far as to say that we never saw again the people they had been before.

At the time, my mother was beginning to show symptoms of dementia, but she hadn’t been diagnosed and wouldn’t be for several more years. But she changed. I can’t quite put my finger on what changed in her, but she was a different person, perhaps far away in an emotional and mental place somewhat distant from us. Of course, not only had she lost so much as I said  above, but very soon she lost her husband of nearly 53 years. How could all that not change her?

Did it hasten the onset of Alzheimer’s Disease? We will never know. I just put my finger on that date, and say this was the beginning of a dreadful journey, mostly for her, but also for her family as we watched her slowly drift from us. Eventually she would die from the disease in 2019.

Of course, I had a hard time too, even just bearing witness to what my parents faced. I lost possessions, and I lost a friend. I lived for the next five years in a badly damaged house. But most of all? I lost my parents. Not on the day, but in the days to come.

Eventually, I would be an orphan. Funny thing. We don’t think about that before our parents die, but it’s strange to think that now there is no one there watching over me. Cheering meu on, perhaps. Hoping for good to come my way. Not everyone has parents who ever did that, but I was one of the lucky ones. My parents had stood by me for all my years and had loved me even when I didn’t deserve it.

Now, it was as if I had finally become a real grown up. I really had to stand on my own two feet. Of course, for me this happened before Mum passed, in that thought that I became her cheerleader, her hope and her safety, as she fell furthe into dementia. I guess that’s why I look back at the last ten years and think that day, eventually, took my parents from me. Another generation passed.

Of course, it wasn’t just people. Ten years later I still cringe at the sound of helicopters. Living near the CBD where the worst damage was, and on the edge of the red zone (residential land quickly deemed unsafe for housing and so it was permanently evacuated), there were always helicopters protecting the thousands of empty, damaged buildings and homes. I hate the sound of helicopters to this day.

Sirens are another thing that make me cringe. This was later added to when the Mosque Attacks happened here in 2019. Sirens no longer meant there was going somewhere but rather that help was needed. Something was very wrong here.

As for more quakes, even the slightest tremor has me hold my breath to see if it is going to continue, even get worse. Should I “drop, cover and hold“. Should I head to the doorway? Is this going to be another big one? And relief when it stops.

Ten years later, I have lost people, I have lost possessions. My house is finally fixed. But there is a sense of security that is gone. The worst can happen and what matters can be taken away. But with it, is a sense of what is important. Now I know my neighbours, because we looked out for each other. I know who is alone, and who might have no one to check on them if something bad happens. I know for myself whether anyone will check on me and I know that I can survive.

I can dig a hole in the garden if the sewer has failed. I can live on cold baked beans out of a tin. I know where the torch is and I have batteries. I have many bottles of water. I know I can survive without all the things we thought were important. Perhaps the biggest thing is that I know what is important. And that is the people in my life.

That day in a 6th floor apartment I watched the floor go up to the ceiling and back down again (A concrete floor.) and I watched my parents being thrown on the floor. I couldn’t stand up and it took too long for me to find a safe way out of the apartment for us. We needed to get out “Now“. I looked out the window and all I saw looked like a dust storm. I would later know it was from buildings damaged or collapsing.

All these things, I lived through as did all the residents of Christchurch. “Were you here for the quakes?” is perhaps the indicator of  something shared, something lost, but something we lived through. I think there is almost a comradery in the shared nightmare, that wasn’t just a few minutes but a journey of ten years and beyond.

I learnt to whom I mattered, and who mattered to me. I learnt about empathy and compassion for those who were worse off than me. I learnt how far I would go for the people around me. Perhaps in that, I learnt how I would go on to support my mother through her Alzheimer’s. Perhaps I wouldn’t have been able to do that, without having already have gone through the quakes with her and eventually lost my Dad. She mattered. And that was enough.

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. Simple words but still hard to do.

And finally advice to the residents of Christchurch at the time, from the man who was the then Mayor of Christchurch:

“Cut people a bit of slack today. There will be grumpy people, we all express our stress in different ways. Some laugh and get silly and that can offend someone else who is feeling really depressed and sad….We’ve got to keep working together, we’ve got to hang in there as a city.”

