Mum is going to heaven

I posted a few times about how I understand symbols and how they help me identify my emotions. I actually regret now that I didn’t give that topic a separate tag – they are all under communication tag. I may go back to those posts and rectify that but it won’t be today.

Just to make it clear, I never read anywhere about how autistics understand symbols, I guess there was no research on that, especially on how we can use symbols to identity our emotions, I bet no one would come up with that and even if someone would, it would be difficult to execute. Therefore I write about myself here but I assume the same applies to other autistic people.

So, there was this Redecor design released recently, a large bed with canopy that reminded me of excess fabric used in Catholic Church for various occasions and the pillow in the middle of the bed looked like somebody’s head. I mean, who puts pillow in the middle of the bed? Even I don’t, there are two pillows on the right and two on the left. There can be small, decorative pillow in the middle, but this one looked like standard pillow, therefore, together with the duvet it reminded me of someone laying down there, someone who doesn’t have much life left as the pillow was rather flat.

I want to emphasize here that when I saw this design I didn’t do all this complicated thinking consciously, I just felt that the pillow looks like someone who’s at the end of their life and I only explain now to the readers how my judgment got me to make this connection. I hope that is quite clear.

Sky and heaven are the same words in Polish

At first I was put off by that and didn’t want to do this design but then I decided to do it in a way that would emphasize my emotions and I’m quite glad with the result. Gentle florals and sky (sky and heaven are the same word in Polish, ‘niebo’) belong to the new world, this one where my mum is going to; while the check on the bottom pillows and sheet is a heavy pattern so it stays in here, on earth. I hope you can follow my understanding of patterns.

Doing this design helped me to process my emotions and accept the situation I am in: Yes, my mum is at the end of her life, but she’s going to heaven, so it’s a good thing. I can’t keep here here, with me, forever. She needs to go when she’s ready, she’ll be much happier there, surrounded by clouds and flowers, looking out at me from above. It will be much better for everyone involved.

I hope the above explanation makes some sense to you. If it doesn’t, that’s ok, but please remember I’m autistic and I possibly think in a different way to you. The fact that you can’t follow my thought process doesn’t mean that I’m weird.

I want my mum

I spoke with mum the first time in a bit today, as she wasn’t feeling good earlier. Nurses never asked me to speak with her regardless and I felt uncomfortable askig for it, also, if I have to be totally honest, I didn’t want to speak with her knowing that she may be unable to hold sensible conversation. So today, when I called the care home and the nurse said my mum is not too bad, I asked to speak with her, and unfortunately, I wasn’t able to communicate with her at all.

I started with saying that I wanted to talk to her and in response she was just repeating the word ‘talk’ in every sentence, but the sentences didn’t really make sense, except the first one, when she said she’s not in a mood to talk. ‘But I am your daughter – I thought. – Do you not want to talk to me?’

She always wanted me to call more often and I wasn’t doing that because, most of the time, we didn’t really have much to say to each other. She didn’t understand the world I live in and I didn’t want to talk to her about my problems as she would never give me any sensibe advice. One thing she used to say a lot was that I should move to a smaller flat. She didn’t understand that I can easily afford where I live and having an extra bedroom allows for more storage and having guests over (not that that happens a lot). Mind you, she was staying in that bedroom for 9 months and the plan was that she’d stay with me to the end of her life. Well, that was my plan; her plan was rather different.

I think she only came to stay with me because she wanted to show my brother that she can leave, hoping that would give him a wake up call and he’d stop drinking as a result. It didn’t work. My brother in fact realised with time he was better off when mum was at home as there always was food on the table and he wanted her back, and me – to take care of her, but he continues to drink.

I feel so sorry for myself thinking the time I spent with mum, when she was here, was so affected by all those problems we had at the time, and that are still present. I mean my brother drinking – it often felt like my mum brought my brother with him, as she was unable to stop thinking whether he paid electricity bill, whether he has something to eat and what if he kills himself because he was left all by himself.

I’d do with some order in life

On top of that she was constantly worrying about the money that was stolen from her by her favourite bank employee and the bank reaction, that, let’s be honest, was totally unacceptable – they didn’t take us seriously at all till after we informed the police. Mum was so worried about that money, even though she had no sensible plan of spending it. She was always very tight with money and once started argument with me because I bought a pack of penne even though I still had a little bit of spaghetti left in the cupboard.

