I found a note on my phone from September 14, 2018. The half way point of my mother’s life in our house. Three years after, my mother moved in with us and three years before she passed. Reading it now, I can hear the worry of a caregiver. The worry and stress that accompany each day. It’s these types of snapshots that provide what dementia caregiving is like. This is what I wrote:
The promise of a new day begins each morning, yet every moment is a trap. A trap set for your heart.
Is there a light in her eyes when she wakes up? What is the tone of her voice?
I hold my breath while I wait and carry the hope of a returned smile, a returned laugh.
Never knowing if I will be met with happy or angry.
Never knowing what the next minute will bring.
Immediately I can tell - sullen, sallow or light & happy.
Will those delusions of threatening, scary people appear?
Maybe today will be a good day with conversation and her eyes twinkling.
Experience a delightful moment. Leave the room to return to someone else - as if that moment never happened.
What do you do with that? Where does that disappointment go?
It settles in that lump in your throat, that nausea in your stomach, that knot in your chest, the vague veil of pain in your head.
You carry it with you all day. It’s there in a joyful time with your kids, or talking with someone - it is always there.
Even in those brief moments when you have a reprieve. When you “forget” and find yourself out of the house laughing, enjoying that feeling of lightness, and you freeze. What is that feeling? What is that lightness? And then it evaporates when you remember, oh my mother has dementia.
Dementia, it’s such a heavy word I guess because it represents heavy things - “a group of thinking and social symptoms that interferes with daily functioning.” Doesn’t seem too heavy until you think about daily functioning.
Things we all take for granted, brushing our teeth, getting dressed, using the remote control for the tv, deciding how we want to spend our day. All compromised by dementia.
To look at your mother who wants to wear the same thing she did yesterday, who wants to eat the same thing she ate yesterday and the day before, is surreal.
You think this can't be true. And then she says she has to tell you something, and leans in as if to tell you a secret. It's a story that you know didn't happen, but it's real for her. You nod in understanding while your brain screams at you, no no, this isn’t real! It never happened!!! But you can’t say that because it will make her not trust you or worse, make her feel stupid. So you agree with her, and validate her feelings and then change the subject. It’s called “redirecting” in the dementia world. Like trying to take your child’s attention away from that toy on tv. Only it’s not your child, it’s your mother. The woman who raised you & who you looked up to your entire life.
You try to distract her from what's happening, but you wonder how this is happening.
You get ready for another day that is the same as yesterday. Same as the day before. But different in nuances. Even while you are thankful that she is still with you, that you can still speak to her & see her, you mourn for the life you used to have with her. Mourn for the time you used to spend, the things you used to do and talk about and just be with her. You mourn for that mother and yet she is right in front of you.
How can that be? Such confusing feelings. Sadness and anger are your constant companions.
Taking each day as it comes, you are trying to live your life. How? How can you be present in your own life when you are trying to give your mother hers? When hers exists in one room.
And yet each day you try to bring her joy. Try to make her feel special and important. The thought of losing her, really losing her, is too much to bear.
You wonder what kind of life this is for her. How she is dealing with it all. And then she recites a line from a tv show she’s seen before and you wonder how that’s possible? She laughs at something on a game show and it gives you hope, hope for what I don’t know. There is no getting better from dementia. There is no up. How many things will disappear, how many abilities. A game no one wants to play. And just when you think “this is the worst”, something worse comes along.
The blessing comes in her not realizing she is slipping. But you do. You are a witness to everything. She doesn’t remember and you remember it all, even when you want to forget it, hope you can forget it.