– Sir Bob Parker

Thanks for reading!

Cate
(All images are copyright to Cate Reddell)

A Normal Woman

Lately, I’ve been hanging out on the floor a little more than I’d prefer. Thanks to neck and back pain caused mostly by fibromyalgia, I’ve been flat on the floor with my knees to feet up on the couch. It straightens out and relaxes the muscles far better than any opioid does. For me, anyway.

Lying there is a great place to think, meditate, listen to my music or just consider the lilies. Yes, consider the lilies because they don’t care.

Consider the lilies of the field, how they grow; they toil not, neither do they spin: … 
Consider the lilies of the field, how they grow.

The Bible, Matthew 6:28

A couple of weeks back, some kind soul gave me some lilies and there I found myself, under the lilies (my view above). I love the smell. I love the pink against the green. It’s peaceful. When they open, I have to remove the pollen, in case of allergies. But I don’t care. They’re there, in a vase, and they were perhaps sheltering me from where my mind was taking me.

Normal. Am I a normal woman? All these years and more so lately, I still find myself asking this question. I could ask am I neurotypical? Or maybe neurodiverse? I guess I know the answer to that question. Those labels don’t particularly matter to me. But am I normal?

Here’s what was driving the thought. Years past, a person, who at the time, mattered a great deal to me. Someone who I had trusted so much that I even put my life in their hands. Can you remember a person like that in your own life? They mattered. They perhaps even loved me. They just had a really cruel way of showing it.

To try to manipulate me to do something I didn’t want to do. I said no. I said no without hesitation. It was something I didn’t want to do. But this person got me on one line:

“You’re not a normal woman!”

I was weak at the time. A million reasons why. I didn’t know who I was, and one thing was clear that I wished right then that I was normal. Life would have been so much easier, had I just been normal. I could settle down, have kids, grow old happily… So easy. But not for me.

I was manipulated to the point where I had to allow what I didn’t want., by a person who mattered, a person I trusted. I guess they were right in their declaration. I wasn’t a normal woman.

My submission wasn’t enough. I laughed, as my only way to cope. And so I was told again,

“You’re not a Normal Woman!

And so, for all these years I have assumed they were right. I wanted to be normal, but now I knew I wasn’t. Because they declared it to be.

**

Back to under the lilies, what was I thinking all these years? That they were right. And probably it extended not to just one aspect of life but to everything. Mental illness, physical illness, character, likes, dislikes, behaviours and pehaps now most of all, who I trust.

I no longer trust that person and they don’t matter to me anymore. They marked me, like pollen does if it gets on your clothes. But now I have removed the pollen.

One day, beneath the lilies, I listened to Tori Amos…

Excuse me, but can I be you for a while

My dog won’t bite if you sit real still

I got the Anti-Christ in the kitchen yellin’ at me again

Yeah, I can hear that

Been saved again by the garbage truck

I got something to say, you know, but nothing comes

Yes, I know what you think of me, you never shut up

Yeah, I can hear that

Tori Amos, Silent All These years

My screams got lost in the years that have past since. Assuming they were right and that I just was not a normal woman. I wasn’t like all the rest and I would carry that mark for the rest of my days. I was marked for always. And they would go on, probably manipulating other women into normal or not.

Except, under my lilies began a process of:

Remember

Forgive

Heal

Simple to write, but difficult to do. I admit to being stuck on the forgiving point. Can I forgive someone who mattered? For the manipulation, and for the mark on me that I thought must be permanent… for too many years. It will come. I know it has to in order to heal.

But please, don’t ask me to forget.

I’ll get there (to forgive). I have to, but it’s going to take some time. Perhaps more lilies. Perhaps more lying on the floor with my feet up on the couch. Straightening my back, resting my neck. Perhaps more letting my thoughts work to a point of wholeness. Perhaps more pollen to remove.

Am I a normal woman? Probably not by your standards, definitely not by theirs. But in my mind, I’m just the same as you. I won’t accept the judgement of those who no longer matter.

