Tag Archives: dementia

Christmas Reality Bites

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Cassie and I have been working on some quite naughty and revealing things to put in this blog. This will still happen but perhaps not until the New Year. I think in 2015 this blog will become darker and sexier, but not just yet. Right now doesn’t seem appropriate…

We have been planning to celebrate this Christmas season together in Zurich, just me Cassie and my daughter. It has been a big year for the three of us and we want to celebrate as a family reflecting on all we have been through, all that has changed in our lives and where we are at now.

And we will do that, but there has been a complication.

Those who have been reading this blog for a long time will know that it started as Cassie’s blog several years before she met me and we got together. You may also remember that Cassie’s mother is ill, suffering from a rare form of early onset dementia. Sadly her condition has recently deteriorated badly. So our Christmas plans are a little bit on hold.

Since Cassie and I moved in together she has of course managed to visit her mother in England at least once every month. We don’t write about it because there is usually not much to say except that there is no change in her mother’s condition and the whole situation is quite sad. Well now her mother has suffered a bad fall and some broken bones and because of the other problems with her health the outlook is not looking good.

Cassie went to England yesterday and we don’t yet know where we will actually spend Christmas. But we will be together no matter what happens.

I would like to write an essay about how amazingly Cassie copes with this sader side of her life but she wouldn’t want me to. However she did say I could mention what is going on in our lives at the moment for background information. There are many sides to all people, including us.

We wish our readers all the best in this winter holiday season. If you are celebrating, do it in style and have fun!

 

A Long Last Post

This is not the end of my blogging and certainly not the end of my writing, but it is the end of this blog. It is a slightly bitter sweet moment for me. Bitter because I have enjoyed writing Cassie Being Cassie and it has charted a significant period of my life. The actual process of writing this blog has helped me to reflect on my life and refine my opinions and in that way has helped me to grow as a person. I have also challenged myself as a writer to be honest and explore issues close to my heart. I don’t think I have become a great writer or even a great blogger but I have seen improvements or just changes which please me. This blog also became my gateway into the world of blogging through which I have come to read and know many great people from diverse backgrounds who continue to impress and influence me. I will continue to follow their blogs and I hope they may continue to follow my other projects.

Yet this is also a sweet moment because as an end it also marks a beginning and a point in my life where I know more clearly who and what I am and where I am going. And the fun part is I am not at all where and what I expected to be!

I started this blog as an experiment; a chance to write and express myself in a new way, a new medium. I had no idea how the blog would develop or what it would really be about. It was full of random thoughts and ideas. I had a vague notion that people might be interested to read about the everyday life of somebody who called themself a Pagan and a Witch. I thought others might be interested in my travels, I expected to write more about my musical and artistic interests than I actually did and, closer to the bone, I needed a place to occasionally talk about my mother’s losing battle with dementia. All of those subjects were indeed discussed but a quick look at the tags and subject headings I have used reveals there was a lot more about sex, sexuality and relationships than I had envisaged and that while remaining central to my lifestyle my spiritual path and life as a witch evolved quite a lot.

As my life went on and my blog evolved there were two events that stood out in terms of being life changing and altering the nature of this blog. The first of course was meeting Sophie. From the start of this blog I was open about being bisexual but even so, while I thought I might write about my sexual adventures with men and women as a single girl, I still fully expected to end up with a man and probably have children by now. Two years ago I met Sophie and all that changed.

