A long hiatus

One letter changed everything

Shortly after I published my last blog in 2017, one letter brought devastating uncertainty for both residents and staff. The (then) owners told us in writing that they were looking for a buyer for many of their homes in the North of England particularly. All the homes with a nurse on duty 24 hrs a day, what they termed “care with nursing”. Confusingly, the previous owners kept the majority of their other homes.

I had naively assumed that our previous owners would be unlikely  to sell given that most of us would need more care in the future, not less. As consumers of a service (especially nursing-funded rexidents) we were a guaranteed income stream for the organisation. After all, they’d operated this building as a residential home since the 1970’s. Many in my local community knew the home was there, but many didn’t. I was helping to raise our profile,  til everything changed. I, like others was blind-sided, and in my  case, too angry  to write  for a time.

A neccessary disclaimer

When I did write, I wanted to attempt to write with more diplomacy. This is that effort, on at least the fourth draft. I must emphasise that the following is my own personal understanding of that time and  not representative of the former or current owners of the residential home.

I did learn through a service-user consultation event that the previous owners were reinventing their organisation to be more public-facing, hence certain homes were not part of that. When I began to ask questions of interim management I was dismayed to find the decision was also motivated by the astronomical cost of long neglected repairs to the building. Again, this is my opinion and mine alone, but residents and staff were simply collateral damage of the decisions made. I was brutally honest in my replies to the consultation questions as the uncertainty was crippling. This continued for many months, leaving residents and staff in limbo. Finally, in August 2019, power transfered to the new owners.

The norm, then the storm…

At first the main difference was a change of regional and overall bosses from a different head office. At a residents meeting which families also attended, promises were made that repairs could be financed and carried out according to servayors reports. (Unfortunately, there’s little evidence of this now, but the reassurances helped at the time.)

Staffing in my home stayed the same initially, as did their pay and conditions from the previoys employer for a fixed term. Slowly, staff began to leave to other jobs or into higher education. There are staff that left years ago who I still miss. I cherish those staff who work in partnership with me to give me personalised assistance and form a good working relationship. The high turnover of staff from then on continues. Part of this is the turnover in the Care Sector in general, combined with the severe UK-wide shortage of Care Sector staff. There are many reasons for this. A subject for another day.

Our current owners have now been in situ 3 years.  Since the takeover in 2019, the home, residents and staff included have settled into a routine of sorts. Up to the present moment, I am grateful to still have a home, with the neccessary assistance, compassion and dignity the majority of the time. This is not to say that there isn’t frustrations, however. Brief examples include constanst change in agency staff filling in gaps in the staffing rota, and consequently, repition many times over of my assistance needs. Changes to suppliers, particularly, for food meant some vegan products were no longer provided. Additional dietary requirements have complicated this. The relevant staff have attempted to rectify this with little success at the time of writing. Cost cutting has happened in other areas too, as might be expected.

In writing this post, I’ve still glossed over a lot. I have no wish to wite a series of complaints. To that end there is a major positive to end this update with. Despite the difficulties of the pandemic of 2020-2021, this year, my home was awarded an overall “Good” rating by the Care Quality Commission. A notable achievement through lockdowns, ever-changing guidance and staff absence. Good ratings across the board was a pleasant and very well deserved outcome for the staff especially.

I’m greatful to still have a home and the support I need, despite the difficulties. I do my best to live as full a life as possible within my limitations. Now I’ve started writing again, it’s helping me to deal with things. Hopefully I can get my posts on a schedule once more. Till next time…

Writing

Sounds simple right?
Sit down and write.
In reality it's a fight,
head pounding,
drowning in wave after wave
of mind-numbing fatigue.

Disparate phrases don't easily segue.
Try, and try again. 
Fighting fatigue again,
fan on high, air in my face,
Music as loud as my head can take.

Some time later I awake.
Groggy, foggy, off for a coffee,
as frustration  builds.
I thought I knew my limits. 
Find a snack, 
get some fresh air.

Re-read the same piece of text.
The coffee's finally taken effect.
Just in time for bed.
Breathe oxygen  in deep, 
breathe out a prayer.

 Back to writing,
This time without fighting. 

Advent 2022

Quietly waiting

I’ve lived in an institution for 6 years now. Made my peace with it the majority of the time in a, “I know this is where I need to be” way, given my various diagnoses, known and unknown and my fluctuating level of medical need. I’m still independent spirited, but do spend a lot of time waiting for all sorts of things.

Be that medication, meals, assistance from staff with all manner of things,  waiting for phone calls or on hold, letters, the pharmacy. This doesn’t include all the time sitting still ish, or lying in bed. I like to think waiting is something I’ve become practised at, patiently, though like most people, there are times waiting is frustrating or down right hard.

