Monday, December 31, 2007

Reflections of 2007

It's that time of year again, where people think back on the year as a whole.

Was it a good year? Was it bad? Have we learned anything? Gained some good old wisdom with each passing year?

The best of the year for us was the birth of two grandchildren. A girl and a boy.

The worst was Hubby's condition deteriorating. His oxygen needs increased dramatically after a hospitalization back in April.

But as the days march on, we are learning to "dance in the rain", rather than "waiting for the storm to pass". As time goes on, I am beginning to accept this illness and our situation. I don't feel the need to vent anymore (at least not today).

Wisdom is about accepting the things we can't change. And we can't change COPD. So we learn to live with it. Somehow we muddle through.

I look back on 2007 and give thanks that we have each other, our families and friends. We have a warm home and food on our table. And electricity!


Saturday, December 29, 2007

Grandma gifts OR through the eyes of a child

"What would you like for Christmas, Dad (or birthday or father's day)?", I asked as a child.
"Smiling faces, nobody fighting", was his constant reply.
"Nooooo", I would wail. I can't wrap that up for you! What do you want that I can wrap up?"
Dad would only smile and repeat his mantra.
Frustrated, I would tell him about Susie who was buying her father a tie or a pen and pencil set - typical gifts for fathers back then.
"I just want to see everyone happy" he'd say.

Mom would gently take me aside and suggest I make Dad something - a card or a picture. Even that sounded dumb to my childish ears. I could draw him a picture any old day. That was not a special enough gift for my Dad.

Time changes, years pass and I find myself in my Dad's shoes.
My most precious gifts are the ones my grandchildren make for me.
A wobbly outline of their hand, drawn in a bright red crayon, fingers fat as sausages.
Pictures of a skinny house with no windows and a chimney pouring out smoke on a bright summer's day (as evidenced by the stick-like flowers and huge yellow sun).
A sparkly, sticky glob of glue - that was supposed to be a Christmas ornament.
A gingerbreadman cookie with a bite out of it.
A hard lump of playdoh - "grandma, I made you a camel!" (what in the world would I want a camel for?)

But the best of the best are the pictures of people - from the child's perspective. Gigantic mothers and tiny children. Baby brother who is as big as Dad. Grandma or Grandpa who take up the whole page - or only a small corner of it. People missing ears or necks; someone wearing glasses who normally doesn't. People with long legs and short arms - or short legs and long arms.

It is such a joy to watch their little eyes light up as they proudly hand you their gift - or eagerly unwrap it for you.
"I made this all by myself!"
"Really?" (I could never have guessed).

The whirlwind years of bringing up my own children have come and gone with lightening speed. Now that I'm a Grandma, I have time to reflect, to cherish the really important things in life.

Now I understand what my Dad was talking about all those years ago.

Thursday, December 27, 2007


A new generation is born! Grandchild #6 was born yesterday - the day after Christmas - 3 weeks early!!

A healthy baby boy. 6 lbs. 13 oz. - exactly the same birthweight as Grandchild #5 - a little girl, born January of this year.
Looks like 2007 was a good year for our family - with two new little ones to carry on the family traditions - adding some leaves to the family tree.

How will our world look to these little ones over the next few years?
They are growing up in a world where fast-paced technology is the norm. Reality shows make you feel like you really are in the middle of the jungle or whatever the scenario. I remember how excited we were to get a black-and-white T.V. - back about 100 years ago or so. We had our choice of 2 channels - wowie!

What new developments will they see in their lifetime? What other forms of communication will they experience as our world evolves?

Food for thought as we look towards the future and prepare for the New Year ahead.

Tuesday, December 25, 2007

Untangling Christmas Spirit

Ahhh Christmas is finally here! What emotions do this magical season conjure up for you? Loving, giving, joy, happiness, abundance (or lack of), religion, spirituality - all of the above? None of the above?

Christmas is for everybody, but it's the children that turn it into magic: Santa flying over the rooftops, reindeer hoofs and jingling bells, sugar cookies, chocolate milk and sparkly eyes.
Watching a child unwrap a present on Christmas morning is truly magical for me. Capturing that little face on camera as it transforms into a look of pure joy, is music to my soul.

I went to my daughter's on Sunday (Dec. 23) to celebrate our Christmas. Hubby stayed home because he doesn't go out anymore and it would be too chaotic and noisy if we had Christmas here.

Being flexible is part of my nature. We don't have to celebrate on the specific day. Life is complicated enough - there are in-laws, out-laws, out-of-town relatives, etc. etc. etc. So we celebrate Christmas and other holidays when the time is right for everyone.

I arrived at my daughter's loaded with goodies. My granddaughter had just come out of hospital, so Daughter hadn't had a chance to prepare much. That meant I brought the turkey, stuffing, cranberry sauce, crisp, raw vegetables and dip and cranberry loaf and shortbread cookies for dessert. This grandma had been busy.

A while later my son and his family arrived. The children looked happy and excited - the parents exhausted. We opened gifts first - no sense making the kids wait until after the meal. I've done that before; it doesn't work. The kids are too wound up to eat - they just want the gifts. And parents become short-tempered. Not the kind of atmosphere to celebrate Christmas.

I was so proud of myself - I had bought Youngest Grandson a " Little People Farm" which required batteries (I didn't realize that when I bought it), so before wrapping it up, I sifted through the kitchen drawer, found the appropriate batteries and taped them to the gift. My daughter-in-law was ecstatic.

"I hate it when the toys need batteries and no one thinks of including them!"
I can understand her feelings. I'd be upset too, if the first thing I had to do was run out and buy batteries.

However, my pride turned into embarassment when I discovered the digital cameras ($20 at Walmart - not expensive ones) I had given the older grandkids needed those dreaded batteries. Had I known, or read the instructions (they make the print sooooooo darn small, I can't read it) I would have bought the frigging batteries and everyone would be happy. Oops!

