In Conversation With...Elaina Kaizer

First published in The Oxford Journal on Wednesday, January 16 by Sara Mattinson.

Elaina Kaizer has high blood pressure and “wonky” blood sugar and takes medication for anxiety. For a woman who just a few years ago worked full-time as a supervisor and walked an hour a day, this is not how she envisioned her health when she reached her mid-forties. 

As the primary caregiver for a parent with Alzheimer disease, however, Elaina did what most caregivers do: she put herself second to making sure her mother was safe and well and in her own home as long as possible. Actually, she likely put herself third because Elaina and her husband Brett have four children ranging in age from 12 to 27. 

Her mother, Maude, who is now 85, was diagnosed with Alzheimer disease in the spring of 2010 after a car accident revealed that Maude had been experiencing blackouts. Looking back, Elaina admits she can see early signs of her mother’s impending disease. 

“You notice some memory issues but you put it down to age. Once she was diagnosed, it all started adding up.”

The first sign was Maude’s reluctance to do big family dinners. 

“It was getting to the point where she was saying she couldn’t do it,” recalls Elaina. “She was scared she was going to forget things. You put that down to normal memory loss, to age, but now, going to a support group and doing so much research, I realize now I could have picked up on it quite a number of years ago had I known what to look for. Because Mom was always such an avid baker and cook, that’s what I should have picked up on.”

Elaina and her family live right next door to Maude’s home in Beckwith so Maude was able to continue living in her home after the diagnosis but in creating that safe space for her mother, Elaina ended up making a big sacrifice. A year after Maude’s accident, Elaina was forced to quit her job as a supervisor with Basic Spirit in Pugwash after a terrifying incident highlighted Maude’s memory loss. 

On days when her mother played Bingo in Pugwash, Elaina would pick her up at lunch and drop her off to visit with friends before going to Bingo. But one day, Maude forgot to follow the plan. 

“I received a phone call that Maude was wandering,” Elaina remembers. “She had left the Lodge after visiting and seemed quite disoriented. I was sure she’d just gone to Bingo.”

But Maude had never shown up. 

“No Mom anywhere. I couldn’t find her. I went back to work and she wasn’t there. My first thought was that she’d gone to the church. No. I was searching everywhere. I happened to see her walking by the hospital, up further. She hadn’t come down, she’d gone the other way. It’s such a panic.”

When Elaina picked her mother up, Maude didn’t remember what Bingo was. 

“It was so shocking to me when she said ‘Bingo?’ because Bingo was every week for Mom. It was a common thing. It would be the same as her saying ‘Church? What’s that?’ It hit me like a tonne of bricks. My mother was getting so bad. How was I supposed to keep working and take care of her?”

So Elaina made a decision that could affect her and her family for many years. 

“I went back to work for a little while but it got to the point where I couldn’t do it anymore. I left that job because it became too much,” she says. “I couldn’t have Mom at home and worry about where she was and what she was doing, if she would walk out into the woods and I’d come home from work and not be able to find her. So in May of 2011, I quit and became a full-time caregiver. I could have gone on stress leave but I didn’t know how long it was going to take so now I don’t have employment. And it’s very difficult to find another job.”

According to the Alzheimer Society of Canada’s website, family caregivers spent 444 million unpaid hours in 2011 looking after someone with dementia. That’s $11 billion in lost income and 227,760 lost full-time equivalent employees in the work force. Elaina is now part of those statistics. 

“I wish the government would provide for families who are looking after [parent with Alzheimer] at home,” she says. “There’s just not enough support. If it hadn’t been for my husband and kids, I wouldn’t have had any breaks.”

The Alzheimer Society offers several support groups in Cumberland County for people with the disease and for those taking care of someone with the disease. Elaina attends a group in Tatamagouche and it has helped her cope in part by providing insight into the reality of living with Alzheimer disease. 

