Shielding my mother with advanced dementia during Covid. A lesson in Humanity and Humility.

by | Jan 28, 2021 | Connected, Personal Stories

The Scene (March 2020)

Scotland, UK. Small 2-bedroomed house. Semi-rural location. Neighbours leaving food outside the front door. Family telephoning, hopeful that we were ok.

We were not unique. We were not alone in our struggle.

Globally, Covid-19 had placed us all in completely unchartered territory.

For me, however, this was undoubtedly a new challenge, even as an experienced family caregiver caring at home for my mother with advanced dementia and paralysis.

The Background

When my mother turned 79, she started to become forgetful.

At the time, I was too busy with a young son, here, there, and everywhere. I just put mum’s occasional confusion down to old age and, to be honest, didn’t think too much about it.

That soon changed. As if telling me today’s weather, one day, mum announced that she had no money to pay any bills.

Frantically, I piled her into the car. We drove straight to the bank……only to have my worst fears confirmed. 

Unknown to me, bogus callers had wiped out, not all, but a fair chunk of her savings.

Rather than get angry, I felt crushingly ashamed.

How could I have missed this? I mean, how stupid could I possibly be? How on earth did I allow this to happen?

Naturally, I blamed myself.

No, really. It was my fault.

It wasn’t as if I hadn’t been warned. Months earlier, the police had turned up at the door and said that mum had left her car parked in a “non-safe” place. 

Even then, it hadn’t clicked.

It was 2011. A month later, mum was diagnosed with combined Alzheimer’s disease and vascular dementia.

From those early days, I resolved that I would do everything within my power to make sure that she was never vulnerable again — no-one would ever do anything to harm her or treat her with anything other than the utmost respect and dignity.

Fast forward, almost ten years.

I had continued to support mum so she could remain at home. I was resolute in my decision to ensure her total and complete well-being and safety.

I had read up on the condition itself. Understood it outside out. I enrolled in university and gained a Master’s degree in dementia studies. I submitted my Ph.D. proposal. It was accepted, pending funding. Now Covid-cancelled.

As time passed, mum’s dementia progressed and was further complicated by paralysis from the waist down. 

I needed help.

Dementia Support and Care

I brought on board the help of a formal care agency, which provided full personal care four times a day — two carers for each visit.

At that time, I remember discussing my decision to take on “outside” help with one of my university tutors. We reflected on “authentic partnerships” between formal and informal care at home.

I recall saying: “Yes, I finally managed to get the new agency to work to a good partnership.”

She smiled. 

I was bewildered as to why. It was only later that I realised it had come across to her as me beating the agency into submission until they agreed with my views on how my mother’s care should be handled.

She wasn’t far wrong.

The Onset of Covid-19 Pandemic

In March of 2020, we went into our first lockdown in the UK.

In her ninetieth year, with advanced dementia, paralysed, and bedridden, my mother was definitely in the high vulnerability group.

I duly stopped all formal care from coming into the house. I did all of my mother’s personal care myself, determined to ensure my mother was kept as safe as possible and virus-free.

After six weeks (and only because of the sheer emotional and physical exhaustion), I relented on this decision and allowed the care team back into the house.

How did I know if letting the carers back in would be the right thing to do? Although they complied fully with the recommended PPE, how did I know the carers were 100% safe? Was I putting my mum’s (and my) health at risk?

I couldn’t have been more wrong.

Revelations Amidst Crisis

Shortly after the care team resumed their duties, my mother became seriously ill. Vomiting, high fever, limp, and lethargic. The local Covid test team arrived within 24 hours.

We would know the results in 48 hours.

During this time, unknown to them whether or not my mother (or me for that matter) had Covid-19, these young carers attended my mother’s needs day and night. 

Under-paid and under-valued, they left the comfort and safety of their own homes to head out and face uncertainty on a daily basis.

Every single one of them was aware of the enormous risks to themselves and their own families. Not only were they caring for another human being at a time of their complete vulnerability, but also at a time of their own personal vulnerability too.

Did that make them stop?

Did it make them call in sick?

Did they refuse to come to my mother’s aid?

No.

Not for one minute.

Even though they had no guarantee that they could control the outcome of their own well-being, they attended to their duties.

They didn’t do it because they had some magic wand that would somehow miraculously stop the virus.

They didn’t do it because the work they carried out would cure the person in their care.

They didn’t do it because it was a member of their own family.

No.

They did it out of pure grit and determination to help another family get through it.

Nothing more.

Nothing less.

Just that.

To help us get through it.

Covid mask PPE

Fortunately, and to everyone’s extreme relief, and after sleepless nights, we received a negative result on our Covid-19 tests.

Lessons Learned

Humanity has certainly seen other life-changing events but nothing quite on the scale of Covid-19.

No other pandemic has struck us quite like it. Every corner of the globe, every continent, city, town, race, culture, creed has been impacted.

Lives have been turned upside down.

Society’s insatiable need for consumerism and materialism stopped dead in its track.

In its place, a return to basics has triumphed.

For me, this has been a huge lesson in both gratitude and humility.

And it has taught me that communities around the world are, indeed, full of such angels. They come in all shapes and sizes.

Coronavirus has given them a chance to come to the surface and make themselves known.

It is only through this huge change in our lives that we can fully appreciate that they have actually been there all along.

And for that, I am truly grateful.

Dementia Support

On a global level, Covid is a catastrophe, reflected in the deaths of two million people at the time of writing and untold fear in the rest of us. We have been thrown into a world where we are forced to face the fragility of our own lives. Yet this small-scale, single experience of one family caregiver at home — a tiny speck in the whole big scheme of worldly goings-on — speaks volumes.

Sadly, on 29th October 2020, mum peacefully passed away, at home, with me at her side. It was not Covid related.

The virus will eventually dissipate, but this IMMERSION in compassion and dedication, witnessed by me while caring at home for mum, will last a lifetime. I am so grateful to have been party to it.

For me, it is a lesson I will embrace and cherish forever.

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