Day 13 – 999

The house feels different. Not emptier, or sad but peaceful; calm.

We once had this house exorcised, soon after the stepmonster passed away, to remove all traces of his evil energy. The exorciser had a great deal of trouble removing him (not knowing anything about him, just that there was an incredibly unpleasant evil energy here that didn’t want to leave). It took a long time and he had to call in the big guns: Jesus, Mary and a number of the Archangels. The stepmonster still didn’t want to leave and hung on with everything that he had.

Since we brought Mum home, the energy here changed but not as much as she did. For the past seven years she has been nothing but bright, happy, funny and grateful. Literally, as she stepped through the door, it was as if she became possessed. Having not mentioned the stepmonster in six years, she was suddenly calling out his name and looking for him in the house. We obviously put that down to the house triggering something deep in her memory. However, it didn’t explain the ringing of a windchime inside the house, which started to ring at the same time every evening – without a hint of a breeze. It’s never done that before. Never. It didn’t do it last night after she left. Could it be that Mum was possessed? It certainly looked and felt like she was.

Yesterday was absolutely horrific. It’s hard to describe other than to say that Mum was possessed. In response to handing her her dressing gown, she started screaming nastiness at J, her eyes changing colour and the expression on her face terrifying and contorted. He’d literally done nothing at all to her. She then did the same to me when I offered her a drink, food…even when I looked at her. It wasn’t just the screaming but the aggression that came with it and the sheer look of absolute hatred on her face. It really was as if she was possessed, repeating the same words over and over like an incantation.

It got so bad and my trauma was so triggered that I eventually couldn’t look at her, felt physically sick, felt numb from head to toe but also as if every cell in my body was aching and a migraine hovered. The air in the property felt so dark and heavy that it was hard to breathe.

We put up with the horror all day and then, as it was unrelenting, and had been going on more or less since we brought her home almost two weeks ago, I decided it was time to do something about it. I dialled 999 and when asked which service I wanted, replied that I really didn’t know.

I was put through to the police and a very kind young officer patiently listened to my tear-filled description of a living hell and said, “Don’t worry, I will call an ambulance for you.”

About an hour and a half later, I received a call from the ambulance service. They asked a set series of questions about Mum’s condition and I felt convinced that because she wasn’t armed, bleeding, or having a heart attack that we would be left to deal with her indefinitely. Obviously, the social services were not taking the situation seriously and I thought it would the same situation with ‘999.’

I was told to expect a further call from the ambulance service which came more than four hours after my initial call to the emergency services, from a gentle young woman. She could hear how traumatised I was and was extremely understanding and kind to me. We went through more questions; again, I was concerned that they would think that we were overreacting, but instead she said that this was a category 2 call, (category 1 is when someone stops breathing), and that an ambulance would be with us swiftly.

About 20 minutes later three of the nicest paramedics arrived at the door. They each had a specific thing to do, with one of them talking to me away from Mum whilst the others carried out various tests on Mum. One of the three also had lived through a similar experience and said that he couldn’t do it. Knowing that a trained paramedic also couldn’t cope long term with a demented relative did offer some sense of relief.

Mum was eventually strapped onto a wheelchair and removed from the property. The paramedics kept her occupied and she didn’t look back as they wheeled her away.

A migraine instantly started thumping (a c-PTSD symptom) and I felt emotionally numb. I hoped that I would sleep – the first night in two weeks without the prospect of a movement sensor going off – but no such luck.

I had turned the ringer off on my ‘phone but still got up a few times in the night to check whether there had been any calls from the hospital. Thankfully, none. I eventually fell into a distressed sleep and woke up to the lightened energy in the house.

It is now 9.30am and the hospital have just called – the doctor treating Mum wanted to get further background to the situation – she also let me know that Mum is confused but calm (after I asked), which is a massive improvement on the past almost two weeks.

The sun is shining outside but having not emerged from this property in 13 days, I am feeling a little agoraphobic. So many options of things to do, things that will lift my spirits, things that we had hoped to do with Mum; go out for breakfast and then a country walk, that I am filled with sadness and grief, too. Sadness and grief, with a heaped spoonful of relief on the side and sprinkling of guilt and failure.

Life is complicated, isn’t it?

Advertisement

Day 10 Ongoing…

We are so done.

What on earth were we thinking when we said we would bring my mother home to live with us from the care home?