“When I went to my support group meetings, they kept saying that my mother’s brain is broken and it can’t be repaired,” Elaina says. “You can repair a leg or an arm; my mother’s brain can’t be fixed. And you have to realize it’s broken and you have to adapt to her brokenness. She will never adapt to you again. There is nothing she can do; it’s what we have to accept. We have to adapt to her circumstances. I tried to make the good times good and get through the bad times.”  

Keeping Maude at home worked, at least for Maude, until last April when there was a sudden and dramatic decline in her ability to take care of herself; even the doctor said it wasn’t regular Alzheimer decline, that something had happened to accelerate her symptoms. When Elaina found cat food in her mother’s fridge but her mother couldn’t remember if that’s what she’d eaten for for lunch, Elaina was forced to address the issue of getting Power of Attorney over her mother’s affairs and a meeting was scheduled to assess Maude’s mental competency.

“She declined so fast, it snuck up on us so fast and,” Elaina sighs. “My problem was if I didn’t acknowledge it, it wasn’t happening. It took me awhile to come to terms with the fact this is the way it is, it’s not going to change and we’ve got to do something. Well, by that time, she had taken such a decrease, she was declared mentally incompetent. She had a complete breakdown during the testing.” 

By September, it was clear Elaina couldn’t keep her mother at home any longer. 

“We’d find her wearing the same clothes for three or four days,” she explains. “It was becoming a safety issue, too, because she was getting out and going next door to her house even though it was locked and we told her not to go.”

The move to the assisted living quarters at Centennial Villa in Amherst was as bad as Elaina feared it would be – her mother accused her of betraying her – but after a month, Maude stopped asking when she was going home and now is settled in. In fact, an overnight visit at Christmas was so disruptive to Maude’s routine and emotional state that Elaina realizes her mother will never be home again.

With her mother getting the care she needs now and a new granddaughter born at the beginning of the month, Elaina is hoping she’ll be able to get her health, and her life, back on track. 

“It’s not easy because you don’t know what your life is,” the 47-year-old grandmother admits. “A caregiver loses herself and becomes part of the person she’s caring for. You can’t reclaim that life. Your whole body and mind is immersed in it for so long, it’s like you become part of the disease.”  

Photo supplied by Elaina Kaizer

Why I Ask "Why?"

These medallions, as my husband's family calls them, are from World War One. They belonged to my mother-in-law's Aunt Jean (born in 1888), who nursed in Boston and joined the Army Nurse Corps for the US. I found them back in 2007 when I was tidying the basement here shortly after moving in. They deserved better treatment than a musty shoebox so I put them in a jeweller's box then into a dresser drawer.
Rooting through that drawer last year, I found the medallions and, writing for the newspaper by then, wondered if there was an interesting story behind them. There was, but not the one I expected.
When I asked my mother-in-law whose medallions they were ("Jean" was her middle name and it's not on the ID tags) and why they were in my husband's possession, she ended up telling me a wonderful, sad, moving story about a tragedy that happened to her when she was 26.
As a writer, there are two stories that are so important to me, it's like they inhabit my heart: one is being present for the death of my father, the other is this story about the baby my mother-in-law lost in 1954.
She has done me the great honour of allowing me to write this story for an important creative non-fiction contest; I am grateful that she trusts me to write it with grace and respect because it is such an insight into a woman's life in rural Nova Scotia in the 1950's.
Even without knowing this story, my mother-in-law, who is 84, is one of the strongest, stubborn, devoted, ladylike women I've ever met, but her story adds a depth to her life and character that I -- only knowing her six years -- need to understand. This story matters so much to me, I want it to matter to others.
As part of my editing process, I read my work-in-progress out loud, usually to my husband. I can't get through this piece without crying, no matter how many times I read it. For my mother-in-law's sake, I hope it does well in the competition. If not, there are other places to submit it. It's more than a story; it's a piece of rural history. Of herstory.

Morning Light

In the farm field next to our home.