I felt so powerless over her moods and so disappointed that she’s unhappy. I thought I’d make her life easier as she was able to go to town every day and do some shopping in Polish supermarket that had much better choice than the local shop in our village. I thought I’d make her life easier because she doesn’t have to have arguments with my brother any more, and yet, she let him scream at her over the phone.

If I have to be honest, I’m not terribly sure I wanted her to live with me. But I wanted to make her happy.

When she was here I really didn’t believe she may have dementia. Her memory was actually quite good and only recently I found out that there’s this type of dementia where memory doesn’t get affected to begin with. I did notice she changed and her ability to make connections between facts wasn’t great, but I thought, well, she never was terribly bright, she is getting oder and was through loads of stress, so that must be it.

There was only this one moment when I really thought something was terribly wrong. We started watching a film with quite a compex story and after around 20 minutes she summed it up in a way that a child probably would, simplifying everything that we saw. I was so shocked when I’ve heard her, especially that my mum used to like a good film. And then, after she said that, she didn’t want to watch it any more, she said it was strange.

So that was the moment when I thought something must really be wrong with her, but then, what I was supposed to do, call an ambulance? There’s no treatment for dementia and the drugs available can only reduce some symptoms.

In a way I’m really glad she only deteriorated when she was already in a care home and when I had power of attorney. If that happened here, when she would still be able to walk and I wouldn’t have access to her savings, I don’t know what I would do.

My mum taught me how to saw

When I was speaking with her today, I remember myself thinking, I wanted to move her to a private care home because her understanding was still good, and now it’s not (or, to be precise, her speaking isn’t), so does that mean I’m wasting money? But it’s her money and she deserves quality of life that government care home was unable to provide (it was so crowded that if one in 10 residents would want to get out of bed and walk around the staff wouldn’t be able to perform their duties as it would be too chaotic).

Whether mum has dementia or not I don’t want her to spend the rest of her life in bed, unless she’s unable to get up any more, of course. But I wouldn’t want her to suffer for too long.

What I wanted to say when I started this post is that whenever I was faced with a demand I thought was too much for me, I would curl up in bed and refuse to do anything about it and mum was always making an effort to talk me out of my misery and finally she’d succeed. I want to do the same now: my mum has dementia, I’m not dealing with this, ever. I want my mum to come and talk me out of not dealing with her dementia. Does that make any sense?

Today is my day off but I feel rather groggy. I used the SAD lamp in the morning, as usual, but I think it may be general refusal to deal with life and the cold outside. It’s possible that the lamp is helping but is not remedy for everything.

To say or not to say (that is the question)

So, I had a couple of situations at work today that I didn’t know how to handle. I guess that’s quite a lot, considering I’m just a cleaner, working on my own and only 3 hours per day, but yet, they happened.

The first situation was just after I mopped kitchen and a little dining area at the back of the shop and then moved on to hoover meeting room. A lady who, I suspect, may be a manager, but I didn’t have a chance to get that confirmed (should I just ask her? Would that not be rude?) approached me and said it would be nice if I stayed with them for longer. Well, I thought, what do I say? I do admit some areas at the back of the shop were not very clean when I came there the first time, and even on the shop floor there was a bit too much dust in corners, but what do I say?

‘I can’t stay because I’m about to start a different job as soon as my DBS comes back but maybe you should just tell your regular cleaner off?’ No, that doesn’t seem right. Thank god, I didn’t say that.

Suddenly I had a breakthrough idea: to mirror the information that I am being given.

The lady I spoke with only said it would be nice if I stayed, didn’t comment on previous cleaner work at all, didn’t even comment on my work. So the right response would be to explain I’m about to start a job in care and that’s what I did. What I realised later, I wouldn’t know how to use this approach if I in fact wanted to stay. It seems like a different strategy should be used in that situation. Or, possibly, it would be ok to say ‘Oh, thank you, that would be nice indeed. I really like being here’ and then see how the situation is progressing.

The second situation was, when a different staff member, a young girl (girl for me is any female under 26), complained about having dry lips. ‘Did you try vaseline?’ I was about to say when I realised that she probably knows about that trick. Would I sound bossy and boring if I said that? I really don’t know, but that’s what people seem to think about me when I offer them a piece of information (I can read face expressions up to a point, I just never know what to do with what I found out). ‘It’s probably the cold weather’ I finally said. Hard to say if it sounded any better, but maybe it did as I wasn’t telling her to do anything. And, after I said that, I continued cleaning. This is what I like the most about cleaning job: it’s so easy to make myself busy and avoid long conversations.