Sitting around the dining room table, stuffing our faces with turkey, my 6-year-old grandson must have been talking effusively about the gifts he would be opening Christmas morning from Santa (I personally don't see anything wrong with that. I guess his mother thought differently).

"Christmas is not just about presents," she admonished "it's about Christmas Spirit, about Baby Jesus".

Immediately smiles vanished to be replaced by sober looks.

"Oh yes, Older Brother said - this is Jesus's day."
"Jesus's birthday, you dork" said his 11-year old sister.

So - what is a grandma to do?
Well, this one started singing "Happy Birthday to you!" Happy Birthday to you"

The kids looked up at me in surprise.
"Happy Birthday to Jesus, Happy Birthday to youuuuuu"!

The table erupted in laughter, bringing back those precious smiles and happy faces once more.
Their mother was not amused. She later fell asleep on the couch.

I felt just fine - Somebody had to untangle Christmas Spirit and bring it back to our table!

Saturday, December 15, 2007

Being thankful for little things

No, this is not going to be a soppy blog about counting our blessings or being grateful for what we have - I'll probably do that one as we get closer to Christmas - or maybe after.

In my new role of "caregiver for everything in the house too" I went down the basement to get our decorations for the tree. We do things in stages around here. The tree went up a few days ago - now it's time to decorate it.

Turning the corner into the furnace and storage room, I innocently walked right into a puddle of water.
Yikes! Sopping feet!
Our furnace was going full-blast, but there was water was seeping out from underneath.

I quickly threw some old newspapers on the water, hoping to absorb the worst of it. No I didn't feel like getting old towels (which would be much more absorbant), I'd only have to throw them in the washing machine afterwards. Newspaper I could shoot out, or recycle.

It was the humidifier leaking. I had to help hubby down the stairs and into the treacherous furnace room so he could advise me where the darn "turn-off valve" was and which way to turn it off.

Climbing on a stool, scrunched under a furnace pipe, over the water-heater (how on earth do big, strong, service men get into tiny spaces like this?) I turned the valve. The water continued to drip. I turned it the other way - it still continued to drip.
O.K. time to call the service people. Hubby'd had enough and went to take a nap. I called Service.
"Just turn off the valve and we will be in your area on Monday"
Monday? This was Thursday. We're suppposed to have a leaky furnace for 4 days - are you nuts???
"Lady, just put a pail under the leak and turn off the valve."
"I did and it still leaks and I don't want to have a leaky furnace for 4 days. It's dangerous!
"Well, what can we do?"
I could have told him what he could do, but I did want them to come to the house.

Back downstairs to check. Maybe magically the leak had stopped. No such luck. I was really getting angry now. How dare they expect me to live like this. What kind of service is that?
I looked at the make of humidifier - Honeywell. They must have a number to call. I found them in the phone book and called "technical support".

To make a long story short, the fellow in "technical support" told me to check and see if one of the tubes (inflow or outflow) was blocked.
I did.
One of them was.
I poured warm vinegar water down the tube to try and break up the sediment.
It didn't work.
In desperation I untwisted a wire coat hanger, straightened it out and shoved it down the still mucky tube.
It worked!!
Hubby woke up from his afternoon nap to find the humidifier running smoothly and the water cleaned up.

I waited until the next day to call the furnace company - just in case.

"You can cancel the service call scheduled for Monday - I fixed it myself!" I told the girl proudly.
"Good for you", she answered "you saved yourself a lot of money. Why don't you go and buy yourself a nice expensive Christmas present?"
I laughed and told her I 'd buy her one too.

In the big picture of Life, this is just a drop in the bucket (no more water, puleese!) a little thing, but I am thankful I was able to solve the problem on my own.

Monday, December 10, 2007

O Christmas Tree

As the years go by, I find myself taking on more and more of the workload at home.

Over the weekend I decided to shovel a path from our driveway to the back of the house where the oil tank outlet (connection? pipe?) was, so that when the "oil delivery man" delivered our home heating oil, he wouldn't be stomping through drifts of snow, cursing us as he went.

I looked in the garage where we usually keep the snow shovel. Staring back at me was our garden rake. Rake? Nobody's used that since sometime in November.

Usually my husband quietly goes about his chores; putting away the gardening tools, and bringing out the winter ones. Knowing when it's time to winterize the car, clean the windows or gutters. Just like I would effortlessly serve a roast or a stew at dinner. You don't see all the work and preparation that goes beforehand. But dinner is served, clothes are washed, seasons change and so do the tools.

I've relied on Hubby for so long to do those little things, but now I have to face the fact that he can't anymore. So I dutifully stomped through the snow to the toolshed, forced open the door against the snowdrift and found the shovel crammed in towards the back. Nuts! I'd meant to bring the rake with me, but had left it back in the garage - oh well, it can just stay there for the winter.

On to the buying of our Christmas tree . I didn't have far to go - just to our friendly neighbourhood grocery store parking lot. Much easier to drive home with a tree stuffed in the trunk if you don't have far to go.

I bought a small one so I could easily manoeuver it. Hubby was eagerly waiting for me as I parked in the garage, opened the trunk, untied the tree and finally hauled it into the house.

The stand was ready and waiting for us in a cozy corner of the living room. I picked up the tree and plunged it into the stand. Hubby helped to support the tree while I jiggled it about trying to center it in the stand. Then I let go to turn those long screw-things into the base of the tree.

Hubby couldn't hold up the tree on his own.
I grabbed the tree and saved it from toppling.

Hubby was upset.
I was shocked.

This was a small Christmas tree - not like the big ones we used to buy when all the kids and grand-kids came over to celebrate.
It was not a heavy tree and yet hubby could not hold it up.

We finished our task and then took a "time-out". I put on a pot of coffee and lit a yummy-smelling apple-cinnamon candle (even though the room was bright with morning sun); slid a soothing CD into the player. We sat together on the couch, talking about the coming season, our plans for next year and made predictions as to who was going to be the first to give us another grand-child.

