Dementia in the time of a pandemic

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Below, a granddaughter describes her grandfather’s experiences of caring for her grandmother, who is living with Alzheimer’s disease, during the COVID-19 pandemic.

It started with a trip to Germany for my uncle Andrew’s wedding. My grandmother, Sue who I call Nanny, insisted she made curtains for Andrew’s attic apartment during the days preceding. She measured up the square window, calculating the measurements in her head, but she couldn’t remember the figures. She recalculated them four times. Andrew gazed at her in confusion thinking: Mum is always so sharp and concise, what’s going on?

That wasn’t the only problem my uncle noticed in Nanny’s behaviour, whom he hadn’t seen for two years. Every afternoon she’d repeatedly ask, “What are we doing tomorrow?”. He would respond saying, “Mum, I mentioned that to you this morning, do you not remember?” “Did you?” she would question. She had no idea.

My grandfather Bill, who I call Papa, has been married to Nanny for 55 years. He hadn’t recognised a change in Nanny until Andrew mentioned it. Upon their return to Australia, they were referred to a specialist who listened to Nanny’s history, and performed a clinical examination and an MRI scan. She was diagnosed with Alzheimer’s disease in 2011, at 67 years old and this is where my Papa’s journey as a carer began.

Fortunately, due to Nanny’s early diagnosis, her medication significantly slowed the progression of the disease. But by three months ago, at the same time as the peak of the COVID-19 outbreak in Australia, her deterioration had become drastic.

The current unprecedented crisis has brought numerous challenges for everyone. Yet, many of these challenges cannot compare to the way the pandemic has affected people living with dementia and their primary carers. People with dementia are some of the most vulnerable in society, placing them in the high-risk category for COVID-19. The rapid nature of the pandemic has generated further uncertainty for those with dementia, as well as their carers, heightening their vulnerability. On top of this, my Papa is 82 years old, meaning he also falls into the high-risk bracket. This double whammy represents only some of the difficulties that Papa is currently facing, as he worries about his own state of mental and physical health and that of Nanny’s.

Social isolation is one of the most profound issues that people with Alzheimer’s disease experience. Nanny mentions to Papa many times that she feels she is locked in a cage. “She keeps saying how she doesn’t get out anymore,” Papa said. Prior to lockdown, they would often visit my Aunty Nicole at a weekend, who lives near them. One Sunday, they went to buy some caramel tarts before their visit. “I went and ordered four, but she said five so I paid for five,” Papa said. “I then went to get some milk without her, and when I came back to the bakery she had bought nine.”

My Papa is the gentlest, most patient man I know. I’ve never seen him angry and he never argues. So, they left with nine tarts for three people. “It’s very difficult to take her shopping now,” he said. Thanks to the Woolworths elderly hour each morning, he can quickly sneak down while she’s still asleep. “That’s been an advantage of coronavirus,” he said. However, on one occasion he couldn’t make it that early, and so he left her at home. “I was away for about an hour and a half,” Papa told me. “And when I came back, I couldn’t find her.” As he looked all through the house, Papa’s calming, gentle nature began to turn into fear. “I found her outside, sitting on the ground and crying behind the shed,” he said. Papa calmed Nanny down, brought her back inside and made sure she was alright. “Now I’ve got to be careful when I go out to constantly call her at home.”

Many people believe Alzheimer’s disease is a disease where you lose your memory. Unfortunately, it’s so much more than that. Not only is Nanny losing her memory, but her mind is becoming vividly perplexed.

People with dementia are isolated already, and now in the time of coronavirus being physically isolated at home shrinks their worlds even further.

COVID-19 restrictions on social groups have meant carers cannot attend their usual Dementia Australia support groups. My Papa is a frequent attendee of Dementia Australia’s educational and social groups, along with my mum Kate and aunt Nicole. Even with restrictions lifted, these may not return in their physical format for some time. Although local face-to-face services had stopped due to the pandemic, Dementia Australia councillors and online help sheets remained available.