Some Redecor patterns. They look very clean to me.

And, to be perfectly honest, it’s not that I don’t like talking to people, it’s more that they seem not to like talking to me so I try to spare them this effort. You see, I already stated multiple times here: I think about other people the entire time!

The third situation was, when a lady, a bit older than me, told me she had a bad cold and she feels worse now, on the forth day, than when it started. The first thing that came to my mind was to tell her this may be COVID and then laugh. But then, I realised, that would not be appropriate towards somebody I don’t know well. But then, how do I know if I know someone well enough for this kind of joke? Only after realising I’m autistic I found out that some jokes are appropriate in some situations and not in others, but I still don’t really know how to tell one from the other.

Before my self diagnosis my default mode was to just say it and only later I’d be like how come other people are not laughing and why I get things wrong so often? Now I’m more like ‘don’t say anything that you think may be funny, don’t say it just in case’ but then, I’ll be like, am I not becoming the most boring person ever? Boring cleaner, what can be worse than that?

Anyway, I had another of my chocolate and zucchini muffins today and it tasted and even looked much better than yesterday, so I will consider making them again. I also have plenty of energy, which must be due to the SAD lamp. Straight after work I went to town, not because I was desperate to get anything, but because I decided I didn’t want to sit at home on my own. After coming back home I started cleaning and tyding and washed my bedding and towels. I actually had to force myself to sit down, which is what I’m doing now, drinking tea while burning some essential oils in my oil burner.

Having this tiny bit of rest, I keep thinking, what I’ll be doing before I go to sleep. Normally I’d be on my mobile, but it feels I have too much energy for that. Fingers crossed my flat will become clean, tidy and well organised from now on. I trully recommend the lamp to anyone.

Oh, BTW, I spoke with my brother and he said he’s planning to pay electricity bill but didn’t know what to do with the meter reader to report on his usage, but he got this sorted already. This is what kind of overprotective neighbours we have, although I take it, my brother was probably panicking while speaking with them.

I also had a phone call from my mum’s care home. She’s apparently not very well, very weak, however her parameters are not bad and she says she’s not in any pain. It’s really sad I can’t even go and visit. Hard to say how much life she has left. At least good that I moved her to a nicer place, I would really regret now if I haven’t done that.

Deja vu (plus I’m incredibly sad)

I mentioned in my last post that I baked zucchini and chocolate muffins today. I have been doing so called ‘healthy baking’ on and off since the end of 2019, shortly before I had my second psychotic episode and was sectioned, but I was convinced that I never baked zucchini muffins before.

And only several minutes ago I had a look at one of the muffins again and felt like I was having deja vu: a muffin that looks like black pudding? I certainly saw that before, and probably not so long ago, although possibly before I started blogging. I remember now how I complained to The Boyfriend about it! I did eat them all at the end, and the problem was not that they weren’t edible, the problem was that they looked like black pudding and that wasn’t mentioned in the recipe. Unless people in US don’t know what black pudding looks like, or possibly their version looks different to our, Polish one, that is brown with grey ‘eyes’ made of buckwheat. So that’s how my muffins look like: brown with grey eyes made of zucchini.

And don’t get me wrong, I love black pudding. I love most Polish traditional foods, but I don’t like food that looks like black pudding, but it tastes a bit like a cake, but not too much like a cake as it’s not a real cake, it’s a healthy one.

I didn’t decide yet whether I prefer zucchini or beetroot muffins, or possibly I need to keep looking for something else that will give me the cakey kick without the calories.

Mum wouldn’t like this room.

However, I’m not sad because of the deceiving muffins, seriously, they wouldn’t influence my mood at all. I’m sad because I miss my mum. Obviously I’m unable to go and see her. It’s not very practical to be spending money on travelling when one doesn’t have a proper job, like me at the moment, but also the visits in her care home have been completely stopped. But the thing that affects my mood the most is that she’s not the same mum I used to have. I can’t have normal conversation with her any more. She’s unable to help me with anything, like she used to (provided it was something easy).

I only realised quite a few weeks ago, when I was in Poland, that she used to always solve the problems my brother gave me. Solve wasn’t probably a good word, cover up could be a better expression. ‘Mum, I used to have 100PLN in my purse and now I only have 50. W. must have taken one note!’ – I’d say angrily and mum would get her own purse out to give me 50PLN. It didn’t even cross my mind that it was like if he stole from her. My thinking was: she’s his mum and he’s misbehaving so she needs to take responsibility and mum was playing that role very well.