Eventually Hubby's saddness evaporated and we went on with our day.

It's so easy to be lulled into feeling like everything is fine, normal, o.k., but when something unexpected happens, reality sinks in and back we go to the bottom of the well.
The trick is to pull ourselves back up again. And after a while we did.

Sunday, December 9, 2007

Christmas shopping

That time of year again!
This year I said - "I don't have the energy to go all out. We'll just have a practical Christmas"
I meant - just the basics. I usually give my children money to spend however they want as well as something small, like candles, a blouse, chocolates, - just so it's not only about money.
The grand-kids I like to spoil.

However, this year I warned everybody that it would be simple. I asked my daughter-in-law what the children needed in the way of clothes. I planned to buy them each a toy and then something "practical".

"Socks" she said.

O.K., I thought - I can do that.

So, I marched into Sears and bought mountains of socks - some spiderman, some Joe Cool (whoever he is) and some pretty ones and some baby ones. I agonized over the sizes (I did have their sizes written down on a piece of paper, but somehow they didn't match the socks I was holding in my hand).

Sitting on the floor, I kept referring back to the paper: Justin needs
size 5 - 7. Is that shoe or sock? Some of the socks only had the sock size on the pack. Other ones had both shoe and sock size. Hmmm - this was harder than I thought.

I decided to sit there for a while to figure things out. Glancing up I saw a women who looked like she was in her 80's. "Don't worry, dear", she said "in a few weeks it'll be all over". She actually looked much calmer and less flustered than I was.

That was back in November. I thought I'd get an early start. Somehow, no matter how early I start, the days creep up and before we know it - only a few days left to finish shopping.

After visiting with my baby grand-daughter, a couple of days ago, I made the mistake of going into Toys-R-Us on my way home. I walked in the door and was immediately assaulted by all their Star Wars, Transformers, Pirates of the Caribbean, Dungeons and Dragons toys screaming to be bought. I hemmed and hawed and walked around until I was hot and thirsty and fed up. Intending to buy something small to go along with their toy and socks, I gave in and bought really fun and exciting and expensive toys after all.

I do the same thing every year.

Every year I start off saying "let's do just the basics - there is no need to overspend" and every year I buy more than I intended.

Ah well - Christmas is for kids and they're only little for such a short time. And somewhere in Santa's book of etiquette, doesn't it say that grandmas and grandpas are supposed to spoil their grandkids at Christmas time?

Thursday, December 6, 2007

Flu Shot

The community nurse came to our home to give hubby and myself our flu shot. This is the first year we have not been able to go to the clinic.

Last year, we drove in the car, but hubby was not able to get out of the car to walk into the clinic. It was cold outside and he would have desaturated too fast.

I went in and registered both of us and then asked if the nurse could give him the flu shot in the car. I fully expected them to say "are you kidding?"

But, surprise, surprise - they agreed.

The nurse put on her coat, walked over to where we were parked in the handicapped spot and jumped in the front seat. She gave hubby his shot right there.

This morning, the nurse was scheduled to arrive in our home at 10:00. A decent time - not too early; not after lunch when hubby usually sleeps.

Well, hubby had to prepare mentally for this visit. He made sure he was up early. He took his time reading the newspaper while drinking his morning coffee. You can't rush when you have COPD. You become short-of-breath and have to stop. That makes it take even longer.

I got up, drank my coffee, and wrote my "morning pages" (see by Julia Cameron for an explanation of "morning pages"), then went into the kitchen and had breakfast. Hubby came in and sat down to eat too, but I was off to the races. Bing-bang up in the shower, blow-dryed my hair, dressed, make-up, made the bed, like I was going off to work again.

Hubby was still eating his toast.

I finally got him upstairs an hour before the nurse was due to arrive. It took him that long to wash, dress and take his puffers.

By 10:00 we were ready and waiting.

After the vaccines were done, hubby had to go and rest.

"Whew" he said, "what a morning!" Then we both looked at each other and laughed.

Our "morning" as it was today, used to take "minutes" in the old days.

At least we can laugh about it. And at least we still have each other.

Monday, December 3, 2007

Saved by the gong!

Chi gong, that is. Yesterday morning I got up feeling draggy. It was cold outside. Even the squirrels were hiding. I knew I had to do something or I'd drag around all day feeling like a lump.

I went down the basement and put on an old Chi gong video. I hadn't practiced with that particular one in months.

In summer, I practice my tai chi or chi gong outside in the backyard or on the deck. Where have those golden summer days gone? By the time I accept that summer is really gone, fall has come and gone, winter is usually half way done too. Is this part of "old age slowing down?"
Who knows? Maybe it's just the stuckness I feel at this time in my life - wanting to hold on to Life Before COPD.

In my younger days, the seasons just flew by. Summer clothes had to be put away, school clothes bought, pumpkins, Thanksgiving turkeys, Halloween, and the next thing we knew it was time to burrow down the basement, to locate last year's winter boots - and hope they would still fit. Most of the time they didn't.

Now I watch my children going through these seasonal antics and wistfully wish I were back there again; working and child raising and absolutely, passionately thrown full force into life. Back then I was bemoaning the fact that I rarely had a moment to myself. Now I have lots of those moments. Wouldn't it be nice if we could somehow balance all that out?

Back to chi gong. It worked! The flowing movements and deep breathing brought my stagnant energy back to life.

I much prefer the gentleness, the focus on balance, the integration of my brain in remembering the sequence of those movements, the proper positioning of hands, arms, legs - rather than any aerobic or cardio program or even weights. Oh, they have their place, but...

I prefer the refreshed feeling I get, when I finish a session; the paradoxical energetic, yet calm and peaceful sense of well-being, that everything is right in my world - just for a little while.

