Medications 7 times through the day and night isn’t cancelled.

24-hour PEG feeds aren’t cancelled.

Hoisting and toileting isn’t cancelled.

24-hour postural care isn’t cancelled.

Personal care isn’t cancelled.

Cooking, cleaning, educating, playing, resting isn’t cancelled.

Contacting and negotiating with professionals isn’t cancelled.

Visual stimulation, sensory stimulation and active movements aren’t cancelled

Trying to keep your family safe isn’t cancelled.

But for many….carers are cancelled.

The meme flying around describing all the things that aren’t cancelled during this difficult time of lockdown – relationships, spring, laughter, hope – can be helpful to keep our perspective rounded. But this is the perspective for many families who love people with complex needs.

When physical community was cancelled, many life-lines were cancelled too.

Knowing that danger lurks in every essential, personal contact, we are juggling our family’s need for support with the reality of trying to keep our most vulnerable members safe. Weeks ago we stopped carers coming into our home and tried to go it alone. Like many other families desperate to keep their loved ones safe or those families who’s services have simply vanished until further notice.

At the moment my youngest is in bed with a high fever (he’s been banished to one room in the house and only I am entering that room). We’re now on day 2 of total isolation unless we can get a swab to confirm it isn’t Coronovirus.

My husband, a GP, is in the summer house doing telephone consultations with patients. I’m trying to do laundry, keep the house running, encourage my second son to be off screens for more than 4.6 minutes and keep my eldest, most vulnerable, son safe. The only way we are managing this is because one of my son’s carers moved in a couple of weeks ago and agreed to self-isolate with us.

I’m not sure how to express how much she means to us.

She is now doing my eldest son’s personal care (while I am potentially at risk of passing on whatever my youngest has). For this I know we are very lucky and I’m incredibly grateful.

She has left the support of her own family to love, support and keep my family safe. We wouldn’t be coping without her and yet I know most families don’t have this luxury.

The frontline staff in the NHS, essential and public services are doing an incredible job. For them I am hugely thankful.

But I am also grateful for the paid and unpaid carers who work diligently, compassionately and sacrificially, 24-hours a day BEHIND closed doors. Without a hope of respite or a day off any time soon.

They are working and caring because love and dedication has not been cancelled.

But love does not give us more hands.

Love does not give us more energy.

Love does not squash all our other emotions of anxiety, stress and fear.

Love does not give us space to rest and rejuvenate.

Love does not put more minutes in the day.

And 24-hours rarely seems to be enough.

When community was rightly cancelled to keep us all safe, it caused some families on the brink to hustle even more. Because many, who aren’t as lucky as mine, are dependent upon community to function well or quite simply stay safe.

 

*As bleak as this might sound – I’m definitely not bleak. I’m blessed and thankful every day. It is hard but hard isn’t always bad. I know there are many parent/carers with much less support than me working diligently day and night to keep their family safe and I simply want to say – I SEE YOU.