The slightest social interaction can make the day of someone with dementia that little bit better. For my Nanny, every Thursday afternoon a female carer from would visit her for three hours and take her out. She would always complain about going out, but she thoroughly enjoyed it when she did. “Coronavirus has made it a lot harder for Sue, by not being able to go out anymore,” Papa said. “She gets very lonely at times; she craves more female company.”

On a cool November night in 1963, 450 young adults twisted and jived to folk rock music beating off the Yarralumla Woolshed walls in Canberra. This was the night my grandparents met. They were married two years later. Papa joined the Commonwealth Development Bank in 1968, until he became a rural financial councillor in 1995, which he believes gave him sufficient training and experience that now helps him care for Nanny. I asked him how he’s finding being a carer. “Oh, it doesn’t worry me,” he replies. This is a testament to his kind-hearted character. “I suppose it’s in my make-up, I don’t get stressed and I have a lot of patience … you’ve got to have a lot of patience,” he reiterated. “What it’s done is brought us closer together.” His own private valuation and farm consulting business always meant he worked at night, so Nanny was often on her own. “It’s good now. We’re both together all the time. That’s a positive about it.”

In 2015, they moved from their home of 23 years into a retirement village. It was closer to my family, so we could help Papa more. Unfortunately, this meant Nanny lost her close friends. She misses them greatly and wants to move home, which is impossible for them to do.

For Nanny, Alzheimer’s disease has particularly affected her creative ability. Embroidery and sewing are now tasks she’s incapable of, which is especially challenging for her as someone who once taught others her passion. “That was the first big effect of the Alzheimer’s disease. She was very, very good at embroidery,” Papa said. She was also an incredible cook. I can still feel the warmth of her kitchen where she made her famous quiche.

As a carer of someone with dementia, it’s vital to follow a routine and provide them with tasks they’re able to do. “We have a routine and that works well,” Papa said. Although COVID-19 has disrupted their ability to go out, they still walk their dog Ruby within the retirement village, do jigsaw puzzles and listen to classical music while she colours in. Colouring is very calming and distracting. It allows her mind to switch off, and concentrate on the present. There was a time where her medication was making her aggressive, snapping for no reason. But now, a change in the dosage has had a calming effect. “She’s really mellow and doesn’t get cross at all,” he says. And when she’s happy, he’s happy. 

They say laughter is the best medicine. Well, one thing my Nanny hasn’t lost yet is her sense of humour. I guess that’s what gets my family and I through the pain, as we view her actions in a light-hearted way. She’s even humanised the disease, so whenever she forgets our names we blame it on ‘Al’ and laugh it off. We’re fortunate that we all live close by, so we can continually create special, joyful memories with her. However, as her progression advances, it is taking a harsh toll particularly on my uncle Andrew who lives in Germany with his wife and two little boys. “It really saddens me that I’m missing out on precious moments with her,” Andrew says. Coronavirus stopped them from visiting in August, as they normally come twice each year.

“This whole coronavirus situation, mum deteriorating, and living away, I’ve been having moments of being sad,” Andrew said. They were considering moving back to Australia last year. “We should’ve come back. And now we’re locked here.” Luckily thanks to FaceTime they’re able to chat regularly. “It reassures me that she has a really loving, caring family support network to look after her,” he said. “I’m especially grateful for my sisters, Kate and Nicole, who are obviously doing a fantastic job of supporting Mum and Dad.” During these difficult times, they really have been amazing.

If there’s one thing I’ve learnt from having a grandma with Alzheimer’s disease, it’s the importance of getting an early diagnosis. The earlier the treatment, the earlier the assistance, the better. Papa said, “My advice is, if you think there’s something wrong, there’s no harm in checking with your GP. It’s definitely worthwhile.”

“As a carer, it is my role to look after Sue to the best of my ability,” Papa tells me. “We were married in an era when one of the vows was ‘for better or worse’. She would do the same for me if the situation was reversed.” Their love is so powerful. Nanny still tells me how much she loves Papa and she hopes one day I will marry someone like her Bill. I’m so lucky to call them my grandparents. Sometimes I cry myself to sleep thinking about the day she won’t recognise me. But I know, deep down, our loved ones are never totally lost to us.

- Isabelle Plasto