The Home (True Life Experience)

Firstly, I want to say that I know this post is a long one because I wanted to share my experience in full. I hope you can manage to find the time to read it. It would be much appreciated.

Over the last six years, I’ve shared several posts about my dearly-loved late Mum. I wrote at the time she had her stroke, and then, a couple of years later, I wrote a post called THE MISSING MUM YEARS. It explained how, because of my disability, I could not access my Mum’s house, and Mum couldn’t leave there because of her severe agoraphobia, so we didn’t see each other for several years. It was heartbreaking.

It was only a few weeks after Mum’s stroke that she finally left the hospital and went to stay in a stroke rehabilitation unit, where she had her own room, daily physiotherapy and a television. There was wheelchair access to the unit, so I could finally see her regularly. She was, understandably, becoming depressed there because she’d always been so active and was mowing the lawn two weeks before her stroke. Now, she had no movement down her left side and became increasingly frustrated. It was awful to see my Mum like that. She spent three months there before my sisters and I had to decide whether Mum could return to her house as she wished.  It was impossible. Mum had lived in a big Victorian terraced house with many stairs, which she just would have been able to manage.

We had many meetings with the hospital staff and the social workers there and finally concluded that Mum would need to go into a care home. It was decided that she would come to a home near me, given that my sisters all worked and lived too far away. I went on the search to find a suitable place, all the time knowing that Mum wasn’t happy about leaving her home after being there for decades. I spent several weeks visiting care homes, but none were suitable.

Finally, I found one called The Lodge. The lovely manager showed me around. I noticed many elderly and disabled residents, some asleep in chairs, some watching TV, and some happily participating in craft activities and bingo. The manager took me to the room that would be Mum’s. I really wanted her room to overlook the garden at the back, but because of the urgency of the situation, the only room they had had a view of the neighbouring house’s roof and a few weeds growing out of the paving down the side of the house.

Her room was almost bare, apart from a bed and a wardrobe. Some faded pictures hung on the walls, and some artificial flowers in a jug on the dressing table. The manager explained that Mum could bring any of her belongings, like pictures, photos, ornaments etc., to make the room more homely. I tried to imagine Mum there, knowing she would hate anywhere I could have found her. She wanted her independence back, but that couldn’t happen.

I felt so guilty because my disability and having no car meant that I was limited in choices of care homes. I would be the only member of my family who would be able to visit Mum regularly. This home had, at least, very kind and caring staff. I went back a couple more times to make sure I thought it would be suitable, knowing full well that Mum would hate being in any home. It was heartbreaking to have to make that choice on my own. A moving-in date was set for the 10th of January, 2017, one day after Mum’s birthday.

When I next visited the stroke unit, I told Mum all about it, ensuring I pointed out all the positive aspects and tried to help her come to terms with her upcoming move. She wasn’t happy, but I felt I had no choice. I would have loved her to come to live with me, but the practicalities made this impossible. She was so unhappy, and it broke my heart to see her this way. A couple of days later, she caught a cold that went to her chest and caused an infection. Then, it developed into pneumonia, meaning she had to return to the city’s main hospital. I saw her frequently, but she wasn’t at all well. My sisters and other family visited her; one sister flew over from Australia. She wasn’t really aware of what was going on, but now I imagine this is such a common scenario; families all flocking around their loved ones’ beds. I can’t help but wonder if she knew why we were there.

By the evening, the family had gone home, leaving just Mum and me. The ward sister allowed me to stay late, so I sat at Mum’s bedside, talking quietly and holding her hand. I sat with her for hours, talking to her and wondering if she could hear me as it wasn’t evident. A nurse came along to check Mum’s sats and said Mum’s oxygen levels were up a bit, and she seemed more alert. I was so relieved at the thought of Mum pulling through this horrible illness.

When I finally got home, feeling a bit more positive, I thought I would be able to see a lot of Mum now that she would live within my wheelchair-driving distance. I felt a little more reassured about the future.

And then, came the next morning and the phone rang very early. I hesitated before picking it up. As soon as I heard the sister’s voice, I knew it would be bad news. She spoke softly as she said my Mum had passed away about half an hour ago. I was devastated and put the phone down with tears streaming down my face. As the oldest daughter, I had the job of informing the rest of the family.