Am I a normal woman? Probably not, but that is okay. I can just be me, with all that makes me me. Mental illness, physical illness, character, likes, dislikes, behaviours and perhaps now most of all, who I trust.

I trust myself now, and that is what makes the difference. If I am deemed not to be a normal woman, that is okay now. I would rather not be normal if what happened beneath the lilies so long ago spells normal. The healing will come.

Consider the lillies. They don’t care if they are normal or not. And perhaps neither do I.

Thanks for reading!

Cate

We Are The Same

Smile. Easily done. Right? Right from when we are born, people around us want us to smile. We indicate to people that we are happy, and even about who we are, by smiling. It’s so simple. No need for words. Just smile. And in the days of emojis and smiley faces, we are even more pushed towards that smile indicating that all is well.

When I was in the depth of depression, I remember my mother saying to me…

“Smile. It can’t be that bad.”

Actually, Mum wasn’t the only one. For some unfortunate reason I seemed to be surrounded by people who thought that if I would just smile I would find hope and purpose again. The depression would simply vanish. But all I was doing was making them feel better. For me, it left me feel sad and separate from the smiling world.

But let’s not get sidetracked. Take a look at this:

This is me at the age of five. It is my first school photo and you might notice that I have my mouth firmly shut. That’s because at that age I thought that’s how you should smile.

Look at the original smiley faces and you’ll see that a smile was simply a upwardly curved line on a circle with two dots for eyes. Even though I don’t look happy in this picture, it was my acually my version of a smile. I thought it was what people wanted.

Lately, I’ve returned to doing a lot of smiling this way. I can’t show off a good set of teeth, and so I don’t. Or I hide my smile with my hand. Right now it’s not a good look.

Last week I had six teeth removed, four of which were my top front teeth. I have two, maybe three more extractions to come next week. My teeth have rotted over the last twenty years, because of psychiatric medication I had been put on to literally save my life. The medication did save my life, but my dentist was not happy. He knew what was happening behind the smile I eventually wanted to offer my world. He knew that one day, smiling with my teeth showing would become a thing of the past. There was little he could do but delay what he knew to be an envitable conclusion. He also begged me to change medications, something that I was finally able to do last year.

My physical appearance was something that mattered a great deal to me when my teeth started breaking last year. It is ironic that when I got off the offending medication, my teeth took a major turn for the worse. About one tooth was breaking every three or so weeks. I was looking worse and worse. This mattered to me. I felt worse and worse about myself.

I have struggled with issues of body image in the past. It is still a difficult issue for me. I find it hard to see in myself how others might see me. I think I look fatter than I really am. Actually I have no idea how I look to others. How my smile was going to look was the biggest issue for me in leading up to the extractions last week. Not even the upcoming physical pain of recovery worried me as much as my appearance.

But I have realised that there are other issues, beyond a simple smile.

I spent a lot of years working with people who couldn’t afford good dental care. They were poor people, sometimes homeless, certainly transient. Perhaps they had mental health issues, maybe addictions. Some of them were homeless. Many of them had either missing or no teeth. At university, my majors were social work and sociology. I spent time studying about different groups of people and how they fit into our communities. I thought I had no judgement about these people.

I’ve realised this past week that I was unconsciously judging people with missing or no teeth. Without thinking about it, I had formed in my head that these people were a certain type of person. A type that I looked at as different to myself. I never thought it would be me, but now I find myself not homeless or even transient, but I do have chronic mental health and addiction issues as well as more general chronic health problems. Because I live on restrictive government assistance I battle week to week to have enough money to eat and pay the bills, let alone get good dental care. I am one of those people who I thought were different to me.

We are the same.

As I have struggled with pain in the last few days I have thought about how not having those teeth sends out a message about the type of person I am. It’s stigma. And not only is that stigma directed at myself, it is also directed at the people in the same boat as me. I didn’t mean to, but I have been judging us.