I’ll tell you.

We were thinking that despite Camden Social Services not supporting us in 2017, when she was diagnosed as borderline diabetic (by a private GP that we had to take her to because the NHS one who serviced the care home she was in, was reading her test results incorrectly and causing other serious issues by taking her off medication that she needed), the care home she was in told the doctor that they would NOT put her on a diabetic meal plan. They then proceeded to feed her biscuits, cakes, sugar and sweets in front of me when we visited (which was often).

Instead, Camden downgraded Mum’s care (having already stated that she didn’t have enough capacity to choose me to be her Power of Attorney) and moved her into an assisted living flat. They assured us that Mum would be fine, that she would have 24/7 care, that she would have her meals personally cooked for her and so on.

It was a worse nightmare than we could have ever imagined: she was ultimately left alone for the majority of every day that she was there, sitting in the dark and perched on the edge of a sofa; a sofa that she had no idea she owned.

Mum was starved. When she was fed, she was given frozen salmon from the freezer, or eggs for every meal (presumably because that’s all the ‘carers’ could be bothered to prepare), or food that had been opened at an undisclosed time because the ‘carers’ did not label anything, nor wrap it appropriately. There were raw beef meatballs that were left in their (uncovered) for over a month until we finally threw them away. Fortunately, as Mum had no idea that she was in her own flat and paying a great deal for it, she wouldn’t open the fridge and help herself.

That same fridge became filled with black mold that was causing a stench like a burst sewer that you could smell from 50 feet away. The ‘carers’ did nothing and instead said that they thought we had bought Mum some smelly cheese. Mum’s specific ‘carer’ demanded that we give her money to take Mum to the cinema, zoo, theatre, restaurants etc. and also told us that she would get on to Mum’s bed at night with her.

It literally was a never-ending nightmare of absolute horror and instead of helping us with it, the Camden social work team who had thought this was a good idea, were vile to us, useless and obstructive, even resorting to shouting down the ‘phone at me, “Why don’t you look after your own bloody mother?”

We then moved Mum in 24 hours after seeing in the notes that a ‘carer’ carelessly left on the table that Mum had been fed half a pita bread, a banana and 6 coffees over the course of THREE DAYS.

Again, Camden got away with that.

At this point (possibly because Mum was starved and underweight but more hopefully due to us only providing healthy foods for the ‘carers’ to cook), Mum’s blood sugar levels were totally in the normal range – no longer prediabetic.

I explained that Mum had been borderline diabetic and that we wanted to ensure that she was put on the diabetic meal plan that the new home said that had. They agreed! Hoorah! It had taken us viewing 60 care homes whilst Mum was in the assisted living place to find just one that had agreed to feed Mum properly.

Needless to say, six weeks after moving in and literally a minute after the Camden social workers left from carrying out their review of the home, we were told that Mum’s blood sugars were sky-high. The care home manager assured me that Mum was on the diabetic meal plan and that nothing she ate had added sugar. She wasn’t interested in understanding that refined carbs or any excess carbs are also broken down into sugar.

I immediately emailed the Camden ‘reviewers’ and explained what had happened and asked for their help. They, at this point, clearly knew the issues regarding Mum’s blood sugar issues and my insistence that it be taken seriously. No response.

Some months later, after trying to deal with the situation myself, I emailed a senior member of the social work team and asked for a ‘best interests’ meeting to be carried out, so that it could be established that Mum did not have the capacity to choose the appropriate food for her condition, when she was presented with offers of cake, biscuits, sugar etc.

Again, I was ignored.

Fast forward to September 28th, 2020. Mum had been having all sorts of horrendous diabetic symptoms that were also totally being ignored: dramatic weight loss, passing out, dehydration, excessive thirst, UTIs etc. It took me – separated from Mum because of the CV19 regs, to request a test for diabetes when the ‘experts’ in the home wo were with her 24/7 saw nothing – which obviously came back positive. There was no diabetic meal plan at the home. Not only that but the actual manager overseeing this horror is herself diabetic and has been dieting and exercising for at least the past 3 years to reverse her own condition. You. Could. Not. Make. It. Up.