Talk About Love

First published in The Oxford Journal on Wednesday, January 9, by Sara Mattinson.

A website for caregivers called onmemory.ca has this fact on its home page: 

“103,000 Canadians will develop Alzheimer disease or a related dementia this year. That’s about 1 person every 5 minutes.”

I look at that statistic -- one person every five minutes -- and it doesn’t seem possible. That’s SO many people. But it’s not a statistic you want to make up, and considering that most caregiving for people with dementia is provided by a family member, usually a spouse, at home or in a nursing home, it’s an issue -- a future pandemic -- we have to address. Yet how about this fact? Canada does not have a national strategy for dealing with those 103,000 people who will be diagnosed with dementia, a disease that cannot be prevented or cured. 

It’s time to get over our fear of Alzheimer disease, a fear that keeps us from discussing it with family members, health care providers, and politicians. We cannot continue to ignore the impact dementia has on families, employers and the health care system. This disease is not going away; dialogue, not denial, is needed now. 

Start by reading two particular books. Read them before you receive news that someone close to you has been diagnosed, before you realize that you are going to be taking care of someone with dementia. Read them before your own brain is enveloped by the fog caused by what my mother called “thinking for two”. Read them now because fear does not thrive when there is knowledge.

Read the novel STILL ALICE by Lisa Genova. There were things in that book that I wish I’d known when my father was first diagnosed. At the very least, stand in the book store and read Alice’s speech from page 250 to 254. 

Read I’M STILL HERE: A New Philosophy of Alzheimer’s Care by John Zeisel. When you watch your parent turn into a zombie because the nurse in charge of the locked unit wants everyone drugged because they are easier to handle, you wish you had other ways of helping that don’t involve drugs and restraints.

Information is key to avoiding the fear and ignorance that keep people with dementia from being treated as kindly as they deserve. I know.

The Alzheimer Society of Canada has launched a new campaign called, “See me, not the disease. Let’s talk about dementia,” because there is a huge stigma attached to the disease. As Alice says in the novel, being diagnosed with Alzheimer is like being branded with a scarlet letter A. 

I know. After my father’s diagnosis, I reacted the same way most people do: I treated him like he  was already incapable. Thankfully, I was given the chance to realize how wrong I was before it was too late. 

After my father had to be moved into a nursing home, every day I said to him, “I love you, Dad,” and even though he couldn’t say those words back to me, he responded in a way that meant he understood, and he always, always responded to the word “Dad.” I could see it in his eyes. He knew what love was and he knew who he was.

It’s also how I knew he was aware he was dying: when he reached the palliative stage and had come through drug withdrawal, his now-clear eyes told me he was afraid. 

Because that kind of awareness remains, it is imperative we get over our fear of this disease.  Fear, denial and ignorance cause more pain and suffering than they avoid. I received good advice during my years as a caregiver but much of what I learned came from my father as we stumbled along together. Could I have taken better care of him if fear hadn’t kept us from speaking about his illness? It might have made a difference if we’d been able to talk about how he was feeling on any given day. 

All we are called to do is meet our loved one living with Alzheimer disease where they are each day, to respond with compassion instead of fear.  A man once spoke to me about how upset he was that his mother talked to him like he was her husband -- his father. He needed to stop fighting the reality and accept the joy that his looks reminded her of the love of her life. 

And I would give my life to uphold this truth: The plaques and tangles of dementia do not affect the ability to feel love or to understand what the word means. Saying “I love you” every single day doesn’t ease the burden of caregiving but it certainly is a better place to come from than a place of fear. 

It’s not Alzheimer disease that we should be afraid of; it’s ignorance. Speak up, even if all you can talk about is love. 

