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.

Diary: 14th September 2020 – Magic

The last few weeks haven’t been easy. It’s taken large doses of self care and determination not to let the sadness of being unrecognisable to Dad allow life as I knew it grind to a halt. I’ve of course kept up visits and continued our lunches and chats – however factually inaccurate – just trying to enjoy the time but of course it’s tough pretending everything is “OK” when it’s not.

A friend happened to ask me the other day whether I’d put any further updates on this site since that day. I said I couldn’t manage it. He acknowledged that “it must be difficult to add anything else when it all feels so negative right now“. And he was right. I’ve always tried to find the positive (or worst case pragmatic) view but these past few weeks have been more of an uphill battle than any other time in this journey.

Following various updates to Dad’s Occupational Therapist, she agreed to redo his MMSE exam and the news was far more alarming than expected: he had dropped 4 points (from 11 to 7) in just 3.5 months. This put him straight into the “severe dementia” category and – I’m told – that this highly rapid progression of the disease is more than most people see in a year. Worse still, likely it’s the Covid restrictions that have impacted him, like so many others out there.

We’ve since had a broad selection of health check ups, making sure there wasn’t anything else exacerbating the dementia. When they came back clear, we had to acknowledge that this is just the disease. There wasn’t really anything that could be done, except to make sure he lived his life as best as was possible, during his remaining time here.

But tonight, for the first time in a long time, the tears streaming down my face are happy and grateful ones. Having come to accept Dad’s continued inability to identify me, I was not prepared. We’re in the the middle of conversation and suddenly:

My daughter’s on the phone“, he tells one of his care team, who happen to be visiting when I called.

I couldn’t believe what I was hearing. Shortly after he started called me “Darling” – his previously long-term pet name and said he was looking forward to seeing me in a few days. Then, the big one:

Speak soon, I love you lots“, he says as we say goodbye.

Cue hysterical tears as soon as I’ve put the phone down.

I cannot tell you how many months I’ve waited to hear those words, never really expecting to hear them again.

According to Alzheimer’s Society, someone in the later stages of dementia “may experience moments of lucidity (being aware of their situation) and some of their abilities may return temporarily.”

If this is all we get, I’m eternally grateful. I don’t think I’ve ever been so grateful for anything in my life. Every day you have to take time to appreciate the little things but this is more than I could have dreamed of at this stage.

I will hold onto this moment forever.

To me, this moment is everything.

This moment is magic.

Diary: 23rd April 2018

The appointments been moved up; it’s tomorrow and I’m dreading it in some ways but in others, we just need to know.

They’ve said they *think* it’s FTD or Alzheimer’s due to his young age and primary issues with communication. Each (and all forms of Dementia) come with their own painful paths but our doctor even said “we hope [its Alzheimer’s]” as FTD has no treatment options and would progress much faster.. I guess we shall see what diagnosis we walk out with.

But I spoke to my Dad today and I can hear (and feel) how quickly his condition is progressing. Repeating questions, no knowledge of previous conversation, regular incorrect use of words and phrases and then the announcement; he’s just purchased himself a new alarm clock, that he has spent so much time trying to set up, to no avail. I can tell he’s upset, something so simple and that you can’t even blame on the complications of modern technology. He says the “paperwork is too small for him to read”. I don’t understand why there’s paperwork… I take a second and realise what he means to say is that the buttons, to adjust the time etc, are too small;

Let me walk you through this:

  • Paperwork = provides instructions and directions on how to set up things
  • Buttons (in this context) = provide a way to adjust settings and set up said alarm clock 

This kind of decoding of conversation is becoming more common than not. 
My very smart father, knows what he means – he’s not any less intelligent – he just doesn’t necessarily have all the tools to explain it in his previously impressive vocabulary.

This is a very sad but unfortunately – I’m coming to learn – a common fact of life for those with Dementia and one that I am slowly adjusting to. 

I just try not to forget that he’s still the same – he’s still in there – something I try to remind him every day. I will remind him tomorrow, no matter what.