Carers Week 2020: Mental Health and Caring

Reflections of our Mental Health Advocate and Parent and Carer Network Member.

As a Dstl Mental Health Advocate, I joined the Parent and Carers Network hoping that I would be able to contribute and offer assistance for any network members seeking Mental Health and/or Wellbeing support. Sitting in on the first few meetings it soon became clear to me that I had in fact formerly been a carer for a number of years. As well as having two children and having been through (and still going through!) the enormous caring duties that entails, I had also been looking after my parents.

I am now sitting at my desk (and it’s a mess as I don’t employ a clear desk policy at home unfortunately!) late in the evening, contemplating just what those caring duties entailed and how best I can relate them to an audience that includes friends, work colleagues and potentially a wider audience within the Civil Service. Where do I start?

My upbringing

About here …….

I am the second youngest of five children and I consider myself extremely lucky to have grown up in a very close and supportive family. Raised on farms in Gloucestershire, Suffolk and Hampshire I have been able to run wild through the fields (I was tempted to say ‘through fields of wheat’ but someone has already done that) and woodlands of rural England. My parents were very laid back, hugely supportive of us all and always there if we needed them. That is saying something of my father who would be out the door at 06.00 and sometimes not back until nearly midnight, especially during the harvest. My Mum (or Ma) and Dad both had big personalities which I am sure was an immensely important character trait that helped them to cope with five children, three or four dogs, two or three cats and a back garden full of chickens, as well as a large farm to look after. For us it was a life full of excitement, stepping out of our front door to envelop ourselves in adventures in the rolling landscapes of the English countryside. ‘Lucky’, ‘loved and ‘thankful’ are just three of the words that spring to mind when I look back on my childhood.

My life as a carer

So like many, it snuck up on us and came as somewhat of a surprise when our parents started to get older and in need of support themselves. Reading that last sentence seems odd; naturally my ‘folks’ would get older and have to deal with everything that entails, so why would we be surprised? Here goes….

My Ma had been absent minded for some time and we would joke about her forgetting things; she would often run through our five names until one seemed to fit the child she was talking to. Sometimes that also included the names of the dogs! The absent-mindedness got worse over time and in the late 1990s, she was diagnosed with dementia. By this stage both of my parents were in their 70s, having retired to live in a bungalow, initially in Norfolk and then in Suffolk. The move to Suffolk was deemed necessary because it was closer to two of my sisters and Dad was finding it increasingly difficult to care for Ma. It was only going to get harder though as she was starting to struggle with other health issues including asthma and emphysema. We would take turns staying in the bungalow for a few days at a time to give Dad a break, encouraging him to get away and enjoy his hill walking in the Lake District, Scotland or anywhere that he could embrace the countryside – you simply cannot take the farmer out of their natural habitat for too long!

That phone call. In hindsight, a call of this nature was inevitable, but you are still never prepared for it. Ma had got up in the middle of the night, confused, tripped and banged her head. She subsequently had a stroke. We raced up to Suffolk to see her in hospital, where she lay badly bruised and utterly confused. It was at this point that my Dad let us know that Ma had in fact been diagnosed with Alzheimer’s two years before but he hadn’t wanted to concern us by passing that information on. In a rather stoic manner he explained that he felt he should have been able to cope by himself – this latest event broke him.

Ma never returned to the bungalow but instead was admitted to a care home. Dad believed that he had let her down in the worst possible way and would struggle with this for the rest of his life.

Over the ensuing years we developed a routine of visiting Ma in the home on our way to or from our visits to Dad. At every visit we could see how this awful disease was robbing my Ma of her mental capacity, her reasoning, her levels of concentration, and even her speech. Our visits would more often than not be one-way chats whilst holding her hand, with less and less interaction as time went on. It was heart-wrenching for us all and I can hardly even imagine how difficult it was for my Dad, her partner in life for nearly seventy years.