Just Like Me, Already

It's not that I am anti-technology -- computers and email and the Internet have been amazing for writers -- it's that I remain wary at our total reliance on and absorption in. I'm kinda in the camp of "The machines are controlling their creators". Computers and email and the Internet also have created new places of hell for writers as well as teenagers and anyone who makes somebody mad.
Because agents and publishers expect writers to be using social media, I created a public Facebook page to promote myself. I refuse to use Twitter and I don't really see the point of Pinterest except to steal people's ideas without crediting them. All the other stuff out there I pay no attention to. Seriously -- a new online service that lets people post 36 second videos of themselves? No surprise the first users are celebrities. Besides, if I'm to write 1,000 words a day, I don't have time to be pinning and liking and oogling. My priorities make me a dinosaur in this Wifi world, don't they?
My Facebook experience is now three months along (That's the first make it or break it mark for relationships, you know. Three months is the point when you know -- if you're honest with yourself -- whether you want to get more serious with a person). It's hard not to become obsessed by the Likes. A writer creates and publishes in relative obscurity; we write by ourselves and usually receive little feedback on our work so Facebook could be a way to connect with readers. For the most part, people seem more interested in photographs than thoughts.
I was delighted to find this news story on my news feed today: "Is Facebook Envy Making You Miserable?"

By Belinda Goldsmith

LONDON (Reuters) - Witnessing friends' vacations, love lives and work successes on Facebook can cause envy and trigger feelings of misery and loneliness, according to German researchers.

A study conducted jointly by two German universities found rampant envy on Facebook, the world's largest social network that now has over one billion users and has produced an unprecedented platform for social comparison.

The researchers found that one in three people felt worse after visiting the site and more dissatisfied with their lives, while people who browsed without contributing were affected the most.

Read the rest of the article with this link....

http://ca.reuters.com/article/technologyNews/idCABRE90L0N220130122

Why I Go to the Woods

Whenever I start to feel that living in rural Nova Scotia is hurting my writing career because I simply don't get to meet people who can help me, I remember that writing is more important to me than networking and that this is the best place in the world for me to write. If I write well, I will find the people I need.
This belief, however naive it seems particularly stated so baldly as that, is underscored every time I go for a walk in our woods. We'd had enough of a melt then freeze the other day that I was able to walk across the snow without sinking down to my knees (I do use snowshoes but the dogs struggle in the deep snow and in following my footsteps, keep walking on the back of the shoes). We trotted up the land then across the field to the edge of the woods where there was more grass than snow. The wind rustled the needles of the pine trees and I could hear the wings of the crows overhead as they beat through the cold air. By the time we returned home, I had my entire next Field Notes column swirling around in my head.
I love that! Walking is the antidote to everything but I find it most effective for creating the opportunity for the ideas I know are inside me to pop into my head. So many essays are formulated while walking the woods and now that I've decided to write a novel (you're reading it here first!), the characters are chattering away in my head like blue jays above an empty feeder.
But that's not all. I needed inspiration for an essay that needs to be written; there are so few commercial markets for essay writers like me that I can't bring myself to not submit to certain competitions even though my writing isn't "literary" enough. Checking out an artist friend's blog, I discovered a poem she had posted. Now...I had been thinking about a certain essay already written because I had a magazine I wanted to send it to so when I saw this poem, I knew this was the inspiration I needed to expand that essay for that competition.
I love what that happens. Serendipity are what keep writers going. Plus beautiful writing like this:

How I Go to the Woods
by Mary Oliver

Ordinarily, I go to the woods alone,
with not a single friend, for they are all
smilers and talkers and therefore unsuitable.

I don’t really want to be witnessed talking to
the catbirds or hugging the old black oak tree.
I have my way of praying, as you no doubt have yours.

Besides, when I am alone I can become invisible.
I can sit on the top of a dune as motionless as an uprise
of weeds, until the foxes run by unconcerned.
I can hear the almost unbearable sound of the roses singing.

If you have ever gone to the woods with me,
I must love you very much.