Those who read my last blog entry will know that Sophie and I have now set up an apartment together in Zurich. It has been a busy time but very rewarding and I can say that without doubt in terms of love and sex I am in a totally different situation and mindset now. I am bisexual by nature, I couldn’t change that any more than I could change my blood group. However I no longer have any hesitation in saying that I am fully and unequivocally lesbian by choice. I love Sophie and feel loved by her more than I thought it possible to love and I truly hope the rest of my life will not be just Cassie being Cassie, but Cassie and Sophie living life together. I also love Sophie’s daughter and I cannot explain the depths of joy it gives me to be accepted as a significant person in her life. Having a child of my own would not give me any greater satisfaction. Sophie and I have talked about the possibility of me having a child… Of course there are ways in which it could happen… Just as obviously there have been times when I wanted to become pregnant and give birth to a child of my own. But for all sorts of reasons, not least being the beautiful family I already have, I have both decided and fully accepted that childbirth is one of life’s wonders that I will not experience in this lifetime. Sophie and Tina are more than enough for me and being Tina’s second Mum is as much a privilege as having a child of my own. I don’t want and do not intend to have any other children. Period.

The other big change in my life came to a head at about the same time I met Sophie and that was the change in spiritual direction; becoming a Satanist. I could have done that very secretly and privately and perhaps in terms of Satanic philosophy that would have made more sense. But since I was already publicly blogging about witchcraft and my pagan lifestyle it would have seemed dishonest and deceitful not to mention such a fundamental change in my perspective. Moreover I felt then and I still do that Satanism is a very misunderstood and badly represented religion and philosophy. For many people it will always be associated with evil and depravity. But it isn’t that and I found myself in a position to say so out loud…

I hesitated at first. In fact I deleted my original ” coming out as a Satanist” post. When I did talk about it publicly here I lost some followers and I lost some friends off line too. But I found new followers here and on my Devils Advocate blog, and made a lot more friends and connections in the Satanic community and amoung open minded people in general. I have no regrets. I admit that Satanism is as much a cause as a religion to me and I am prepared to be open and public about it in the hope that my small voice may challenge a few misconceptions. Part of the reason for bringing this blog to an end is so that I can concentrate what little writing time I have at the moment on my Devils Advocate blog. Quite simply, that is where my writing and spiritual priorities are.

Of course I am happy that Sophie has also become a Satanist and embraced it as fully as me. It makes some aspects of our life together easier and more fulfilling; but it was never inevitable and it was never a deal breaker. Even if she had remained a Buddhist or if I had remained a Pagan the most important thing is that we found each other.

I have no regrets about Cassie Being Cassie. I have no regrets about the aspects of my life I have shared with readers over the past few years. I have been brash. I have been naughty. I have been thoughtful. I have been silly. I hope I have been kind and helpful sometimes. I have had adventures. I have had affairs. I have had a few triumphs and made a few mistakes. I have tried to be honest and I have certainly been politically incorrect! And I have done all these things a bit publicly, albeit in front of a readership I have largely come to regard as friends.

But that was Cassie Being Cassie, or perhaps Cassie Being Single.

And now things have changed.

Above all things Sophie and Tina are my priorities now. I feel the need to draw more of a veil of privacy around my family as we move forward together. This is the best thing that has ever happened to me but our challenges and adventures from now on will be private and personal.

I do of course have some regrets about saying goodbye to this particular blog. I have recorded some memorable and interesting personal times here. The fact of blogging about some things was in itself cathartic and added to the memories and impressions of the last few years. I also appreciated the space to vent my views about everything from pornography to smokers rights, politics, travel, art and music. I think I will miss that a lot and may incorporate some of those types of post into my other blog.

I will continue to write about Satanism in Devils Advocate.

Sophie and I will continue to post erotica (Okay, porn!) art and Satanic imagery on our Tumblr site.

I can still be found under the name Cassie Wren on Facebook (although I rarely post there).

Sophie and I may start a new more obviously themed and less personal blog here at WordPress sometime in the future.

I will continue to follow all those bloggers I follow now; you all mean a lot to me.

I can actually remember the first post I wrote here. I was sitting in the living room of my Mum’s house hunched over my laptop. Mum was sitting in an armchair across from me watching the TV. In those days we could still talk to each other; she used to forget the occasional word and was lost when it came to computers or any new technology, but in most respects her dementia hadn’t really taken hold. She couldn’t understand what I was doing on the computer but we could still chat about the things that I guess most mothers and daughters discuss. I cherish those memories and the times of just being together. Then the dementia came in force and stole her from me in progressively large chunks. Now she is in a care home. She doesn’t know her own name, let alone mine.