I obviously called in what I thought were the ‘Big Guns:’ Camden, Safeguarding in both Camden and Hertfordshire (where the home is located), the CQC, the home’s head office, the GP surgery and requested their help in reversing this and getting Mum fed a healthy and SAFE diet. Really? Who feeds a diabetic the foods that not only caused the condition but will also kill them? Answer: all of the above people who have chosen to specifically accept a wage for keeping the most vulnerable amongst us safe.

So, back to where I started – in so many ways.

Here we are, eleven days in to having Mum at home. She hasn’t been bathed yet and now stinks of s*it. It is making me gag. I have tried bathing her but initially and possibly still, we do not have the appropriate equipment to bathe her. Mum refuses to sit on the bath lift which finally arrived 36 hours ago; she is afraid of it. She will not allow me to undress her – goes in to full on panic mode – screaming/aggressive and trembling with a look of terror on her face. We flagged bathing as an issue over a year ago to the same team when we were asking to bring Mum home for a week or two on a trial basis fearing that this situation might occur. Oddly, that request to bring her hoe for a week or two seemed to fall by the wayside but the one stating that we would actually bring Mum home didn’t and here we are.

We requested to bring Mum home – stupidly, it now seems – so that we could save her life. It was the only way to get her off a highly refined carb diet and medications that were clearly making her unwell (not that any of the ‘carers’ or GP noticed) and to feed her real food. Can you imagine that? All of the ‘caring’ services were happily witnessing a diabetic being fed constant sugar and thinking that it was acceptable because she was being given medication rather than healthy food to control it AGAINST HER OWN WISHES.

We recorded Mum when she had more capacity to understand the situation years earlier to make her wishes about diet clear. She stated that she would rather be healthy than eat cakes and biscuits. Even a women with dementia knew that her health was the most important thing. Not only that but I, as Mum’s legal representative, her Lasting Power of Attorney, was blatantly ignored when requesting Mum’s condition be controlled and reversed with diet by her GP.

We also brought Mum home because of the unrelenting PTSD caused by having a loved one in a care home, knowing that they are being harmed and not having any way of stopping it – other than doing what we have done.

This morning she has gone crazy. She IS crazy. It is distressing for us all. Apart from screaming repetitively and being incredibly abusive, she has refused to get out of bed, refused to eat anything (including a Huel chocolate shake, so that I can administer her medication), is making ongoing groaning noises to get our attention and did I mention that she really stinks?

Camden are ignoring our pleas for help.

I have even sent them copies of my severe complex PTSD diagnoses (three in total), which outline in black and white that my mother is my biggest trigger. No response at all. Bearing in mind, I already spoke with their own consultant psychologist earlier this week who said that she understood that it was triggering my c-PTSD, nothing.

They are yet to organise someone to come in and bathe her (now day 12 without being cleaned because she will not let me near her) and whilst the sun is shining brightly in a blue sky, we are being kept imprisoned because a) the care home gave her back to us with feet covered in sores that are so painful Mum hasn’t been able to walk and b) she is now so filthy and stinky that I can’t bring myself to take her out in public, if she will even allow me to dress her to do so.

If you know what we can do in an emergency to get Mum moved from here, which is clearly causing us all horrific distress to already traumatised people, please let me know. Her social worker has thus far done what appears to be next to nothing, if not less.

Day Nine – aka Day 19,799

That’s it! I am done. There’s no amount of Charlotte’s Web that can soothe this.

I have just sent an email to the consultant psychologist provided to me by our local authority (to deal with their lack of support regarding Mum. They seem to be oblivious to the irony, ahem) and cc’d in Mum’s new social worker requesting that they find somewhere for Mum asap.

It’s not that I have now had to wipe faeces off of her three times in the past 12 hours, nor that we, J and I, had to get up in the middle of the night to clean up urine off of her brand new rug but it is the return of the woman who has taken out on me her frustration, her anger, her disappointment…or just because she can, for the past 19,799 days.

I have given 54 years and counting to this woman, who has only managed to be polite and calm with me for the past seven years, whilst she was living in care homes.

It now seems as though that happy-go-lucky woman was only playing nice in order to have me make an enormous fuss of her (taking her for regular teas at Fortnum’s and The Wolseley), taking her on holiday, buying her everything she could need and want, making sure that every single visit over the past 7 years was a brand new and exciting experience, even when visits were taking place 4+ times a week.

I was making memories; the kind I thought ‘real’ daughters enjoyed with their mother’s. Now those memories sicken me.

