As part of OCN’s response to the COVID-19 pandemic, we took a number of steps to help out where we could. One of these steps included our core group of volunteers being matched with OCN participants (people living with dementia and unpaid carers). Volunteers, with the consent of the participant, would provide a regular ‘safe and well’ phone call at intervals agreed between the two. Whilst OCN is not a direct support service, we thought this was one way we could help out. The telephone support was received well and provided emotional support. It also helped towards combatting the loneliness and isolation some people were experiencing.
One of the other benefits was our trained volunteers being in a unique position to record and document participant experience of lockdown. The following is an account provided by one of our volunteers on how they have maintained contact with OCN participants. The aim has been to provide a level of support during what has been an extremely challenging period for all concerned. The support has mainly taken the form of regular phone calls, but – as is shown in the following account – our volunteer had some additional contact with OCN participants.
As in other accounts, OCN has anonymised the people and places referred to in this blog. OCN has cleared permission to share these accounts with everyone who contributed their story. Some contributors urged OCN to “share the story’s as far and wide as possible”. OCN would like to thank all our contributors and volunteers for sharing.
For all their determination to remain cheerful and positive, all the carers I have spoken to have witnessed a marked deterioration in their loved one’s overall condition. This relates to both their mental and physical state. The experience of lockdown has clearly exacerbated this situation and brought a new level of anxiety to people who were already having difficulties in coping. The introduction of tighter restrictions on mingling and on people’s movements has led to them becoming more housebound. This, in turn, has resulted in people living with dementia becoming more apprehensive and introspective. Angus, for instance, who once undertook longish walks in the neighbourhood now confines himself to a short walk to the paper shop and back. Jim and Mary, who before lockdown had had quite a busy social schedule, including taking part in some of the conversation cafes organised by OCN, are now leading much quieter lives.
Being deprived of opportunities to meet up with friends and family is what all my couples have found one of the more distressing aspects of the last few Covid-dominated months. Having to adapt to new situations can be difficult at the best of timeS for someone living with dementia. Being told that you have to keep at a safe distance from your loved ones and people whose company you enjoy can be totally bewildering. Prior to lockdown, for example, Jim had managed by and large to maintain his happy cheerful disposition, but following lockdown this had markedly changed. Now he was becoming much more uncommunicative and inward-looking.
All those who I have been supporting over the last few months are senior citizens and during the pandemic have been classified as belonging to the ‘vulnerable’ category. Some of them also have restricted mobility and one or two are living with sometimes debilitating physical conditions. All this has placed a heavy burden on those who have taken on the role of carers. As someone who has been in regular contact with these carers, I have often been struck by the levels of selfless dedication carers have displayed and by their determination, even when sorely pressed, to count their blessings. As one carer put it to me: “I’m very grateful for what I have. And unlike members of the younger generation at least I’m not having to worry about losing my job”.
All these displays of courage and tenacity cannot hide the fact that caring for a loved one living with dementia during the pandemic can exact a heavy toll. Even the very attempt to keep in contact with the outside world via digital technology can sometimes be a source of frustration and irritation. It is perhaps no surprise therefore that some, like Sheila and Angus, have simply opted out, largely as a result of receiving insufficient digital support.
Others have familiarised themselves with the technology but have encountered problems of a different order. Mary, for instance, recounts how after lockdown she and Jim had tried to use Zoom as a way of staying connected with friends and family. It quickly became apparent however, that Jim was not taking to this new means of communication at all well. He would become very bemused about the sudden arrival of ‘on screen’ visitors in his home. By the same token, when the Zoom conversation ended, and the visitors disappeared he would go looking for them all over the house and become quite distressed when he didn’t find them. Jim experienced a similar kind of confusion following the restraints imposed on visits to the house during lockdown. Mary described an incident to me when they received a visit from their two adult sons. Knowing that their parents were shielding, the two sons had taken up position in the garden and were attempting to communicate with Mary and Jim at a safe distance. Jim, however, could simply not understand why his sons were not wanting to come into the house and was sure that there must have been some kind of dispute or disagreement. All concerned experienced this as a sad turn of affairs, especially as everybody had had such high hopes of being able to meet up in this way.
Whereas for Mary and Jim the attempt to use Zoom had unintended and negative consequences, for others it has been a much more positive experience. For Ray and Morag, for instance, it has been almost wholly positive. Most of all it has enabled them to remain in contact with folk they have got to know in ‘real-life’ situations in pre-Covid times. Ray, who is carer for his wife, has always been good at using new digital devices and this competence has stood the couple in good stead during the pandemic. The couple now link up regularly with others via Zoom or similar platforms. It’s also a source of pleasure for other participants in these Zoom conversations to see Ray and Morag happily interacting in their home environment.
Morag and Ray have managed to keep going very well in the last few months and have refused to allow themselves to be ground down by the pressures of living under lockdown. Ray himself has a long-standing medical condition and has always set great store on maintaining a good level of general fitness by regular visits to the local gym. Deprived of the opportunity to continue using the gym during lockdown, Ray has shown great initiative in setting up some exercise equipment in his garage at home. This has enabled him to continue his daily workouts.
All the couples I have been supporting over the last few months have – like the rest of us – been forced into making changes to their daily lives that have been far from easy. The difficulties they have faced in being able to access the types of help and support on which they have come to depend have placed additional burdens on them, especially on carers who have had to dig deep into their emotional and psychological resources. What is striking, however – and at the same time very humbling – is the way in which everyone, in their own way, have been able to find strength in adversity. As such, they set an admirable example for the rest of us, especially at those moments when some of us are tempted to start grumbling about how some of our freedoms are being temporarily curtailed.
Produced by OCN volunteers, partners and participants.
This is the latest in a series of blog posts reflecting on the experiences of people living with dementia, their carers and neighbourhoods during the coronavirus pandemic. The posts are a synthesis of perspectives gathered with people living with dementia in Central Scotland over the course of the Covid-19 outbreak in 2020. These have been collected by OCN volunteers and drafted collaboratively in order to build a larger picture of the impact of Covid-19 and what the changes around it have meant for people living with dementia and their carers. It is important to highlight that in most instances these are people who will have been shielding for a significant period of time. It is clear, therefore, that more must be done to improve their access to support, community and to reduce loneliness. We hope these articles will widen understanding of the issues and draw attention to what can be a hidden problem for many people.