I had always thought I would be with her til the end; that I could and should put my life on hold until hers was over. I went through changes and opportunities opened up. But I held back… Waiting…

Rightly or wrongly I have decided to stop waiting. In my head I know that is what she would have wanted, but my heart has been more difficult to convince.

As I move on with my new family I hope I can be somewhere near as good a mother to Tina as my Mum has been to me.

If you happen to pass by a collection box for Dementia research please put a few coins in the box. And meanwhile celebrate and enjoy every moment of healthy living you have.

Thank you for reading.

Cassie Being Cassie

The End.

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Home

Home

I seem to have found a buyer for my mother’s house. I admit I am conflicted about this news. On the one hand it is very good news. It was becoming imperative to find a buyer quickly before my Mum’s remaining funds run out and the sale will secure her care and financial situation for the foreseeable future. This is a big relief as I was getting worried about what would happen if I didn’t find a buyer and get the money in time. On the other hand it means I am really losing my family home which I have been using as a personal space and store room during the past couple of years. In all that time the idea of actually selling the place and having to move out completely seemed like a far off reality even as I was clearing the place out.

But now it really is happening and there is a lot to do fast and (because of the way the system works here in the UK) the pace is really being set by lawyers and things out of my control.

And the final traces of me and my Mum have to be removed from the building.

I have been feeling unusually stressed and even a bit depressed this week. Yesterday I went to visit my mum in the care home. She always seems happy to see me although I don’t think she really has any idea who I am any-more. She doesn’t really know who “she” is either. We don’t really have conversations now. I hold her hand and tell her what has been going on in my life. Sometimes she listens, sometimes she interrupts with whatever random thoughts are going through her mind. She doesn’t really understand what anyone is saying to her. When she speaks, disconnected words and sentences come out but I can no longer make any sense of it or even guess what she is trying to convey. She seems happy though. Insane, but happy…

And what is happening with the house seems to parallel what is going on in her mind. Bit by bit the memories are being moved out and pretty soon there will be nothing left.

I usually have no trouble in thinking positively about things, but this week it has been a bit of a struggle.

But I have to be positive.

I am glad that this summer I was able to enjoy six blissful weeks with Sophie and Tina in the house. The energy we leave the house with will be beautiful. And it will be engrained somewhere in the walls even after all the furniture is gone. All the happy moments from my childhood will continues to echo here and my mother’s love will keep the place warm and homely for whoever moves in next.

I will also take those memories with me as I move on.  My next home will be with Sophie and Tina and we will make it a warm and loving place and fill it with new memories. Meanwhile I will continues to visit the shell of my Mum in the care home as often as I can until she moves on too.

The Fear

I don’t normally write about the deeply personal stuff I am going through, not the bad stuff anyway; but from time to time I need to get it off my chest.

When my Mum was first diagnosed with early onset dementia or even in the months immediately preceding that, when the forgetfulness and periods of confusion were getting more pronounced, the worst thing was the fear. I happen to be a natural empath, but even if I had no empathic abilities whatsoever I think it would have been impossible not to feel the terrors she experienced. You could see it in her eyes and feel it in the air even though she almost never spoke of it out loud.

Every so often the knowledge that she was loosing her mind struck her like the bite of a wild animal. The fear that she was loosing everything and everyone she held dear; that she would forget everyone and everything. The thought that she might forget her daughter’s face or even that she had a daughter… The glimpse into a future where she would either be insane or a cabbage…

Like my Mum, I have always prided myself in confronting my fears. I fly several times a month although the thought of flying used to make me sick. I can approach and even lead people even though I was always much more shy and nervous of strangers than most people realised. I can hold a spider in my hand despite the fact that I used to scream hysterically and come close to fainting at the mere suspicion that there might be a spider in the same room as me. But how do you confront the fear that your mind is going; that chaos is slowly replacing every element of order? How do you confront the certain knowledge that you are going to be insane?

