From 7th August, 2022.
Alzheimers /dementia is a lightswitch journey, where you’re never sure when the switch goes on or for how long. But when it does, you savor every precious minute.
Dad will have long stretches where he isnt quite present. He doesnt speak, he restless fidgets constantly, he can be lost in doing the same repetitive motion (tugging on a sheet and trying to throw spread it out over the end of the bed is the current one), or he sleeps and wakes in short bursts of 15 minutes. It’s like he isnt really here with you. He will have times of the day where he is very frail, has no #want to move and needs to be lifted and have assistance to sit up or walk. It’s sad and hard to see our dad like this. I worry what he’s feeling in those times. Is he sad, afraid, confused, maybe even angry? What can we do and say to help him, comfort and reassure him? Is anything reaching him at those times? Does he even hear us? I’m not sure. All we can do is just love him and hope he can feel it.
Then out of nowhere, Dad will ‘wake up’. The light comes on in his eyes, his face – he looks at you and really sees you. He talks, just joins in a conversation, or picks up where he left off several days ago. He asks a question, thanks you for helping him, he just chats. And he tries to stand up and go go go, and he looks surprised when his legs falter and give way. Like he forgot he’s been using a wheelchair and walker. And when that happens, when my dad is “awake” I want to grab hold of that moment with both hands, grab hold tight of that awareness, and not let him go. I have to stop myself from literally fistbump-shouting for joy that he’s back, because I might scare him away back into the faraway place where we can’t reach him.
Like today. I went to get him to go for a Sunday ride in the car. Cam had gotten him ready, and when I arrived, Cam was just brushing Dad’s hair “so you look extra nice”. Dad had to be carried to the car because he was so frail and unresponsive. He didnt speak. He didnt smile or wave back at Cam and Mum as we drove out. I was glad to be going out with Dad, some #DadDaughter time just us. But not even ten minutes into the drive and Dad went to sleep. 😴 So I drove around for nearly an hour while he snoozed lol, so Cam and mum got to have a break.
But then a switch happened. And just like that, my dad was there with me. We were on the final road back home when Dad woke up and actually answered my rambling. He pointed out building projects, asked who was doing them, and I told him about Darren’s latest project. Then we talked about land and different places along the way. He was really looking at the scenery and seeing it. Simply enjoying the drive.
I wanted to cram 101 different things into those precious few minutes, ask him how hes REALLY feeling and what can we do to make this journey better easier for him? Tell him I love him and I’m so sorry this is happening to him. Thank him for being a father who always listened and made us each feel special. Tell him I remember how he would take us kids swimming at Vaiala after he finished work and now that I’m a grownup I realise how that wasnt easy to do but he managed to take us and swim with us and throw us up into the air and enjoy it even tho he must have been tired from work…so many things. But there isnt enough time. And I don’t want to ruin the mundane ordinary-mess of this moment. Where me and Dad can have a regular chat about the little things. Where dementia isnt stealing even the little things from us.
Then we got back home and he opened his door and tried to hop out, surprised when he couldnt. But he didnt need much help to go inside the house, he wanted to stroll up and down for a bit. He smiled. Sat next to mum. Said yes he wanted a chocolate chip cookie. And then slowly, slowly the light of awareness slipped away again.
When will the next moment of light be? I dont know. But in the meantime, I’m thankful for this one.
#DaysWithDad
Lani Wendt Young 