Gifts from a Terrible Disease
Alzheimer’s crept into our lives about five years ago. It’s like a vine growing alongside a house, slowly taking over the space that was once free. But in this case, the vine is slowly creeping over my mum’s brain.
There are so many horrific statistics attached to this disease:
– Worldwide, nearly 44 million people currently have Alzheimer’s or a related dementia.
– One in nine Americans over 65 has Alzheimer’s disease.
– Unless a cure is found, more than 16 million Americans will have the disease by 2050.
The numbers are so scary I can hardly wrap my head around them. But to be perfectly honest with you, right here, right now, I don’t care about all these statistics. The one thing I do care about is the fact that this is happening to my mum.
The disease has brought her physical pain, fear, and confusion. In fact, it has brought all of us that.
Watching my mum disappear into this disease is heart-wrenching. Watching my dad having to cope with losing the love of his life, the woman he has been married to for 50 years, makes me sad beyond belief.
It’s a cruel disease. We are all devastated. It hasn’t been easy for me to process what is happening. In fact, there are days where I know I haven’t processed it at all. I carry around a sadness that is hard to describe; all I can say is that it is a sadness that comes from deep within my soul.
In contrast, on the good days, I actually consider myself “lucky.” Despite her dipping in and out of lucidity, she is still there for me, at least for now. And so I am learning to hold on to the precious moments when we do connect, and that has taught me a lot about life.
So far, the progression of the disease has been slow. Slow enough that I have had the chance over the last five years to tell her how I feel. I have had the chance to say goodbye gradually and to make sure she knows I love her every step of the way. Some people don’t get that chance and have to deal with death from one moment to the next. So, yes, I am lucky in a way.
But for me, it’s bigger than that. This time with her has given me the courage to say the things I need to say to those around me, without bottling them up or hiding from them. Because there is only now for her. Later isn’t an option.
My mum’s Alzheimer’s has helped me voice the sometimes difficult things that need to be said at work and in my private life. It has taught me to express my love for my loved ones. Because, cliché as this sounds, life really is too short. And that is a gift I have received from this terrible disease.
It has also shown me how to live in the moment. My mum’s moments are short, and most often forgotten. When she asks me the same question over and over again, I try not to get frustrated. I repeat myself over and over again like I am saying it for the first time. I am simply living in her moment.
I have also come to realize how much my energy has an effect on her. When words fail, which is happening more often, it’s the energy between us that connects us. A hug, a touch, or a squeeze of a hand can say so much more than words. That magical hug is enough—for her and for me.
With that realization comes a new perspective on how my energy has an effect on others. When I am present, and I mean truly present, I feel my relationships and experiences blossom—from the simple act of buying bread at my local bakery (actually taking the time to breathe in the smell of fresh bread rather than just crossing off something else on the shopping list), to the deep, meaningful moments with my friends.
We all grieve in different ways. Each family member and friend is seeking solace and comfort in whatever way helps. I have stumbled through this as best as I can, trying to find my own way. But, how do you accept slowly losing a person you love to a disease?
I don’t have any miracle answers. I wish I did.
There is plenty of advice and support out there. I have found that some of the advice is helpful, while some of it is simply stupid; I would laugh if it weren’t so raw. There is, however, one piece of advice—more of a thought, actually—that I recently received from a good friend. It has helped me to look at the situation differently, and on some days, has given me a sense of peace.
I think that is why I am writing this story—to pass on this advice, on the off chance that someone who is losing a loved one to Alzheimer’s (or any other devastating disease, for that matter) may be comforted by it, just as I have been.
This advice has given me the opportunity to look at this situation through different lenses, depending on how I am feeling on any particular day.
The beauty of this thought is that it has offered me the space to try to accept the situation bit by bit. It has also helped me to look at life differently; I guess they call that “re-framing.” And on other days, it has helped me to think that my mum actually has her own plan.
The thought is this: that my mum has found another house to move into. It’s not that she is unhappy where she is, but she has just found another home to live in, somewhere else. She is slowly moving all of her stuff there—one plate, one knife, and one book at a time.
At the moment, she is living in both houses. At some point soon, she will have moved out completely.
I don’t know what will happen to her when she finally moves out. I just hope with all my heart that she is as happy where she goes as she has been with us. And because she can’t take her memories with her, it’s up to me to tell her now, again and again: I love you. I love you. I love you.
And you know what? I have complete faith that she will take our love with her to her new house.
I am not religious, but I have found faith.
Faith—that is a gift I have received from this terrible disease.