Friday, July 10, 2009


It is more than two months since Mom died. Life isn't over but I am still snatching at thoughts as if they are moths circling my head. Other than a couple of emails, this is the first time I have written anything.
Family Caregivers' Network put a piece in their July newsletter, honoring both me and Mom. This is the link:

My sister, Nancy, and I traveled through BC last week. I had itchy feet and just wanted to go. While on that trip, I saw for the first time the destruction of the pine forests. The mountain pine beetle has run rampant through the province and will continue munching its way across Canada. It was a sad sight. So, my first writing attempt circles around death. Not surprising.

"My mother died on May 3, 2009 and I am struggling with my feelings. She shared her memories with me until I glowed with her life, suffered her pain and carried her with me.
Her death was relatively fast but her life was long. She stood like a lodgepole pine in a forest of elders.
When she died, the first thing I wanted to do was get into my car and drive. My sister and I did just that and drove through our province. Imagine my amazement when I found reasons to grieve for both my mother and the province she loved.
The mountain pine beetle has always lived in the lodgepole pine forests of British Columbia – the female chooses the already sick or damaged trees, exudes pheromones to attract other beetles to the tree. Her larvae live on the phloem, the bark of the tree. The tree responds with toxic pitch but the beetles are tricky. They carry spores of a blue-stained fungus, which are released as they bore into the tree. The fungus puts a stop to the spread of resin and allows the beetles to keep tunnelling. The tree ultimately dies.
Mom's killer arrived in the form of pneumonia. We responded with antibiotics, our personal toxic pitch but her killers mutated, spreading their own form of blue-stained fungus. The host died.
The pines' memories live on in the seeds in the cones – which need fire to germinate. The dead pines looming above the cone, which waits on the forest floor, are the fuel. Lightening – fire – cremation – new life.
Now the mountain pine beetle has taken the forest over. Our fire suppression program and our warmer winters have allowed the destruction of our pine forests to spread and run rampant. I saw the photos, I read the newspapers, but I had no idea what the death of an ecosystem looked like.
I gazed up at red-needled branches, blackly twisting against the sky. I thought of my mother – how I had my hand on her chest when she took her last breath. Her death signaled the need for her batch of seeds to take over."

Saturday, May 16, 2009

Without my mother now

It is May 16, 2009. I turned 60 yesterday - I always knew that nobody in my life would ever love me the way my mother did. I also knew that I would never truly be an adult until my mother died. On May 3, I became an adult.

My mother had always been the writer in the family. I dabbled. With her death, I am now a writer and the essays and columns I have had published are now somehow valid.

I began my writing when I began editing the columns my mother wrote during her years in East Sooke, the back of beyond, in the 70's. I took a sentence from one column, a paragraph from another, and put them together into a book.

We published the book quietly 10 2005 and sold 250 copies. I found I could write just like my mother - in fact, I wrote two of the columns from scratch about incidents that happened to her in the 1990's.

I went on to write humour pieces that were published as the "Last Word" in Monday Magazine and they paid me. I was hooked. I wrote articles for Senior Living and then branched out from my home town.

In 2007 I wrote an article about the experience of living with MS and MedHunters published the piece.

Later in 2007, Animal Wellness published "A Nose for the News" in Tail Ends. Also in 2007, "Go Grandma" was printed in Laughter Loaf.

The literary magazine, Kaleidoscope published "Cages", another piece about living with MS, in their Life Stories II edition. That edition was reviewed on

2008 was filled with caregiving. I was President of Family Caregivers' Network Society

I wrote about caregiving for the FCNS Newsletter and for Scrivener, a published quarterly by the Societies of Notaries Public of British Columbia.

In 2009, I again found my humour and Long Island Woman printed my column "The Manic Jogger" in April 2009.

This is a new journey and I'm excited!

Saturday, May 9, 2009

Mom's death

This is May 9 and I am trying to hold my thoughts and being together so I can speak at a memorial for my mother. Yes, she died on May 3 at 7:30 in the evening.

Oh, this is so sudden. Her small, easily dealt with infection became pneumonia which did not respond to antibiotics. One weeks she was at exercise class doing her own sort of aerobics, the next week she was in Emergency and four days later she died. For her last 36 hours, I watched every breath she took.

She knew she was dying, asked to be taken off any life saving measures such as antibiotics and, seeing as they were not working anyway, it made sense. She asked the doctor for a big white pill so she could just die. We tried removing the oxygen at that point but it was terrible - her blood oxygen saturation levels were in the 75% range and it was like watching her drown. She asked that the oxygen be put back on. The doctors gave her morphine to slow her breathing and she slipped into unconsciousness almost right away. She told me to go home and told the doctor she wanted to die just before the morphine took over.