If I waited to feel rested for example, that almost never happens. This is when I need to remind myself that there’s good things to wait for too. Advent, Christmas jumper/t-shirt day, Christmas Eve, Christmas Day, a meal with immediate family. Not sure what else to add to the list, but there’ll be more.

It seems like most days now it is hard to be among other residents given escalating behaviours. Waiting for these to be dealt with, much less change, it one of the very hardest things. Praying for change is a very positive action, though obviously waiting for it is hard.

Not just praying for change, but praying that Emmanuel, God with us, would make Himself known in this place of anger, resentment, lashing out, and more.Praying and waiting for these cycles of behaviour to improve, and for hearts to be change feels impossible much of the time. A changed place from when I moved in some 6 years ago.

Then I remember times God has moved in impossible situations in the past. Revealing Himself to flatmates at University, and to other friends at different times. Ways He has worked in my own life, and in the present, that He’s with me. How easily I forget this amazing truth. Activelywaiting for God in three persons to reveal Themselves afresh to me, to family and friends, and to all who find themselves reading this.

5 am again, and again

Somehow thoughts speed up,
whizzing, fizzing, spinning.
Over and over, round and round,
yet more thoughts abound.

Never forgetting, 
always regretting,
mistakes stretching back years, 
amplifying my fears,
rarely finding relrease in tears.

Fragments of memories,
barely able to pray,
thoughts stray,
no longer carefully boxed, 
running amock.

What if, when, what then?
What now, where, how?
do I write before 
my thoughts take flight?

Crabby. 
Sleep eludes me.
Again I try to pray.
Thoughts in further disary.

Writing everything but 
the most urgent,
reading everything but
books that link to my past,
a path not taken. 

Days passing ever quicker, 
lists ever longer,
desperate not to feel 
more regret.

Barely writing for half 
a decade,
suddenly can't stop
Mind on the brink
yet more thoughts fleeting,
some repeating.

Patterns formed over years,
highlighting my deepest feears.
Ugly thoughts always near, 
Not enough, smart enough, 
kind enough, clever enough.

Bad habits stick,
consistency was never a habit,
queue self-loathing,
some groaning,
am I not over this now?

Interlude

Busy on another project today that’s not for my blog. Never been the most organised being in terms of scheduled posts. Sometimes I surprise myself though. 🙂

I do have at least one poem in progress.

Thanks for understanding.

Watch this space next week for new material.

Battles

Some of us really wanna
serve, teach, help with outreach.
All our energies go on survival.
I don't know what to do. 
Do I go?

Asleep almost on arrival,
serve or swerve, 
survive or thrive?
Unbidden memories scatter,
shatter, all over my battered heart. 

Church, it hurts.
Words flow around me as I snore,
softly.
Realising my mistake, 
Up I wake,
What did I miss?

I wish it wasn't so hard 
Concentration so fleetingly 
there, but  not. Fatigue, ever present,
I would weep, but
Time I have not.

Sweeping round the bairns,
In the direction of caffeine
 and sugar, in fright i halt.
Millimeters from disaster.

I kid you not, a child lay in front of me
Same shade of gray clothing as 
the carpet on which i roll, crisis only narrowly averted. 

Need that sugar now. 
Scalding coffee gulped, 
Round I spin, in the opposite direction 
I travelled mere minutes ago.


On i roll, apologetically excusing 
my existance, as I roll onwards
Watching in despair at the forming queue.
Please, can i go first?
Sorry again. 

I must get this taxi.
Not happy. No time 
with my friends but just one driver
For all the wobbly people, depending on motors, wheels, crutches, and a kindly face,  needing space and a friendly word

Reassurance that home is near, 
for fear of lateness,
 and being labelled a nuissance.
Necessary compromise, so we can keep the
One way I get from A to B quickly.


Home. Eat or sleep, 
weep or seek
Peace, tranquillity, 
Relief that all all that effort is done,
For One. MORE.WEEK.

Hair in all the ways…

Hair  in all the ways,
 dry shampoo for days.
Run the comb through,
call it done.

Shove a cap on my head,
 just out of bed,
Feeling rough.
Why are mornings so tough?

Make mine a double shot,
extra hot,
need all the coffee.
Music on loud.

Can still hear the buzzers, 
makes me shudder.
Then I wonder,
Will they ever stop?

Back to me,
now I need a wee,
Will I ever concentrate?
Getting irate at myself,
How do I stop the voices?

On and on they chant,
so much hate, 
Begging them to abate,
What would I say to a mate?

