A personal family story: Lockdown with Betty by Denise Noone, Freelance

Phase 1 story (Spring / Summer 2020)

How have you been able to keep a focus on what matters to people during COVID? 

Before lockdown my mum, Betty, who has dementia, was on a visit from London and we  were expecting my sister to come up and bring her back down south. It turned out my  sister’s husband was on immune suppressing drugs and it was decided that mum would  remain in Scotland with us during lockdown.  

At first, I was worried it was going to be too much because Mum needs a lot of attention. Because there are six of us already, with only one person working part-time, we decided we  could share the care. Also, to be honest I was feeling guilty about her going back down  south, she would have been near the epicentre so her staying saved me a lot of anxiety.

What have you had to do differently and what made this possible? 

We did not have any spare rooms so Betty had to share with my sixteen-year-old daughter Ruby, who found it hard sometimes. One of Mum’s symptoms is paranoia. She would think  people were plotting against her. I would deal with this with distraction, by putting the  news on or getting everyone to play cards with her.  

At tricky times Ruby would try and reason with her but there was no placating Mum and  this would upset Ruby. To dissipate and alleviate this situation my older daughter Lili would  swap with Ruby for a few days at a time.  

Our days had to be very structured for Mum. I would get up early to get a couple of family free hours and Mum would wake up later. I would bring her some breakfast and watch something on tv with her, to get her in a positive frame of mind. Mum insisted on doing  chores and she particularly enjoyed ironing. Being in lockdown there was not a lot of  ironing to be had, so the decommissioned school and work shirts came out time and time  again to be pressed. Any task we were in doing in the house would always include her in  some small way and it kept her occupied and content. 

Mum would not ask for or make herself food, so we had to make sure she ate. She could  not function very well if she was left on her own in a room for any length of time and  couldn’t see people so there was always one of us in her view. A few times we took our eye  off the ball, she would get agitated and leave the house “to walk home, I am not wanted  here!” My boys would be dispatched to persuade her to come home. 

All our efforts were made easier by lockdown because we were all available to give her the  attention she needed. 

What have you noticed that has been better? 

When mum comes to stay in normal times, the family are often off to work, school, college or socialising and the majority of  mum’s care falls to me. The most she usually stays is three weeks. I have MS and that time span is usually my limit. On this occasion, she had already been with us for weeks and then due to lockdown that extended to over 3 months. Betty has always been a sociable being and she responded well to being locked up with all of us. There was always someone to make eye contact with and banter with, which she loved.  

How did this make you feel?  

Having all my family together certainly made my life easier than it would have been and I  am grateful that they were all so patient and kind to their Nan. For me it was a pleasure to  have my children all in one place for this period of time and kind of get to know them again  because in normal times life is hectic. I am ready for them to fly again but worry about what  lies ahead for them.

What have you learned through this? 

Sometimes mum would get unreasonably cross with me and it would get my hackles up and  I would defend myself and it would get quite fraught. My daughter Lili suggested that I  should bite my lip and apologise to her for those imagined slights and it worked a treat. 

Generally, I have learnt to treat everybody more softly, it works in an obvious way with  mum but it is better for everybody and me. 

Anything else you want to tell us? 

 Looking forward to a more gentle normality

Phase 2 story (Autumn, 2020)

What has continued to help keep a focus on what matters for people during the  pandemic? 

I took care of my mum, Betty, who has dementia, with the help of my family for the first  three months of lockdown.  

I have MS and after three months I needed a break. I haven’t got a spare room, so mum  has to share with my younger daughter. So as much as I needed a break, the whole  family, especially Ruby, needed some respite from the intensity of caring for someone  with dementia.  

So my sister came up from Kent to collect mum to take her back to London. It is not ideal  because mum should be settled in one place.

Are there changes that seem to be lasting longer term and are there things that have  slid back to old ways of doing things?  

Mum was fine initially down south with my sister, but it is only my sister, her husband and  stepson in the house. They are fairly taciturn people and the way my mum’s dementia  presents is she seeks constant approval and eye contact. So, with fewer people to share  the care and give her attention she was quickly frustrated and my sister reported she  would hit out at her sometimes. She returned to Scotland after five weeks.

What difference has this made to people? 

My sister and I had begun to share care of my mother a few months before lockdown. It  became apparent she could not take care of herself after a bout in hospital due to mal nourishment. We had begun the process of getting social care involved in east London  where my mum lives. The area is not affluent and is densely populated so the service is  slow and nothing was achieved before the covid arrived.

When mum returned to Scotland for another stint with us, everyone in my household had  returned to work and school and were out of the house more often. It took me a while to  get back into the swing of things and mum’s condition had moved to another level. Her  paranoia is greater, so I had to hone my distraction skills and busy her with lots of chores  (her happy place) and ironing but finding things for her to do is a chore in itself because  her ability is limited. We can have great days with her, but she becomes antagonised at  the slightest things and recently, later in the evenings are when she is most bewildered.  

I am involved with a theatre company and they were starting a new project making short  films (in place of theatre). I had to submit a true-life story to show an interest. I had  thought that mum’s care would make it difficult to achieve this but I decided that I  needed a diversion for my head. Of course, the subject in my story was Betty and the  theatre company decided that their first wee film would be hers. I had to spend a few  days making images and shooting footage and as mum just likes being occupied, she was  very engaged with the whole process of doing tasks for the camera.

How did this make you feel?  

I was finding looking after mum intense and when she is here, I get little time to myself  and because all the family are busy, I have been missing their full attention and help with  mum, that full lockdown afforded. My own symptoms have been getting worse. I have  greater weakness on one side of my body and I found I had burning sensations at night in  my weaker leg and my walking was deteriorating.  

I realise that this situation is not tenable but during this pandemic I don’t feel we can  consider alternatives. Eventually, mum will go into care but it is not somewhere we going  to send her just now because it is not safe. 

Meantime at the end of last week, my sister came up from London to collect mum and  take her back down there for a while. My own symptoms have improved considerably in  the few days since. This is a great relief to me because I had thought the deterioration  was permanent. Getting a break is so important.

Reflecting on your experiences what have you learned? 

I have realised fully that getting frustrated and impatient with a situation only prolongs it. Betty in particular responds so well if I treat her gently & patiently. 

I have learned quite forcibly that the connection between mind and body is stronger than  I had understood before. My physical health has so improved as my stress has reduced.

What difference has it made to you to tell your story as part of this project?  

It has made me pay more attention to the dynamics within my family and it is cathartic to  get it down on paper.