Since we brought her home, she has been incredibly nasty and spiteful. It’s the version of her that I am absolutely familiar with and mistakenly believed had been erased by dementia. It hadn’t. I believed that the dementia had addled her brain enough to make her forget how acidic she really is. It’s not just the vile things she spits at me from her suddenly mean, thin curled lips, it’s also the absolute look of sheer hatred in her eyes when she looks at me and the overhanging threat of physical violence. When I was young, it wasn’t just a threat, nor a slap on the back of the hand or on my bottom. It was hitting me so hard that I would have hand prints on me for days, or using a hairbrush or shoes…and for what?

I was never a badly behaved child. I did what I was told, I ate what was put in front of me, I said, “please” and “thank you,” and got all As and A plusses at school with no help from anyone. Instead, I was sexually abused by her boyfriend/husband and was then attacked by her when I screamed for help.

So, this morning, when she was looking at me through thinly slit, furious eyes, with drool running down her chin from hissing nasty comments at me, I decided I had had enough.

I’ve had enough before and removed myself from her and her boyfriend/husband, not having any contact for a significant time. It was always other people encouraging me to see her, “she’s your mother, she loves you, you only get one mother, yada yada yada.” I stupidly caved in thinking that the more I gave, the more likely it would be that I could build the type of ‘mother-daughter’ relationship I read about in books.

It didn’t.

So, now here I am with a demented mother, who hasn’t forgotten how to be ungrateful, unpleasant, unkind, unbelievably unendingly unhinged.

I want her gone and as soon as possible. I have requested she be moved to any suitable care home whilst a good one is sought.

I always pray for the right thing to happen.

I prayed for help in caring for Mum at home. I had dreams of improving her health and life (with diet, CBD and exercise) and ostensibly set out to share my positive progress with everyone. Sadly, it hasn’t turned out that way. However, you do have the truth and nothing but the truth. I can only believe that this is the right thing. My prayers have been answered and my gift is bigger than I could have dreamed of; I have been given my freedom. Finally.

I am now going to try to live my life and create a sense of peace and tranquility, something I have never known…and accept the generous offer of help in dealing with this humongous anvil of ever-expanding guilt that I have dragged with me from before I was born. Which reminds me of this piece of prose I completed, after being given the word ‘birth’ for inspiration many years ago.

Thanks for travelling this part of the journey with me.

Birth 

Birth and death occurred simultaneously in one great moment almost twenty-six years ago.  

Birth, for me was the beginning of great opportunities but death of the binds that were tying me physically to my mother.  Birth, for her, too, in her new found freedom.  But, most devastatingly for me death of a dependence I was long to crave.

Birth, a rejection.  Ejection from my mother’s womb. Turned out from a fortress whose moat I would never again cross.  No longer wanted, emotionally bereft; no feelings left for the foetus within its safe haven

Prematurely emitted, forced out to fend for myself.  Comfort and safety, warmth and nurturing, now to be demanded and supplied only when the cries of battle were too loud to ignore.

I was lead to believe, all of my young life, that it was my decision to be born early.  It was only my decision in as much as I chose my mother.  The more I think back and the more I am aware of my early beginnings the more I am convinced that it was she who wanted to be rid of me.  Of my dependence on her and all the physical and emotional reminders that she was no longer a child herself.

With a lump in her middle she couldn’t deny that I was a responsibility that she had created. Without me there for all the world to see she could pretend that it hadn’t happened.  For the only time in her life and mine, during pregnancy, she gave me months of undivided attention and commitment, never to be repeated through force, need or desire.

Birth was my release from her and for her a release from duties foisted upon her through a trick of nature; unlike the sea-horse my mother was the one left to gestate.

I don’t remember the physical, emotional or mental details of my emergence but that’s not important. What is important is that I was born and given the good fortune of infinite opportunities.

Copyright © 1994 Toula Mavridou-Messer 

All rights reserved.  No part of this article may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior written permission of the copyright owners.

