Dementia Life - Why our home looks like this

Today I felt a burst of energy and got up ready to clean out some of the areas that are just collecting stuff. Off I go, laundry folded, another load in to wash, then I see him standing outside of the bathroom.

I follow his slow shuffle into the bathroom and see that he's already started (before taking his pants down). I get him settled, wait while he does his thing. I clean him up, but I decide that he needs a shower. Off we go to the guest bath where there is a tub and shower chair and all of the paraphernalia needed to bathe him without herniating a disc.

I notice that he is clutching at anything close. He's becoming unsteady and fearful, so I slow down and use a calm voice and a helping hand to calm him. I repeat, 9 times, where to hold onto the grab bars to get into the tub. Sitting down on the shower chair is another struggle. When you have dementia, sitting down on a chair that is behind you can feel like you're falling into the abyss. He crouches but won't commit. I finally talk him through it and he's ready for his bath. Warm water calms him and he likes the bath.

Hair washed, body washed and exfoliated, feet exfoliated, time to get out. He is wobbly as he stands, still clutching. He doesn't know what I'm telling him to do. He has forgotten how to lift his foot. He doesn't understand when I tell him to turn around. I gently shift his body but his feet are planted like palm roots. I tell him. I repeat. I demonstrate. I tell him I've got him as I feel the blood being squeezed out of my hand by his clenched fingers.

Still, I persist. One foot out. More repeating, shifting weight, more demonstrations. Finally, he gets the other foot lifted out of the tub. I've tried steps. That scares him. I've got soft adhesive on the side of the tub. I've got grab bars everywhere. Short of a remodel, I've done my best.

There he stands in a slight crouching position. His hands are like vice grips on mine. His body is tight like he's about to do a bungee jump. I towel him dry, difficult with the octopus hands grabbing the towel. I take his hand and tell him "let's go to our room and get you dressed". He's cooperative but his feet are not. They're still planted. We take a relaxing breath and I can see his crouched stance begin to soften, and I coax him to lift a foot. Slowly we walk the short distance to our room.

Putting on his underwear is another teachable moment. Lift this foot. Repeat. Repeat. Tap the foot. Finally, one foot is in but it takes a while to get his other foot off the ground. I find a thick cotton t-shirt and fish for his hands through the arm holes. Hand over head as I slip the shirt onto his body and I'm exhausted, dripping in sweat. I suggest a nap and help him into the bed. He's softly snoring now and I'm too spent to work on - what was I going to do today? 

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.