Nursing Home Dweller

In Recognition of a Lasting Legacy

Rebecca J Armstrong‘s column in the ipaper titled This Hero Died 25 years ago But He Has changed Our Lives (Monday 16/10/17) discussing marriage, being a carer, and her husband Nick’s life changing neurological disability, was of particular relevance to me. Like Nick, I also have lived in a home that bears Leonard Cheshire’s name, since spring 2016. I first heard of the man himself, and the homes which he founded when my then NHS social worker was looking for a suitable respite placement for me. This was complicated because, although I have a neurological disability, I don’t have learning difficulties. In fact, I was living in my adopted home town having completed a masters degree in Disability Studies there. I was also relatively young, being in my early thirties, but living with ever more complex physical and mental health needs. A placement was found, in a Leonard Cheshire home some 40 minutes drive from where I’d been living semi independently for almost 7 years. It didn’t even cross my mind that I may not return, desperately hoping a break from the relentless stress was all that was needed.

A Hesitant Beginning

I arrived on a lunchtime in Spring 2016, feeling utterly terrified, and completely in the dark about what to expect. For the first few days, I crammed in more sleep than I had in weeks. I quickly found things to joke about with care staff, though I don’t remember what now. The whole week was and is still a blur. One standout moment was the realisation that without more care than local funding was willing or able to give, I would struggle to cope when [if] I went home. Accidents of both bowel and bladder were happening frequently, exacerbated by extreme fatigue and chronic pain. I was, and still am, unable to empty my ostomy bag reliably (without dropping it, or without noticing it had overfilled to bursting point). I’d tried countless ostomy products, but only two products at that time accommodated my unusually large stoma, neither satisfactory given the constraints of my disability.

I’ve been brought up to face life head on, so at the end of the week was honest with the then manager about my predicament. After some discussion, he said if I decided to stay there was an en suite free, meaning all my medical and/or physical care needs, bed days, and all could be met in a contained space, reducing infection risk. Being young, and determined to see the positive and humorous side to life as often as possible despite my circumstances, were a plus for the home… A conversation with my NHS social worker, and a hasty visit from my parents that weekend, preceded the funding application… approved in record time! I moved in permanently, into my new room three days after finishing the respite placement. My needs did present staff with new challenges, too, a good thing in advancing training and development. The move did however have a catastrophic effect on me.

Loss, Life and Living

JD at Beechwood May 17
Portrait photo of myself, snapped by my Mum, 5 months ago, in the nursing home where I live.

Adjusting has been harder than I’d ever imagined it would be, partly because I’m still adjusting now. The loss of independence, fragile though it was, the loss of dreams, the psychological hit of living in care so young, sometimes still feeling misunderstood as my needs vary dramatically day to day. I’m clean and cared for physically though mental health training was lacking… which I helped to combat by sharing with staff the effects of pain on mood, reactive depression, and loss, through sharing my story. Staffing shortages at present are making life harder for residents though I’m hopeful of this being resolved in the next few months. Being young, I still want to feel as though I’m truly living, not content to simply let life drift past me. Still searching for ways of doing this within my constraints, or perhaps in spite of them. When mentally ‘well’ I have much spirit and gumption to rise to a challenge, much like the person who founded the place I’m slowly learning to call ‘home’.

White text on a bringht blue background. Text reads: The only one who can tell you you can't win is you and you don't have to listen." ~~ Jessica Ennis. Under the text it reads: How are you feeling today? With several weather-related options to choose, from rain to sunshine.

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?

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.

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…

On Hosting and Hospitality

My old flat (apartment) was my safe haven from the world, my place to hide. The urgency with which I’d roll in from outside, heaving a sigh of relief, the peace swaddling me, silence surrounding me. I could chose when to break the silence with voices, be it tele, radio, Skype calls to friends or family. At other times, after days, and sometimes weeks of confinement, the walls would close in, silence swallowing me, my mind protesting the peace, longing for someone, anyone, to brighten the place with their friendship, stories, or news.

Anyone, that is, but the not-so welcome ones: Doctors, nurses, carers, healthcare assistants, delivery drivers carrying in parcels or shopping. I’d often feel torn between a varying measure of gratitude for the work the did but resentful of my need for their presence, my mind, and/ or my body screaming for quietness and rest. Oh I’d try, I’d really try.  By my nature, I really want to like people, and I want them to like me. Did I learn some heart lessons? Absolutely. Did I let as much wash over me as I should? No way. The latter, I’m still learning, but I learnt so much about people management, over the four (or perhaps more) years I needed increasing levels of support.

I met so many people this way, whether I wanted to or not. Oftentimes, I made firm friends with people, at least for the time I needed them, popping in and out of my life, A sizeable majority would start off great, but eventually get too comy and familiar, nearly forgetting their professional role. Until they’d leave their place of work, for somewhere new and I’d start again, Over, and over, and over, and over, and over again.

To be hospitable, welcoming, is a skill I lacked in at first, but I practiced over and over again, not just with the not-so-welcome ones. For all the ones I resisted, responded, reacted to, there were friends aplenty… each a gift from God. On the squishy sofa sat so many bottoms, others reclined, lounged, relaxed, often with a beverage to hand, and a snack or three. My safe haven became theirs. A place of prayer, bringing their needs, others needs, and my own before our Heavenly Father. These are precious memories.

Rarer times still, I played host, an unfamiliar role at best. Obsessing over the menu, the shopping, the cooking… disorganised chaos ensued… but I never recall ordering takeaway due to inedible food. Occasionally the food would be very late, a ‘simple’ menu anything but. Daring something to go wrong, but willing everything to be unreasonably perfect. Name after name of people with which I once shared my life but now lost touch, life having taken over. Minutes and hours of time spent with people eating, talking, laughing, sharing, my favourite ways to spend my time, to value, appreciate, love people. The very aims of good hospitality… It really is priceless and value-full. Time I’ll never get back that could not have been better spent.


via Daily Prompt: Hospitality