Looking back now, I’m almost sure that Mum had lost the will to live because of not being able to go back to her beloved home and having to go into a care facility. It was the 30th of December 2016, and only a few days before she was due to move to the home. I truly believe now that it was a blessing that she left us then rather than go into this care facility. She’d always been such a positive, independent woman, and this was her way of escaping the reality of her future.

My biggest regret that haunts me to this day is that Mum died alone in hospital with no one to hold her hand as she slipped away. I just can’t come to terms with this. Perhaps, I will do in time.

RIP, My precious and so much-loved Mum, 30/12/16


(I was prompted to write this piece after reading a post from Cindy Georgakas. Thanks, Cindy xx)

Image source Google Images.




An Alternate New Year’s Day

I know it’s New Year, and much joy abounds
but I’m full of despair, and it’s really profound
I’m trying to enter into the spirit of things
but I know this week is carrying the sting

Last night, bells rang, and glasses were clinked
I sat here alone, and all I could think
was the fear inside of me is here to stay
It filled me with utter and complete dismay

At Christmas time, I had my family here
and just for a while, it allayed all my fears
The children were great; I was thankful to see
Then, darkness descended, crippling me

I’m trying to hang on to a morsel of hope
when the whole of me is fighting to cope
I feel like my world will collapse forever
as my therapy ends; our relationship severed

I’ve written a letter to say thank you so much
I’m longing for a hug or a gentle touch
I know it’s unlikely; it’s not meant to be
Boundaries are there for Chris* and for me

I’m dreading Wednesday coming this week
I can’t see a future, not even a peek
My body is shaking; my head full of fear
The feeling of grief rises up to appear.


* Chris is my therapist/counsellor (until Wednesday)




NOTE: Forgive me a while if I can’t read your writing
I love you all, but I’m tired of the fighting
.

(Photo by Danil Aksenov on Unsplash)

Dear Unknown Counsellor

Many of you will know that my counselling with Chris is ending on the 4th of January, which I’m terrified about. I would normally be there this afternoon and again next week, but the counselling agency is, understandably, closed for two weeks for the Christmas holidays and New Year. The best way I can cope with the absence of my session today is to write, so I thought I’d write a simple poem for my new, as yet unknown counsellor.


Dear Unknown Counsellor,

I’m devastated and so upset
to be away from Chris
I’ve fallen into the darkness
and straight into the abyss

I’ve no idea when I’ll meet you
Apparently, there’s a queue
Otherwise known as a waiting list
How long? I wish I knew

I do hope that we’ll get on
and in you, I’ll learn to trust
I hope you’ll understand my truths
and not view me with disgust

I write a lot of poetry
and dabble with some ‘art’
It’s just how I express myself
pouring out the whole of my heart

I have a problem with anger
I can’t get it off my chest
I can’t scream into a pillow
although I’ve tried my best

I hope I get to meet you soon
I’m scared out here all alone
I’ve been so lucky to have Chris
and the care that she has shown

*Please take away the ticking
of the therapy room’s clock
It reminds me of the horror room
and the door with the bolted lock

My heart is already broken in two
I have one more week; then, the end
I hope my words are acceptable
and these thoughts that I have penned

Where do I begin with you?
Do I have to start over again?
I think I could talk forever
dispelling this huge weight of pain.

* See previous poem The Passage of Time

(Photo by engin akyurt on Unsplash)

The Rope

Trying to be more upbeat
But just so full of grief
Wanting to be hopeful
My joy stolen by the thief

Started off my journal now
Complete with gratitude
Trying to turn a corner
While battling low mood

Firing all my engines
In the hope of rising up
Searching positivity
In a half-empty cup

Try smiling in the mirror
No one grinning back
Seeing all the wretchedness
While watching life unpack

Searching out life’s colours
Standing in the sun
It’s dark before its time
Again the night has come

It’s hard to keep on going
A battle just to cope
Is there really any point
Holding on to the rope?

Photo by Carson Greenhalgh on Unsplash




Scarred

(Image source – Phoebe Kay – Pinterest)

NOTE:
Just to reassure my readers that I don’t self-harm anymore. Unfortunately, I have scars that will never go away, which I have to live with for the rest of my life. It’s not easy – I carry a lot of shame for them, although I appreciate that was my way of surviving the intensity of the agony at that time. My scars are sadly worse than those in the image. I get judged by strangers who stare sometimes. It makes me want the ground to open up and swallow me. I can’t say I’m never tempted to do it again at times when I’m desperate, but I know that I won’t. I owe it to myself, my children and my ever-curious grandchildren. I have a tattoo across some of my scars – it says, “THIS TOO SHALL PASS,” and I know it will in time.

