Clare

Clare

Shadows, dreams haunt the hours
A career swiftly lost

Abandoned hobbies

Friends long fled

Travels never taken 

Health dwindled

Life curtailed

A way of life longed for, worked for, planned for – now impossible

Unchanged days. Routine is just that, engrand

Sleep a few minutes- wake – nebulize 

Sleep a few minutes- wake – nebulize 

Sleep a few minutes- wake – nebulize 

Every hour – every year – every decade

Can’t sleep

Can’t sleep

Can’t sleep

 

Give up – Start the day 

Feed, bath, change, brush hair, give drinks, measure medicines, crush tablets, give medicines, titrate oxygen, give enemas, clean up, change pads, titrate, control drugs, give chest and limb physico, suction inject, insert NG tube, oscillate, diagnose 

Talk, play, seek an activity designed to include her – fail

Go for walks – change pads, physio again, give medications, feed, give drinks, give chest and limb physio again, feed, give drinks, give medicines, change, measure more meds, 

Sing to sleep

Cuddles, Kisses and endless love

Take observations – every two hours – 12 times daily

Appointments, meetings, assessments

Hospital stays for weeks on end

two years once

Neglect the other- equally precious children, Hope they’ll understand

My life will be theirs in time to come

Governments, politicians, authorities, they know this

They plan for it, counting on us knowing the cost – silent in over paid complicity 

Performative ringing of hands – false concern on tap 

Write emails, write emails, write more emails, fill in forms

fight fight fight

Chase professionals, do their jobs for them – don’t get paid for it – just resented 

Smile tightly at blithe inanities

The incompetence, their wholesale, unaccountability,

isolation 

stasis 

My child, she’s such joy, no burden

Authorities, bureaucrats, emotional terrorists, vicious, indifference, silent threats,

Lies. Therein lies the stress, 

Relentless, layered, accumulative. 

I stopped talking to people

Who would understand ? Who would believe?

Fight fight fight

Year in decade out
Fight in the hope others won’t have to.

I’m still naïve

No longer gentle

A fury. 

The shadows linger

My dreams are old now – faded, overdue for retirement 

like me.

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Clare worked as an investigative political journalist. In her spare time, she acted, co-directed and managed an amateur theatre group, loved to dance, hike, travel, write and would read several books each week. All of this stopped when her fourth daughter (she has five!) was diagnosed with post-birth hypoxia resulting in severe brain injury, tetraplegia and extremely complex health needs requiring 24/7 nursing-level care. Clare wasn’t a nurse but had to learn the requisite clinical skills very quickly as no support was available.

Thirty-three years later, Clare has Power of Attorney for her beautiful daughter and cares for her at home alongside a team of specially-trained nurses. Having this wonderful team to help has been life-changing but only made possible by fighting two long legal battles. In the last twelve months, Clare has mostly been able to take a step back from hands-on clinical care and, save for attending to the copious administration and domestic tasks that come with highly complex clinical care, can take a more parental role. Clare also lobbies and advocates on her daughter’s and other Unpaid Carer’s behalf whenever she can.

Clare is now 64.

Chris

{media 108444} Chris is a former family carer who cared for his disabled daughter for going on 40 years with his wife and a team...