Finding jam in that midlifer ‘sandwich’

The unexpected benefits of caring for a parent, a sibling, and two teens

Credit: The Design Lady @ Unsplash

I barely speak to anyone these days about my life without someone mentioning the word ‘sandwich’.  I realise being on a Noom diet might make me slightly obsessed with all things food, but I realise that they are, of course, referring to the new phenomenon that my generation are facing these days: caring for elderly parents whilst our teens are still living at home or dependent on us.

I guess I started to become ‘sandwiched’ around 3 years ago when it was clear my 57 year old brother needed support to become independent of my Mum with whom he had lived with all his life.  His ability to care for her adequately and her ability to manage his needs had become an increasing cause of stress. Yet his anxiety around living alone and lack of skills or confidence to manage his daily living meant he resisted any attempts to move out - understandably. After a bout of pneumonia that forced my mother to be hospitalised, my brother saw the urgency, and he agreed to move forward.

With my father sadly long dead and my other brother not living locally, it fell to me to help untangle their intertwined, interdependent lives. My brother needed assessing for suspected autism, ADHD and learning disabilities, finances found for a support worker, social support structures put in place, and a separate place to live. I found myself navigating the unfamiliar path of benefits and social services, autism coaches and interminable PIP forms, all the while keeping them both informed without being overwhelmed.

At the same time, my 86 yr old Mum was becoming increasingly frail and unwell, needing care supports to be put in place, whilst my own family were coming to realise their own neurodiversity with all the challenges and joys that brings (first my husband, followed by my then 16yr year old daughter and later, our younger son). 

It’s been quite a journey.

Unexpectedly, I found myself on a crash course in the benefits system, social services, wills & trusts, ASD & ADHD diagnosis, care agencies and care homes, carer’s credit, disabled bus passes and more. You name it, I had to learn about it.

I have had to sacrifice paid work and career prospects, freelancing where I can and wondering when, if ever, I’ll get back to a ‘normal’ job - or at least something that brings respect and a regular salary. 

I joked with a friend recently about how it’s not exactly a jam sandwich (or smoked salmon & cream cheese, if I had a choice).  There’s many days when it’s felt more spam than jam if I’m honest.

But then I got to thinking about how there is actually more jam in this situation than perhaps I’d given it credit.

I may have been out of paid work for chunks of time but the skillset that I’ve had to develop wouldn’t look amiss on my CV: interpersonal communication, project management, diplomacy, quick-thinking and a steady head, resourcefulness, ability to work under pressure, stamina and delegation.  All the while not forgetting those essential qualities of any carer: kindness, compassion and patience – by the bucket load.

Of course, I can’t actually put any of this on my CV,  but I’ve realised how my ‘CV of life’ has grown richer and deeper for it (along with those grey hairs and crow’s feet radiating ever deeper and wider from my tired eyes).

Up till now, I don’t think I ever really understood my brother.  As his sister, I saw him as disorganised, indecisive, argumentative, eccentric and incredibly slow to get things done. I struggled to see his many positive qualities (being a sibling!) of which there are many: he is kind, sociable, generous, hospitable, and funny. But as my husband and daughter were diagnosed and I embarked on that journey of understanding the universe that is ASD and ADHD, I started to learn how to understand him and to relate to him. Crucially, I learnt how to communicate with him in a way that didn’t get him so worked up, confused or frustrated.

Whilst gathering evidence to apply for a PIP for him, I learnt even more about why he behaves the way he does, especially after a lifetime of living with parents who didn’t understand this themselves. When he was born back in the dark ages of 1966, people had no clue about neurodiversity or how to assess someone with a learning disability. They were simply told he was dyslexic. 

In short, I’ve become more patient and more mindful of how I talk with him (slower, less information and written down where possible). I’m also careful to make sure he feels involved. This, in turn, has helped him in how he relates to me, who I’m sure he has always seen as his bossy younger sister!

And so, for the first time in my life, I feel I’m getting to understand my brother and, crucially, my compassion for him has grown. It’s about time after 54 years!

It’s also helped my brother to know that he’s not alone in his struggles.  In fact, it was my family’s diagnosis that propelled him into at last accepting our suggestion to be assessed (it took no less than 10 years).

Similarly, when applying for attendance allowance for my Mum, I discovered quite how extensive her disabilities and difficulties are on a daily basis.  I’ve always been close to her, and feel I know her well, but it's not until I started asking how often she feels pain, where and how difficult she finds it to get dressed that I realised the full extent of her challenges. 

There’s also the unexpected small joy of taking my mother away each year to a hotel by the sea for a few days. We drink G&Ts, eat at good restaurants, and revel in no agenda for a few blissful days.  I encourage her to talk about her parents and childhood, to gather anecdotes and details that my children will one day want to know.  Fully relaxed, she recalls things that I’ve never heard her share before and I realise the preciousness of taking her away from her home where stress and responsibilities stifle those memories.

To my surprise, I’ve also realised that those breaks are the first truly relaxing holidays I’ve had since before we had kids - some 20 years ago.  No one is expecting a meal to be organised, food to be put in the fridge or advice on what to do and where to go. Nor do I have to wrestle with four different agendas and sleep schedules which seriously does my head in!

Lastly, a very large dollop of jam has been that finances aren’t a struggle for my Mum meaning she can pay for private carers as she needs it. This has been a huge relief for me lately as she has paid for more hours, meaning I can become less hands on and more focused on my own family and work. And whilst it’s not ideal that I’m not earning, we can manage with just my husband’s salary, albeit without trips to the theatre or travel abroad, something I love to do. But it’s not forever. And she is able to thank me in kind, paying for those annual hotel stays, as well as with copious, heartfelt words of thanks and appreciation. 

After the life she has lived, carrying almost 40 years of heartache, stress and struggle since our family car accident in 1985, it is an absolute pleasure to help make her last years as enjoyable and comfortable as possible.

And that is the best jam by far.

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