Later on she’d tell him about that and obviously he would deny anything. He would start arguing if pressed a bit too hard, but I never took part in it, in my head it was my mum’s problem, she had to sort it out.

And now I’m in the situation where my brother is probably telling people in the village what a horrible sister he has, who put mum into a private care home when he has no food and can’t pay the electricity bill. And mum can’t come and tell him off for that. I’m all by myself and I have to cope with that somehow.

Dear neighbours (and a bit more about my diagnostician’s communication methods)

The beauty of living in a village in Poland is, that you have neighbours. Well, obviously, people who live almost anywhere in the world, also in the cities, have neighbours but Polish village neighbours seem to know everything about each other. My Smardzewice neighbours still have impact on my life even though I moved thousands kilometers away. Google map says it’s 1098 miles, I actually thought it will be a bit more than that, but it’s still far enough.

So, basically, two neighbours contacted me today because they were concerned about my brother not being able to pay the electricity bill. I was, however, informed that it will be ‘our’ electricity that will get cut off. Our? I permanently moved out from there 18 years ago and was only coming to visit because of my mum. The neighbours also knew that my mum’s pension hasn’t reached her account – it’s partly my fault, being in Poland I could have easily gone to the pension provider and make sure it’s sorted but I just assumed it will automatically be delivered to the same account that mum was using before she was taken to the government care home. How come the neighbours knew about it, I am not quite sure.

I managed to speak with a nice lady in mum’s pension provider office (that is a government organisation btw) and she informed me I have to write a letter regarding where mum wants her pension, however, she didn’t know how to approach the fact I have Power of attorney for mum and finally she told me to just write that letter like if it was my mum writing and then sign it for her. It’s shocking to me that those kind of practices are being used by government agencies, but it’s not unusual in Poland, I guess. The lady also informed me that she never came across anybody staying in a care home and paying for it privately. Oh well.

Regarding the neighbours, I told one of them – the second one, this one who was involved to speak to me by the first neighbour – that my brother stole large amount of money from my mum, used to create arguments, was probably the one responsible for her accident, believes he’s one level above everyone else, the electricity account is 55PLN in credit (I sent her relevant screenshot) and I asked her not to contact me again regarding my brother’s problems as I need to take care of my own mental health first and stress can cause me another psychotic episode. That should hopefully shut them up for quite a bit.

Swindon to Smardzewice. No matter how far or close it is if there’s no reason to go there.

In general I am very good at shutting people up, which is good if that’s my intention but when it also happens when I want to speak with them again and create meaningful connection it’s not so good.

I baked chocolate and zucchini muffins today, they seem to be slightly too moist but hopefully they’ll be better tomorrow. That’s often the case with the healthy bakes – they taste better the next day. For now I had the last of my chocolate and beetroot muffins. It is an overstatement to say the beetroot flavor was totally gone. And mind you, I love beetroot, but maybe not in cakes.

I was wondering yesterday how to make my blog ‘more autistic’. Should I review articles from Spectrum News? But then, I’d have to read them first and this may prove difficult! The fact that I’m autistic doesn’t mean I enjoy reading about autistic mice or even autistic genes. Meeting my diagnostician, who was excellent when it came to my autistic communication needs makes me feel now like I want to reject all the other autism related information and I want to focus entirely at researching how we, autistics, communicate, but the information that I need is not available anywhere.

I mentioned here already, I think, how my diagnostician used to create ‘sentences with a void’ that I used to fill in with whatever I had in my head. I already worked out one type of this void before (to remind everyone: if you say to an autistic person ‘There are some good films in the cinema but going on a trip would be interesting too. It would be nice to do something interesting together’ then ‘something interesting’ is a void that the autistic person will most likely fill in with their preferred activity without feeling the stress that is often accompanied by the need to answer a direct question).

The second type of void was described in a post but I didn’t work out yet how to use those type of voids, hopefully it will happen with time. I could then use this on The Boyfriend. I’m sure he would be thrilled. What I realised about it later, that is not in the original post, was that my mum not only told me that she’d rather be in a care home than living in a foreign country with me, but also it was like if she was telling me that I need to take care of her because my brother won’t do that.

