Diary: 15th March 2021 – Anticipatory Grief

I am heartbroken and for the last three days I’ve been grieving; Whilst Stephen is still physically with us, I have to accept my dear Daddio has gone 💔

I finally got to visit him at the care home on Friday and the courageous, ridiculously intelligent, hilarious and loving father I knew wasn’t there.

He doesn’t even look like him anymore and so there will be no more photos or selfies, as it’s not how I wish for him to be remembered. His magnificent brain has been destroyed by this f-king disease and in the three short months he’s been in care, it’s taken the last few pieces of him I could hold onto. I realised today, that tomorrow will make it exactly 3 years since I started this diary. I never expected to be here so quickly.

As anyone who’s experienced the heart-wrenching journey of a loved one fighting a terminal illness will know, “anticipatory grief” (as I’m told it’s called) is not really talked about. It’s so complex and currently accompanied by the deepest pain I’ve ever felt. My head hurts I’ve cried so much in the last few days.

As painful as it will be, I will of course still visit him in the coming months, as I will never abandon him. However, I know that it will be to see the lovely kind ex-serviceman, Stephen, and not my personal hero and wonderful Daddy that I miss so so much 💔

Diary: 12th December 2020 – Crisis In Caring

Do you ever wake up and think, can we just get through one day, without another crisis? I’ve felt this more often than not lately, but this morning I was so damn angry and seemingly unable to shake the feeling.

This week I started a new job after months of unemployment. A job and company I’m truly excited about. Rediscovering that alien (but sorely missed) feeling of waking up in the morning with not just a purpose, but with real passion. However, within four hours of starting this exciting new chapter, my reality came crashing down when I received a phone call from Dad’s building manager; there’s a crisis.

Two days later, it’s a call from Dad’s pharmacy; there’s another problem. The (very) rude woman on the phone is offloading at me, saying the surgery is to blame and she’s “sick of it…”. This leads to phone calls back and forth trying to mediate the situation. It’s relentless, isn’t it?

Then cut to this morning; after an intense first week at work, all I want is a Saturday morning lie-in and a bit of rest. At 8:15 am my phone rings and it’s Dad’s care team asking why there’s no medication left. “Because no one told me it was running low“, I respond. “Your team is supposed to give me 3-4 days notice!”. 

Another crisis“, I think, and the GP isn’t even open…[add a series of expletives and rants here]. So I begin a series of phone calls to the memory clinic, NHS 111, and local pharmacies trying to get an emergency supply. Luckily, I had already planned to drive to see Dad today but if I hadn’t, I would have had no choice but to drive the 40 miles each way to make sure it was resolved because guess what, there’s no one else to sort it.

And there it was: the resentment. The frustration. The anger. Of course, this is all going through your head whilst in autopilot, knowing you have no choice but just to get on with it, so those feelings exacerbate exponentially. As it turns out, a lovely pharmacist helped us and we were able to resolve it quite quickly once I got there. So off we went to our planned lunch date.

Not long after sitting down, Dad started getting a bit emotional and asking “Why do you do all these things for me? I don’t understand.

Well, that’s what daughters are here for.“, I said without thinking.

I then immediately recognised the look in his eyes; perplexed emptiness. “What do you mean? How do you know this?” he continues. “Are you sure? Did someone tell you this?“.

Shit. He has no idea what I’m talking about and to make it worse, I can’t take it back. I didn’t know what to say except: “Yes – I grew up with you“. The next 15 minutes felt like an integration; “Did we go to school together… Had I met his mum and dad?“.

Then I realise; I don’t think he even knows what a “daughter” is anymore. So, there we are, in the middle of another “crisis” but this time, there’s nothing to do and no one to call. I just have to take it, accept it, and pretend I haven’t just been crushed all over again.

On the way home, I realised that’s what makes being a carer of someone living with late(r) stage dementia so much harder; the stress, the long days, and seemly endless challenges you fight through when, at the end of it, I can’t even have a true relationship (or conversation) with *MY* Dad. 

He’s still Dad, sure; his humour is still very much on point. But our relationship has completely changed now and this year, for the first time, I know we won’t even be able to have Christmas as Father and Daughter.

I wish I could end this with some level of positivity but right now, I’m just not there. There’s a very real pain in knowing my role as Daughter has now been fully replaced as “Carer” and perhaps ‘Friend’.

As someone who would religiously go to My Dad for his advice when in a crisis, I’m missing him terribly today.