My Mum never spoke of this. She didn’t need to. I felt it.

It broke my heart when she had to move out of our family home because I was no longer able to look after her. It took a long time to really get used to the idea that she was living in a nursing home where other people would tend to her daily needs. Just going there, confirmed her fears; that she had become an adult who was unable to look after herself. That she was slipping away.

Gradually I got my own life back together again. I did well at work. I got a girlfriend. I took big steps in my spiritual path. Perhaps I started to express my true self more stridently than ever before. And instead of being a 24 hour nurse I became a daily visitor to my Mum. And when working, weeks and sometimes months pass when I don’t see her…

The insidious dementia that was claiming my Mum took a sweeter turn. Slowly but surely her memories and her mind were taken from her, but at the same time the fear diminished. She became author of her own childlike world, making her own sense of colours and patterns that used to have other meanings. It was disturbing and hard for me to see, but at the same time comforting… She has been living in a fairy-tale land of disconnected memories and fantasies, a place where the fear seemed to be gone.

So while I knew she is still dying and that she would inevitably  fade away from me more and more, I felt a little easier about getting on with my own life. She seemed safe and comforted in her own world.

Until this week. A few days ago at the end of an uneventful visit in which she talked complete nonsense and I pretended to understand, her expression changed. “What’s wrong?” I asked, but I didn’t need to. I recognised that expression; that far away terror in her eyes.

And for the first time since she has been in the nursing home she actually said it in words. “I am afraid.”

“What are you afraid of?” I asked.

“I don’t know. I just feel frightened of something.”

Even if she did know, she couldn’t explain it. The disease has robbed her of vocabulary. Is it still fear of what she is loosing, of what she is becoming? Is it the feeling that things are not right even though she no longer understands that she is ill? Is it the knowledge that her world is now ruled by chaos? I it the primordial fear of death? Is it pain that she no longer has words for? Was it that she lost track even of who I was? Was it that every time she goes into a room she has no memory of ever having been there before or of the other people who are there?

The fear is back in her life, hiding in the corners of her mind. It cannot be described or captured by words. It is slippery like a ghost, like a ghoul lurking in the shadows. And I can’t protect her from it.

I can only hope that it has not come back in force. That it is something she will only bump into occasionally and that I (or somebody else) will be there to hold her hand when it strikes.

 

Dementia House

This is a follow up to Messy Mind-Messy House which I posted a couple of months ago.

I love writing my blog. It is a way to express myself; to share ideas and get feedback. I write for the enjoyment of writing itself. Sometimes however I must admit expressing my views on spirituality, politics, science or sex is also a welcome distraction from the sadness I can’t escape from…

The long wet summer is coming to an end. Tomorrow I fly to Austria to start my next teaching course. I will be busy. I have a lot of new teachers to train and a lot of promotional work to do between my regular teaching. I wish I had more energy but the last year and the last summer have taken their toll. I do feel emotionally drained.

In between teaching here in England and visiting my Mum every day, I have been continuing to clear my Mum’s house out in preparation to sell it. I set myself little goals every day, but often get side tracked looking through old photos and documents… How many memories can I keep and where can I keep them? Which things need to just be thrown away?

Stupid things like knives and forks, cups and mugs make me cry because I have nowhere to keep them and they all bring back memories of happier days with mum… I have to prioritize; to choose the most important things and consign everything else to the waste bin or take them round to charity shops.

For the first few weeks progress was very slow. I just moved things around, making piles of stuff to look through again. Sometimes I forgot what was in which pile. The house looked more and more messy…

Finally in the last few weeks I have started taking stuff away and throwing things in the waste bin. There have been several trips to charity shops with piles of clothes, kitchen utensils and even cuddly toys.