Wait a minute, how come my mum got herself into the part of the post about my diagnostician? I suppose, she must have used the same communication method my diagnostician did, or possibly it was just something she said without much thinking but that’s how I understood it as it reminded me how my diagnostician used to speak with me.

Seeing the pattern?

Next type of void is a bit easier to use but somehow I didn’t notice it till very recently. I don’t know how to explain so I’ll just move on to relevant examples:

‘You’re second’ (me wondering who’s first).

‘On this occasion you won’t face any consequences’ (and on what occasion I will?)

‘I may support you in the future but it won’t be with this’ (and what it will be that you’ll support me with?)

I recently tried that with The Boyfriend when we were discussing cooking Christmas Dinner (which may not take place at Christmas). The Boyfriend always wants to follow recipes in every detail while I use them as guidance only and usually don’t even use a recipe. The Boyfriend gets very stressed if he doesn’t have even one ingredient from a long list, he’ll rather not eat at all than cook without it. So I explained it has to be him who has to make sure we have everything he wants to use and then I said ‘I don’t think our cooking styles are compatible as I’m a relaxed cook’. The purpose of that was to get him to ask himself a question what kind of cook he is: ‘our cooking styles’ implies there are two but only one was named so the second one was void. If this communication method worked on The Boyfriend the same way it used to work on me when I spoke with my diagnostician, he would want to fill in that void. However, he would not tell me that, so only with time I’ll see from his behaviour, if he decided to be a bit more relaxed in the kitchen.

That was a long post, wasn’t it?

Being off work – a little sum up

From what I remember, the last time I was actually at work was around the end of April, so it’s approximately 6 months now. Therefore I’d like to sum up this time here, not from the perspective of someone who can’t find a job (I did only start looking recently and received some job offers immediately) or someone who can’t pay the bills or put food on the table (most of my bills are paid by direct debit so that’s not an effort at all and I usually eat on the sofa) but from the perspective of an autistic person who managed to take time off and reflect on herself.

Initially, after I was suspended, but still employed, I took a bit of time to just rest. The year before I was suspended was a difficult one: in December 2019 I was sectioned while having a psychotic episode (a second one) and I spent a month in the hospital and then a few more weeks at home, first off sick, then working part time as a phased return. At the beginning of March 2020 I went to Poland to spend time with my family and that’s when Polish government introduced lockdown. It was all very stressful, while it was meant as a holiday before going back to work full time.

I managed to come back to the UK on one of the rescue flights a few days before I was initially planning to as staying there I was worried too much. I remember than when I was packing I got obsessed with taking all my belongings with me, like some acrylic paint that I was using to do art after recovering from my first psychosis, pijamas that was always there waiting for me to come over, some books I used to read in secondary school or even some not very elegant underwear. I ended up going back with two suitcases, not just one. I remember having that thought while packing that I’d never go back there… and that kind of turned out to be true. I went back there but things were never the same any more.

I came back to the UK, went to work, did like two or 3 shifts and my dad suddenly died. And I couldn’t go to the funeral.

I didn’t have good relationship with my dad at all but I was always telling myself that it’s due to his mental health problems and I really needed to see him that last time to say that I understand and forgive him and love him anyway and that was taken away from me, the same like his entire life.

In the meantime the UK introduced lockdown and all the services that I was intending to use to feel better, that finally were being available to me due to having history of two psychotic episodes (they were not available when I was just autistic) were starting to operate online instead of face to face and it didn’t agree with me. I also was unable to see The Boyfriend for several weeks.

In May I found out mum was taken to the hospital and from there to the care home, without asking her if that’s what she wanted or me what I thought about that. The care home staff was terrible and she was complaining of suicidal thoughts so when government in Poland suspended quarantine for people coming from abroad I went back and took mum out. I then quickly found out that there’s loads of money missing from her bank account. That was in the middle of August 2020.

Then mum and me decided she can’t stay in Poland so she’d come with me. My brother was drinking more severely than before and mum would be at risk of being hurt if she stayed there.

So at the beginning of September mum came with me and almost immediately wanted to go back. She would come into my bedroom on loads of mornings when I was meant to go to work to talk about how she’s worried about my brother and then I had to really rush in order not to be late. While my brother would call us and scream at her. Ten minutes after the phone call finished she’d say that she had a feeling that he changed. She was trying to control my spending and comment on clothes I was wearing and how I arranged my flat.

