I'm seeing the word 'dementia' around a lot lately. Terry Pratchett had a form of it. There's a film out with Julianne Moore called 'Still Alice' based on a book of the same name all about early onset dementia and Jenny Downham's new book out this fall includes a character with dementia. I really like the fact that more story lines in books and film are happening to include this illness and that it brings more awareness and attention to dementia and I'm obviously heartbroken over Terry Pratchett's death. But at the same time, it's been hard for me.
Some of you may already know this, but I had been talking to some people recently who didn't know. And I realised that sometimes I just feel like everyone should know everything I'm thinking and feeling without me ever having to verbalise those things. But of course you're not all mind readers.
My dad has dementia. I found out just over a year ago and it's been the hardest year of my life. My dad is only 67 and he lives in Oregon. Thankfully my dad is being cared for full-time by my brother. Both my dad and brother have lots of support and my dad is being taken care of to the best of everybody's ability. Doctors, nurses, psychiatrists, support workers, relief carers as well as family and friends are around to help. This makes me feel infinitely better knowing that all is as well as can be.
But it's very difficult to be so far away from someone I care about when they're poorly. I don't like not knowing immediately of any changes, I don't like being powerless to help. And it's unbearably sad to see my dad succumb to this cruel and horrible disease. There's nothing I can do.
I've talked about my feelings towards my dad's declining health to several people. Dementia is something that sadly quite a few of us have experience with and it's been nice to share some of the harder aspects of this disease with friends and family, especially those with personal experience. It doesn't feel so heavy when the burden is placed on more shoulders. And also I don't feel so alone in my feelings.
The progression of my dad's dementia has been quicker than I'd have liked. But then, I don't think anyone can fully prepare anyway for how unbelievably cruel dementia can be and this will always have ripped my heart out. This past year has been a series of big and small heart-breaks. I've cried endless amounts of tears at my dad's losses and of mine. I've cried about the indignity and unfairness of it all, I've cried about the decline of his quality of life and about all I will miss out on and what my children will miss out on and I cry for all the opportunities that will be lost to all of us. Sometimes I wake up in the middle of night and think of all the time I wasted and all the times I took for granted that my dad would just always be there.
And at the same time, I'm trying so desperately to hold onto what I still have and to hold onto the great memories with my dad that I have. Dementia does not define my dad. Nor does it take away from his achievements in life and the good that he has done. In some ways I feel like I'm mourning him while he still lives and that too makes me sad.
I feel constantly emotional and I burst into tears on a fairly regular basis. Oftentimes I find that I can't really concentrate on many things and that's okay. My boys have accepted the near-constant hugs I give them and they seem to get that they help me in some small way. I call my dad often, just to hear his voice sometimes and I cry at the end of each and every phone call no matter if it was a 'good' day or not.
Things are hard right now and I think it unlikely to get any better. But I'm happy that I have such amazing and supportive family and friends and that I have books and this blog to help me through this.