In Conversation With...Rufus Black

First published in the December 19, 2012, issue of The Oxford Journal by Sara Mattinson:

It’s cold inside the small white building that sits on the edge of the parking lot at the corner of Main Street and Black River Road in Oxford but Rufus Black welcomes me warmly. I’m sure everyone who comes through the door receives a warm welcome, regardless of why they are here. 

“I think it’s 12 years since we built this building,” says  Rufus, chair of the Oxford and Area Food Bank Association, as he beckons me into the recently expanded space. “But we operated over in South Oxford for the first winter then on Main Street for awhile so it’s been 13 or 14 years.”

Rufus was one of a group of people who responded when the need for a food bank was first identified. 

“There was a need and everybody knew about the need because people were going to the town and looking for help. The other food banks were talking about it, too.”

Since the food bank in Oxford first opened in 1998, it has served 240 clients, some of whom are regulars “because of their situation,” Rufus says, but others come and go according to seasonal work or a  temporary layoff. The area served is the school bus district, which ranges from Westchester to Collingwood to Leicester and towards Pugwash. 

“One of our board members greets the clients,   fills out the paperwork and goes over all the rules,” explains Rufus. “We have a couple of volunteers to do the packing.” 

Standards in every box, whether for one person or six, include a pound or two of ground beef (which comes from a local supplier) and a loaf or two of bread which is donated by the local bakery at the end of every week. 

 “It would cost us a lot if we had to buy all that bread,” Rufus admits gratefully.

There are certain things the food bank must buy itself: milk and eggs, the beef. Other supplies must be bought if they are running out and Rufus says they are always short of the basic items like tomatoes and canned fruit, among other things.

He lists the usual needs as he looks over the shelves. 

“We go through a lot of potatoes so we have to buy bags of them all the time. Cereal is something we barely get by on all the time; we never have any surplus. Tea isn’t usually a problem but coffee, we often need that. And peanut butter. Sometimes we have to buy that.”

Every two weeks, the food bank also receives supplies from Feed Nova Scotia which has a distribution system set up all over the province. But, according to Rufus, the majority of the food donations come right from this community. 

“There’s only once or twice during the year when it gets pretty scary, when we’re buying more and more. It’s usually the early fall when there’s more demand, and in the spring. We don’t know why. There’s less food coming in and more going out. This past fall, we were spending more than $1,000 a month and going into our operating fund.”

Surprisingly, the usual budget for food items is $1,000 a month anyway because there are items that need to be purchased. So cash works as a donation just as well as cans. 

“Our community here has been really good,” Rufus is quick to state. “I do like to let the community know how much we appreciate the support because in general, our support meets our demand without any waste.”

While some food banks around the province are reporting as much as a 70 percent increase in the use of their service, Rufus says local demand is rising but at roughly 25 percent a year. 

“It’s been a gradual increase but no great amount. The demand might be close to double what it was when we started. But the demand is steady. We have more families now than originally. An awful lot of children. Probably 55 or 60 children on our client list.”  

That’s why there are treats that come off the Feed Nova Scotia truck, treats like chocolate bars and chips. 

“There’s always some that appreciate this so much,” says Rufus. “They have kids but not the income. They’ve been sick or lost their job. You can tell how much they appreciate being able to come to a food bank and get some help. We hear complaints about people using the food bank about wasting their income in other ways but that’s not our business. There’s a family, there’s kids and we’re here to help and do what we can. And we are blessed when we do it.”

After 14 years of dedication to the food bank and at the age of 78, Rufus says he sometimes asks himself why he keeps doing it. 

“I came across a scripture passage that reminded me. Deuteronomy 15:7-11. It talks about being blessed when we give. I volunteer in a lot of different things and can be too busy. My wife doesn’t drive and she’d like to get out and do things but I don’t have a lot of time. I’m going a lot. But what I’ve learned is that it’s better to give than to receive. That’s what that scripture passage says, that God looks after us when we give to others. That’s what keeps me going.”