Rather plain reality

At the same time her bank completely ignored our complaints. At some point they actually changed the subject of complaint from ‘missing money’ into ‘poor customer service’. It wasn’t until I got the police involved that we finally felt someone is listening. Still, things were taking loads of time and we were asked to go there to give witness statement and, pandemic aside, when I was seeing how bank ignored us and our evidence for months, I started thinking that they’re all part of organised crime and when we go there, they’ll find us, kidnap and kill us to keep us quiet forever. It was reminding me the situation with Home Group – that was exactly subject of my delusions during my first psychotic episode (although it’s quite obvious that Home Group would like to keep me quiet, isn’t that right Mr Henderson?) and I started getting somehow paranoid.

Around the same time pharmacy (or maybe it was meds prescription service?) messed up my meds two months in a row so I’d decide to get off them as it was too stressful worrying if I’m going to get them on time…

I was off sick for three weeks around the time, certainly not enough, but then I had mum around the house moaning the entire time (well, I can’t really blame her for being stressed, it’s just that I didn’t know how to deal with that any more) so I just ended up going back to work. And that’s what happened… I ended up suspended and then fired. I’d never expected that’s what would happen to me, but it did.

So, first of all, I took some time to just do nothing and recuperate. Then, I wrote My Story. I’m glad I was off work when I did it as it needed a lot of focus to decide what details need to go into it, what needs to be left out. It took me two weeks to write it. If I was working at the same time I’d need probably like 6 months for that as my thinking process would be affected if I wouldn’t be able to fully focus on it.

Then I had this idea to start a website. At first it was meant to be very informative one and my personal experiences were meant to be left out. I wanted the website to be the a start of my own business – one where I’d be giving speeches to companies about my experience of employment with Home Group (at the time I still called them The Company) and it was meant to draw attention to workplace discrimination in relation to autism.

If you only just started reading now, I was employed by Home Group, harrased by a colleague, asked GP for autism diagnosis referral (that I earlier thought won’t be needed), got prioritised by the diagnostic centre due to my work situation but the diagnosis didn’t stop the harassment so I handed in my notice and took Home Group to employment tribunal where they claimed my diagnosis was private and they organised it through AXA occupational health! Seriously! That’s how bad workplace harassment can be if you’re on the spectrum.

A little bit of optimism.

So, as I was thinking, that was very important story for people to hear but knew that Home Group would likely try to stop me if I try to talk about it just like that so I was spending loads of time planning what to do about that. I was even trying to arrange for a legal advice but at the end decided not to proceed with it. Legal advice felt like I was going for a fight and that wasn’t my intention at all. My intention was to raise awareness.

So anyway, as I was thinking how to secure my right to talking openly about what happened to me in Home Group I realised I missed an important factor: if I approach businesses with my story, they may possibly want to pay for me to talk to their staff, at least initially, and I may be able to get my business going for a while but the end result won’t be what I was aiming for, it won’t be better understanding and inclusion for an autistic staff.

The end result will be that people in charge get that message accross: if you have an autistic employee taking you to employment tribunal you’d better check all the paper work five times!

That wasn’t what I was aiming for. What I was aiming for was understanding and inclusion and therefore possibly from this place in this post I should express that I’m ready to forgive (well, at least I’m trying) and that Mr Henderson can contact me through my psychiatric nurse (he was given her contact details once) if he wants to apologise.

However, I need to make it clear here, this is not something I can keep quiet about. As I already stated million times my aim is to raise the awareness. Being quiet won’t achieve that.

Talking about difficult experiences

So today I had my second day of an online training for live in carer. When we were about to discuss dementia I decided to share my recent experience with mum: I said how I had to finally accept that she has dementia after her state deteriorated rapidly but just a few months ago her memory seemed to be perfectly fine. She would go to the shop without a shopping list and bought exactly what she needed, she remembered (and still does) what bills need to be paid and when for her house and if I agreed with her we will be doing a certain thing in a couple of days she’d remember it. She had problems with more sophisticated thinking but then, as she always was somehow disorganised and absentminded, I thought it’s just her plus normal aging.

And yet, when I was visiting her in the care home recently, where she had to be placed after a serious fall, I realised she at times talks nonsense. It was very difficult to accept the fact, that yes, that must be dementia.

And then the trainer thanked me and said it must have been difficult for me to share that and I felt rather invalidated (again – being invalidated is not an unusual experience for an autistic person).