The pain has settled down and something else I didn’t stop to think would be an issue has reared its head. Without those front teeth, my speech has changed. I can’t bear how I sound now. Try pronouncing ‘T’s’ and ‘Fs’. ‘H’, ‘S’or ‘V’. So many of the words we prounce in everyday language rely on that movement of the tongue against the front teeth. Without those front teeth, I sound… well, horrendous.

I am difficult to understand even. On the telephone last week I was speaking to someone who did not have the same accent,or the level of English language usage that I have. We were struggling to understand each other. I no longer have the voice of a standard kiwi voice, rather I have this muffled speech impediment that you can’t help but notice.

The next phone call I had to deal with was from a doctor’s receptionist. She actually hung up on me because she said she couldn’t understand me (I expected more from a health professional’s staff member). Another phone call and I was told to try using the online site to request what I wanted because she was apparently having trouble hearing me. By now, I was in tears. I knew how my words should be said, but I just couldn’t manage it, because of those missing teeth in my smile.

I hate the sound of my voice now. Now I’m too scared to hear myself, let alone let anyone else hear my words. I tend towards silence. I can’t explain just how much I detest what I hear as now my speech.

My hope that in time I will be able to get a dental plate that will allow for clearer speech, but I suspect my voice has changed somewhat forever. Time will tell, but in the meantime this has become a major issue for me.

A lot of people struggle with speech, for a lot of different reasons. I have friends who battle with it, but I have never stopped to think about the ordeal they face. I realise that stigma is an issue again. I told myself last week that you don’t hear ‘successful’ people with speech impediments. I am sure they are out there but I suspect that when we hear that impediment, that we begin to make an assumption about who that person is. An assumption that is perhaps unconsious again but certainly not fair.

Speaking clearly has become a really big issue for me. I am terrified that when friends and family hear me speak they will laugh. I am scared that they, and other people who don’t know me will make assumptions about who I am. Maybe my intellect, my education, even whether they want to interact with me. Am I now simply to hard to communicate with? It’s perhaps easier to hang up on me, turn their back on me or let someone else deal with me. Perhaps most importantly, how are you going to judge me when you hear the way I speak?

I realise again, that I made, perhaps unconscious, judgments about people I came in contact with who had speech impediments. I didn’t mean to, but it was just there. Somewhere in the back of my mind I had the idea that people who couldn’t speak clearly for whatever reason were not as good as people who could. That they were different from me.

My fear is that you will have tucked in the back of your mind the same stigma. It’s the type of thing we would probably never admit to, and not even be necessarily aware of it existing. After the past few days, I am challenged to wonder what other unconscious or conscious judgements I make about people. And I wonder, can I let myself be challenged by this growing awareness?

I know that there are people in my life who get frustrated, even annoyed, by a hearing impairment I live with. I know it from how they react when I have to ask them to repeat themselves because I didn’t hear something they said. Frustration when I can’t hear as well as normal (with hearing aids) when I can’t understand what they are saying when they have a mask on. Their voice is muffled, and I can’t see their lips. It is an impairment that I can not help, yet those people judge me by it, whether conscious or not.

Is my inability to speak clearly also now a cause for your frustration and annoyance? (Rhetorical)

I am threatened not only by my own judgment of myself, but also of yours. What conclusions do you (and I) draw when you see me smile now, or when I speak? I have returned to my five-year-old smile. It feels safer. I can’t bear it if you laugh, or if you make unfair conclusions about me. If you conclude that I am different from you.

Thanks for reading!

Cate

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Norah’s Daughter

“Who are you?”
“I am Norah’s daughter.”

Nothing else mattered. I almost lost myself. But at the time, it was what I knew was what Norah, my mother, needed.

“You must be Norah’s daughter?”
Yes, I am Norah’s daughter.”

“This is Norah, and I am her daughter.”

The only time this changed was when, that I had legal care of Mum was more important than being her daughter.

“Are you the Enduring Power of Attorney for Norah?”
“Yes, I am the EPOA for the Care and Welfare for my mother, Norah.”

Nothing else mattered. But in some strange way, that she couldn’t put words to, and neither could I, it seemed to me that in spite of her failing mind, something more mattered to Mum.

