"Your Coat is the Color of Being Alive"

Death has been a pretty constant companion around Russell House these days. Something about the change from summer into fall, the weather getting greyer, the air crisper, has turned my mind toward the deaths of some of my favorite residents.
I never thought I'd have a job where I had to deal with death on a regular basis. But this place is often the last place many of my residents live. Death is inevitable.
People die in different ways at Russell House.
Babs clung to life with everything in her neurotic heart, finally tiring, slipping away when nobody was looking.
Sandy had a great day before she died. For weeks, Sandy ate no more than a bite of food at meals. That night, she ate a full dinner and laughed at the antics of the staff. As a woman who often refused care, never letting people touch her, we all found it strange when she let us brush her hair, wash her face and brush her teeth. She went to bed warm, in a beautiful set of blue pajamas that she picked out herself. And then she slipped away in her sleep, alone, but unafraid. A good death.
Nora declined suddenly, yelling for her daughter from her favorite chair in the living room for days. She hated going to bed, never wanted to be alone. We knew she was dying when she asked to lie down in her room. She died with her family around her, her breathing growing shallow, her daughter shedding quiet tears and drinking cup after cup of coffee.
As I write this tonight, one of my favorite residents is surrounded by his family as well. Harry was (is? I'm having a hard time not speaking about him in the past tense) charming. He didn't talk much, but loved to whistle while I sang songs from the Wizard of Oz. He also spilled things. Almost everything, really, at every meal. The center table of the dining room, where he sat, was indicative of this penchant, all the water glasses, cutlery and bowls of soup pushed as far away from Harry as possible. But the Harry that I remember isn't really there tonight. I think he is slipping away. He is curled in the fetal position, breathing, but barely, his eyes half closed. I stayed after work for awhile to hold his hand, only leaving when his son (who looks so much like him, it almost made me cry) came into the room with his wife. The caregivers bowed out, leaving the family alone with Harry.
It's hard to find hope sometimes in all these deaths. It's hard not to focus on mortality and sadness, to embrace the joy. But even in their deaths, my residents are teaching me to embrace every moment I have.
Until next time, friends. Live well.

"Who Got Flowers?"

If questioned, I would be hard pressed to think of a "good thing" about having Alzheimer's disease. Until last week, I wouldn't have an answer. But I think I've found the smallest silver lining in this insidious disease.
Last week was Jan's birthday. Her kids sent her a beautiful bouquet of flowers, which we set up in the living room (we often do this so that everyone can enjoy a little color, and flowers make the residents smile). Every time Jan saw the flowers, she would turn to one of the caregivers and ask, "Who got flowers?"
"Those are yours, Jan. It's your birthday!"
"Well, so it is! Happy Birthday to me!"
We sang "Happy Birthday" at least six times that day, the residents often starting choruses of the song any time Jan's birthday was mentioned. It was kind of a beautiful series of moments.
So, last week, it wasn't just Jan's birthday. For her and for everyone at Russell House, it was her birthday over and over again that day. And the happiness that they felt did not diminish with each new discovery.
Until next time, love eachother and live well.

"I Wanted to Draw a Picture of Reno!"

All over Russell House, you will see art done by the residents. And even though most of it looks juvenile, there is a sense that these pictures were drawn by people with a deep sense of themselves, and a love for the world around them.
In Atlanta, a group called Art Without Boundaries is using art, music and other forms of creativity to help Alzheimer's suffers.
And it's working.
I've seen the amazing results of music and art on the residents of Russell House. Teresa loves to sing, and no matter what has happened throughout the day, a song will put a smile on her face.
Art, however, is not without its funny moments. On one of the collage posters made by the residents, there is a scrap of paper featuring the following poem:

Peter peter pumpkin-eater
Got drunk a lot
and is still paying for it.

Until next time, friends. Live well.

"I Found Some Candy!"

Here is an approximate transcript of a conversation I had with a resident tonight after bedtime:

Me: What's up, Keith? What are you doing out of bed?
Keith: There's a purple lurple glurple in there. It's been glopping around all night.
Me: Oh really?
Keith: Is it a fish? It's a fish. I can tell. There's copper in the doors. We have a lot to do about this today. For the nation.

This type of speech is known as aphasia, sometimes known by caregivers as "word salad". This side effect of Alzheimer's is one of the most interesting parts of my job. Because I can listen to this type of speech all night, wondering what they are really trying to say.

"He's a Nice Baby"

I don't often work the night shift at Russell House, but I really enjoy it every time I do. There are a few people who wander at night. They come into the living room, occupying recliners and watching old reruns of "I Love Lucy" (boy, does that lady get up to some hilarious highjinx!). Inevitably, someone asks for food. Last week, I made Violet a peanut butter and jelly sandwich. The review? "I've had better."

But really, what makes me happiest about the night shift is that when the residents are half-asleep, you get a glimpse of what they used to be like, and I think, a little of what's really in their hearts.

For example, while I was doing bed checks tonight (we check the residents every two hours, making sure they are dry and repositioning those that are not capable of moving) I lightly touched Teresa on the shoulder to wake her. This is a woman who, during the day, will often randomly mutter "Shut up, bitch," and paces the hallways counting steps in sets of twelve. But when I woke her up tonight, she breathed sleepily and smiled. She rolled over and opened one eye, saying "What wrong honey? Did you have a bad dream?" Then she scooted over, and pulled back the covers, patting the space beside her on the twin bed, "Here, you can snuggle in with me." I'm not a person who is really given to sentimentality, but I found my eyes welling up as I hugged her and told her that I was just in to check on her. She reminded me so much of my mother, and the nights when I was young, and I would crawl into bed with her after a nightmare.

