Meet Sofia

Sofia was my first patient, and I won't hesitate to tell the world that she is my favorite. The first day I walked into the home she shares with her husband, I knew I would love this family. Sofia is in her mid-80's, her husband, Doc, is in his late 80's. They've been married over 60 years. Their house is full of love and reminders of the life they've built together.

On my first visit, Doc tried to tell me everything in a very short two hours. It simply wouldn't work that way. I did gather that Sofia immigrated here with her family some 70 years ago from It.al.y. She's always been a matriarch, a stay-at-home mom, a housewife, whatever you choose to call her. Together, they raised three children in a home they've shared for nearly 60 years.

Sofia's diagnosis is dementia. A true Alzheimer's diagnosis has yet to be made, mostly out of the family's unwillingness to accept such a thing. I can't blame them and it really wouldn't benefit them at all to have a label. Symptoms began about 6 years ago. Small things like forgetting which cabinet each dish belonged in. Now, she regularly forgets the names of her children and can't be trusted to shower alone. I ask her how old she is. "I'm one hundred years old, at least."

We fall into a routine quickly, like old friends. The first day, she hesitates to let me help her shower. She is modest - she was raised to be. By the third day, she's ready to go when I arrive, knowing she's safe with me. The first day, she barely says two words to me. Now, we have long conversations and she thanks me a hundred times on my way out the door. She's appreciative for my help. I'm appreciative for what I think she can teach me.

She's a lifelong Catholic. Devout. Always at Mass, active in the church organizations. She struggles through her shower, forgetting what we've washed and what we haven't. She confides in me. "I thought I was a good Catholic. I thought I lived my life right. Why is God punishing me?"

I personally lack the faith to even believe in punishment anymore, so I find it hard to reassure the woman. How do you try to help someone trust a God that you don't trust yourself? I run through my brain, grasping for something (anything) that will help her. I dig deep for my own last vestige of faith so that I might cast it out to Sofia, giving her something to hold on to. "Tempted and tried, we're oft made to wonder...." I begin to sing. She's hesitant at first, not sure she can remember. She listens a while, eyes closed. When the chorus comes around, she knows it. She sings with certainty and conviction. "Farther along, we'll know all about it. Farther along, we'll understand why. Cheer up my brother, live in the sunshine. We'll understand it all by and by." She's proud of herself for remembering.

Whether it was pride or reassurance or simply shifting the gears of her fragile mind, we managed to get her back on solid footing for a while. She smiled through tears, though she may not have even remembered she was crying.

This past week, I walked in and Doc looked at me with tears in his eyes. "It's a bad day today."

"She's having a bad day or you are?"

"I am because she is, I suppose. It's hard seeing her like this."

"I've got her now, Doc. Why don't you go have a rest and I'll see if getting a shower and clean clothes will help her any."

He takes my lead. It always astounds me that these people trust me with the most important person in their world. I feel unworthy.

I ask her, "Are you ready for your shower?" She tells me that she is and we start down the hall. At the end, she is confused. She knows it's time for a shower, but can't remember where to go. Bedroom or bathroom? I remind her we're showering. She tells me we belong in the room with the water. I let her think on it for a minute and she remembers which room that is. I don't know if that's the RIGHT answer, but it's the one I had in the moment, so I rolled with it.

We did the shower different this day, using a shower chair and a hand shower instead of making her stand. She loved it. She raved about the ease and comfort. She shot me with water. A great time was had by all. We finish up, I help her dry herself, get her into her robe. Time to go to the bedroom to dress for the day. I pick out her clothes, making sure she looks lovely. It may seem odd or insensitive, but I feel that these days, there's sometimes very little of Sofia left. I want Doc to have all he can get. If I dress her nicely, make sure her hair is properly brushed, invite her to wear jewelry.... Maybe Doc can hold onto his wife a little longer.

After she dresses and I help her fix her hair and put on earrings, I remind her that she hasn't yet brushed her teeth. She says she doesn't want to, but I convince her lovingly. I pick up her robe, put away her dressing gown. I go to the bathroom and find her standing at the sink staring into the mirror.

"Sofia? Are you okay, my dear?"

"Oh yes. It's just..." The tears begin. "Why am I in here?"

"It's okay. You came to brush your teeth. Do you need help getting started?"

She brightens a bit. "No, no. I can remember how to do that. I only forgot for a minute."

She gets her toothbrush and toothpaste from the cabinet, brushes well. I notice she's rinsing her toothbrush obsessively. It's what she does sometimes when she forgets. Her mind kind of goes into a loop because she can't remember what happens next. She can't remember how to stop rinsing, can't remember what comes after... So she continues. Before I intervene, she stops. She opens the cabinet and puts her toothpaste away. She stands it up on its cap and it falls to the side, blocking her toothbrush holder. She looks intently for a moment before the tears begin again.

She looks at me confused. "I can't remember where this goes," she tells me, holding up her toothbrush.

I step in beside her and move her toothpaste aside in the cabinet. As soon as she sees the toothbrush holder, she understands what happens next. It's as though because she couldn't see the holder, it simply did not exist in her mind.

The torture of dementia and Alzheimer's is obvious. It's something I've known was terrible - catching glimpses of it in friends and distant relatives. But to see it everyday, to witness firsthand the gamut of emotions it makes one run... Some days, it's just too much. Some days, I get in my car and drive to the nearest parking lot so I can cry for the woman who can't remember where her toothbrush goes.

The Story Behind It

I am in the home care business. I work for a state agency that provides home based services to elderly individuals within the community. Most of our patients are suffering from dementia, whether it be Alzheimer's Disease or senility due to normal aging processes. The things I see and hear over the course of my work should be shared. Due to confidentiality laws, I cannot disclose names or locations, so each of my patients will have a nickname.

While I can't tell you who they are by name, I can tell you who they are by heart. Dementia takes away many things, one of which is inhibition in a lot of cases. Rather than close themselves off to outsiders, my patients tend to take me in with open arms. I know about their fears, their loves, their families, their childhood. They may not remember what they had for breakfast, but they remember what brought them joy in their youth. Isn't that more important anyway?

I'm not sure where this blog will go. It may simply be a form of therapy for my own mind, on days when I have trouble coping with helping others learn to cope. If it is this hard for me to wrap my mind around what's happening to my patients, I can't begin to imagine how afraid, lost, forgotten, forsaken they all must feel.

So we will begin. Each patient will be introduced on their own, as each has their own story. Maybe by reaching out to the internet, I will find better ways to treat, to soothe, to comfort. Heaven knows I'm struggling to find it on my own.