I think she still wanted me to be more than just her daughter. She wanted me to be me. Maybe. It’s impossibly difficult to know what an Alzheimer’s sufferer is thinking.

As Norah’s daughter, I did every one of those tasks. Every single one and much more. For years, people have told me what a great Norah’s daughter I was.

In the past nine months, since Mum’s journey ended in her death, and my role as Norah’s daughter ended, I have kept hearing that I had been a good daughter and that I went above and beyond some “call of duty” as a daughter. They spoke of my patience and love for her. But that wasn’t all of our story.

Verbal communication had become difficult for Mum. She became pretty much restricted to one or two words at a time. Often there were no words, and that was okay by me because I knew something of how difficult it was for her to find the words she did.

There were some times on which Mum relied on me to speak on her behalf. On those occasions, I knew it would make it easier for her. At times, when she was asked a question, she would look to me as if wanting to defer the question to me for her answer. She somehow knew that it would be easier to have me answer than for her to find the words or even to know what she thought or was experiencing.

As Mum’s daughter, people often also looked to me to speak for her. I would watch them ask Mum a question, often too impossibly complicated for her. They would look to her for an answer and when that wasn’t forthcoming quickly enough, or wasn’t the answer they expected, they looked to me. And then there were those who looked straight past Mum to talk to me.

And worse, when they would talk to me as if she wasn’t there. Perhaps it was too hard, so as Norah’s daughter, I was somehow easier to talk with. I never handled those times as well as I would have liked. I stumbled and perhaps I did Mum an injustice. I wanted people to talk to her. But some didn’t.

I was Norah’s daughter.

When you forget I will remember for us both
When you get lost I will find you
When you are sad I will be sad for you
When the fear comes I will comfort you
When you cry I will dry your tears
When you lash out at me I will not be angry
When you repeat I will have patience
When you forget my name I will understand
When you can not eat I will feed you
When your legs fail I will carry you
When your journey is ending I will be by your side
I will love you for eternity
I will
-Michelle DeSocio

As Norah’s daughter, I took that role and made it my identity. It just happened. I didn’t plan it  but in some ways, it was the easiest option for me. I hadn’t thought of what I made my identity until someone suggested it to me a few days ago.

For nearly ten years, being there for her in whatever way she needed. Of course, many times I could only guess what she needed from me. But she became who I was. Norah’s daughter. Norah’s carer. Norah’s minder. Norah’s “mother”, “sister” or friend” (the latter being roles that, at times, Mum thought of me, as her memory of who I was faded). It was who I became.

Was this my duty as some people inferred was a daughter’s duty? Not a child’s duty to their elderly parent, but a daughter’s duty, apparently.  It was never duty though. I never felt I had to do it. I perhaps simply needed to be it. Maybe for her and maybe for me too. It was who I became. Norah’s daughter.

It would be false of me to accept that I was a good Norah’s daughter because for most of my life, I knew I was anything but. I refuse to be critical of my mother here, mostly because it’s unnecessary and she’s also not here to defend herself, nor would she. My mother was a very private person. I respect that.

She was a good mother. But I was not a good daughter and we never found a way to be with each other.

Mum and I never found a way to be comfortable with each other, particularly as mother-daughter, even as simply person-person. We were never friends until what I will call the last years.

I admit I looked at friends whose mothers were their best friends. I couldn’t imagine that because Mum and I never (until the end) found that way of being comfortable. I can only guess how it was from her perspective. By the time we were comfortable with each other, she was unable to speak of the majority of years of our relationship and I didn’t want to go there. It was too hard.

I know my mother loved me and in that, I have so much more than many people ever experience. She also provided for me. She fed me, clothed me and made sure I didn’t go without, at times more than I deserved. She gave me what she saw I needed. And at time, by going without for herself.

But I admit that I for most of my adult years at least, I never had any intention of being there for Mum’s last years. I’m not sure whether she would have even wanted me there. We became that uneasy with each other. Not knowing how to be for the other.