I will write more but right now I need to get myself ready. This will be tough. So many friends who loved her so much will be there - right down to the waiters at the restaurant we went to every Wednesday after exercise class. I have many emails to read aloud - without crying. I can do it. But, as the music, 'Peace in the Valley' by Johnny Cash and "Amazing Grace" fills the room, I know I'll cry.

I keep saying that Mom is sewn into the fabric of my life but there are many friends around my with darning needles making sure I don't unravel. I will be fine.

Thursday, April 23, 2009

Small infection leading to additional confusion

On Monday night, I noticed added confusion. She said she is so tired. She seemed dragged down. I was sad, as a daughter might be when she noticed a downturn in the level of dementia. On Wednesday, Helen and I picked her up as usual for our exercise class. She said she didn't think she would make it through the exercises - she hadn't been feeling well.
"Not feeling well? How?"
"Oh, I'll tell you later."
During the exercise class, I began to smell the strong odor of urine. I wondered if it was her but she seemed to be doing the exercises as usual, no sign of distress, so I decided it must be someone else.
We went for lunch and Helen and I didn't notice any smell of urine. It was nice to be in our familiar restaurant where everyone knows Mom, they coddle her and tease her. She likes it there and it is like home to her.
During lunch, Mom tells me that she is having a terrible time with her bladder. She woke up through the night and it was like her whole bladder was burning. She has trouble getting the urine out, she's dribbling. She wears a light pad for protection of bladder leaks.
I immediately phoned the Doctor and told him I thought Mom had a urinary tract infection. They sent a nurse out that afternoon and Cipro was prescribed. The pharmacy delivered the pills to Mom.
I was at a dinner that evening and got to her place just after seven. When I opened the door, I was hit in the face with a strong smell of urine. I told her and asked her to change her pad. The smell went away immediately. I guess she had worn the same pad all day and with the infection going on, it smelled worse than usual.
She was distressed, feverish, had not gone upstairs for supper. I put the pills into her blister pack and she took one that evening.
The next morning, she is feeling much better. Amazing how fast those work.
Also amazing how a urinary tract infection can cause such confusion in a senior with some dementia. Boy, I know what to watch for now!
But what if there was no family caregiver. She had difficulty telling me what the problem was, fumbled around with words and a lot of "Oh, I don't know".
But, celebrate the day! And Cipro!

Friday, April 10, 2009

New confusion

Mom's birthday is over. She is now officially in her 96th year. Think of the changes in the world in her life. She remembers being 15 or so, hearing people talk about the radio. "Oh," she said,
"I don't think I'll ever like radio." But the whole radio wave thing has led to so much, TV, computers, cell phones and on and on.

Every Wednesday I pick a friend, Helen, up at her place, we go and pick Mom up and the three of us go to exercise class. Mom does quite well, even through the 10 minutes of cardio. She swears every week that the class is getting tougher - but she makes it.

Then the three of us go to the Apple Tree Restaurant for lunch. They know us there, Scott the waiter teases us, Mom hits him with her cane, he tells her not to touch what she can't afford, and so on. We have fun.

This week we left exercise class and headed up to the Apple Tree.
"Barbie, I know I should know this but where are we going?"
"We're going to the restaurant for lunch."
"Oh, what restaurant?"
"We're going to the Apple Tree."
"Oh, where is that?"
"It's the restaurant we go to every week at the Hillside Mall."
Then she says, "Oh, I remember now. Of course. It's the one that Barry works at."
"His name is Scott."
"Oh, where did I get Barry from?"
"I don't know, Mom."

A very bad milestone. She forgot the Apple Tree. I am away this weekend and I hope she's okay. I spoke to the man who sits at her table in the independent living place she lives in and he knows how confused she is but he enjoys her just the same. Her humour comes out and they kid one another all the time. It's good for her. I am comforted that her friends there will protect her as much as they can.

I'm off and away.

Wednesday, April 8, 2009

The first of several 95th birthday parties

My sister and I took Mom out for her 95th birthday on Monday night. We went to a restaurant the three of us always go to - the owners, Frank and Nula, know us well. Dinner went well. We gave Mom some flowers and had the gifts of clothing waiting.

Frank came to the table and gave Mom a bottle of Baileys liqueur for her birthday. Mom did not seem to understand what it was. She fumbled around trying to figure out what to say.

"Mom, why don't you thank Frank for the Baileys?" I prompted.
"What bottle of Baileys?"
"This one right here. Frank just gave it to you for your birthday."
"Oh, did he give me a bottle of Baileys?"
By this time Frank had vanished to seat another table.
A short time later Nula came to the table to wish Mom a happy birthday.
"Hello, Nula, dear," Mom says
"I wanted to say happy birthday to you," said Nula.
"Oh yes, I'm 95 you know."
Again I prompted, "Mom, maybe you should thank Nula for the bottle of Baileys. It's from her, too."
"What bottle of Baileys?"
At this point Nula said she had to get back to work and we said our goodbyes.
"Thank you for coming," Mom said, as if she was having a party and Nula had come to her party.
I smile when I think of it.