I want to heal and my writing is my way of beginning that journey. Thank you for bearing with me and supporting me with my recent outpourings of grief.

Tramlines embedded

permanent reminders

in soft, yielding flesh

disguising the pain of existence

~~~

The beginning of the slippery slope

the agonising journey

following tracks

side by side by side by side

~~~

Ensuring her instruments

gleaming in the moonlight

spotless from the flame

as she attacks with ferocity

~~~

Pearls of crimson gathering

on her lily-white skin

offering relief

from the shame and guilt

~~~

Never speaking of his sin

holding it all within

brain freeze

a blade on the skin

~~~

Silenced with threats and blame

memories, flashbacks abound

cutting the evil and torture out

of the time when cries went unheard

~~~

Child of her child’s curiosity

she tells of a fall on broken glass

submerging her truths

hoping the child’s thoughts will pass

~~~

No surrender of life or sanity

She needs no permission to write

expressing her pain in words

she’s not giving up on the fight.


On the Death of Our Queen

Her Majesty Queen Elizabeth II – 1926 – 2022

As a UK citizen, the death of our Queen came as quite a shock yesterday afternoon. Naïve, perhaps, given her age. I should have expected it, but somehow, because it was only three days ago, when she was pictured smiling whilst greeting and welcoming our new Prime Minister, Liz Truss, I was, for a while, lulled into a false sense of security. I’m not a fan of Liz Truss at all, but I didn’t envy her having to come up with a speech within two hours of the Queen’s death.

I’m not a staunch royalist, but I have a lot of respect for the royal family despite all the difficulties various family members have encountered over recent years. After all, they may be royals, but underneath the surface, they are just human beings and as fallible as the rest of us.

I have never known another King or Queen to be on the throne; it’s going to take some getting used to saying King Charles; I keep going to say Prince Charles. I’m sure I’m not the only one who feels the same.

Some of you may know (and perhaps, disapprove; not that I need approval), but I’m a member of Extinction Rebellion (XR), as I’m passionate about taking action against climate change and getting our government to act like it’s the emergency that it is. However, I’m not going into a political debate here. There was due to be an XR festival in London this weekend. I was going to go, which would have been a real challenge as it meant a journey to Hyde Park via one overground train, one underground train and two buses – all in my wheelchair, Alfie. I was determined to take part, though. Obviously, under the sad circumstances, it would not have been respectful for this to continue to take place; apart from which, Hyde Park is one of the royal parks, so that deemed it even more inappropriate. Of course, rebels were disappointed as an awful lot of work had gone into the planning and organising the event. I’m sure it will be rescheduled for a later date.

Anyhow, that’s all I wanted to say. I very much feel for the royal family in their grief as the UK enters a period of mourning. Naturally, not everyone feels the same; some people on a local neighbourhood website have been downright disrespectful. Is that really necessary, I ask myself? No, I think not. If they don’t have anything kind to say, then I believe, under the circumstances, they should keep quiet. Why is it necessary to be so rude, albeit everyone is entitled to their opinions? So, now the UK has entered a new era. I wonder what changes will be made now that Charles is King.

My deepest condolences and respect to the royal family.
RIP Queen Elizabeth II.

The Missing Mum Years

My childhood home

This is my dear late Mum’s house as it stands now. It was my childhood home until I married at twenty years of age and moved out. I’ve been reminiscing about this house over the last couple of days. One of my sisters had been back to visit there recently. Although she advised me against it, I asked her to share her photo with me. Big mistake! Huge mistake, in fact. It’s no longer how I remember it. Gone is the beautiful orange door (not that it’s visible in this picture) – it’s been replaced by a dull grey. The window frames have all been painted stark white over the original orange. Orange was Mum’s favourite colour. The steps outside are also not visible in this photo. The neat box hedge has completely overgrown, as has the glorious pink azalea shrub. I feel so sad. I shouldn’t have asked to see this photo. I should have known it would be different now, six years after losing my Mum. I still miss her so much. I always will.

The steps at the front of the house were a barrier for me for the last four years before Mum passed away. Being a wheelchair user now, there was no way I could climb them to get into the house. To make matters worse, Mum was severely agoraphobic, which meant she couldn’t leave there. It meant that we didn’t see each other for all that time. It broke my heart (and hers). We spoke on the phone a lot, especially towards the end. I would call two or three times a day to check she was okay. She mainly was as fit as a fiddle … until she had her stroke. Before that happened, she would vigorously mow the grass, raking it up, digging and planting flowers and tomatoes.

