A Personal Note About Strokes

I originally wrote this for Instagram and Facebook but this information is too important not to share as widely as I can. I believe strongly in the importance of vulnerability and therefore want to share it with friends, colleagues, acquaintances alike:

PLEASE PLEASE READ. I’ve wondered about how to write this for a while and don’t know how, but I must, it is too important not to. 

One Sunday evening towards the end of July, I rang my mum for a chat. When she answered the phone something wasn’t right. Her speech was a little slurred and I asked if she felt OK to which she replied that yes, she was fine but had just got up from a nap. I wasn’t convinced and said that I’d call her back in a couple of minutes. I hung up and immediately searched for the symptoms of stroke, which are FAST:

Face - Any facial drooping or weakness on one side.

Arms - Weakness in one arm. Ask them to raise both arms in the air, if they can’t or cannot keep them both raised, that’s a symptom.

Speech - Slurred or confused speech.

Time - If ANY of the above are present it is Time to call for an ambulance.

I called my mum back and told her that I thought she might be having a stroke. She disagreed and refused to call an ambulance, so I called 999 from London (she was in Falmouth) and an ambulance was despatched. Later that evening I called the hospital and was told that, sure enough, my mum had suffered a stroke.

The following morning I took the train down to Cornwall and went to see her. She was a little shaken up and still slurring a little but otherwise doing pretty well, all things considered. I ended up staying down in Cornwall for two weeks while we waited for a home care team to be in place to help my mum with some short term memory issues. During that time, we sat and did crosswords together (she is a serious cryptic crossword aficionado and was teaching me - with limited success), and walked in the hospital gardens.

It was a serious wake up call that my mum, although only 74 and otherwise fairly well, was mortal and would not live forever. However, with a treatment plan in place, I felt confident that she would be able to live independently for some time to come.

On the Tuesday two weeks after her stroke, she was discharged and returned to Falmouth. We spent the afternoon walking through the town, visiting a few shops. We returned home and she started arranging the flowers I had bought her. Shortly afterwards a healthcare assistant arrived for her first visit and started explaining what would happen over the coming weeks.

As we were talking, my mum started making a sort of snoring noise even though she was awake and standing. I asked if she was OK but she looked straight through me and made no effort to respond. The healthcare assistant did the same. We sat my mum down, but now, to accompany the odd breathing, her right side went completely limp and her face drooped. She was totally unable to speak.

I called 999 and while I waited for the ambulance, realised that this one was different from the first. I could talk to her last time.

At the hospital she was given a CT scan that confirmed a major left hemisphere ischemic stroke. I left my mum with the medical team and hoped to get a few hours of sleep. I lay in bed crying, hoping desperately that my mum wasn’t scared or in pain.

When I returned in the morning I hoped that she would be back to her old self or at least awake and with it. Sadly that was definitely not the case. Barely conscious and very confused, her condition was extremely worrying. So much so the doctors spoke to me about whether or not I wanted them to resuscitate her should she need it and whether to continue treatment if her condition stayed as it was. It was something that I’d thought about in an abstract way and been presented with in films and on TV but I was not ready for it be about my mum and having to make the decisions myself. I wept. I regretted not holding my mum’s hand walking around Falmouth the day before. She might not make it and if she did, she would never be the same.

I always thought of strokes as either being ‘mild’ and it having some effect on a person’s mobility or speech, or for them to be ‘massive’ and fatal. My mum’s was massive but it wasn’t fatal.

Fast forward 6 weeks, my previously independent, cryptic crossword solving, classical music loving, avid student of psychology mum is in a care home. She has almost complete aphasia. The left side of your brain contains your language centres. Hers were almost completely destroyed by the stroke. She cannot understand anything being said to her nor can she firm coherent sentences. She cannot read or follow instructions. The part of her brain that ‘understands’ food doesn’t work, so she rarely eats or drinks as she doesn’t comprehend why she would need to. As a result she is fed by a tube directly into her stomach after she kept pulling her nasal feeding tube out. Her quality of life is near enough zero.

Why am I telling you this? For one reason. Have difficult conversations with your loved ones.

Life is short and fragile and you’ll have wished you’d said more, but that’s a difficult thing to comprehend before the time. However, one hugely important and practical thing that I implore you to do is to get Lasting Power of Attorney (LPA) setup for your parents. It has to be done by a solicitor or similar authorised person and needs to be properly registered. Without it, your life will turn into a living nightmare should the occasion arise where they lose capacity. Fortunately my mum did this for her financial affairs but not her health (there are two completely separate types) and without it, I would not be able to act on her behalf.

People can also have living wills, laying out their wishes ahead of times such as this. It is hugely beneficial when there are decisions to be made around treatment.

Please learn the stroke symptoms and please have those conversations with your loved ones. Do it now not later. I had no idea that this would happen and that morning my mum had been teaching me cryptic crosswords, by the evening she had the capacity of a one year old. Once that happens, it is too late to do anything about it.

I was going to run the Loch Ness Marathon for the @thestrokeassociation but have recently picked up a stress fracture and it’ll have to wait but I’ll do it.

I’m also establishing an annual prize for young crossword setters in my mum’s name as I know it’s the sort of thing she would love to have done. I am heartbroken that she won’t know that I’ve done it.

I’m happy to help/answer questions about the LPA or strokes in general - I’ve become something of an expert - but please please have those conversations before it’s too late.

If one person has a difficult conversation with a loved one, it will save a lot of angst and hopefully mine and my mum’s experience won’t have been for nothing.

#stroke #rebuildinglives #JillBolteTaylor #strokeawareness #lifeisshort