He's always been a character, like the time he sat down after work to settle in with a beer and watch some tele. He'd had this low coffee table which we used to sit around on the floor. So he was sitting on the floor and took his work boots off, placing them beside the table. Beer and glass at the ready in front of him, he cracked open the beer. Watching the TV as he slowly poured his beer, he emptied it into his glass and then announced, "shit! I've just poured my beer into my boot!" He had completely missed the glass and overpoured it into his boot, then having to empty his boot of beer and clean it out. I honestly dont think I've ever laughed so hard. That was the beginning of him realizing he needed glasses I think!
Or another time when he told us a story of how he was walking through the domain after a work conference. Walking along, minding his own business when all of a sudden a seagull flew out of nowhere. It flew smack into his chest, then hit the ground squawking and flapping around. He stood there, staring at this ridiculous bird, trying to make sense of what just happened. Looking up, he saw a groundskeeper staring at him, shaking his head, as if to say, "you don't do that to seagulls."
No, its definitely not for lack of content. Dad has some hilarious stories to tell. Or at least, he had. Things are different now. Me not writing about him is more because of my loyalty and respect for him. Dad used to read my blog religiously. He would check the blog all the time and text every so often asking if I had posted lately, in case he'd missed a new post. He was one of our biggest supporters with our kids, especially Olive, and he liked to know every little thing they were up to. I didnt want him to read what I had to say about his illness. Because dementia is fucking awful. Its cruel and heartbreaking.
And the worst moments with Dad are not when he stumbles with his words, or has another fall, or any other daily struggle. It's when he is aware that his mind is failing. When he knows he is unwell and theres not a damn thing he can do about it.
It's just over a year from his diagnosis, and Dad probably wouldn't know how to get to my blog now. Or it wouldn't even occur to him to try. And while my loyalty and respect for him are still at the highest level, I need to write about it, to try and process it somehow. Because this is so goddamn hard.
My Dad is 64. He hasn't even made it to the age of retirement yet. In hindsight, the dementia had been starting a few years prior, but we got the official diagnosis last year. Just over a year ago.
Early last year, Dad was living in his apartment. He was working. He was driving. He was visiting. He was playing music. He could write. He could talk. He could cook. He could pay bills. He could play with the kids. He could do crosswords. He could laugh.
Just over a year later and the only thing my Dad can do at the same level as then, is laugh. And laugh he does! He is so jovial. All the 'help' who meet him adore him. They all want to wrap him up and take him home! Coz he's just like a kid.
Whenever anyone hears the term dementia, they automatically think of alzheimers. Dad doesbt have alzheimers. He has another form of dementia called frontotemporal dementia. It begins as one of two variants - behavioural or language, because those are the two areas the frontotemporal lobe is responsible for. Dad has the behavioural variant. Eventually they merge together. This affects his behaviour and his speech. So for instance, he remembers everyone's name. He knows who we all are and probably who half the people reading this are! But the pathways of how to do things or just occurring to him to do them have diminished. And they continue to day by day.
Until recently, us kids have been caring for Dad and his affairs. But we had a recent reassessment (we last had one done when he was living with me last year) with the Needs Assessment Team. It's been quite confronting to say the least. We have a lot more outside help coming in now - to help him prepare food, clean etc. We've been watching and monitoring Dad's decline, and have all known he HAS declined but its not until you compare with a year ago that you realise just how quickly it has happened.
He had to stop working and driving straight away. Slowly, the other things have been taken away from him. Not by us, by this cruel disease. It's taken his ability to play music, to cook, to be artistic, to look after his house and himself. And its diminished his ability to walk and talk. All of these things worsen week by week, day by day. This last assessment told us he already qualifies for a care home.
Dads independence is no longer really. He needs assistance with most things, and we are lucky to not only have carers who come in twice a day, but my absolutely amazing sister who lives upstairs from Dad and is there day to day helping him, and organising his life. From my experience when Dad was with us last year, this is a bloody tough job. Dad being Dad makes it easy. He does what we tell him, he isnt aggressive or disagreeable. But emotionally, it is taxing. Watching the strong parent who once was, deteriorate before your eyes is so confronting. And having Dad there every day and night means my sister doesn't get a break from that. We try, of course, to do what we can where we can, but that doesnt stop the fact that this is huge for her. For us. For Dad.
Mostly, I just go with the flow with Dad and what needs to be done. The roles have reversed and we take care of him now. But when I allow myself to think just that smidge deeper, my heart aches to have my Dad back. To have one more normal conversation with him, one more normal hug, one more normal visit, one more normal phonecall. Just one more normal. But those are gone now. So I try not to think too deep. Because it literally cracks my heart when I do.
Those who know my Dad and love him, please go and visit him. I know it's hard. Believe me, we all find it hard! But so does he. So if you can rustle up the time and energy to do it, please visit. It wont be long before he changes even more x
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