And each day the house looks more empty and sad.

The process of clearing the house seems to mirror the process of the dementia which is stealing my mum from me.
At first memories get lost, but they get found again, turning up in unexpected places. There are moments where things seem normal, or only slightly re-arranged… Names and places get muddled up just as if they have been put in the wrong pile…
But then some things disappear altogether as if they have been taken out to the trash can. Slowly more and more things vanish from the mind and the house and what is left seems like a sad empty shell.

This morning my mum could barely communicate. None of her sentences made any sense. I think she understood that I won’t be able to visit for a while and I think it made her sad. But she didn’t know where she was. She seemed lost and empty.

And I wonder; when I return next month will she still remember me or will the garbage men take those memories from her as well?

The house is nearly empty now. I’ve made it look as nice as possible considering what has gone. I will set about selling it when I get back. It was my home too.

Should I Or Shouldn’t I?

I have been asked to apply for a promotion at my company. In fact I have more or less been told that I should apply and that there is a good chance I will get the job if I do. The new job would be as Assistant Academic Manager; in effect the number two position on the academic side of my company. I would be responsible for writing some course materials, liaison with the schools we work with in Europe, some staff training, some administration work and troubleshooting when things go wrong. It would involve a big pay increase but would also mean relocating to London which would have to become my main base.

And I don’t know what to do!

On the plus side it would be a new challenge but one I think I could cope with. I quite like the idea of teacher training and writing course materials (I have been doing quite a lot of that anyway in my present position which has become unofficially head teacher/supervisor out in the field. I have also been doing quite a bit of school liaison and sales as well). So partly, the promotion would just reflect and reward what I have already been doing. Even the troubleshooting aspect wouldn’t be totally new since I am the head teacher they usually send if there is some sort of problem with the school. The admin aspect would be new and that is an unknown quantity, I might find that part of the job boring, but nothing I couldn’t cope with.

It would mean a lot more money even despite having to live in London, and more money is always good. There are also some minimal health and pension provisions which don’t mean a lot these days but might be better than nothing.

I would be fully on the management team and would have some input into the future of the company itself; I even get a preferential option on shares. To put it bluntly, there are only five managers in our company and I would be one of them.

It might also be interesting to live in London and to get a place of my own (albeit rented) that is fresh and new, mine, and not related to my past, my hometown or my family.

There are two big negatives though. The first is having to move away from where my mother is. As things are I arrange my life so that while I might be away from home for up to a month at a time; I also have reasonable gaps between contracts which allow me to visit my Mum every day while I am at home. It is true that her mental condition has deteriorated to the state where she hardly knows who I am anymore, however I know my visits do mean something to her and they certainly mean a lot to me. She seems safe and comfortable in her care home, but I don’t want her to feel I have abandoned her and I don’t want to feel that either. Living in London, I would still be able to get down and see her, but it would be much less than now and would be more difficult because I would have to give up the flat I currently share when I am home (and my Mum’s house will be sold). It would in a very real sense mean leaving all that I have called home behind me…

The second downside is that the new job would involve far less actual teaching; and I do like teaching. Really, I would find that rather sad. Yes I am quite good at managing people, but teaching is what I do best and I don’t want to get out of touch with what it is like to be teaching on the move.

A third downside is that while I will be “troubleshooting in the field”, I will in fact do less travelling than now and will mainly be based in an office. I am not sure if I like that idea.

So, a lot to think about and I am really not sure which way to go. The first step perhaps is to get some more information about what the new job would involve.

Dis-jointed

This is more personal and sombre than the things I normally post here. It just happens to be what is on my mind at the moment.

