It’s take a lot of energy when you lose someone.
My uncle was diagnosed with Pick’s Disease (frontotemporal dementia) and Motor Neurone. It took him a year and half of suffering until he slipped away in his sleep. It started in August of 2015. When he came home from New York it was like he had a stroke – he was slurring his words and wasn’t able to speak properly. I remember him calling me into the kitchen to tell me. I really didn’t think it was too bad, “there is rehab and occupational therapists that can help” I tried to comfort him and myself. I had no clue what was coming next. He went back to New York and came back to Ireland in April when he could only say maybe five or so words. This was hard to deal with but we all did deal with it, so did he. The progression from April 2016 to January 2017 was incredible and ferocious and extreme. Nothing stayed the same for very long. There were shifts in the house and shifts in everyone’s morale and emotions. Mike struggled with the dementia side, his behaviour changed and he got frustrated but never mad. In reality, we were so lucky, he was so content. As time progressed so did his symptoms. He soon choked on food because the muscles in his throats couldn’t work as they should. Then that turned to only eating soup, which turned to only drinking milk which turned to not eating. He was so big his whole life to see him as practically a skeleton was hard. It was difficult to watch someone you love just waste away and there was nothing to be done. Near the end he was unrecognisable in appearance and demeanour but there were moments that he was himself. They were fleeting unfortunately.
Mike was always so caring, he put everyone first. I often think of the day we flew to New York to visit him. My sister had fainted on arrival so she was a bit worse for wear. The very next day he brought us to Carlo’s Bakery in Hoboken (Cake Boss). It was the hottest recorded day for some time (I think it was 114F). He brought us into CVS, got us water and fans and he stood with us for two hours in that heat. I’m surprised my sister didn’t faint for a second time. When we got in the door the cashier asked him what he wanted. He replied “a birthday cake”, she asked to who will she make it out to when he replied “I’m buying it aren’t I? ‘Happy Birthday to me’.”
The hardest part about losing someone is not the death, it’s that they were here and there are constant reminders of that. Four weeks ago my uncle was alive and that thought blows my mind. We are currently taking the photos off his phone and up to three days before he died he was taking pictures (although most seemed to be accidental). I sent three photos to my phone – one of my cousin’s partner and Mike being tourists, a picture of a sunset he took, and lastly the last photo he took of New York City (the first picture on this post). It’s easy to think he’s not gone, he’s just not here but the reality is I can’t text him or email him. When it is so close to death it feels like the veil between here and there is slightly more transparent. It was so soon, it really has been no time at all. Sometimes it is unbearable to think that he’s gone and other times I am so relieved because he wasn’t living a life for the past year and a half. I have never felt something so bittersweet before.
It’s frustrating he’s not that strong in my memories – he’s there but I can’t hear his voice and I really can’t remember him being so big. The memories of him are filled in with memories of him being sick and that upsets me.
When I start crying and think of everything I have written down I think of what he always said to me. I think of the time we were going to Italy – I told him he would have to hold my hand to which he replied no way but I know he would have. It makes me glad and simultaneously upset to think I’m hoping to move to Italy by the end of this year because I know he would have been one of the first over. I think of the time I was learning to drive and he said “when you’re driving at night you can only focus on the 200m in front of you, that is all you need to worry about”. I don’t think that was confined to driving. I think of when he would come home for Christmas and we would be so excited. I think of when he was upset with me because I seemed more excited about my other uncle being home than him. I think of when i asked him did he know we love him a week before he died and he nodded his head. I held mild resentment over the years, emotions that I didn’t even realise until he passed away but when something happened a month ago I realised he forgave me, it was very comforting.
Honestly it breaks my heart that he won’t come home from New York again or he won’t be there for family reunions or weddings and he won’t be there for our milestones but I’m so glad he’s not suffering because he really did for a long time. I loved and love him so much.
Terminal illnesses are harrowing and to be directly affected by one contains an unexplainable hurt. If you’d like to read more on Motor Neurone or Pick’s disease I’ve made a short list.
Pick’s disease – New York Times
Pick’s disease – The Huffingtin Post
David Baddiel’s documentary on Pick’s disease
Motor Neurone – IMNDA