That second phone call. One very hot night in the summer of 2014 my Dad woke up lying in his garden with absolutely no idea how he had got there. After a number of tests over the next few months it was decided that he had ‘probably’ had a stroke; the doctors at Addenbrooke’s couldn’t be quite sure, but what they could confidently say was that his eye sight had been affected and he had developed vascular dementia. The latter scared him senseless as he had been watching my Ma deteriorate to the point where she could no longer speak, could not feed herself and had suffered with multiple Transient ischaemic attacks (TIA). On top of this diagnosis they had picked up a swelling in his aorta that turned out to be a thoracic aortic aneurysm. The latter was inoperable, as the doctors believed that an operation to repair his aorta would be far too risky.

That third phone call. My elder sister made the call on a Thursday night to let my middle sister and me know that Dad was in hospital with what had initially been diagnosed as a chest infection. As the hospital were about to release him he had collapsed in the chair beside his bed. We needed to make the journey from Hampshire to Cambridgeshire (Addenbrooke’s Hospital) as quickly as we could. Dad was unconscious on our arrival and we learned that the aneurysm was ‘leaking’ into his chest cavity, compressing one of his lungs. He was unlikely to survive the weekend. We took turns sitting by his bed, quietly talking to him about all things farming and how blessed we all felt at having him as our father. On November 15th 2015, just after 9pm I held my Dad’s right hand and my elder sister his left as he briefly came too as a result of a coughing spasm which then ruptured the aneurysm. He passed away minutes later.

Over the ensuing months, I engrossed myself in the machinations of probate, dealing with the will and helping my siblings with funeral arrangements. We would sell the bungalow to help pay for my Ma’s caring costs, which were very high. Numbed by everything that we were having to do we did at least appear to have a potential buyer for the bungalow. This painful part of the process seemed to be going well.

That fourth phone call. 26th April 2016. A call from my sister to let me know that she was racing over to the care home with my younger sister as my Ma had been taken ill. Fifteen minutes later my sister called again to let me know that my Mum had passed away just minutes before they had arrived.

Looking back and looking after myself

Looking back on my Mother’s passing I recognise that we were all still, to a greater or lesser extent, in a state of shock, unsure of quite how to react to Ma leaving us. I think that Alzheimer’s had robbed us of our Mother some years back and in trying to come to terms with the loss of Dad we were left struggling to deal with this awful event.  It was such a difficult time and we were all dealing with it in our own ways. Much of that involved talking to each other and our families – a lot – but beyond that we didn’t immediately look beyond our tight knit familial group.

What I now recognise, particularly in myself, is that I could have and should have sought counselling in the immediate aftermath of these closely connected and life-impacting events. My role as a Mental Health Advocate has taught me that there is so much excellent support available, both in terms of caring for family members and in caring for yourself.

Dstl’s Parents and Carers Network

The Parent and Carers network at Dstl is for employees who may be struggling with responsibilities outside of work. Our aim is to support and help our network members cope with that work-life balance. Support might be through buddying, local issues groups on our internal social media, providing advice to Line Managers, supporting HR with updates to processes, or simply connecting people to others who have been there and lived to tell the tale over a coffee. We focus on supporting carers, of any sort e.g. children, parents, partners, friends as well as supporting people hoping to become parents but struggling with infertility or IVF.

More about carers’ week and the support available

Carers Week aims to raise awareness of caring, highlighting the challenges unpaid carers face and to recognise the contribution they make to families and communities throughout the UK. It also helps people who don't think of themselves as having caring responsibilities to identify as carers and access much-needed support.

Mind, the Mental Health Charity, has published this resource which helps to explain how to cope when supporting someone else, giving practical suggestions for what you can do and where you can go for further support.

At Dstl we have our own corporate support available through the Employee Assistance Programme where our employees can carry out self-assessments to help you better understand where you might need support. I have set myself health goals and linked the site to my Strava account so that it can assess how well I am doing.

These are just a few of the online resources available to help carers, with several others listed below:

·      Mental Health Foundation – A focus on Carers;

·      Your Health in Mind – an Australian website with a page dedicated to caring for someone with a mental illness;

·      Our very own and fantastic NHS website - The Care Programme Approach (CPA) is a package of care for people with mental health problems;

·      Rethink Mental Illness - If you are a carer for someone living with mental illness it can feel difficult to support you loved one or to get the answers you might need. This section has all you need to know about looking after your loved one.