No, talking about that was not difficult. If it was I wouldn’t even start. Experiencing it was difficult, but talking about it was easy and I was really eager to raise awareness of the fact that yes, it is possible to have dementia even if one’s memory seems to be unaffected.

The trainer’s comment was meant to make me feel better but instead made me feel worse. I felt like I should be experiencing the situation in a different way, like the fact that I didn’t find talking about it difficult meant that I don’t care about my mum.

Similar situations happened to me so many times before: people trying to sympathise with emotions that I don’t experience make me feel really bad about myself.

I would prefer the world to look like that.

At other times people ignore emotions that I do experience and that is equally bad. I’ll make sure to post about that too when it happens.

As the training progressed I found out that in fact there is a type of dementia where memory problems are not the first sign, frontotemporal dementia, that usually affects younger people but can happen in elderly as well. Pointing this out by the trainer would be a reaction much more appropriate for how I felt, but then, again, there wasn’t any point in saying that. I just had to carry on with my feeling of being made wrong by the trainer’s good intentions.

I’m wondering now whether I in fact never heard about all those types of dementia? I was working in learning disability sector of care, not elderly but we had trainings about all aspects of care so possibly it was mentioned at some point but I forgot about it. As ironic as it may seem: forgetting about dementia.

Overall, realising that your loved one is affected by this illness is difficult. But then it would be difficult for any illness, but possibly in a different way.

I was talking to The Friend yesterday that now, when I’m back in the UK and I’m on my way to being employed again I’m glad that I moved mum to the private care home. That it has to be paid for? Oh well, people pay for care all over the world but at least mum has some more space to move around in her wheelchair, instead of spending entire days in bed, like in the government care home.

That brings me to this question: should we trust our feelings?

As I was organising mum’s care home transfer I was getting extremely stressed and worried, focusing a lot on the fact that one day her savings are going to run out and what I’m going to do then. On the day when the transfer was meant to happen I woke up with a strong urge to cancel everything and tell the nurse in the government care home that mum would have to stay there. The only reason that I didn’t do it was because I hate disturbing other people order of things. Avoiding that was far more important than listening to my feelings.

But now, when I’m back, I’m really glad I moved her. It’s her money after all that pay for that and I’d feel bad if I inherited it while knowing that I didn’t give her the best quality of life that she can have, considering the circumstances.

That’s how confusion looks like.

But yet, I can think of at least one situation when my feelings were warning me: when I was just about to start my empowerment with Home Group I was getting extremely worried and having the feeling like I wanted to escape the entire thing. At one time I had an anxiety attack on the bus only because a lady sitting next to me was using strong perfume and I was by the window so I couldn’t change seats. That was my first anxiety attact in my entire life.

But then, I explained to myself, that’s possibly because I just realised I’m autistic (I used to call it Asperger’s at the time) and it was absolutely life changing: it meant I’d never learn to fit in, no matter all the effor I make and, at the time, my entire life seemed to evolve around that: how to learn to fit in. It was 24/7 project of mine. I was hoping that with some effor I’d finally manage to fix myself.

So possibly my panicking was in fact caused by the realisation that I’m autistic and not by instinctive anticipation of what was meant to happen in Home Group a bit later.

Disclaimer: links to all the posts mentioning Home Group are sent to it’s CEO, Mark Henderson. He never replies.

Some are also send to prof Simon Baron-Cohen to ask him what to do so that similar situations never happen to autistics people again. He doesn’t reply either.

Mild depression

I think I developed some form of mild depression. I just did a test online and received 13 points out of 27, so nearly half. When I first got the idea that I may be autistic that was what puzzled me the most: my mood. I was sure that autistic people don’t have any mood fluctuations because, well, they’re autistic so they don’t have mood at all, everything they do is automatic and never involves emotions.

I feel so bad about my mum being in a care home. I know it’s the best option for her but the fact that it had to come to that. It feels like our family is ending, I can’t go home any more, I can’t talk to mum any more, she’s unable to provide support. It feels like I’m facing a massive void: our family is ending and there’s nothing else to replace it.

I woke up at 1am today and decided to try to sleep with an eye mask that I was given when I was in the hospital in Weston-super-Mare, but I don’t know if I actually fell asleep again or not. It feels like it would be a long time to be awake till 7am and not notice that, so I think I probably got at least a bit of sleep during this time.

I have another 3 interviews today though I don’t really want any of those jobs, only going there to practice interview skills. I feel, however, like I shouldn’t start any job at all, I should just stay in bed and dwell on my loneliness.