In a way, we got thrown together. It started when my father died unexpectedly nearly ten years ago. Then about seven years ago I came home from a holiday overseas to discover Mum struggling by herself.

I decided that day that I would be there for her for the rest of her life. It was a conscious decision made as I walked out her door having visited her (a daily occurrence), knowing she didn’t want me to leave. She would do everything, to try to get me to stay longer. It had become a pattern.

After that, somehow, we worked somewhat unconsciously, to find a way to be together, for me to be that good friend, daughter, chief supporter.

There was only one thing she ever asked of me concerning what she could eventually see would be her destiny with Alzheimer’s coming onto her rapidly. Ironically something I didn’t allow myself to give her. But I think, by then, she perhaps simply hoped I would be there for her. That I would not leave her.

I couldn’t forget though, the relationship we had in the other nearly fifty years. Those years I carried the label as Norah’s daughter simply as a biological and parental truth, but I never wanted it and never deserved it.

Only Mum knew the detail of the relationship we had. The rest of the family would know it wasn’t easy. Maybe they were surprised when I stood up to be Norah’s daughter. I surprised myself and I’m sure that in some way, I surprised Mum too.

Only now I look back and I admit I see two mothers. Not just one with Alzheimer’s and one without. Rather, one I spent most of my life trying to get away from, and then just over seven years when I came to be able to tell her that I loved her, that I was honoured to be her daughter. I feel sad about that.

I had missed out on my mother being my best friend but now, she was exactly that and so much more. Perhaps I needed her as much as she needed me.

But the opportunity has passed and I need to find peace in that I had these last years. I finally became Norah’s daughter.

The time since my Mum died, I lost that identity. It didn’t matter that I had been Norah’s daughter and that we had found a way of being together. I was now anonymous and without purpose.

On the day she died that role faded until it was mostly gone.  I have really struggled with it being gone now. Who am I now and what is my purpose? She had become my purpose and now I struggle with finding another. I have lost her but I have also lost what I had taken on as my reason for being. Strangely, in those years when I was Norah’s daughter, my mental health was better than it had been for a very long time.

Now I admit I am still struggling as little over nine months have passed. I have started grief counselling, at the recommendation of my doctor. It is good to be able to talk about being Norah’s daughter, both before and during her illness.

I need to find a new purpose and that is really (in my mind anyway) what the counselling is all about. The counselling won’t last long. I don’t need it to. I just need to talk and think through what was a very unusual relationship as Norah’s daughter.

To Mum, thank you for being my mother and for never giving up on me.

Thanks for reading!

Cate

 

Dona Nobis Pacem – 2019

(Grant Us Peace)

When I was thinking about what I would write today for BlogBlast4Peace, my mind kept coming back to this unfinished quilt on the image above. It seems to symbolize how I am thinking of peace. How I am thinking about the way in which we all contribute to peace in this world.

I have made many quilts across the years, all completely hand-sewn. This one came to a halt about 10 years ago. I was unable to finish the quilting on it because my health had deteriorated. Tremors meant that I couldn’t hold a needle still enough to make every stitch and I was also having trouble threading a needle because my vision had also got bad. Eventually, it got put away unfinished. I was disappointed but the work involved in a hand-sewn quilt meant it was unrealistic to ask anyone to finish it for me.

I came across it recently and wondered how I could get it finished. The health issues are still at play, but I have some ideas to how it could be done. But I’ll put those aside for now.

Writing about peace each year on 4 November is important to me. There have been some years that I’ve missed but it was important to me that I take part this year. With generous help from Mimi, I have got this quilt on screen so that I can share my ideas with you.

Regardless, of your knowledge of patchwork and/or quilting, you can see in the images that different fabrics and different shapes are sewn together to form a pattern. Even beyond this, many, many individual stitches work to bring it all together. It seems to me that this is much how worldwide peace can be reached.

Each of us, can not only work to obtain our own inner peace, but our shape whether we are a triangle, a square or an appliqued heart, can join together to make a bigger square. And then those squares join together with others, to become a much larger shape and eventually the whole quilt. If we are not a pieced fabric shape, we might be decorative shapes on borders to add to the overall look of the quilt. And if all that seems too big to comprehend, perhaps we are an individual stitch that holds it all together along with millions of over stitches.

