"Alzheimer's disease has stripped you away, little by little."
Veteren News Corp photographer Gary Ramage has documented warzone all around the world, but one of his most affecting jobs has been documenting a painful week putting his father suffering from Alzheimer's into a care home.
It’s just me again, your daughter. I know we spoke already this morning for our daily two minute chat when I rang you, but I’m feeling the need to talk to you again. So I thought I’d write you a letter, and maybe someone can read it to you.
The Reciprocity of Need
Our conversations are getting shorter and shorter and I can almost feel your desperation to get off the phone when we speak, because you don’t know what else to say. I don’t want to ever make you feel uncomfortable, so I’m happy with short chats if that’s what you can manage. But even though you’re still alive, I really miss you so much.
'You're still here, but I miss you.' Image: Supplied
Last month after we got home from our four-day Mother/Daughter trip to Tasmania, I had many people ask me how it was and if I enjoyed myself. But the truth is, I felt like the biggest arsehole ever admitting my true feelings to anyone. Because I didn’t enjoy myself, and honestly I wanted to leave and fly back to my own safe house of chaos within a few hours of being with you. I felt angry, so angry, that this is what is happening to you - and I felt so incredibly ripped off from a life that was supposed to be filled with making new memories - not frantically trying to count the ones remaining.
To get little kids to be quiet, lower your voice instead of raising it. This forces kids to focus. Got a whole pack to corral? Whisper, "If you want to hear what we're doing next, hop on one foot." Goofy jumping is bound to be contagious.
But it isn’t your fault. Because you just aren’t you anymore.
Alzheimer's disease has stripped you away, little by little, over the last few years. It is a process of grieving so cruel and needlessly hurtful, where every time I see you I feel like you’ve lost another little part of what makes you *you*. It’s like losing someone familiar, someone you love and trust and have spent your whole life building foundations with and memories with - but in slow motion.
'It's like losing the one you love in slow motion.' Image: Supplied
Now, since returning to work, I raced out the door to guiltily read email on my commute, wired myself to my computer all day, followed by childcare pick-ups, scoffing dinner, wrangling my toddler into his bath, bottle and bed routine and then retreating into mind-numbing social scrolling until way past my own bedtime.
What began as difficulty knowing how to answer your phone and forgetting how to turn off your radio in the car when you visited me, has now developed into forgetting how to read a menu at a cafe and asking me the same questions over and over again in quick succession.
So many times you have told me how much you “hate this stupid disease” and I can hear the frustration in your voice as you attempt to grasp out of thin air the word that you’re needing to describe whatever it is you’re trying to tell me. And so many times you give up, in resignation, because it’s like you know that Alzheimer's has taken its hold and you see no point trying anymore. That sense of loss, that sense of surrender to a force that is so much bigger than you, is such a heart-wrenching thing to witness in a loved one.
'Your disease has taken hold of you.' Image: Supplied
I know you "hate this stupid disease"
You used to be the kind of person to chat to everyone, warm and open-hearted. Now you spend your time checking your bag for your keys and phone 10 times, or checking locks on the doors, which you’ve already checked many times before. You’ve also developed some uncharacteristic prejudices against people, which was never something you’ve ever done before and I know isn’t really you. But because you are so desperate to feel like you have a handle on a life that's taking a really unexpected turn, you’re forever telling whoever will listen about the places you’ve been and the people you’ve seen (even though you haven’t) and I just go along with it, because I know you’re just trying to make sense of everything that is happening to you. Who am I to tell you otherwise, because in doing so only makes you more upset and confused. Together, you and I have become professional detectives, because every time someone gives you something to look after, you “put it into a special place” where it can be safe … except in no time at all, you’ve forgotten where exactly you put it.
The first night we spent in Tasmania together, long after you finally fell asleep, I sat in my bed and cried big, fat, wet tears. You had woken up wondering where you were a few times, and in an instant I realised that we had swapped roles and I was your mother and you were my child as I coaxed you back into bed, stroked your hair and told you that everything was OK and whatever you had lost we could find in the morning.
'You wake up and wonder where you are.' Image: iStock
I sat in my bed and cried
Take charge. Children crave limits, which help them understand and manage an often confusing world. Show your love by setting boundaries so your kids can explore and discover their passions safely.
That night I cried for the mother you are that I had lost, and the mother I was losing a little bit more each day. Although your hand still finds its way into mine, and although I know you still remember who I am, I'm grieving. And I want you to find your way back to me, even though I know you never will and I know there will eventually come a time when my own identity escapes you. But I can’t bear to think about that right now.
There is truly no more twisted heartache than the gentle but constant pull of someone disappearing slowly before your eyes like there is with Alzheimer's disease.
I wish you didn’t have to leave me. I feel so alone. I know I’ll eventually find my way without you, like I have done gradually over the years - drawing on strength inside me I never really knew existed.
But I wish I didn’t have to. I wish you could stay.
From your beloved daughter.