Imagine for a moment that the person you love most in the world died today. 

You’re in shock

Your mind feels like a caged wildcat, throwing itself against the bars in all directions, just to get out and back to reality as you know it.

You feel paralyzed, immovable.

Ugly crying is a simple word or thought away.

Maybe you’re mad at the world, and the next person who lets you down gets more than either of you expected.

When your husband has dementia, someone might say to you:  “We have not just lost our husband.” 

No. But…

When I ask him how he feels and he tells me he doesn’t know

When he struggles to lift a foot so I can put on his underwear

When I watch as puzzlement flickers across his face when he can’t figure out how to put a pill in his mouth or which end of the straw to put his lips. And just try to imagine that you have to coach him on how to swallow that pill.

Try to imagine how you feel when he can’t get into the car

When he can’t put on his seatbelt

and when he doesn’t know how to get out of the car again. 

Imagine that he’s asleep and you go into another room, only to return and find him in a panic because he woke up and you weren’t by his side. 

He is paralyzed with fear of sitting. Really. He freezes half standing because he doesn’t know that the chair will be right there when he sits. 

Imagine waiting patiently while he sputters out random, disjointed words as he tries to tell you something that, in his head, HE KNOWS!  And you see that little death of dignity in his eyes as he realizes he can’t speak, and you try to pretend that you totally understood what he just said, just to try to ease his mind. 

Now imagine that you look at photos with him as they tell you to do. Photos of your life together. Imagine that he looks at you in wonder and says “We did all of that?” and the heartbreak weights you down so you can hardly move.

And don’t ask him if he knows your name. Just don’t do it.

Don’t let the tears fall as you watch him struggle to speak. Don’t you dare cry when he says “Ice” and it turns into a sick game of charades that you never win. (it wasn't ice)

Don’t panic when you see him begin to fidget and you know he needs something but can’t tell you what it is. Now it’s 20 questions, and you can’t win that game either.

And don’t think that you can talk to your friends or family about it either, oh no. They still expect you to be that person that you once were. That strong person who can do anything she wants, the one who bends life to her will daily, never takes no for an answer and gets shit done!

They don’t know that you cry. That you can’t stop crying. That your heart breaks to see your beloved husband as he marvels when you point out where to put his lips on the sippy cup. 

They don’t know that you cry harder when you look into his face and you say “I look terrible, don’t I” And he begins to laugh, because he knows THAT is a trick question he dare not answer. 

And you laugh together, mixed with your heart wrenching sobs, because you’ve just experienced one of those  precious scraps of of Him, and you know that he’s still in there. And he lifts his frail arm so that you can lay your head on his shoulder and feel his tender embrace as his forever searching hands flutter over you. 

You close your eyes and more tears come as you remember other times in his embrace. Times when he was a Tiger. Times when his arms were strong. Times when you were a team and not just a sad, shriveling half of what once was amazing. 

No, it’s true. I have not just lost my husband. 

I. LOSE. HIM. A THOUSAND. TIMES. EACH. DAY. 

Now imagine feeling that pain every day, and YOU try to continue to be a good neighbor, a good friend, a functioning adult. 

Gotta go feed the wildcat…

We hear so much about taking care of ourselves first, so that we can better care for our loved one. Yesterday I tried. I booked some spa services at a very small local spa, where we've been before. They have a lovely space, soft music, big windows overlooking a well manicured lawn, big chair in the corner for my husband to sit that's only 10 feet from the spa table. I took him to the toilet twice during my treatment. I checked on him continuously, he always answered that he was good. Five minutes before my treatment was done, he got up and started picking up my bags. He had become cold. (I had a jacket on him) and when he gets cold, he starts to panic. He was halfway to a panic attack. I jumped off the table, took him the blanket I had over my body, settled him down, tucked him in, and when he had calmed enough to tell me he wa-s ok, I finished my treatment. Literally five more minutes. On the way out, I tried to take his water bottle from him and his finger got caught in the handle. He said as plain as if he hadn't lost the ability to speak, "Today just isn't my day". I got him to the car with minor stumbles and the stricken look on the esthetician's face was the last thing I saw as I drove away and tears flooded my eyes. Anything I do for myself, is not good for my husband. I try so hard to be selfless and strong. And I will admit that I tell people I'm fine when they ask, but it's because it's just an empty question, they don't really want to know that I have had to learn how to work a penis. So I spent $200 for a nice relaxing-ish spa treatment that ended in anxiety and guilt for having caused my husband a bit of discomfort. It won't change, but I feel like I need to wear a sign that warns people that I'm five minutes from panic at any sign of adversity.

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?