When your Love has dementia, your time is not your own.

You plan to have dinner with friends, then you see him sitting on the toilet bowl with his pants still on, and the seat up. You text your friend to cancel - again. 

Today is not the day.

You let him sleep as long as possible in the morning, then you wake him gently and tell him that it’s lab work day. He doesn’t do well in the mornings until he’s had some time, and some food. We have a routine - it’s a process. He’s a little wonky but cooperative. The lab takes him right in. He just looks around with curiosity while his blood is being drawn. He’s unconcerned as long as you’re closeby. Bloodwork done, you give him his electrolyte water and some fig bars to eat in the car on the way home. You had hoped to get some things done today, but had not planned on being exhausted already, and it’s not even 10am. You give it a halfhearted try, but you realize as you give up and usher him up the stairs…

that today is not the day.

You wake up in the morning, motivated by an uncommon energy. You begin putting away the little things that you’ve been setting aside. These things are everywhere, and the clutter makes you feel like you’ve lost control of your life. You think back to the time when nothing was ever out of place, then you look around at the chaos of unfinished projects, and you wonder how this has happened. But today, you get busy. 

Today is the day! 

You take your Love by the hand and together, you go outside for a short walk in the warm sunshine. You donate some things to the community collection box, and return home. You're feeling good, busy with this and that, you look over to find your Love standing in the hallway with his forehead against the wall. Panic stops you in your tracks!  

What’s wrong? How do you feel? Come sit down! He says: “wind”. You realize he’s standing over the fan. You blame yourself! You've let him get too warm! He's overtired! You haven't fed him enough today and he feels dizzy. You looked away too long!! 

You give him some water and a banana. He’s still fuzzy but the scare has passed. He wants to go lie down. He is a very light sleeper and often wakes up suddenly and in need of reassurance. So you let go of all of the things you were going to do today. You try to forgive yourself, because it isn’t laziness, or even a choice that slows you to a stop. 

Today is just not the day…

Today, you forget about all of the clutter, both real, and in your head. Today, you take the TIME. You recognize what a luxury it is to be able to just set everything else aside and be there with him. All he needs is you. You feel joy, and a bit of relief when he wakes up with a smile. He seems to be a little more present after his rest. Then comes the gratitude, because you know that one day, you’ll have all the time in the world to put your house in order, because he will no longer be by your side.

You feel gratitude because today is not THAT day.

I wish it would rain

I wake up in the middle of the night, feeling his hands searching frantically. His face is shadowed by a mask of such profound worry. I turn to him and see the beginnings of relief in his eyes, but the hands continue to flutter and clutch. He can’t tell me what’s wrong easily, but I hug him and kiss him and tell him that he’s my world. I see hope begin to blossom on his sweet face. I tell him that I will always be by his side. I tell him that I will never abandon him. I see the dawn of belief, and I pull him to me. I shush him like a baby and rub his head. Don’t worry my love. I’ve got you and you’re safe. He falls asleep to my calming words.

I wish it would rain.

An old friend comes to our island and she reaches out. She invites us to join her and her husband for a fun day on their boat. She doesn’t know that the tears I can’t afford to release, spring to my eyes, blurring the words as I tell her how happy I am that we’re invited, but it’s a bit more than we can manage these days. I finish my reply and jump up to go to the bathroom. I return to Bruce and he lights up. He whispers as I climb into bed next to him, “ I Loooooooovve yooooooouuuu”. 

I wish it would rain.

He wakes up and gets out of bed. I ask him where he’s going. Pee.  I turn on the bathroom light and he goes in. He comes back out looking confused. I get up to help him. He doesn’t know if he needs to sit or stand. He doesn’t know what he needs to do. I help him get into position to pee and he doesn’t know what to do with his hands. It’s up to me to aim, or it’s going everywhere. He struggles and finally it comes. I pull his undies up and he turns toward the sink, with one hand on his bottom. I think maybe I’ve got things maladjusted and I reach over to help.  And then I realize that he has a load of poop in his undies. He has no idea. 

Without pause, and with a reassuring smile, I whisk him into the shower. Undies in the trash. I dry him off as his hands try to clutch at the towel and I see that his eyes are locked on my face with a look of such tenderness, I know that he’s still in there. He says “ I love you”. I tell him I love him too, give him a quick kiss and I get him dressed. 

My mind is electric as I feel warring factions battling it out over control of my face. I want to crawl back into bed and stay there. I wish I had ice cream in the house. Frantic to do something to keep from spiraling. I choose to get us out of the house to clear my head. We go on a quick shopping trip to get Bruce some shorts that are easy to remove. I lead him by the hand, and he’s happy to be anywhere that I am. And I feel the same. 

Back home, and I wish it would rain.

Every day. Many times per day. Little tragedies threaten to expose my secret. 

He doesn’t know how to put a pill into his mouth. 

He doesn’t know which part of the cup to drink from. 

He forgets how to swallow (terrifying)

He doesn’t know where his clothes are. 

Where to put his hands when putting on a shirt, 

How to lift one foot and step into his shorts, 

He watches me while I eat breakfast to see what he’s supposed to do, 

He cannot make a choice, no matter how basic. 

Interspersed amongst those tragedies are the little wins. 

He knows where his shoes are and can put them on. 

He knows we take out the trash and lock the door before bed. (We don’t really lock the door anymore, it’s automatic, but he remembers)

He knows my name, most of the time, and he tells me he loves me a hundred times a day. 

He wants to help. He wants to pull his weight. 

He wants to make me happy and he is devastated if I should ever let him see a tear slide down my cheek.

Damn, I wish it would rain.

Dementia Life

When your Love has dementia, you realize that life isn’t always about excitement, and anticipation for the future. Sometimes it’s about making sure that your Love is confident in his awareness that every day with him is equal to, or greater than all possible tomorrows. And then, if you’re fortunate enough to see another day together, you do it again.    

Dementia Life

    Today

Every day I strive to keep up the happy facade…

Today, it was a struggle I lost…

Every day I keep busy so that I have no time to dwell…

Today I realized that the scales are shifting, as

Every day more of “our” things get stacked onto my pile

Today, I had nothing left in me to handle my own pile

Every day, I confidently say “I can do this!”

But today, doubt crept in

Every day I convince myself that I can just LOVE him enough to keep this demon at bay

Today, the demon drew first blood. And I am shaken.

When your love has dementia

Every day is full of a thousand crackling shocks to your brain

Each little snap is a realization that another small piece of him is missing 

When your love has dementia

Every day you search his eyes a thousand times

Longing for a glimpse of him so you’ll know that all is not yet lost

When your love has dementia

Every day you try to adapt and adjust to the rapid fire blows to your heart

Helping him, and yourself to ease into this new life, trying not to long for the old one too much

When your love has dementia

You run as fast as you can, doing anything, everything, to keep ahead of the sadness

Because the worst thing you could do, would be to let him see the sadness in your eyes.

When your love has dementia

You think that if you can just love him enough

He won’t go.