Further Reading:

https://toulamavridoumesser.wordpress.com/2016/02/29/only-dead-on-the-inside/

Day One – Meltdown: https://toulamavridoumesser.wordpress.com/2022/03/08/day-one-meltdown/

Day Eight – To Bathe or Not to Bathe

I am keeping this blog-journal of our journey with bringing Mum home to live with us from her care home. The care she was receiving has resulted in her being fully diabetic (T2D) with an absolute refusal from the care home (backed up by the GP, who illegally (I think) have disregarded both mine and my mother’s requests for the condition to be controlled and reversed by diet. Hard to believe that any doctor would support a dreadful diet and medication rather than a few tweaks to diet but here we are. Or were.

Mum has been home for just over a week and has been eating a low carb healthy diet. For example, last night we ate grilled sea bass with an abundance of broccoli, peas and asparagus, drizzled with extra virgin olive oil, lemon juice and a tiny sprinkling of Himalayan sea salt (pink, obviously!).

We won’t know the change to Mum’s blood sugar levels until she gets tested in 3 months – 1 week. I suspect they will be normal. So, are there any visible changes? Well, thank you for asking! Yes, the biggest visible change is that the whites of Mum’s eyes are now bright white and her eyes look clear. Just over a week ago the whites were dull and her irises seemed to me to be a bit cloudy. She also looks 10+ years younger. Her skin is plump and shiny once again. And, of course, she is now taking one less medication, so hopefully her kidneys and liver feel a little less burdened.

The only downside to removing the medication and cheap bulking agents (i.e. cereal, toast, cake, biscuits that made up most of Mum’s daily food consumption) is that Mum has not pooped since we brought her home. We have added a fibre drink to her daily routine, a few prunes and apple slices, and a stool softener. If nothing happens today, we will give her some Senna and let it do its thing. Don’t worry, all of this is with the advice and assistance of our new local GP surgery who fully support the change in diet and removal of medication.

I have to confess, a part of me (a VERY LARGE part of me) is secretly (and now, not so secretly) relieved that Mum hasn’t pooped because I am going to have to wipe her clean thereafter. I have no idea how to do it nor how to do it and maintain Mum’s dignity. If she even let’s me. Which brings me on to…

To bathe or not to bathe. Or rather, not to bathe. Mum has not been bathed or showered since she came home. It was always our biggest concern and was mentioned every time we discussed bringing Mum home, with the social worker ‘team leader,’ who assured us that they would organise something suitable. As yet, we have been given a bath swivel chair – which we were not sure was going to work – and doesn’t. First of all, Mum is terrified of it. Secondly, there’s no way of getting her onto it without her compliance and she is definitely not compliant. So, they haven’t sorted it at all. Yet.

In fact, there is no training offered or given to someone bringing home an extremely vulnerable person from a care home, nor any checks made on whether the room we were preparing, was in any fit state for her.

We literally collected Mum from her care home, brought her home and not a word from Mum’s social workers to ask how any of us, whether Mum has settled and whether we need anything. That’s social care for you.

There’s also the issue of undressing Mum. She’s not having it. As soon as I try to remove her clothing, to change her from jamas to day clothes, she gets aggressive. I tried to fully undress her in the bathroom to try the bath chair and she started shaking from head to toe with fear accompanied by absolute fury. I put her jamas back on and left it at that.

So, here we are eight days in: Mum is bright eyed, constipated and one of the great unwashed.

Further reading:

https://toulamavridoumesser.wordpress.com/sharing-our-caring-bringing-mum-home/

Day One – Meltdown https://toulamavridoumesser.wordpress.com/2022/03/08/day-one-meltdown/

Background (c-PTSD/Childhood Sexual Abuse): https://toulamavridoumesser.wordpress.com/2016/02/29/only-dead-on-the-inside/

Day Seven – Is Being Eaten By Bears An Option?

My soul is exhausted.

I have to confess, I spent a while yesterday searching for cabins to buy in the US. I had no idea that they would be so expensive, but I guess there are an awful lot of people like me who need to reset their sanity button and get away from it all. Only, I know that wherever you go, your trauma goes with you.

There are no cabins that we can afford.

My reasoning was that rather than splurging money we don’t have on a trip I have to take for my survival on this planet, if we bought a little something, we would have something to sell or rent out at the end of it, thereby recouping (hopefully) some of our costs.

I will have to think of another way. There is always another way.

I was (to some extent) prepared to stick a pin in a map and go where the wind blows us (or cheap cabins exist) – a true adventure where there is no plan other than living for the day and following the path our hearts illuminate.

