Caring from a distance

Living with lockdown
Last updated on July 31, 2020

Throughout lockdown I have maintained phone contact with two gentlemen whose wives have dementia. Both provided care at home until the time came where they had no choice but to place their partners into residential homes. For one couple this pivotal point came shortly before lockdown; for the other it occurred during the Covid crisis. These unfortunate timings have made their separations especially difficult.

I remember how my father struggled when my mother’s dementia grew so bad that she had to go into
care, but at least he could visit as often and as long as he liked, hold her hand whilst sitting with her and kiss and hug her goodbye. All these things are denied to couples parted in a time of pandemic. For weeks these two men have relied on daily phone calls to the homes for updates on their loved ones. They have not been able to enter the same space as their wives let alone have any direct conversation or physical contact with them.

Hey! I miss you. Image created by Daniel Barreto. Submitted for United Nations Global Call Out To Creatives - help stop the spread of COVID-19.

Staff in the homes have done their best to support both husbands. For one a little comfort has been drawn from pre-arranged “visits” where he has been able to see his wife at her window. The thought of “viewing” his wife in this way, without any real contact, has proved too upsetting a prospect for the other husband, however, and he has declined similar offers. Both men agree that these brief moments are no substitute for a proper visit.

Opportunities are also provided for the couples to talk on the phone, and occasionally by Skype, but the husbands have found that these do not compare to face-to-face conversations. In one case the wife no longer recalls how to use a phone and has been totally bemused by Skype, so that her partner comes away from attempts to communicate by these methods feeling terribly saddened. He is seriously considering not trying to talk to her via these means again. The other wife is still able to hold short phone conversations and her husband talks to her briefly every day. He appreciates being able to do so, but is convinced that they could have longer and more meaningful talks if she could see him and he could keep her attention more easily. He is also missing the chance to share activities with her (such as sketching) which is something that can only be achieved when they are together and not at either end of a phone line.

As lockdown begins to ease the two care homes have started to offer appointment times for visits in person, but even this huge step forward carries far greater restrictions than in pre-Covid times. Only one visit a week (of 30 minutes in one case and 20 in the other) is possible, it has to be booked and usually occurs outdoors with strict social distancing in place. This presents particular difficulties where a partner has dementia. One of the gentlemen was quick to book a slot in order to coincide with his and his wife’s 51st wedding anniversary, but the experience proved very upsetting. His partner had deteriorated significantly over the lockdown period and arrived in a wheelchair which was parked well away from him. She remained non verbal throughout, and although he had brought photographs and a card which staff shared with her, she showed absolutely no spark of understanding. He found it very hard that he couldn’t get near enough to establish proper eye contact or to show her the pictures in a way that might have reminded her of their wedding day. The wearing of a mask meant that she probably couldn’t even tell when he was smiling at her.

The other gentleman has not yet arranged a visit although he would dearly love to do so. His wife is still aware of who he is and talks fondly of him to the staff. This very closeness has caused the home to discourage her partner from visiting! The fear is that she will not be able to resist hugging him and will get upset if not allowed to do so. He has said that he would want to hug her too and would find it incredibly hard to stay if she became distraught because they were distancing. So for now he has no choice but to stay away – a stark choice indeed.

Written by OCN volunteers and participants.

This is the sixth 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.