Every night when I let me dog out for the last time of the day, I watch the ants from the colony that lives, apparently, on our roof. The busy worker ants walk up and down the brickwork on a particular trail and I watch dozens of them touching each other's antennae as they pass on their familiar route. I enjoy them.

A couple of days ago, downstairs business owners sprayed the back wall of the building to try to get rid of the ants. I went outside, heard the sprayer and smelled the poison. I'm sorry, I felt a bit sad for my evening friends. Get over it, I said to myself, they are just ants.

Last night when I took the dog out, I watched as one lone ant wandered, confused,alone up the brickwork, trying to find the trail that was so familiar to the ants. It would stop, feel with it's antennae, trying to find the pheromone trail left by former ants. It passed another lone ant going down the brickwork, they touched antennae and both of them wandered off.

I couldn't help comparing them to the workings in Mom's brain. Her thoughts used to tumble over themselves as if following a pheromone path, touching each other, finding humour in the trails her thoughts wandered. She found food everywhere she went - she passed it on, she fed my soul with her laughter.

Now her thoughts wander like these poor poisoned ants. Sometimes she will find something familiar and follow that path for a while but she then staggers off into unfamiliar territory again. I'll keep an eye on my ant colony - I'm really cheering for them and I hope it's not too late.

Today when I see Mom and take her for a surprise lunch with a few friends to celebrate her birthday, I'm cheering for her, too. I'm hoping her little colony of thoughts and ideas find a familiar path to follow so that she can enjoy herself. And feel fulfilled and loved.

That's all for now. Must get ready for the day.

Sunday, April 5, 2009


I am working on the concept of resiliancy - I need to be resiliant in order to deal with the marathon of dementia caregiving ahead of me.
First I need to "accept" Mom's dementia and I have a problem with that "accept" word. The picture of me, throwing up my hands accepting defeat bounces around in my head. No definitions I have seen so far have been able to budge that picture off the front page of my brain.
In a Family Caregivers' Network educational session I took recently, the following definition of "accept" was spoken and I am taking it on board as a tool I can use.

Accept - humbly letting go of things you cannot change or that over which you have no control.

That works for me. Letting go suggests choice. I like choice. So, accepting is no longer rolling over and playing dead.

I have also just finished a six-week course at the Alzheimer Society in Victoria. I learned so much about the inner workings of dementia - not the medical part but the behavioural part. I also learned a lot about grief and the emotions that are stirred up when one is grieving.

In looking at my own grief, I realized that nobody will ever love me the way my mother loves me. When she dies, the years of feeling that love will be over. In many ways, I am losing it now as she changes. That's a tough one for me.

At the same time, I know that I will not truly be an adult until my mother dies. Another scary thought. I'm sixty and have never known life without my mother. What will that look like?
It will be a natural transition, a natural cycle of life, and it would have been nice without the constant sadness that I feel now. And without the fear Mom feels now as she knows she's losing her grip. The blessing is that she only knows that she forgets what she knows she should remeber. Forgotten things - she has no idea she forgot them.

I think this may be the toughest type of grief - Mom is still here, looks the same, sounds the same but she is not the same. The "she" of her is missing. Little chunks of her melt and fall off like the collapse of the glaciers. Each day I notice another change and I celebrate none of them. It is a constant reminder of "what is" compared to "what was". Daily sorrow.

But today she sounded well when I phoned - she will be happy to see me this afternoon and it will be a surprise for her, even though I told her I would see her this afternoon.
"Oh, Barbie, why didn't you tell me you were coming?"
Ah, another day.

Tuesday, March 31, 2009

History of Barb's Caregiving

This caregiving of Mom is really only a continuation of family caregiving I have done since the early 1990's. In 1990, I was diagnosed with multiple sclerosis and had a bad exacerbation at the time. By fall of 1991, the worst of that flare up had passed and the residual damage remained. In August of 1991, Dad had a seizure behind the wheel of his car and could have killed himself and Mom - his driver's license was taken that day. He already had emphysema. One week later, Mom was told she had macular degeneration and was going blind.

In 1992, my husband was diagnosed with rheumatoid arthritis. By 1996 he was in bed, watched TV, used the bathroom and returned to bed. They gave him morphine for the pain.
Also by 1996, Dad was in the hospital over and over with small strokes (TIA), congestive heart failure and worsening emphysema.
In 1997, Dad died on Sept 30.

One of mom's brothers, Johnny, presented with symptoms of dementia. His wife was already in long term care and there were no other relatives in town. Johnny had no children. So, I took over this life as well as I could. He was the sweetest man in the world, told me long involved stories about people who parked in front of his building. He believed they were breeding and selling dogs from their cars. By March of 1998, he was in long term care. His dementia was extremely aggressive and he died in November of 1998.