Now I am wondering whether we might instead look for a van, of sorts, that we can travel and ‘live’ in – although, ‘camping’ is not my thing; I don’t want to be eaten by bears, or murdered whilst I sleep.

I shall pray that something wonderful and unbelievable happens to make this mental health vacation from a lifetime of horror, possible. Perhaps Elon Musk can loan us a suitable Tesla for our trip and perhaps Holiday Inn can give us a million points to redeem against stays? I’ve worked on both Challenge Anneka and Extreme Makeover – Home Edition, making dreams come true for others, so I know that it CAN happen. We already have our National Parks pass, so all of the wonder of big open skies, mountains, lakes, nature – the wonders of the world that slow your heart rate – are all available to us. Something good will happen. I know it.

Meanwhile, the search is also on to find a wonderful place for Mum to live out the rest of her days; of which there are likely to be quite a few. She is only 77, so is still relatively young and although currently unable to hobble more than a few steps due to the condition the last care home gave her back to us in – will hopefully recover some of her strength once a specialist gets to the bottom of her foot issues.

Seven years; seven years of a happy, funny and beguiling mother. That’s all I have had. She was already at half her cognitive ability, so not truly herself but now she is back to being the mother I endured for the first 47 years of my life. Mum is unpredictable, rude, aggressive, difficult, argumentative, sharp, spiteful and she is also childlike, afraid, confused and vulnerable. Often she is polite and grateful and other times she is petulant and unaware.

From someone who appears to not know where she is, bringing her home – to her home – has triggered memories that I had no idea were still lurking ‘in there.’ Constant questions: “where is my mummy?” said in a small voice.

I realised that the truth, “she passed away, mama,” was too much for her to bear, so instead respond with, “she is at her flat in Athens.” Mum accepts that; nods her head, as if, “of course, she is!”

It’s the questions about her dead paedophile husband that I find impossible to stomach. The, “he passed away, mama,” did not work well. Mum insisted that wasn’t true, so I have tried the same route as with my grandmother, as in, “he’s gone to visit relatives in Cyprus.” Mum is suspicious about that, shaking her head as if that couldn’t possibly be true, so the question remains and gets repeated endlessly.

I don’t want to think about him. I don’t want to hear his name and I certainly don’t want to make up lies about him to comfort her, when there was no comfort from her about him. About what he did to me. About what he did to us. Ever.

I have truly done my best; given my all. I have put my needs last, always and hers first, always. Now I need to learn how to be selfish and find my ‘happy.’

James is an earth Angel, literally. He is the kindest person I have ever met and has such a deep and instinctive understanding of people and their motivations that every day is a lesson in humanity and humility, as I watch him navigate this situation. He holds me close and he holds me up. He is unwavering and he is unfazed. He is my life.

So. This morning, my day started with an email to social services letting them know that we are resuming the search for a suitable care home; one that is safe, full of life and offers appropriate care for my mother’s needs.

They have ignored our emails letting them know that we have no way to bathe Mum; and that she can’t walk more than a few steps. “It’s good to hear that your mother has settled well,” they said. Perhaps they have confused my email with another?

Perhaps they just don’t care?

I know what I think. You decide.

Further reading:

https://toulamavridoumesser.wordpress.com/2016/02/29/only-dead-on-the-inside/

https://toulamavridoumesser.wordpress.com/sharing-our-caring-bringing-mum-home/

DAY ONE MELTOWN: https://toulamavridoumesser.wordpress.com/2022/03/08/day-one-meltdown/

Day Six – Que Sera Sera

Yesterday was day six on this journey. It was also a Sunday.

Mum was either worn out from the meltdowns, or decided to have a day of rest.

We chilled, thanks to the dulcet tones of Neil Sedaka, followed swiftly by Doris Day, which rendered a sense of peacefulness over our home.

Mum also wanted to nap. A lot.

Physically, in just 6 days, Mum looks 10-15 years younger. Is it that we have taken her off one of her medications that was clearly causing her issues (Sukkarto for T2D), and instead have been feeding her a healthy low carb diet?

Or, is it that for the first time in years (probably), that Mum has been hydrated? I bought her a lovely water bottle with built-in straw, that indicates how much Mum has drunk by a certain time. It’s fantastic! Mum loves it because it is pink and see-through. She can see what is in the bottle and finds the colour happy and bright!