Is this a crazy idea? I don’t think so. We work together with others, both same and different, to achieve something wonderful. Something we can call peace. Something our planet and its people need both now and for the future.

I have renamed my unfinished quilt as my Peace Quilt. It is my aim to get this finished and get it on my wall so that it reminds me of how my small contribution can contribute to peace in this world. My health has stood in the way of completing the quilt, and sometimes I think my health stands in the way of doing much. But it doesn’t have to be this way. Maybe I’m a small triangle on a very big quilt. Maybe I am just a single stitch. But my contribution, no matter how small, it is counts. Your contribution counts too.

We all need to understand that it is our individual contribution that will work towards word peace.

As an aside, for those who are wondering what the whole unfinished quilt is, I have added another image below.

Thanks for reading!

Cate

On November 4, 2019November 3, 2019 By Cate ReddellIn Something Entirely Different8 Comments

And That’s What Matters

It was six weeks ago. A phone call from the Nurse Manager, at the hospital where Mum had been for the past three months, on a morning when I had decided my fatigue was too much to go see Mum. The Manager told me Mum had collapsed moments ago. We had long since planned for this moment and she was wanting to check my ‘end of life instructions’ for Mum. But I didn’t really get it.

A few moments later I did get it. I dressed faster than I thought possible. I drove there, wishing that there had been a dementia facility nearer. When I got there, the nurse on reception told me Mum was in her room with paramedics. She told me to run!

She told me to run! Then I really started to get it.

Mum’s room was a long way down the corridor. We had been amazed when she had managed to walk down that corridor, twice a day. I knew it was Mum’s fierce determination, in spite of complex mobility issues, in spite of Alzheimer’s Disease, in spite of recent Congestive Heart Failure.

As I ran, staff members stepped back out of my way. A couple touched me on the shoulder as I passed. It was almost surreal.

I really got it when a Paramedic held her hand up at me to stop me as I ran towards Mum’s room. What was my name? I told her. She knew it was me she was waiting for. I couldn’t go in. Mum had just died, minutes ago and I needed to wait a few minutes while they finished up. But I didn’t want to wait. I needed to be with Mum.

Mum had just died. I hadn’t been there with her. My wish had always been to be there with her in her last moments. But I hadn’t been there.

I had not made it to be there with her, but apparently, she knew I was coming. They had told her that I was on my way. Mum was not alone, instead surrounded by staff who cared and paramedics. No matter how much I tell myself that, there is also a sub-text saying “it’s not the same. I wish I could have been there with her”.

Mum was not alone. But I was quickly realising that I was alone.

That morning was the beginning of the weirdest time. For years now, my focus has been on Mum. Caring for her. Making sure that her every need was met. As her Alzheimer’s Disease has progressed and her mobility has regressed, I attempted to do, or make happen for, everything she needed.

I always knew in my heart that when Mum died she would finally be free of illness, disease, pain, confusion and suffering. Finally free. And so her death came to me as a relief. It was over and while I don’t have clear theories about life beyond death, I had a feeling that she would be free and she would be with my Dad who died eight years earlier. What’s more, I recently thought that she would know who Dad was (she had forgotten both him and her 53 years marriage thanks to Alzheimer’s).

But back to me. Many people had questioned me, especially in the past year. What was I going to do when Mum died? How would my life change when Mum died? Actually, the questions came thick and fast to a point where I was getting annoyed. Yes, my life would change but I couldn’t focus too much on that right now. Mum needed me to focus on her. And I did.

Life has changed and I’m still working out how and what to do about it. It’s only been six weeks and I’m in a state of wonder. Wondering what the hell just happened. Not only has my mother gone. But I’m an orphan now. And I did not expect that. And gone too, it seems is my purpose.

Okay, so I knew in my mind that when Mum passed on that I would be an orphan. I just did not expect that I would be hit by that. I hadn’t given it a moment’s thought. But now I can’t stop thinking about it. It has hit my heart. Ouch!

