The names in this article have been changed to protect privacy.
Carers up and down the country have faced some difficult decisions with the onset of coronavirus. Hard won efforts to support their loved ones at home have become far more challenging and in many cases unsustainable due to the dissipation of regular services and whilst efforts have been made to fill the gaps, sometimes a transition to a care home has been the best option to support the wellbeing of both person living with dementia and their unpaid carer. Here we follow the journey of one couple as their plans have had to change and unpack some of the issues they have been facing.
Over the course of 2019 L’s dementia had advanced and her husband (himself in his early 80s and with some health issues) was finding it increasingly difficult to manage her care. He was constantly looking for meaningful activities that she could take part in which would also give him some respite time. She attended quite a lot of events, but the only regular slot when her husband knew he could plan to do things for himself was once a week when she went to a lunch club. Finally, at the start of 2020, he gained additional respite day care slots giving him a few points in the week when he could get a break. He recently told our Our Connected Neighbourhoods volunteer: “It made a big difference just having that bit of space to myself. It made me feel more alive, although that balloon soon popped when I picked … [L] up and I had to be constantly on the watch again.”
Then Covid 19 hit and all of the respite time (some of it so new and hard won) disappeared overnight. As a carer, he really began to struggle with the ongoing demands of the role where there was little to no let up, especially at night.
“It’s just constant. I have to watch her 24/7. There’s no let up” he said, “She doesn’t always sleep well so sometimes it’s through the night as well.”
Food and mealtimes were a challenge as well with food being mixed up or thrown away, and sometimes L forgetting what she asked to eat and then eating her husband’s food leaving him frustrated. “I think I’m quite a patient man, but sometimes it’s very hard to stay that way,” he said.
Entertaining or engaging his wife was incredibly time-consuming. “I can’t get her interested in anything [e.g. doing some drawing or a jigsaw] unless I’m right there beside her,” he said. The moment I leave – say to make a meal – she packs up and then I have to worry about what she’s doing and where she’s gone.”
Eventually he reached a point where he needed to secure some more help, at least for a while to give him respite, and with help from his Dementia Advisor he began to press Social Work for help.
It was not straightforward, as weekend help was not forthcoming, and with the virus in full pandemic, few if any care homes were opening their doors to residents. “They say they’ve asked around all the homes, but none of them are taking people in because of the virus. So what would they do if I had a heart attack tomorrow? They’d have to put …[L] somewhere then.”
Eventually a place was found but at some distance and with a test for the virus before going, L was able to move into a residential care home. However, after all the pressure and challenge, the move set off a wide range of feelings and emotions in L’s husband.
It is difficult to imagine the sense of loss experienced by carers and people living with dementia who have been separated for whatever reason during lockdown. In the case of L, this couple went from an intense and challenging period of close proximity with no breaks to total separation overnight. For L’s husband there was an initial period of sadness. He was at first unable to manage to hold himself together to speak to his wife: “They keep asking if I’d like to talk to ….[L] on the phone but I’m not ready for that yet. I’d get too upset. I just get updates from the staff.” And he continued to feel that loss for many weeks, sharing with his OCN volunteer contact: “I still miss her. I miss her so much. I’ve shed a lot of tears.”
That sadness was accompanied by guilt over the decision to move her to a care setting, even though he was no longer feeling able to manage and frustration over the impact the virus has had on the couple and their ability to live well together at home – “We’ve been victims of the virus too in our own way. It took away the support I needed,” he said.
It is unsurprising that he also felt a great deal of concern for his wife and that the staff would
be able to take care of her properly, saying, “I know they can’t go out at the moment, but she does like to be outdoors. I hope they won’t forget that when things get better.”
There was also a balance of emotions with acknowledgement of the relief he now felt in being able to manage to take care of himself again: “I don’t think I realised just how stressed I was. I’m beginning to feel human again”, he explained, “I can think of me and not just …. [L] constantly.”
Finally, he has now been able to express some optimism for the future, no doubt encouraged by the gradual reducing of cases of Covid 19 in communities and care settings.
“I can see a time when all this is over when I can go and visit …. [L] and have an enjoyable morning or afternoon with her. I could sit whilst she drew me or I could draw her and I won’t be thinking ‘Oh I’ve got to get on with such and such’ or ‘how am I going to keep her occupied whilst I go and get the washing sorted?’ It will be so much better.”
Written by OCN volunteers and participants.
This is the third 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.