Leigh’s story – Carers Week 2020

After feeling unwell for many months, Leigh’s mother, 52, was eventually diagnosed with Multiple System Atrophy, a progressive neurodegenerative disorder, in July last year.

Prior to her diagnosis, Leigh, 32, had been supporting her mother and this care has now increased. She is also a full time carer for her 14-year-old son who has a life-limiting illness.

Here, Leigh tell us a bit about her experience of caring for her loved ones, the extra challenges they have faced due to coronavirus, and the support the family have received from St Barnabas House.

“My mother and I weren’t close when I was growing up, but thankfully long before her diagnosis we’d grown so much closer. It was a huge blow when we went to the doctors and were told that her condition was incurable.

We were referred to St Barnabas House a few months after her diagnosis. Since she first began to show symptoms I’ve done everything I can to support her. The hardest part is not the practicalities of helping her, but that we have no idea how much time we have left before the disease takes her away from us.

I help her with anything she needs and go to all her doctor’s appointments – her doctors often call me and explain things as it can be overwhelming for her, or she may forget what they have said. I complete any paperwork, sort financial forms and drive her everywhere she needs to go. My nana and my six-year-old brother also live with my mother, so I help to look after them too. I deal with my nana’s medical issues and speak with her doctors. My son and I live an hour’s drive away, so there’s a lot of traveling involved!

Since coronavirus, both our households have had to shield completely. We’ve been told by the specialists we cannot care for my mother or son if we’ve not been fully shielded as well – the risk of infecting them is too great otherwise. It’s challenging, none of us have been able to go out or see other people.

There are lots of extra measures we’ve had to implement, as well as an overwhelming feeling of pressure to make sure we keep my son and my mother shielded and ensure they do not catch the virus. It might sound excessive to someone who is not in our situation, but even the thought of getting a food delivery worries me as I have to wipe it all down to make sure there’s no risk of infection entering the home.

We have tried to focus on positive things to get us through, but we’ve also had some of these stripped from us. One of my mother’s only wishes after finding out her diagnosis was to go on one final holiday with all of her family. Our holiday has now been cancelled due to Covid-19 and we have no idea when, or even if, we will be able to grant her that wish now. It is a very difficult and upsetting situation. It’s hard enough to have a family member with a terminal illness without the added obstacles, pressures and fears that this pandemic has inadvertently created for families in our position.

A lot of people say to me, “I don’t know how you do it” or, “you do too much”, but I don’t see it like that; I have never seen the things I do as a burden. Whilst my son does need a very high level of support, I am his mother and so of course I would do these things for him without hesitation. I don’t really think of myself as being a carer for my mother, she’s my mother and she’s always looked after me, so why wouldn’t I be there when she needs my help?

One of the positives that I try to focus on is that mother and I spend more time together now, so it has brought us closer. By helping her with all that I can, I’m doing something practical which makes me feel less helpless. This is important to me as her illness is incurable, so there isn’t a lot that can be done medically. In order for me to get through this I need to know I am doing all I can for her. I don’t want her to be left without, even though the illness will take her from us, she still deserves to have the very best care.
Since our referral to St Barnabas House, we haven’t needed to access the full range of services, although we know they’re there for us, when we need them. However, the emotional support my son and little brother have been receiving from the hospice’s Family Services team has been a massive weight lifted from our shoulders.

Maria, one of the social workers, has spent a lot of time with the boys and they love her. She’s been helping to explain mother’s illness to them, which is something that we’ve really struggled with.

At the moment, she’s helping us build up to telling the boys about the seriousness of my mother’s condition by introducing them to ideas around change and using picture books to explain what Multiple System Atrophy is. They have a video call coming up with her soon which they think is very exciting!

If I’m honest, it’s taken me a while to reach out for support personally as I’ve been so focused on everyone else, but now I think I’d like to talk to someone at the hospice who will hopefully understand as they work with lots of carers. It’s nice to know that St Barnabas are there for the rest of the family as well as my mother.

I think one of the hardest things about being a full time carer is that I don’t have people in my life who I can talk with who can understand what I am feeling, or the restrictions life as a carer imposes. I’ve lost a lot of friends as I can’t meet up with them or spend time with them because I need to look after my son or help my mother or nana. I don’t have leisure time and people struggle to understand, so maintaining friendships is almost impossible.

Personally, I would like to see more awareness and support out there for carers. Particularly when it comes to having to fight for things that you need to make your relatives life, or indeed your own life easier. It’s hard enough when you’re upset that someone you love has a terminal illness, or in fact any type of illness, without having to fight for the basic needs that they are supposedly legally entitled to. Moving forward, I’m hopeful that St Barnabas will be able to support us practically with some of these hurdles to ensure my mother continues to get the best possible care and support as her illness progresses.

I’d like more people to realise that hospice care is about so much more than someone dying. Originally, I had that impression myself and was against my mother being referred as I felt it was too early. As we’ve now discovered, that is not the case at all. St Barnabas support you with such a wide range of services and fully help not just the person who is unwell, but also their family. I would encourage anyone who is unsure to speak with the hospice, it really will make such a difference to your family.”