Covid-19 in a Dementia Unit

Always remember, a dementia patient is not giving you a hard time; he is having a hard time
~Bob DeMarco

He always picked on me. Graeme M. Frank* always did. At 6″2 tall, he towered over me like a mighty Goliath. He didn’t do it on purpose though. Alzheimer’s had robbed him of the joys of human interaction. Infrequently however, divine light illuminates his mind and his best sides strikes through like a bolt of lightning.

But he still picked on me. We could be attending to him with one of the carers and he would choose me as the target of his clenched fists. “You will get it!” he’d threaten but forget about it as soon as he said it. A lion’s roar.

I work in an advanced dementia unit hence Alzheimer’s disease is one of the challenging illnesses I’ve had to deal with. As intimated before, mental health nursing is not one of my strengths. I time and again rely on those I work with to hold me together.

I am the team leader of a very capable team. At any given time, I have N* and J* as my health care assistants. I focus on the nursing aspect as they focus on the intimate caring bit. That is what the papers say. However, we essentially team up every second of every 12-hour shift to offer the highest attainable quality nursing care for all our residents.

They know I identify too much with my residents. N is the chief whip of the unit. She demands thick skin from me. I try. God, how I try. Occasionally I feel so helpless as a nurse I have to go to J for cuddles. J stabilises the team. I couldn’t ask for better carers!

Take for example this fluffy Friday afternoon. Fresh as a sunny day in winter, time dragged on and Graeme did what Graeme did best; wander with purpose.

It is a phrase we use to describe patients who move from place to place. At face value, it looks aimless but the truth is, their thought process indicates that they have a purpose to the movements. It gives them something to do. You can safely encourage this in a nursing home. Quite the opposite if you’re nursing this patient at home. They may get lost.

I heard a scuffle and rushed out of the treatment room to the corridor. Greame was very agitated and pushing Hillary* away. Graeme jealously protects his territory. Hillary loves being with other people. We had not noticed Hillary walk towards Greame and hold his hand. Graeme wasn’t very pleased. Neither was Hillary. It broke my heart.

As Hillary tightly clasped my hand and walked in tandem with me to the dining room, I unsuccessfully hid the tears welling up in my eyes. N, being the hawk-eyed of the two carers wasn’t fooled.

“Catherine why are you crying?” She enquired.

I’m not sure what I said but it bordered on my feeling sorry that Graeme didn’t know why Hillary wanted to hold hands and Hillary not understanding why Graeme didn’t want to go for a walk together! I may as have well spoken in tongues.

N and J both held me in a five stars embrace. Just what the doctor prescribed. A therapeutic hug. A hug that went to a private school and had access to private tutors growing up. Hugs, friends, hugs should taste like this. I wanted to freeze this moment right here and put it in a mirrored column pedestal or in gilt-edged frames. Priceless.

Hugs are the words we utter when our mouths can’t speak.

See, both carers have considerable experience working in dementia units. You could say they have seen it all. Well, yours truly hasn’t and I’m not sure she ever will.

Graeme, apart from being ferociously territorial, picks on strangers. Especially strangers of the female gender. I was a stranger and a female; a typical low hanging fruit. It took a few months for him to get acquainted to both my face and voice. I am no longer threatening to him. In fact, he drawls a “hiya!” in a heavy Scottish accent whenever I pass him by.

Brian*, his son, nostalgically remembers his father as a family man. A true Scot. Before being admitted at this care home, he had taken care of his agarophobic wife and autistic daughter. He always looked out for them. He defended them and shielded them from the world.

With the straps of his boots, trudging from the Scotrail company to his home every other day, he looked out for them.  It came as a shock to the family when the tentacles of Alzheimer’s disease started eating at their beloved dad’s mind.

Alzheimer’s is a debilitating illness. It threatens to steal the person from themselves and from those around them. The decline in mental capacity is not only slow but sure. Medications oftentimes only slow the progress of the disease but not reverse it.

It starts differently for everyone. Forgetfulness being a classic symptom. Then a total inability to make independent day to day choices. It is a traumatic experience to watch someone you hold dear and near become a shadow of their former selves mentally speaking.