We haven’t yet managed to bathe Mum – we can’t get her in the bath – but have requested help from the local authority. Fingers crossed that help arrives in the next day or so.

Day Five – This Horror Makes You Think

To say that having a relative with dementia is horrific is an extremely mild version of the truth. The sheer desperation that we, as family members and loved ones, go through 24 hours a day is soul-destroying and life-swallowing. I am 100% responsible for one of the most vulnerable people on Earth and the weight of that is crushing the life out of me.

Mum’s still having her meltdowns – pretty sure it must be sundowning – and last night’s eruption was horrendous. I was going to say horrific but I have already used that word and I don’t want to dilute the strength of it, but it truly was HORRIFIC.

Screaming, shouting, repeatedly and violently rattling the front door, trying to pull it off its hinges to escape; sheer panic. The look on my mother’s face touched something so primitive in me and is breaking me. She is the most vulnerable a person can be, other than being a newborn. However, newborns are usually (apart from the few) are not left to fend for themselves, in a world that becomes increasingly impossible for them to comprehend.

As I sit next to my mother, she hears my name and thinks that it is hers. She is the only close relative that I have in this world, the woman who gave birth to me and yet she doesn’t know who I am. It’s not her fault and I am hurting in a place so deep in my psyche for her, and for me, but it doesn’t make any difference…to her.

The physical, emotional and mental decline caused by dementia is swallowing up my life along with hers.

The intense pain that is searing welts across my heart each time I look at her soft skin, her uncomprehending gaze; the fear etched onto her beautiful face. The overwhelming stress that is anchoring me to this version of a life that I abhor. The endless solitary confinement of my soul that wants to break free of the shackles of someone else’s decline. The guilt. The sticky, cloying, malodorous, deepest black, airless, suffocating guilt that never abates, regardless of what I do and how much I sacrifice to make these last years of my mother’s life less awful. They are all killing me.

Is giving up my life to make my mother’s better worth it? Up until today, I believed it was. I believed that the more I do for her, the longer she will live a quality existence, in spite of the obvious enemy eating away at her brain. But, today something happened to that belief that turned the prison warden’s key one notch in the lock towards my freedom; whether I lose years (as I have) fighting this invisible enemy on her behalf, or not – the inevitable already has its teeth submerged into Mum’s neck and is sucking away her life force and is getting mine for free.

I don’t want to leave Mum alone in a care home but I also realised today that I cannot spend these valuable years of my life spoon feeding her and wiping her bottom, when she doesn’t even know who I am to her.

It’s so hard for me to acknowledge this sudden realisation; and what I will do with that thought I do not yet know but I do know that I will try to seek the opportunity to live and be free. Do all the things that I hoped and dreamed my mother could do when this nightmare began in 2003. Mum was around the age I am now and didn’t get to make any of her dreams come true, see the world…or just live a normal mundane life.

I asked Mum today, “What is the right thing to do? Is it to live your life for yourself, or to live it for someone else’s happiness?”

“Live it for yourself, ” said Mum, true to form. That’s all she ever did whilst she could, at the expense of parenting me. I am beginning to think it’s time for me to do the same.

If only I knew how to deal with the guilt. Perhaps tomorrow will bring the answer? Or, perhaps guilt is the easiest way of carrying the grief of watching someone dying more each day.

Day Four – What a Difference a Day Makes

My c-PTSD is still off the scale but what a difference a day makes!

I woke Mum with a Charlotte’s Web CBD gummy (lemon and lime flavour), which she loved and am thrilled to say that ever since she has been extremely chilled. I know that everything can change in a moment with dementia sufferers BUT right now, Mum is wrapped up like a prawn on the sofa next to me and is dozing after eating a massive healthy (low carb) breakfast.

This time yesterday, Mum was agitated, rude, aggressive and unpleasant. Not so much today.

I also want to share this comment from a message I received from a woman I have never met in person but with whom I have commiserated and offered support on the Facebook group ‘The People’s Care Watchdog.’

After sharing my distress on the group yesterday, this lady sent me a private message with this comment, “Sorry to hear about your situation. I really do know how you feel. I thought I was in a nightmare. It’s as hard leaving them in care homes…Unless it’s anyone you trust.” Hopefully, if she sees this she won’t mind me sharing her words but it struck me with the comment ‘It’s as hard leaving them in care homes,” that that is what we are all feeling.