Thursday, November 29, 2007

Dark days

I feel like I'm in the middle of a dark tunnel headed towards the center of the Earth. It's a scary feeling.
Our days are so short at this time of year. No sooner does the sun get up and we go about our day, but then it's mid-afternoon with the light fading towards darkness once again.
Some days I don't feel like I've accomplished a thing, but then maybe it's not about accomplishing.

Live life in the moment

.... is what we're taught. But what if you don't like the moment? What if the moment is dark and you'd rather be on a sunny, warm beach?

Some people don't mind this dark time of year. For them, it's January and February, the two coldest months that are hard to take.

For me, January and February are cold, but the days gradually become longer and longer. Sunshine pours through our windows and my plants put on a growing spurt. It's as if they are waking up and preparing for spring.

Once we turn that corner on December 21st, where our days lengthen and the nights become shorter, I start to feel better. I can see light at the end of my dark tunnel.
Darkness is retreating, the busy-ness of Christmas is past and January brings a new year, new hope and a promise of the coming Spring.

Hubby also is feeling the dampness in his bones. He doesn't go out at all. He sleeps more than usual. It's like he's in hibernation mode.

I've hung a birdfeeder on the clothesline in our backyard, just outside the kitchen window. I had nailed the cage-like suet feeder to the big old oak tree (which I've named Grandfather Oak) but the squirrels attacked it, digging out the peanuts and seeds with their sharp paws.

I wondered where I could possibly hang it out of the squirrels' reach.
Ah ha - the clothesline! Surely a clothesline would be too thin for them to walk along. I'd hang it right in the center.

First we got some chickadees, woodpeckers and even a few blue jays. The jays looked so big trying to hang on to the feeder and peck away at the goodies inside.

After a while the inevitable happened - the squirrels found it. They scurried up and down Grandfather Oak trying to figure out how to traverse the clothesline.
Then they sat on the ground directly beneath the feeder. Rising up on their hind legs they sniffed the air trying to figure out whether or not they could jump up to it. Now maybe a flying squirrel could do that, but not these plump, solid critters.

They tried jumping from the hedge and fell short. Then, one brave squirrel hopped on the pulley from the tree. Venturing out, it twisted and turned the clothesline in its little paws in an attempt scramble to the feeder.

Annoyed, I thumped loudly on the kitchen window. The little critter lost his balance and fell to the ground. Boy, did we laugh! Not that it stopped him, of course. He tried again and again, only to be "thumped at" until he fell off.

We did have some enjoyable moments watching the squirrels' antics; so living in the moment can be fun, making one forget those dark problems for a little while.

Thursday, November 22, 2007

"Life is not about waiting for the storm to pass....

it's about learning to dance in the rain."

I read that on another caregiving blog. But, boy is it hard some days to dance in the rain!

Our magical snowfall of yesterday has turned into an icy downpour. The trees look pretty, but there's a nor'easter brewing and that means more snow before day's end.

No matter how pretty the trees, bushes, clothes lines and power lines look covered in ice, that's a recipe for disaster. Heavily coated power lines break - and that means a power failure. Definitely not good for someone on an oxygen concentrator. Oh, we have a back-up system - that's an absolute must - but it's still a worry.

Days like this I truly appreciate being a grandma - I don't have to rush out in this yukky slippery weather to go to work. I can stay at home, warm and cozy, relaxing with my hubby.
However - just because I don't have to rush out to a job, doesn't mean I have to stay home, does it? Apparently not - weather notwithstanding, I decided to visit my daughter. It's her 33rd birthday today!!

Hubby looked a little forlorn as I merrily jumped into the car, birthday gift stashed in the backseat and carefully backed out of the garage. I think he was worried about the icy power lines snapping and leaving us without power ( a very legitimate concern)!

Well, I didn't get very far when I realized that this was no day to be on the roads. The weather report was right (for once) and it was better to go back home. Cars were skidding ahead of me and someone was in the ditch, awaiting a tow truck. So, I turned the car around and went home. So much for my venturing out to enjoy a birthday lunch with my daughter.

As a matter of fact, 33 years ago today we were also in the middle of a snowstorm. That didn't stop my baby girl from being born - and in the middle of the night too!

I tried dancing in the rain today, but ended up going home, waiting for the storm to pass.

Tuesday, November 20, 2007

First Snowfall

We had our first snowfall of the season! It's always a shock to pull open the bedroom curtains in the morning expecting to see brown leaves and green grass, but instead to see everything covered in white! All our withered, brown leaves frosted over like icing on a cake. Some mysterious white lumps (which will probably turn out to be flowerpots) squat beside the garden shed. The birdbath looks like a ghost.

Hubby sits at the window, upset because the mountains of leaves in our yard had not been raked up and taken away. Our lawn was always so neat and tidy when Hubby was looking after it.
But now, we have to rely on outside help to take care of our yard, and they hadn't arrived to service our property yet. Unless the snow melts and our "Lawn Crew" comes to clean up, these leaves will be sleeping under the snow all winter.
Ah well - there's always Spring Cleanup to look forward to. Wonder how much that will cost with all those extra, wet, heavy leaves to pick up!

Even though I don't like winter - would much prefer the warmth of a southern climate, I do love the first snowfall. Somehow it's magic.
It reminds of me of our childrens' delight as they watched magic snowflakes swirling and dancing in the air. Who doesn't remember sticking out tongues to catch those glittery snowflakes? There was always a mad rush to find mittens, boots and snowsuits, hurrying to get dressed and outside before the snow melted. Baking Christmas cookies. Making snowmen and snow angels. Memories to savour.

Those days are behind us now. Our children have grown up and gone. And I"m sure they are celebrating the first snowfall with their own children.

Wednesday, November 14, 2007

Balancing - our energy, our relationships, our lives.

If you don't like your life, simply change your thoughts. If you are thinking negative thoughts, change them to positive.

