Real stories

Family values: 'Mam's carers have been a surrogate family to her during coronavirus'

My mam's name is Liliana. She is a loving mother and wife and a true friend to us all.

Mam's personality is quiet and she prefers spending time with family and friends rather than in social groups.

Family values have always been very important to her and she reared us to look after one another.

Her great love is children and it has always upset her to see children suffer in any situation. She liked to support charities that worked to improve the plight of children. Mam also has a soft spot for animals.

As a grandmother and great-grandmother, she is just the best and is cherished by her 11 grandchildren and great-grandchild.

Mam and I have always been best friends and have shared the good and the bad times in our lives. As the only other female in a family of six, we shared a close mother-daughter bond.

Mam's dementia diagnosis

Mam began to show symptoms of dementia about eight years ago at the age of 73. The initial signs were forgetfulness and repeating things.

She was diagnosed with vascular dementia by her GP and sent for brain imaging to confirm his diagnosis. Arteriosclerosis is hereditary in Mam's family; her mother, aunt and grandfather had the same condition, which we believe lead to vascular dementia.

As Mam's condition progressed from repeating herself to forgetting how to dress herself properly, and then to more serious issues like leaving appliances switched on or wandering out of the house and getting lost, we were faced with making a decision no one wanted to make.

Caring for Mam

Over the six years from Mam's initial diagnosis, my siblings and I, along with Mam's two brothers, had worked a rota to support my dad in looking after her. However, despite giving everything we had to support her at home, it wasn't enough to ensure her wellbeing or that of my dad.

At this stage, we tried home care but Mam resisted having strangers in her home and after a few months that ended. Hence we agreed as a family to look into care homes and found one that we had a good feeling about.

This is the home she is still in and it has proved to be an excellent place of care. Her carers have been a surrogate family to her in our absence due to coronavirus restrictions.

During visiting restrictions, the staff in the care home have always facilitated video calls between Mam and ourselves. However, she was not always able to focus on the small screen so it was hit and miss with these calls. The home did not facilitate screened visits.

While we couldn't visit her, I have been struggling to accept that I'm doing everything I can for my mam. I have been living under a cloud of guilt.

Visiting Mam in person

On the day of my visit, I tried to keep a positive attitude and a calm outer shell. My biggest fear was that I would cry when I saw her.

When I arrived I was happily surprised to find her calm. As I held her hands and spoke to her about everyone, she gave little smiles. I even managed to make her laugh.

Taking advantage of her calmness, I did a brief Facetime call with each of my siblings and Mam's brother so that they could see and talk to her. She smiled at them and I knew it would brighten their day to see her happy.

During our time together, I tried to create a positive and secure atmosphere and promised her I would always do my best for her.

I promised her we would try to bring her home when we could, which made her smile. Whether this is advisable (when coronavirus is no longer an issue) I'm not at all sure and something we will need professional advice on. However, if that thought put a smile on her face for just a moment then it was worth it.

Realistically I know that she probably wouldn't recognise home as the place she lived with Dad for 55 years and raised a family. Prior to going into the care home when she still lived at home, she regularly asked to go home once sundowning began.

It might sound selfish but I left Mam that day feeling a weight was lifted off me and I had confessed my guilt - the guilt of her feeling we have abandoned her - because how do you explain coronavirus and visiting restrictions to someone with a limited ability to understand and remember?

I know Mam most likely doesn't remember I sat with her and told her how much I love her but I'll cling to the hope that the feeling of love and security (evident by her smiles that day) lasted a while longer than the memory.

My hope is that it won't be too long till Mam will once again have her regular visits and be surrounded by a constant feeling of love and security. My fear is that it is a race between coronavirus and the deterioration in her dementia.

Hope is all we have right now and that's what keeps me going.

My recent visit helped me to accept that she is receiving the best care possible and that we can do no more until restrictions are fully lifted. The hope that she will once again have a constant flow of visitors is what I have to focus on now and I need to rid myself of the guilt which is slowly destroying me. This is my advice to anyone else who feels as I do.