That’s how I feel right now. Created on Redecor.

Even though I didn’t spend much time with mum during the last several years, I always had this idea that she is out there somewhere and if I come home she’ll serve me a plate of hot soup. Sometimes she’d come to the station in Tomaszów to pick me up after my travels. What I did a couple of times was, instead of going straight home during my annual leave, I went travelling first but I travelled towards Poland.

I went to Austria twice this way, coming back through Prague, once to Luxembourg and I travelled through Germany to Wrocław and once to Lithuania. Actually, in Lithuania mum joined me. She came by coach and we spent a few days in Vilnius and then Kaunas. This is never going to happen again. I don’t know how I’m going to cope.

It feels now like it will be just work, nothing else. There’s nowhere to travel to now. My home is where I’m now but there’s no one waiting for me here.

How does dementia start?

I didn’t sleep very long again but I should be ok. I’m thinking now that I’m glad I came and even that I lost my ID and had to stay longer. Due to that I could have seen how my mum’s mental state deteriorated, if I didn’t see that I would not believe she has dementia. Now I know that is unfortunately true.

I’m wondering now if some of her unusual reactions a few years back were possibly early warnings signs that have been missed. I’m thinking here especially about this situation when she had a ‘feeling’ how to get to Moulin Rouge when we were in Paris, which was approximately 10 years ago. Not that anything could have been done at the time as there are no treatments that prevent dementia from progressing.

There’s not enough conversation about aging in the public domain, which is sad. How can I prepare for those situations if nothing is ever being said? It feels like me and my problems have to stay underground.

The Boyfriend told me yesterday he’s proud of me as I achieved a lot. Well, I suppose he’s right, even though I felt low and anxious a lot and needed plenty of rest, the most important things have been achieved: mum is in a better care home and I stopped obsessing about never getting my inheritance. I suppose she needs that money now much more than me to have quality of life. I just need to find a job and I’ll be ok.

Redecor (that’s not what I normally do)

I guess I can consider my trip to be mildly successful then: I managed the above without developing another psychotic episode and I still have 9 emergency olanzapine tablets (I think I initially brought 12 with me) but zopiclone is all gone (I think I had 8 to begin with). So that means I can cope with stressful situations. Obviously life has tendency to be stressful at times and I can’t avoid dealing with situations because I’m scared I’ll get psychosis. Unresolved issues will also cause stress at the end.

Why I see this trip as only midly successful then? Because my brother still drinks and neglects himself. Let’s be honest, I say I have no hope for him but then when he doesn’t change I feel disappointed and hurt so that means the hope must have been there, even if I was not aware of it.

It would also be nice if mum’s bank refunded her the money that was stolen, although I realistically know that would take much longer than a few weeks.

I also paid all the bills that my mum asked. Only so that my brother could live in the house undisturbed. He’ll pay after new year, she says.

My train to Kraków leaves at 11.45 but getting to the station is not going to be straightforward as it’s Saturday so I need to leave around 10.15, which is just over 3h. I love Kraków but in this particular situation I’m not looking forward to go there. I’d still prefer to stay here and make sure mum has everything she needs. It’s so difficult, I’m telling you, especially when I know that my brother is drinking and cannot be trusted with absolutely anything.

Me and mum – the last visit this trip

Mum seemed alert today again and yet barely talked to me. She said again she has a feeling everything is going to be well and even that my brother will stop drinking.

She also asked me why I went back to the UK before dad died (that’s a story for another post altogether). I didn’t know he’s going to die, did I? He was still doing quite ok.

At the end of the visit, when I knew I’d have to leave as there’s another visitor coming, I asked her if she wants me to drive her around in the garden, as the weather is really good today. She refused, she said she’s scared she may trip. ‘But mum, you’re in the wheelchair’ I said but she said again she’s scared.

Just a few months ago she used to go shopping all by herself without a shopping list and she almost never forgot anything.

Me and mum on the bus stop in Studzianki

As I was walking back to the bus stop I had that weird feeling that I don’t deserve things. I don’t deserve coffee out, I don’t deserve new clothes or a cinema only because my mum is not well and I’m leaving her.

I took that strange photo while waiting for return bus to Tomaszów. Me and mum, and no, I don’t have a twin sister but I want it to look like I’m protecting her. It’s a symbol that everything is well, even though mum’s mind doesn’t work like it used to.

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