Yeah right! It might be good advice, but not so easy to carry out.

I have tried. Tried to change my thoughts from negative, worrying - to positive; but it's not easy. Those negative, fearful thoughts keep wiggling their way back into my brain.

The problem is, those negative worrying thoughts which constantly nag at me, have produced anxiety in my body. This anxiety manifests as pain in the form of tendinitis, bursitis, plantar fasciitis (notice all those itises??)

Strangely enough (or not so strangely) those pains go away when I am on holiday. When I take some time away from the worry and anxiety of Caregiving.

Doesn't it make sense, then, to take some time away? Of course, and this is not new information. It is good advice listed on every Caregiver's site or "book of rules." But we don't always listen or take the time for ourselves. Sometimes the Caregivers body has to react, producing pain in order for the Caregiver to pay attention and take action.

Changing thoughts is hard. Oh, it might work for a minute or two, but then the fear and depression come charging back as if to say "nah, nah, couldn't make me go away!"

So, I decided to make things easy. I can't change our situation, but I can change the energy. My energy, the energy all around me. I can do this by singing, putting on some jazzy music, calling a friend, tai chi, yoga, and by going out. Taking a break. Taking some time away. I don't worry about my thoughts - I'm already focused on something positive.

I used to feel guilty taking some time away from Hubby - even just an afternoon. I would feel as though I were off galavanting, getting my nails done, eating lunch with friends, having fun; while poor Hubby is stuck at home alone with his illness.

I don't feel that way anymore. Here's why:
First of all, I am taking time away from the situation - not trying to escape Hubby.
Secondly, the more good energy I have, the better for both of us.

But there was one more thing standing in my way. I had to learn how to "detach". Why? Because I could not emotionally tear myself away. My energy is all tangled up with my husband's. Or maybe it's Ego - nobody can look after hubby as well as I can.

Compassionate detachment is a form of letting go. It's untangling your energies, for the benefit of both.
As a couple you have your own energy, your husband's (or wife's) and "your energy together", which leads you down a different path.

As a couple you learn to be flexible - to ride the waves, to do or have what the other half of you wants at times, giving up your own desires to compromise. It can be a very loving arrangement, but the "you" energy sometimes gets lost, gets transformed into "couple energy". Your husband or wife's energy weaves its way into your soul.

Then something happens and your other half becomes weaker. You react by jumping in to save him/her at all costs. You give him your energy.

Isn't that what couple relationships or marriage is all about? Give and take. Balancing the energy in our relationship?

Certainly, but once that balance shifts; one person giving out more energy, while the other receives more, consciously or not, the balance tips and the ship begins to sink.

At that point some people decide they've had enough and jump ship. They leave the relationship.
Others cling on for dear life - they continuously give out all their energy until they too, are defeated - and both go down with the ship.

The best course of action (imho) is the Caregivers Creed: you give of yourself, then go away and recharge your batteries, refill your gastank. When you come back, you will be energized and happy to share your new strength and experiences. Like a mother fox leaving her den to search for food. She knows that she may come back and find her babies gone, eaten by a predator, or carried away, but she must search for food and bring it back. Otherwise, everyone starves.

A word of caution: don't bring your worries with you. That's defeating the purpose. You'll come back half empty and more tired than before.

And what of him/her while you are gone?
He is plunked into a situation where his choices are limited. He can pine for you like a puppy dog, wasting precious energy, or he can go within; a time for quiet contemplation; a time to draw upon his inner resources to connect or strengthen his spirit.

Once you come back, both of you have new energy to share. The illness is still there, but it has taken a "back seat" for a while.

Monday, November 12, 2007

Going down again

We're on a downward slope again. Over the past couple of days, Hubby has been unusually tired. He is sleeping more than normal.
Is it the weather?
Is it the time of year with longer darker nights?
Was it the Bath he took 2 days ago?

Showers are no more. They have given way to The Bath, which he takes once a week or so. Standing or even sitting in the shower is taxing; energy expended using his arms for washing takes its toll by lowering the oxygen saturation in his blood.

It's much easier to take a bath. Again I am reminded of mothering, of bathing a small child. We seem to be going backwards. It's a strange feeling.

COPD is like a rollercoaster ride , with it's emotional ups and downs (I think I've said this before and probably will again) There are good days and bad days. As time goes on, we begin to anticipate the cyclic nature of this illness.

Is it my imagination, or are the cycles becoming shorter?

Thursday, November 8, 2007


Yesterday, Hubby and I got into our car and drove to Walmart. Hubby hadn't set foot in the car since his exacerbation, early in October.

He hadn't felt well enough. Did not have the strength to walk to our car in the garage, and sit there with only the portable cylinders as his oxygen source.

But, yesterday, armed with 2 oxygen tanks, 2 pulsers (or conservation devices) and 2 cannulas up his nose, we ventured out.

I drove - that almost goes without saying at this point. He still does not feel stable enough to drive.

I parked in the handicapped parking slot, jumped out and ran into Walmart to exchange some batteries. I don't need the handicapped parking slot, but Hubby feels better sitting there, close to the store, in case he has to toot the horn for help.

Our next stop was Tim Horton's Drive Thru for our morning ritual and Hubby's reward - a "double-double" coffee. This time I ordered tea.

Hubby was fine the whole time. He had one oxygen tank (or pulser actually) set at 4 litres per minute and the other one at 2 litres.

"Why don't you just set one at 6?" I asked. Six is the highest setting and not enough for him to walk around, but enough to just sit. I thought he'd have them both at six.
"I feel better this way - I have more leeway to adjust the oxygen flow higher if I need it".

Hmmmmm - now I'm wondering how much of his reluctance to go out in the car earlier was due to anxiety, and how much due to really feeling ill. Probably a combination of both. There is no doubt he was weak and unwell, but I didn't factor in the possibility of anxiety. The more anxious the person, the more oxygen he will need.

