In this week’s blog post from the Coronavirus and dementia in care homes (CoDeC) study, Gloria gives a raw and powerful account of having relatives moved to a care home during the pandemic.
5 October 2020
These are the bones
During lockdown, my father in law (92, widowed, with failing memory and mild confusion) and my mother (95, widowed, with advanced dementia) moved into care homes. Both homes are excellent; I have nothing but praise for them. My FiL appears to have thrived. My mother is dead.
Around this skeleton are choices, decisions, actions and emotions. Guilt and relief intermingled with shame and pride. Questions with no right answers.
A charmed life
I know that I have led a charmed life. A happy childhood with primary school (loved it), grammar school (hated it), polytechnic to study nursing, then off to London for a PhD. Back north to academia, the NHS and later the civil service. A husband and two sons who I love and who love me back. Parents and in-laws who lived close enough to visit weekly, and whose company we all enjoyed
Fast forward to 2015 and my father died, quite literally, in my arms. My mother moved to extra-care housing a year later. In 2019, my mother-in-law had a massive stroke at home and my husband and I moved in to care for her until her death. By 2020, both my mother (K) and my father-in-law (C) were bereft by their losses and struggling at home.
For years I wondered how we would know when the time came to look for a care home. In the end, it was easy. For my father and my mother-in-law, it was ‘never’. They lived at home, cared for by their partners, until they died. Job done.
For K and C, it was harder, but still obvious. For C, we knew it was time when he started to ring us up to tell us the phone wasn’t working. He fell a few times and needed hospital treatment. Twice-daily visits from carers weren’t enough and one day, he simply said; ‘I think you need to find me somewhere to live’. It was time.
K (who always ran to meet any problem, and liked to plan her next move well in advance) had been saying for some time that she felt she should move somewhere with more company. My brother (an elderly care psychiatrist) told us; “When home is no longer home, then we should consider a care home” and he was right. As Covid-19 lockdown advanced, K could no longer maintain her normal social life and became withdrawn and ill. We saw her turn away from life, refusing food, spending all day asleep and losing interest even in our visits.
K needed care at night that the excellent staff at her supported living could not provide, and she lost her sense of self and her sense of ‘home’. For several weeks, my siblings and I took turns to stay with her at night, supported by night sitters, but this became untenable. It was clear to all of us that she was dying, but not clear how long she might last. It was time.
Finding a care home
Normally, finding a care home involves visits. You meet the staff and they meet you. You get a feel for the building, the facilities, the way the staff interact and how the residents appear. Within a few minutes, you can tell an awful lot about whether this is the right place.
During lockdown, all you can do is talk on the phone. Choosing is reduced to ‘do they sound nice?’ or ‘did they ring back when they said they would?’ You trawl the internet looking at prospectuses and hunting for reviews, all the while aware that this is not reality.
Within a month, I had to choose two care homes. For C, my husband and I identified a small ‘Mom and Pop’ home with just 22 residents. It’s a converted house; a bit shabby, but cosy, intimate and homely. Each room is different and not all have en-suite facilities. There’s a combined lounge/dining room and all the residents sit and eat together. The phrase that struck me on their website was ‘gentle surroundings’. I loved the idea that the building and the people would come together in quiet tenderness.
For K, a few weeks later, my siblings and I chose a home less than mile away, but totally different. It’s a large home that’s part of a larger chain. On the website it’s swish and a bit glam, like a hotel. There are different wings and little mixing between them. What appealed to me was the sense of commitment to best practice and a determination to lead the way in dementia care.
K and C are different people, with different needs. I am happy with the choices we made. I’d like to say that they were involved in those choices, but they weren’t. Both of them, having made the decision to move, wanted no more to do with the selection. They were happy to hand responsibility to their children.
15 October 2020
Visiting adults in care homes during Coronavirus
Everyone knows that during lockdown you can’t visit care homes. It’s a policy with safety at its heart, but it leaves people broken and confused. Window visits, socially-distanced ‘contact’ that is no contact at all and uncounted numbers of residents who have died and been buried without their families by them. It’s brutal.
I’ve always enjoyed the company of family. I liked as well as loved my parents and in-laws. When I was told I couldn’t visit I was totally unprepared for my reaction because frankly, I was relieved.
Relief quickly turned to horror. What kind of person is glad they aren’t allowed to visit the people they love? Well now I know. It’s the kind of person who is exhausted from the responsibility of caring, who cannot bear to see their delicate plans smashed, who wishes above all that things were different. And also, the kind of person who doesn’t want to watch yet another person fade and die.
I am that kind of person.
Written by Gloria Williams