Those last four years were so painful. I didn’t feel sorry myself; I never did, but I felt angry and frustrated about my disability stopping me from seeing her. It was hard to come to terms with, and we missed each other terribly. The only time I got to see her in those last years was when, towards the end, she was admitted to hospital after her stroke. Hospitals are nearly always accessible. She was never the same after that happened. I wrote a post about this at the time. You can read about it at https://elliethompson.uk/2016/11/26/grief-without-death/.

I’m glad I can’t see the inside of the house; it must be so different now, and it would only upset me further. The kitchen was always my favourite room. The kitchen units were orange, as was her one-person teapot, which sat permanently on the side waiting to be filled. She loved her cups of tea and her toast and marmalade, which she’d have for breakfast every morning. After we lost Mum, there were all the usual formalities to arrange; the funeral, the interment, the house to sort out etc. My sisters came from various parts of the country to deal with all this, but I had no choice, being unable to go up those damn steps. My sisters were very kindly involving me as much as possible by taking pictures of everything, so I could decide what I’d like to have. I chose Mum’s little orange teapot. It reminded me so much of her.

Mum’s orange teapot sitting comfortably on my kitchen windowsill

I have a tradition now. Every year, on Mum’s birthday and on Mother’s Day, I take myself off to a quaint tea shop in my city. I order myself a pot of tea (I usually drink coffee) and some toast and marmalade. Sometimes, I order a slice of cake – Mum always enjoyed her cake. Having recently bought the loveliest card I could find in John Lewis, I sit for a couple of hours and write to her. I write it as a conversation between us, just as if she were there with me, drinking tea and eating toast or cake. It makes me feel closer to her at those times. I wish she were still here to join me. But, however much I write, it’ll never make up for those four years when I couldn’t see her. I missed so much of her later life. I think I’ll always miss her – the pain doesn’t lessen. Perhaps, it will in time.

TEA AND CAKE

Image result for tea and cake

Today is Mum’s birthday … or, perhaps, I should say, ‘it was Mum’s birthday’. As most of you know, I lost my dear Mum a year ago. It’s been hard; very hard at times. I’ve been trying to heal from my pain, but grief is no respecter of time. Some people get over it in a couple of years, some less, but many more never.

I wasn’t sure what to do today. I wanted to do something special in honour of Mum’s birthday. I finally decided to go to a favourite café of mine to have tea and cake because that’s what she would have been doing at teatime today. It’s a quaint place with lace tablecloths under glass tops, sepia photographs on the walls, brass kettles on old-fashioned cake stands and waitress service as opposed to the usual queue up and help yourself.

I asked for a pot of tea, as opposed to a mug or cup as Mum always, always drank her favourite ‘tipple’ poured from the pot. I’m a great coffee drinker whenever I get the opportunity. It wakes me and my tastebuds up and makes me feel almost human, especially in the mornings. I never usually drink tea –  But, Mum always drank it, but never coffee. Actually, tea’s not bad – quite refreshing really. I chose a piece of carrot cake, one of my favourites, and Mum’s too, and she would have liked this one as it was homemade. She much preferred ‘the real thing’ as opposed to shop-bought ones.

I’d bought a birthday card, strange though it may seem. Perhaps, to buy a card for someone who is no longer here, in body at least, could be seen as rather odd. I feel Mum is here with me in spirit though and especially today. I sat in the café for an hour, writing my words as if I were talking to her. I can’t send it, of course, but I shall keep it with the rest of the items I have that I was able to keep after she passed away. I thought she would approve of me sitting there, having tea and cake and I told her I loved her and missed her so much. I said that I wish she were here with me. And I did.

As I write this in the evening, I am missing that phone call to say, ‘Happy Birthday, Mum’. I realise that she’s not coming back, and they’ll be no more birthdays or Christmases. In fact, they’ll be no more days at all with my Mum, at least not in this life as I know it, but maybe in the next. I hope so.

Happy Birthday, Mum x

MY FORGET-ME-NOT SHED

Image result for a blue shed

I’m aware that I’ve been away since the middle of July (or thereabouts), so that’s nearly four months which must be the longest I’ve ever been away from my blog for. A lot has happened in my life during that time.