At least I got him out of the house and into the car - stretching the boundaries of his little circle, if only for a short time.
And that's progress!

Tuesday, November 6, 2007

Body Synchronicity

When you are a Caregiver to someone you love, you know every nuance, every change, every feeling your loved one feels. When he's feeling good, you know. When he's feeling the tiniest bit fatigued or weak, you can sense it. You can see it in his eyes. You get so good at this you can anticipate how he will react or feel in any given situation. You are his voice, his connection to the outside world.

I call this body synchronicity.

Mothers and babies have it instinctively.
We Caregivers develop it.

I know how he feels, I feel what he feels in my body. There are times when I actually try to breathe for him. Is this normal? Or weird?

There was somebody else in my COPD Caregivers Support group who was also breathing for her husband. She learned over the last few months of his life to stop "doing for him".
As mothers we "do for our children", until they can do for themselves.

In "doing" for our loved ones, are we advocating for them or suffocating them?
I imagine there is a fine line that we need to respect.

Back to body synchronicity.
Over the past few years, I have caught myself trying to match my body's needs to those of my husband. He suggests we make a cup of coffee. I don't really feel like one, but what the hey - if it makes him happy, I'll keep him company (as the saying goes). But now I feel queasy; should have made myself a herbal tea instead.

His pace of life has slowed down considerably. So, mine has too - not as much, however, or none of the ADL's (activities of daily living) would ever get done.
But I do take more time over meals. We spend time reading together. I'll put in a load of laundry when he is exercising or I'll then go for my daily walk. Some people would love to have this quiet lifestyle. I do appreciate what we share at this critical time in our lives. It's our differences I am seeing now, not our similarities or life goals.

Sometimes I ask myself "if he wasn't here, would I have the same routine? Or would I follow my own body's needs and pick up the pace, take my morning walk first thing instead of waiting until he is busy doing something else? " Hmmmmmm.

I realized just how tired I was of matching my body to my husband's when Son came to visit. We broke the pattern, as Son took over for a while.

Now hubby does more for himself. And for the first time in months (maybe years) I feel our symbiotic relationship has broken. For me this is good. I am not so exhausted and I don't ignore my needs (I tend towards hypoglycemia, so have to eat more frequently, while Hubby can go hours without food).

We are still sleeping apart - on different levels of our home. I don't wake up every few hours in the night, terrified that he might have stopped breathing. I think he's beginning to like living on one level - doesn't have all those stairs to climb to go to bed at night.

What I am feeling now is a separation of our energies.
Before, I felt caught in a downward spiral, in a dark whirlpool swirling toward the unknown, holding tight to Hubby's hand. Now I feel our hands have become unclasped. Is this a temporary step allowing me to regain some of my strength? Or will this be permanent?

Friday, November 2, 2007

Heeeee's back!

Slowly, but surely, Hubby's energy is coming back.
That tiny shift of a few days ago is growing, stretching back into feeling good once again.

Hubby has begun that long road towards getting back in shape. Back to his rehab exercises, which he had given up weeks earlier.
Those exercises (breathing, very light weights and treadmill or stationary bicycle) are absolutely essential to the COPD patient. Without them, their muscles deteriorate at a faster rate. Once they stop moving, the muscle tone doesn't come back.
That's why Hubby is religious about his rehab exercises. He hates to give them up, even when his body is weak and begging for rest. Exercising, even if it's only for 5 minutes gives him a measure of control over this devastating illness.

So, he's back. Not at the normal pace, of course. COPD'ers move very slowly.
But slow and steady wins the race, doesn't it?

Thursday, November 1, 2007

So far, so good

So far, hubby has not contracted my cold. We are being so careful. Handwashing fastidiously, cleaning bathroom sinks, washing towels, scrubbing countertops vigourously - all to avoid spreading this cold virus. Ask any COPD'er and they will tell you - a cold could be deadly.

I wear a mask when preparing food, hubby serves himself. He makes his own coffee and tea. We are sleeping apart.

I feel like an outcast! But - this is totally necessary. It will be well worth it to spare him the miseries of a simple cold. Simple for me, but with his weakened immune system, could lead to pneumonia and months of convalescing - or not.

So, we take our precautions to the extreme.

So far, so good.
I am impressed - maybe he's already had this virus and made antibodies. Maybe he has a hidden well of strength - enough to fight this off.

But something strange is happening. I have had to loosen my grip. Have had to back off a little in my "caring". My focus is still Caregiver, but I've had to look after myself and my cold. After scrubbing the kitchen, I take a rest, read a book - no matter what hubby is doing.

In other words, I am not hovering over Hubby, making his coffee, turning down his O2 when he goes to sleep, or even helping him change his tanks. He is perfectly capable of doing this on his own - yet I've always been right there helping out. And waiting to look after my needs when he is sleeping.

Was I doing too much?
Is this better for both of us?

As time goes on, we will find out.
But as long as he continues to stay "cold-free", I am happy.

Sunday, October 28, 2007

There's been a shift

A tiny shift, almost imperceptible, but a shift none-the-less. I feel it in my body, in the energy that surrounds us, in the timid little spark of light caught in the reflection of hubby's eyes.

"I think I'm feeling a bit better" Hubby spoke cautiously, so as not to upset that good feeling and make it go away.

Better? Feeling better? Oh joy!! Yippeee!

Are the antibiotics finally kicking in?
Is it Son's visit? Did he bring a sliver of light into my husband's soul? A change of focus, a shift from dark to light, as they sit together watching football on T.V.

But isn't that my job - to make him feel better? Aren't I the one to put light in his eyes, a smile on his face?

Maybe I've been holding on too tight. Trying too hard. Taking my role as "fierce protective dragon" a little too seriously; guarding my charge from upset and fatigue at all costs.