It's easy to forget that the people I spend my days caring for have lived lives outside of Russell House. They, too, were once caregivers, and being reminded of that at night makes for some of the most poignant moments of my job.

Q: "How was your day?" A: "Damned if I know."

Earlier this week, CNN ran an article about something that many people working as caregivers, or caring for their own relatives have felt, but never had a name for. Caregiver Syndrome, as reported by CNN, is "a debilitating condition brought on by unrelieved, constant caring for a person with a chronic illness or dementia." (Thanks to Susanna for the link)

As you may have guessed, the occupation of "caregiver" has a very high turn-over/burn-out rate. In the last month, at least seven people have quit their jobs at Russell House, a few of them even having outbursts of anger during the process of leaving the job. According to CNN, "caregiver syndrome" may be at least part of the cause. Many who take on the task of caring for people with Alzheimer's or dementia have reported depression, anxiety, anger, and declining health. All these related to their immersion in a job that requires one to deal with things that most wouldn't dream of doing.

During a typical day as a caregiver, you are intimately involved with people's bodily functions and the most private and vulnerable moments of their day. When Aaron loses control of his bowels while you are changing his clothes, feces falling to the carpet inches away from your shoes, it is hard not to jump back in disgust. Instead, you must look him in the eye and comfort him, relieve his embarrassment, tell him, "Don't worry about it, darlin'. It happens all the time." And that's not a lie. It does.

Alzheimer's is not an easy disease to deal with. At least once a week, I find myself comparing "battle scars" with the other caregivers on the floor. Because when you're giving her a shower, Regina doesn't understand why you're taking off her clothes and then spraying water all over her body, and she doesn't react in a calm manner. She lashes out with her fists and fingernails. Because when you put your arms under Lorraine's and lift her from bed to wheelchair, the first place she thinks to grab and squeeze is the fat under your arms. Because when you try to brush Carl's teeth, he gets upset and bites your finger.

So how do we, as professional caregivers, avoid burnout, or in the worst case scenario, the newly-named "caregiver syndrome"? I believe that we must take some time out each day to give and receive love from our residents. We must remember what makes us love them each individually. And most of all, we must embrace our own lives with as much gusto as those people you meet for the first time everyday.

"I Can Laugh for Nothing!"

I'm not entirely sure how I fell into this job. I spent most of my college life working for spending money as a nanny for wealthy professors and doctor's wives. But suddenly I found myself on a year off from college, broke, and my third nanny posting in as many months had decided that they would no longer require my services, as they would "like to spend more time with our child."

So, I began scanning Craigslist for positions. Because Portland, OR is a city full of
twenty-somethings with bachelor's degrees and students earning said degrees, all the "cool" jobs were taken. I had given up hope and was half-heartedly clicking through postings and trying to decide how best to ask my mother (once again) to help me with my rent, when I came across the ad from Russell House. "Caregivers wanted for Alzheimer's care facility. No CNA required. Please apply in person."

And I thought, "Sure, I could do that."

On my first day working in the Alzheimer’s care unit, Peter Warren leapt serenely from his third floor window, and died as he hit the concrete of the employee smoking area. Blood mixed with ash and bits of tobacco as we looked down from the third floor, stunned. I’ve never been a person to set much stock in superstitions or signs of any kind. But some things are hard to escape. For some reason, this event occurring within four hours of starting my new job did not bode well.

I was prepared for fallout. I was prepared for confusion and horror and trauma. I was not prepared to turn around and see a woman in a purple sweatsuit, with wild grey hair and bulging eyes gleefully singing “Froggy Went A’Courtin’”, dancing mechanically and pounding out a staccato rhythm on the wall.

Every moment at Russell House is brand new. People who have lived under the same roof for years meet for the first time every day. Even something as tragic as Warren’s suicide failed to register. Everyone worried about how Peter Warren’s roomate, Jim, would react to his death. We told him that Peter was no longer with us, and he answered, “So, I don’t have a roommate now? Good. I like having my own room.” And he smiled and put a bluegrass CD on the small stereo by the window, closing his eyes, enjoying the music.

*** *** ***

What happens when we begin to lose our minds? Is there some essential part of ourselves that is revealed? or do we lose the things that make us who we are? I have a hard time couching the process of Alzheimer’s in such simplistic terms. In order to know exactly how the disease is effecting these people, I would like to get a time machine and go back to meet them when they were whole.

In their rooms, young versions of them stare out eerily from behind the glass of picture frames. It’s strange to see them as they were. Now prim women are replaced with wild hair and sweat suits stained with applesauce. Handsome gentlemen pile on four suit jackets, and their pants bulge with the volume of their adult diapers.

But it’s not all sackcloth and ashes. This place is not death’s reception area, as much as you have to be aware from day to day of these people’s mortality. No. This place is fun. For a population of people who are losing their minds, who’ve lost much of their families, who’ve lived long lives and are now sick and confused, Russell House is surprisingly full of life.

I want to use this blog in order to relate my experiences working with people suffering from Alzheimer's, as well as to spread information about the disease. Because these people have become another family to me. And they have changed my life