I'd remind them to be kind,
to themselves, tell them,
"'You're trying your best"',
Find a therapist,
and get some rest.

Thoughts swirl

Barely writing for
half a decade
suddenly can't stop.
Yet more thoughts tumble fleetingly
some repeating, 
some growing, never knowing,
From whence they came.

Patterns formed over years,
highlighting my deepest fears.
Ugly thougnts always  near
Not enough. Never kind enough, strong enough, clever enough, awake enough.

Bad habits stick
Consistency was never a habit. 
Queue self loathing,
Thoughts roaming,
Sometimes i'm groaning...
Am I not over this now?

Covid Chaos

The words “COVID outbreak” surely conjure many different feelings for each of us, whether that’s scepticism, fear for  yourself or loved ones, grief and pain, or something else. Speaking personally, I’m  relieved that somehow in my nursing home we only had two major incidences combined with lots of staff absence.  As I think of the beginning of my own ordeal in May 2020, I remember the fear of the unknown and the panic of that time. Simultaneously, I feel gratitude I was not more ill than I was, and greatful for my ‘recovery’ though it took at long time.

Hospital, but not as I knew it…

 When I first took ill, there was a period of days where staff didn’t realise what was making me ill. Thankfully, ambulance personnel, and hospital staff knew exactly what it was. At this point, the only access to testing was in hospital, in an eerily deserted A and E. I will never forget the disorientating quiet, with one side dedicated to suspected covid cases, and everything else on the other.   Though few tests were available, my nursing home were desperately trying to access testing too.

My reason for admission intially was my need for oxygen, but a diagnosis of Covid pneumonia followed after a scan. I am greatful I didn’t need as long on oxygen as  I expected. I still remember how sore my throat was and my small  appetite, very rare for me. Weirdly, I never lost my sense of taste or smell. 

… and breathe

What did have professionals worried though, was my difficulties walking and breathing at the same time. Something I rarely thought about I now had to practice over and over. Chronic physical and mental symptoms I was very used to living with suddenly flared in earnest all at once, adding to my confusion. I had an extra day or two in hospital, until the Physiotherapists were satisfied I could walk relatively safely from  my bed to my ensuite once home. It didn’t matter how slowly, or how breathless I was, just that I could. That I understood, as I was desperate to be back in my carehome too.

One step at a time

I didn’t realise this then, but my recovery was only just beginning. Three  weeks of bed rest and testing positive followed. Eventually amid concern for my mental health, I was allowed to leave my room.

Weeks of slow progress followed. I was very fortunate that asthma inhalers helped with breathlessness, as they don’t work for everyone with Covid-related breathing difficulties. Weird episodes continued without an obvious cause. Managing a few extra steps one day, but struggling to sit up in bed the next. My parents reminded me my body had “taken a battering” and I needed to be patient. It was so easy to become exhausted as well.

A scan in the August showed my lungs were clear which was a relief. Stories were beginning to emerge in the media of permanent lung and/or heart damage, long-covid, ME, and all manner of unforseen complications. I still think, in the circumstances that I was fortunate.

My main struggle continued to be breathing and walking without getting breathless. Once the inhalers helped I could begin to work on my stamina. It took a year of hard work from myself and staff to help strengthen these skills. Still through , I struggled in my own way. Randomly I’d haul my weight up in my bed and be breathless. The weather was key too. Eventually I ended up with a new diagnosis of asthma on exertion. Somehow having a label on the random episodes was a relief.

Finding the funny side

I still joke that I’m allergic to tidying up, as even now I can be sat in my electric wheelchair while tidying, and still get breathless. A seemingly random list of unrelated tasks with differing levels of physical exertion have a similar effect. It’s baffling more than anything. It can be hard if not impossible to tell which diagnosis causes which symptoms… that’s a bit of a ‘rabbit hole’ I try to avoid. Instead, I’m attempting to live in the present, one day at a time. Getting back to writing is one more goal restarted. It helps to put my volatile emotions on paper. Till next time…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Here I am again, 5am.

Awake and stressing,
my brain messing
about within, without.
About this, that, the other,
Within me, turmoil,
Without me, are they better?

Thoughts scattered, 
dreams have fled
Instead, the mess 
of thoughts.
Swirl, twirl, whirl, 
around me
curl into me,
Unfurling within me, 
Here to stay.

With dread, up I get,
I forget. 
What does uninterrupted rest feel like?
Fighting my mind is unkind,
this much I know.
Here I sit in the quiet, 
and the peace, the room 
still. A rarity. 
Longing for the still, small voice.
I dont want to fight 
my unkind mind.
Instead I write, 
Hoping to find,
in my mind, some peace,
However fleeting.