I have been here for a while now and every day I walk a mile in the shoes of my residents, it hurts my toes in several different spots.

When Graeme left for the nursing home, a void in the shape of his heart was left in that palatial home in Falkirk, Edinburgh. A void that shows in the frequency of visits from Graeme’s immediate and extended family. A void that is filled with silent understanding of what’s best at this point. A silence I could cut into and serve a chunk for breakfast.

The light in his eyes shine every time a family member visits. Everything changed with the dawn of the Covid-19 pandemic. Families had to stay away. Staffs wore Personal Protective Equipment (PPEs) and the familiar faces were buried in masks and visors. I was worried sick that his anxiety would be heightened.

To worsen a bad situation, Graeme contracted Covid-19. For a resident who moves unhindered from place to place, this was a major challenge for us. He was asymptomatic. Not even a cough. He had been diagnosed on a routine examination of all residents after one contracted it.

How they managed to get a throat and nasal swab from the able and mighty Graeme is a mystery I’m yet to unravel.

With a right-sided stoop due to scoliosis, Graeme shuffled along the unit without a care in the world. Nothing changed for him. Not even the novel Coronavirus was enough to dampen his spirits. Still he purposely rearranged furniture from one end of the corridor to the other. Still he transferred the cherry blossom-colored throw pillows from the Day Lounge to different bedrooms if they were open. Still he made a big fuss at personal care. That was our Graeme. Unbowed.

With Covid-19 restrictions, it has been a while since he last saw his family. Especially Brian, his son. Whenever he calls to find out about his Papa, we tell Graeme that Brian was on the phone for him. ” Oh aye!” He offers again in that exquisite Scottish drawl.

Last weekend however, Brian and his daughter brought toiletries and assorted chocolates for the staffs and residents in my unit. We encouraged Graeme to stand on the balcony so that they could see him.

He stood at the balcony, looked at the two and just when we thought he might actually register some recognition, he turned to a stuffed bunny that lay unattended on the couch. He picked it and went back to the Day Lounge. The perfect organiser. Always fixing everything to its place.

The memories and moments created with his family have fallen into the sofa cushions of time. So have the numberless conversations and the belly laughs together. There they all lie, in time, cataloguing the past and hopefully mapping out the future.

Time, I have learnt, does not offer any consolation to the declining mental capacity for dementia patients. Time for them is a vacuum filled with bits and pieces of a past that seems so long ago and a present that is held together in shaky ribbons and shoe strings.

I was afraid he would pick on me again. He didn’t. My soft voice, though wrapped up in a 3-ply face mask he still recognised. My eyes though hidden under a visor, still held his gaze and silently reassured him that we all were there for him.

The unforseen challenge was protecting other residents while still encouraging his ‘moving with purpose .’ How do you enforce isolation in an advanced dementia unit? What is the color of the sky in isolation and barrier nursing within Dementia Units?

N and J in my shift were integral in containing the spread of the virus. Every 30 minutes they’d walk up and down the corridor with bottles of disinfectant wiping down all surfaces. Every nook and cranny of the unit got cleaned a million and one times over. Happiness Unit*, though unhappy from semi-isolation from the other units in the care home,was not only spotless but germ-free.

It has been a while now since he tested negative. We are still working with the two metres physical distancing rule. Not for him though. Patients with declining mental capacity do not have the ability to comprehend the restrictions. The onus falls on the staffs to do it for them. For everyone’s sake.

Yesterday was special nonetheless. I was seated in a corner of the dining room nimbly working on my nursing notes. He stood at the door, gingerly holding the doorknob of the dining room where I sat (many metres away) and looked at me. He raised those bushy eyebrows as he held my gaze. I offered a smile. No reaction. I offered another. Then another one.

“Nice teeth,” he declared as he doubled up and shuffled back to the corridor. Pardon me if I’m smiling too much today. I just have to show you my nice set of teeth.

* Names of people and places have been changed to protect the identity of individuals and places. This is for confidentiality purposes.

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