We all have episodes in our lives that we are not very proud of (or is it just me??) Anyway, some years ago I went through a period where I was smoking far too much weed and taking all sorts of other things too. Luckily I am the sort of person who has always been able to learn from my mistakes, sometimes however it takes a bit of a crisis to make you realize just how far down the wrong road you have traveled. For me that came one night when I split up with my boyfriend and was generally unhappy with life and lacking direction. I picked that moment to get very drunk, smoke some very strong skunk and pop some pills I assumed to be Ecstasy but in fact had no idea what they were.
And then my mind stopped working.
Thoughts… Got stuck. I could see the thoughts I was having but they didn’t seem…
To belong..
To me..
Everything was…..dis…..jointed.
Some thoughts…. repeated.
Some thoughts repeated.
Some thoughts repeated
Some…. thoughts…repeated.
Again and again and again and again and again. I thought they would never stop. Echoing… In my empty brain.
And there were dreams. Horrible dreams which I couldn’t escape from. But they were interlaced with things… that might have been real. Dancing somewhere… Kissing somebody… Falling in the snow… Throwing up… Strange faces staring at me. A voice of a distant me saying things which made no sense. What language is she speaking I wondered. And that question repeated, over and over…. And there was this other me in a distant universe who was getting naked, and these two guys she had never met before were taking turns at her. And I wanted to hate them but I couldn’t because that other me had probably said yes at some point while the real me was struggling with these echo thoughts that wouldn’t go away. But I was less afraid of being raped than I was afraid that my mind… might stay… like this… forever…

Well I got better and I got over it. I came round sometime in the next day or so and had enough residue of sense to get myself to a hospital. I confessed everything I had done and felt utterly humiliated. A physical examination confirmed that I had indeed had sex but I had absolutely no recollection of who I had been with or even where I had been, so there was no criminal case to pursue. To my great relief subsequent tests showed that I hadn’t been infected with anything. I was kept in hospital for a couple of days until all the toxins had left my system and then was released back into the world again. The next few weeks were excruciating, all my confidence had gone and I was so embarrassed by the whole thing I felt like I was wearing a badge which told everyone what had happened to me and how stupid I had been. But I did get better, I did learn and I did grow up.

So why do I mention all that now? It’s because when I think back to that time it is still that terrible fear that I had lost my mind forever that hurts and haunts me the most. And today after visiting my Mum in the care home it struck me that that is exactly what is happening to her but she has done nothing to deserve it.

In previous blog entries I have written a little about the fact that my mother is suffering from early onset dementia. Last November as her condition continued to deteriorate I had to put her in a care home. Since then she has got worse and worse both mentally and physically, despite the best care and supervision we can pay for.

I recently returned from my longest working trip abroad since Mum has been in the home. I knew from conversations on the phone with my mum herself and with staff at the home that her condition had declined, but it was still a shock to see it for myself now that I am back for a few weeks.

She used to take great pride in her appearance; that is now gone completely despite the nurse’es efforts to dress her well. She insists on putting layer on over layer or stripping off completely in the middle of the public areas. She still remembers me, which is a blessing, but her conversations make no sense at all and remind me painfully of the episode I have just described. Her mind is totally disjointed. Thoughts came and go at random. She has no sense of order, time or place. The ghosts of her past mix with what is going on around her and strange dreamlike happenings merge with reality.
“What did you have for dinner today Mum?”
“Dinner? I don’t know. I think the children put it in boxes… With the dress I am wearing… We put it all out on the table… I didn’t sleep… The dog kept barking…”

Disjointed.
Insane.

And yet there is still enough of her left inside to know that something isn’t right. She is not in some blissful dream-world, she knows at some level that her mind isn’t working and the thought terrifies her, as it once did me. With me it only lasted a day or two… For her it is all that is left.

And so I leave her and walk out into the sunshine. I do my daily chores. I prepare some lessons, listen to some music, call a few people on the phone, arrange to meet some friends for a drink, write some reports about my last courses, go shopping, basque in normality while knowing that Mum can never do that again. I tell myself that I have done everything I can to help her. But I still feel guilty for every normal thing I enjoy.