This Cold has forced me inwards. I have had to temporarily step down from being primary Caregiver and let Son take over for a while. I have had to "let go" a little bit, relax my hold. Is there a message for me in this too? Am I holding on too tight to this illness? To my role as Caregiver? Is it time to let go, release the reins a bit? Trust that I am doing all that I can and let Nature look after the rest?

Or is it just the atmosphere, the cool autumn winds sweeping away the old stagnant energy and replacing it with fresh and crisp air.
Whatever it is, hubby is beginning to smile again.
And that's good enough for me.

Saturday, October 27, 2007

When the Caregiver gets sick

I have a Cold. That most dreaded, feared illness for COPD'ers. I don't know how I got it. We live in a sterile bubble. No one comes in. I go out as little as possible. We wash hands frequently.
Yes, we do have a visitor. My husband's son. He looks perfectly healthy. Even so, did he somehow pick up this virus on the plane and transmit it to me? Did I pick it up at the library, grocery store, pharmacy?

We can drive ourselves crazy trying to figure out where this nasty, but potentially lethal virus came from. And, really, what does it matter? We try so hard to stay healthy - but life happens. So does illness.

Actually, I should not be surprised at all. I have let myself become run down, caring for hubby and worrying about him. Worrying about Son's visit. Will he excessively tire Hubby? Bring in a virus? (he has in the past). When did I become sooo paranoid? Sooo stressed out?? And now, it seems, I have neglected myself. My Cold is the proof.

Now what? I sleep on the sofa, wash hands a thousand times more often and let Son prepare meals for the two of them.

Is it inevitable that I be the one to make my husband sick? Will I be the one to bring home his "final cold" when the time comes? Is this the time? Does it have to be me?

I wish I could take off, leave, escape - somewhere until I'm better; until I'm not contagious - but this is really a Catch 22 situation. Who would then look after Hubby?

Friday, October 26, 2007

Treading a fine line

Sometimes when caregiving for a person who is ill, it feels like caring for a small child. We have nap times, baths, coaxing our loved one to eat nutritious foods, take medications. We love them, we guide them. We hope we're doing the right thing. We question ourselves, we question the disease process, we question our loved ones.

How much of their independence do we take away, in doing what we feel is best for them? We are the caretakers, yet we tread a fine line.

When bringing up children, we watch them grow. We guide them, we steer them towards independence. We celebrate each step of the way. Then one day, they fly free.

With our loved one, the process is different. We watch them deteriorate. Last month he was driving the car. This month he can't. Last week, he could shower with supervision. This week he needs hands-on help. We trust them to take their own medications. After all, they are adults. Not children.
But then we walk that fine line - we discover they have forgotten to take their medications, brush their teeth. Do we remind them? Do we let them be?

My husband's son came to visit from out-of-town. My husband was not looking forward to this visit. He knew it would tire him out. I thought the distraction of having his son stay for a few days would do him good. But last night, the constant conversation (even with naps in between) turned out to be too much.

I looked at the clock. It was 9:30 in the evening. I was getting tired. Hubby was getting tired. Son said "let's look at pictures."
No, let's not, I was thinking, it's too late.
But, I kept quiet. Let Hubby take the lead. It's his illness, his son to set down guidelines.

Son started showing pictures. We didn't get half way through when Hubby blurted out "I don't feel well. I have to go upstairs to bed."

I helped him up the stairs to bed. The evening ended on a bad note.
Could I see it coming? Yes.
Did I do anything to stop it. No.
I thought it best to let Hubby set the guidelines, to set his own limits.
I was wrong. In his fragile state, he didn' have the strength to deny his son that small pleasure of showing us his pictures.

I should have stepped in and nipped this situation in the bud.
But would that be taking away a little more of his independence?
I'ts hard to know where to tread these days.

Then one day, he too will fly free. But I won't be celebrating.

Tuesday, October 23, 2007

The path of the Caregiver is a difficult one...

as we watch our loved ones slowly descend into the unknown. We watch over them, like a Mother, as their health, their independence, their strength gradually slips away.

We grieve our losses. We grieve for the loss of our once sparkling lives; lives filled with joy, hard work, passion, careers, friends, good health taken utterly for granted, even at our stage of life (middle-age, grandparent-age). Not that we havent' seen others suffer, but when you feel vibrant and happy inside, your own health is not an issue.

But the grieving process is just beginning. "Every day above ground is a good day" said someone on my COPD Caregiver's forum. She had just lost her mother and was grieving openly. I still have my husband to warm my bed, to sit with at the dinner table, to share a coffee and a kiss. I'm lucky. But I know it won't last.

And yet, with all this complaining, I feel an un-ease deep within my body. I feel disloyal at even creating this blog. Here I am whining and crying at how my life has changed. How difficult and unhappy it's become, as I try to put on a cheerful face for my husband. Am I being selfish??

I once gave my sister *sh..* for complaining about her lot in life. Her husband is brain-damaged. He had fallen down the stairs years ago, went into a coma and ended up in hospital for months. When he finally got out, he was a very different man. Could not stand noise of any kind, so no restaurants, no socializing, no music; couldn't remember how to work the computer, the telephone, didn't know what love meant. His body is fine, his mind changed forever. Just like the Alzheimer patient or anyone with a mental illness for that manner. They look the same, but when you look deep into their eyes, they are not.

After listening to her complain endlessly about "poor me", I wrote her a nasty email. "Stop thinking about youself. What about him? Don't you think he has it worse than you do?? After all it's his life. You can go and do anything you like, drive a car, go shopping, meet friends, chat on your computer - what about your husband? Get up off your butt and stop your crying!!

How about that for sisterly love? And well, what goes around comes around - Now it's my turn, as I walk in her shoes, bemoaning the loss of my "normal life". And yes, I'm choking on my words right now.

Sunday, October 21, 2007

The little things are slipping away......

The world of someone with a chronic illness shrinks. First the big things fall away, then the little things.
The first big thing to let go of is usually the job, profession, career. Your reason for being, sometimes. For my husband, giving up medicine was excruciating. He loved being a doctor. He loved fixing people.