I don’t have (living) parents anymore. They’re gone. How do I deal with that? Does that mean I have to be the grown-up now? It certainly means I can’t ring Mum and Dad when I get stuck or have a problem I don’t know what to do about.

The thing is that since my Dad died suddenly, my focus has been on Mum. You could say that Mum’s Alzheimer’s Disease meant that I didn’t really have her to call on anyway. Some people have gone so far as to say that I was ‘the parent’ in my relationship with Mum. Some people have said that she was ‘the child’.

Does that mean I was already an orphan? Does that mean I was already alone? Does that mean I already had to be the grown-up? I blame no one for taking that approach, but it’s not my approach.

In my understanding of Mum’s illness, I chose not to see her as a child. Or me as the parent. Yes, there were aspects of her behaviour and thinking that I could see were childlike, but she was always my mother. While I couldn’t turn to her for support like I might have when she was well, it was important to me to respect her dignity as an elderly woman. Part of me doing that was to choose not to see her as a child.

And so back to me. I have found myself alone. It’s weird. And scary. I’m really alone. Right now, there are dark clouds in my sky. I don’t know when the blue skies will be back. Or even, if they come back, what shade of blue will they be. I don’t know what is ahead.

I knew all this was ahead of me when Mum died. I knew she would die some day. I always knew that’s the direction we were heading. But still, I did not expect this. I knew I would grieve for Mum. I knew my life’s direction would have to change when she died. But I didn’t expect it to be like this. I didn’t expect to be so lost. I didn’t expect to wake up the morning after and wonder what I’m doing here (as I did).

I was finding things pretty hard going at the time Mum died. It was really tough balancing Mum’s ill health with my own ill health. It didn’t seem like there was room for both anymore. The problem was her health was getting worse and so mine seemed to be. How did I continue to make her the priority when my health was needing me to make it more of a priority. I had no idea how much longer Mum would live, but I had to focus on her needs like she might live forever. She might live for ten days and she might live for ten years. It just had to be that way to see her day to day needs met. It was completely illogical but completely necessary.

Obviously, I don’t have the answers worked out. It’s only been six weeks. I know what it’s like to live through a major earthquake, and this feels a little like that. I don’t know what life is anymore. The land has shifted and I’m trying to see where the goal posts are now.

I chose not to speak at Mum’s funeral. I had wanted to but my brain fog was really bad that week and words were coming out of my mouth that weren’t what I expected. I was worried about what I might say (even if I had written in front of me what I intended to say). So I chose to read a poem instead. I’m in no way a poet, and so found a poem that I was able to change a little to say what I needed to say to Mum. My intention was to share with you a link to the original poem, but the link I had accessed has been removed and I haven’t been able to find another. So I share my words, but please know that I didn’t write most of them. I just altered to what I needed. I hope the original author didn’t mind.

They are simply something of what I said to Mum when I finally spent time with her after her death six weeks ago. They might seem a little strange, but Mum would now understand. And that’s what matters. Mum would no longer have any difficulty in understanding or being understood. That’s what would make this all worthwhile.

It took away your days and nights
And time became a blur
It sucked your speech right from your mouth
And your words became only a few

It slowly imprisoned you from your life
When you couldn’t walk for miles
It haunted your sleep and made you scared
And wiped away my smile

Because it’s not just memory loss
That dementia brought your soul
It gave you torturous unwanted gifts
To replace the ones it stole

It added to your radiant laughter and joy
Agitation, fear and silence
It stole your independence
And made your world become less clear

I daily watched you disappear
A little more each day
I wished, but all so helplessly
As it stole you right away

And in the end are precious memories
That you possess no more
But instead I treasure them
Deep within my core

I do not know if you remembered me
Or if I’m stolen from you too
But Dementia will never ever steal away
The love I feel for you.

(If these are based on your original verse, please let me know so that I can give you full credit)

 

** Rest In Peace **
Norah Evelyn Reddell
1928 – 2019

Thanks for reading!

Cate