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…