Then Mom's sister, Joan, presented with dementia. No relatives in town, widow, her daughter lived in London - came over when she could but had a job.
From Joan I learned how to laugh again. I have a story about taking her shopping.

The Great Shopping Cart Caper

Most of us who are family caregivers would call this a thankless job. My mother, who is blind, believes that in my heart of hearts, I really want to go grocery shopping with her, not with my husband and certainly not by myself. The idea!
But within this thankless job there are moments of pure pleasure, if you allow yourself to see them. Taking confused aunty to Safeway was always an exhausting but oddly stimulating afternoon. She would lose her cart and take someone else’s. I would find her wandering the soup aisle, her favourite place, and notice a large salmon and three turnips in her cart.
“Joan, is this your salmon?” I would ask.
“What salmon?”
“This 14 pound salmon right next to the turnips.”
“Someone stole my buggy,” she would cry out, and the search would begin for a puzzled shopper wondering what happened to her fish and why it was replaced with three hand picked sticks of celery. We would transfer the cans of soup from one buggy to another and carry on until I next took my eyes off Joan and she resorted again to the “Great Shopping Cart Caper.”
Mother would always be with us, too, and it became my greatest wish that I could have a leash for both of them. Mom would be wandering along peering closely at the Kotex boxes wondering if they were cereal, Joan was in the soup aisle and I was looking for both of them.
The upside? When Joan moved out of her house we had enough soup to keep the Mustard Seed going for a week and enough Kotex to insulate our wall.
We would then go to lunch where Joan would say in her loud voice, “There are a lot of fat people in here today, aren’t there, Barb. Would you like to taste my soup? And what will I do with that salmon?”

Joan died in the early 2000's - cancer. I missed her terribly, despite the fact she was a handful. that left my husband with RA, my blind mother and me.

Coping with all of this took the help of many - primarily the Family Caregivers' Network Society. Their support groups, phone support and education programs literally saved me. I will talk more about them in my next post.

Sunday, March 29, 2009

perseveration aka hell

Had a bad week - Mom very obsessed with one bodily function - tells me again and again that the doctor changed the medication and that's why she's having this problem. Doctor changed the medication two years ago so this was a simple problem - she ate something wrong or has a touch of a flu. I tell her this. She argues - tells me that the doctor just did this change. Everything is compressed now. Everything she remembers has just happened. I tried to reason with her, she argues, I explain again, she argues until I finally got mad and yelled. Was very ashamed of my own behavior in the situation. I find it hard to realize that mom, my bright intelligent mom, is now unable to learn.At the Alzheimer meeting that night, I cried. So disappointed in myself - partly that I could not make her "get it".Learned that what she was doing is commom with dementia. It is called perseveration. It happens when one idea cycles and cycles through the brain. Nothing can change it. Useless to argue, lecture, try to teach or try to fix. "You know what perseveration is.....per per per." That joke was made at the table and I laughed. I now have the tool I need to deal with future cases when Mom is driving me crazy circling an idea. I can think "It's perseveration - per per per" and have a private giggle - just for me.When I saw her Friday, she had forgotten all about the intital problem. Yeah!!!!
March 29, 2009 5:31 AM

Friday, March 27, 2009

Today I comfort myself by re-reading an op-ed I had published in our local newspaper in response to an editorial "Help Also Needed for Caregivers"

The editorial states that "only about one in twenty of the caregivers said they were not doing well." This figure alone is serious enough but it's nowhere near the whole picture.
If I was asked today, I would say I was doing well. I am. I have health problems of my own but they are taking second place in my life. That's where they should be. If you asked me if I was happy, I would say yes.
Then ask me if I live my life with a deep-seated sense of sadness and dismay and I would say yes, because that is true. I currently caregive my mother, who is 94 and blind. There are moments and days of joy, but the sadness is there. I lose a bit of her every day.
I no longer expect my mother to put her arms around me and comfort me if I have a loss – instead I imagine Mom lying on her side in the palm of my hand. I feel her frail body while I hug her and she tucks her head under my chin.
I love Mom to distraction and yet the load of being the repository for her memories is heavy. Being her best friend all the time weighs on me like the weight of the Dorian Gray.
I am overloaded by the need to be alert all the time. I fight to unclench my teeth despite my determination to understand that her brain has lost its elasticity and some of its synapses. I must always be here. She deserves that care.
My friends don't want to hear about my issues with caregiving, home support and loneliness. Balancing my life is my issue, known only to myself. When I get short with Mom, which I do on occasion, the guilt is mine – even when she forgets that it even happened.

This comforts me because it brings me into a large community of family caregivers and I feel less insane.