Even if we hadn’t started out with PTSD, this journey triggers the condition in us because we have no idea what is going on behind closed doors, with our loved ones and trust, for the most part, has been eroded by the things we can see out in the open.

This is not a journey for the feint-hearted, nor is it a journey we have chosen. Even if we choose not to be there for our loved ones, we still have to carry the weight of that decision forever more.

I will update further with details of how today pans out.

So, here’s the update that I had a feeling I would need to post. Mum has dozed for most of the day; which I suspect is the result of the calming CBD.

Now the effects have worn off, she is having a meltdown and being very angry and verbally aggressive. It’s difficult to witness and be on the receiving end of. I want to calm her, help her – but I cannot. Her brain is shrinking and a great deal of understanding and logic is impossible. It triggers my PTSD to see her panicking, knowing that I am unable to fix it. Loving her and letting her know that she is loved doesn’t seem to make a difference. If my brain was shrinking, I’m not sure that someone loving me would make a difference when the world around me was rapidly becoming impossible to understand, I was filled with terror and freefalling into a lonely abyss of terror.

Day Three – Living Nightmare

If you are wondering how day 3 is going, it’s currently the worst day so far. Mum has literally been groaning since she got up – hours of continuous moaning as if she is in the worst pain – she is refusing to do anything, eat anything, drink anything and is being extremely belligerent and aggressive. Having been beaten by her for the first 20 years of my life, this is bringing up all sorts of triggers. Add to that, my lack of sleep since she got home, thumping migraine and not even having time to sh*t = living hell. Not sure how I won this particular lottery but 54 years of an utter nightmare existence, when all I have tried to do is the right thing is making me think that doing the wrong thing might be more appealing and successful.

I feel like I am in a living nightmare that is never going to end, where everything is and has always been focused on my mother’s wellbeing whilst we have absolutely miserable lives trying to deal with it all. Please send help.

Day Two – Mixed Blessings

It’s been a day of mixed blessings. Some good and some not so…

Last night I slept with Mum in her room. When I say ‘slept,’ what I mean to say is that I lay next to her whilst she made a cacophony of sounds all night, and I also had to get up to help her ‘toilet’ twice. I barely slept, if at all and started developing a massive migraine at about 3am. Once started, they usually last me about five days – which I could obviously do without and especially this week.

Mum was full of joy when she woke up. She was aware that she now lives here and said that it was ‘a very good thing.’

We’ve had visits from an assessor to provide appropriate sensors to let us know when Mum leaves her room, so that I can return to mine and only get up as and when required (and hopefully get some semblance of sleep in between). He was personable, helpful and supportive.

We have also had a telephone consultation with Mum’s new GP surgery, who were incredible at organising an urgent District Nurse appointment for tomorrow. It was only last night, as I was giving Mum her nighttime meds, that I saw the note from the scare home that informed me that a District Nurse had been visiting Mum daily there to put dressings on sores on her feet. They are so sore that we couldn’t even walk around the block earlier. We were informed by the GP that all of this should have been set up in advance by them. What’s new?

At around 5pm, Mum started to meltdown again. I was informed by a FB friend that it could be ‘sundowning;’ an issue that afflicts those with dementia. Or, it could be low blood sugar due to her new diabetic safe diet. We will now provide a Huel chocolate shake at around 4.30pm and see if that makes a difference.

Another happening today was the delivery of a swivel bath chair. We actually need something more to get Mum in and out of the bath; namely a wet room – which would have been provided by our local authority, if our local authority wasn’t going to raze the estate on which we live to the ground at ‘some point’ – so, we have to risk Mum’s safety and my back by trying to use equipment that is causing us more stress, not less.

Also, it’s worth noting that no one from the local authority/social services has contacted us since Mum came home yesterday to find out how we are coping and if we need any support. Bearing in mind we are in this situation because of their total lack of support since we ever had dealings with them over eleven years ago, we are not surprised in the least.

Everyone is being very encouraging about what we are doing; saying that it is the right thing for Mum, and it is. But is it the right thing for us? My c-PTSD is off the scale, as it has been throughout this horrendous journey with my mother (from day 1 and counting), and yet I either give up my life and freedom to do this, or have no life because of the stress in trying to get her the care she needs. It’s a no-win situation.

I’ll update further if there’s more to add.

Over and out.