Ten-and-a-half months have passed since I lost my beautiful Mum. That time hasn’t been like I would have expected it to be. I haven’t been able to grieve. Strangely, and somewhat disconcertingly, I haven’t been able to cry either. I still cannot look at my Mum in any of the photos that I have. This isn’t how I expected grief to be. However, I am aware that everybody grieves in their own way and in their own time. Maybe, the time isn’t right for me yet.

As for other goings-on in my life, they have been more positive. Some of you may remember that my care regime was about change drastically with new carers coming into place and old ones going. I’m pleased to say that it has all worked out far better than I could have imagined.

I was also at the beginning of having a lot of work done on my house too. This has been a prolonged process, but I am getting there gradually. My bedroom is finished and is now a haven of peace and calm in which to sleep. The new shed has been built in the garden, that is, after being ripped-off by builders who I, eventually, sent packing, and consequently, employed new ones who have done a great job.)  The shed is painted a delightful shade of forget-me-not blue (at least, I think it’s delightful – I can’t speak for the neighbours).

The next and most significant project is adapting and renewing my twenty-five-year-old kitchen. This, I’m most excited about. It’s going to have lowered worktops, a new lower hob and a sink, all of which will be accessible to me in my manual wheelchair. The work is due to start in about two weeks. I’m currently at the stage where I and my carers are frantically sorting through cupboards and drawers with the intention of clearing out everything we haven’t used in the last two years, (that includes packaged food in the units that are well past their sell-by date!) I can’t wait for the new kitchen to be installed, although I’m not eager to face all the mess and disruption. However, as they say, “you can’t make an omelette without breaking eggs”)

Well, I think that’s just about a relatively accurate round-up of what’s going on in my life at the moment. I promise I’ll try to catch up on some of your blogs as soon as I can, and I really will try not to leave it another four months until I pop into WordPress again. Thanks for sticking with me through my absence.

 

MOVING FORWARD – THE PASSAGE OF TIME AND BIRTHDAY CAKE

Image result for Steampunk Clock

Why an image of a clock to begin this post with? This is because it is actually a good depiction of my feelings and where I’ve been at for some time. Life has felt rather surreal during this last year. The clock face also shows the passage of time I have been through over the last few months.

At last, I’m beginning to feel like I’m getting back to normal after my Mum became ill, had a stroke, and I finally lost her only five months ago (almost to the day). There was the funeral to get through (and all that encompassed) and now, we are dealing with probate, Mum’s will and the sale of our family home after spending my first twenty years of life there.

However, as far as my psychiatric health in concerned, I’m feeling brighter which is good (and about time too). I am now on different and new medication which, in the last week has begun to help improve my state of mind, and I’m sleeping so much better which makes a great difference to how I feel during the day. The severe anxiety attacks have also lessened which is a huge relief.

The many cogs in this clock also represent changes in a more positive way … slowly … as time has ticked by and the wheels have been turning, my relationship with my son has improved, and we have become closer which means I have more contact with my two beautiful grandchildren, Josh and Lily who are a delight to me. I have definitely become closer to my sisters, particularly the one who lives the furthest away from me. We may be separated by many miles but are hearts are inextricably linked and always will be.

The recent passage of time, like each cog, has been whirring, clicking and ticking by slowly but steadily. A lot else has changed in that time too. My eldest granddaughter has now turned eleven and will be going up to senior school in September, and my youngest granddaughter will be starting primary school at the age of four-and-a-half (she seems too young). Where has the time gone? Am I really old enough to have a granddaughter in senior school? Goodness! I must be older than I think! I’m definitely older in years than I feel and I am fortunate enough to be told by several people that I don’t look my age. However, I am reluctantly coming up to ‘a biggy’; a big ‘0’ birthday in three month’s time (which I’m trying to ignore) … ugh! How am I going to get all my candles on one cake?!

Image result for Birthday Cake with Many Candles

In addition, I would like to say thank you to my dearest friends here at WordPress who have stuck by me through thick and thin over the last year or so – it can’t have been easy at times. Their blogs have kept my head above water some of that time by distracting me with their diversity, interest, humour and compassion. So, shout out to Bun at https://bunkaryudo.wordpress.com/ and Mick at https://mickcanning.co/ and Carol anne of https://therapybits.com/. Also, thank you to any of you who may have called in or dropped by my blog and hung around with support and kind words too. Love to you all, Ellie xxx