Then he was diagnosed with COPD. "But, I can still go to work!" - he would say. And he did. He just hid his portable oxygen tank in an empty office and every once in a while, would go in, close the door and take deep breaths of oxygen. Then he'd go on with his work - happily...... Until....
Someone coughed in his face. Not intentionally, certainly not on purpose. But the damage was done. Hubby came down with another pneumonia.

He had no choice but to stop working.
Give up his beloved career. Now he's the patient.

Slowly, gradually, other things went: socializing, biking, gardening, vacations.
So we try to adapt.
We go out for mid-morning coffee. Doesn't sound too exciting, does it?

Every morning we'd get into our car and drive to the post-office to pick up our mail. Then stop in at the local grocery store for a few items, then on to Tim Horton's or Dunkin Doughnuts for coffee and a snack.
So what? you're probably thinking.

Well, I had begun to resent these daily excursions. I am a morning person and love to "get going" - milk cows, chop wood - no, just kidding. I like to go for an early morning walk, to get started on the day's chores, bop over to our local Chapters and Starbucks for a latte with friends. But it seemed I was tied to this ritual,which would take up the whole morning.

Then Guilt sunk in (much more about Guilt later). How could I take this pleasure away from my husband? He looks forward to our daily coffee. I can always do my stuff in the afternoon.

But now, sadly, even this has gone. And I miss it. He no longer has the strength to get into the car. So I go alone, do my errands as fast as possible and bring him his special "double-double" coffee. He is so appreciative. The little things in life - and even those are slipping away.

Maybe it's just his "excerbation" thing. Maybe he'll regain some of his strength and come back to where we left off - just 2 short weeks ago. We never know.

With COPD it's a real roller-coaster ride.

Saturday, October 20, 2007

In the leading up to The Diagnosis.

COPD is very sneaky. You can have it for years and not know. Then one day you realize you can't keep up. Your energy is flagging. You become short of breath or have trouble walking up stairs. Activities that used to be routine become difficult - like running to catch a bus, or riding a bicycle, or even gardening.

Some people have more colds; come down with pneumonia or bronchitis, develop an early morning cough.

One fall day in October (a day very much like today), windy but warm, my hubby and I had driven downtown for a routine x-ray. We parked the car and started walking to the medical center downhill - downhill, not uphill. Suddenly hubby slowed his pace, looked at me strangely and said he couldn't go any further.
"What's wrong?" I asked him
" I don't know."
"What do you mean you don't know?"
Please don't throw up on the sidewalk, I thought to myself, Or pass out or have a heart attack.
"I don't feel right." he answered, sitting down right there on the sidewalk.
I sat down beside him, continuing to chat as if having a conversation on a dirty city sidewalk was the most natural thing in the world. People walked around us; some giving us funny looks, most ignoring us.
He did look rather pale, but besides that, there was nothing else to indicate what was happening to him. No cough, no shortness of breath - we didn't even think COPD or really know what it was back then. After a while we got up and continued on to our appointment.

Three days later, he came down with pneumonia. That was the beginning. The beginning of this roller coaster ride called COPD and oxygen dependency.

Thursday, October 18, 2007

Exacerbation (no it's not a bad word)

We learn a whole new vocabulary when we care for a loved one with a chronic illness: COPD, CHF, chronic bronchitis, bronchiectasis, pulmonary function, spirometry, atrial fib, MS, arthritis, alzheimer's, scleroderma, fibrosis and on and on and on.

Exacerbation is not a bad word - it's a terrible word! It means your loved one, the person you are caring for has just gotten worse. Their symptoms are progressing; their health regressing.

This is where we are today. Hubby's chest feels heavy. He is tired - not the usual tiredness of chronic obstructive pulmonary disease, but really weary. Nausea, headache and just feeling fragile. He doesn't have cold symptoms - no runny nose or sore throat or cough. So we can't blame these symptoms on a cold. Even though some of the symptoms are the same (fatigue, heavy chest, nausea, headache) an exacerbation is a step down, a worsening of his condition.

The treatment is pretty much the same: antibiotics and prednisone. We're lucky in that his pulmonologist insists that we have this "action plan" (medicine) at home to use when he needs it. No extra trip to the office for the doctor to tell us what we already know. So, we count our blessings.

We never know when an exacerbation will hit. We never figure out why. COPD is a rollercoaster ride - some days bad, some days good. There is no rhyme or reason. It just is. Ask anybody on a Support Group List. They'll tell you.

This is the "living day to day" lesson for us. We take the good days and enjoy them and try and get through the bad.

Hubby and I have had a good summer. Here in Montreal, Quebec, our weather was warm - not too hot and not that really humid stuff that makes it difficult for COPD and heart patients to breathe. So, it was good and I am thankful.

Autumn is another story. Transition time. We get warm days and cold nights. Then cold days and warm nights. No wonder people get sick! The fragile body of the chronically ill has a hard time adjusting to temperature changes - not to mention the barometer!

Tuesday, October 16, 2007

First Post - Are you a Caregiver?

My name is Wendy and I am the primary caregiver for my husband. He has "end-stage" COPD - which is chronic obstructive pulmonary disease - a horrible deteriorating illness. I have to watch him die. It doesn't get any worse than that!

So, I have created this site "Caregiving is NOT for wimps" to share my experiences with others who find themselves in the same situation.

Caregiving is demanding, draining and sad. I did not want this (neither did he!) It is upsetting for the patient (family member) to be sick, depending on others for basic care.

It is not fun for the Caregiver - me - to have no social life and having to watch someone I love go down the drain. It sucks!!!!

One thing I keep asking myself is "how did I get here?"
Who knows? This is life and the sooner I accept it, the better.

But, in the meantime, I need to vent. I need to hear your stories. I have joined support groups and they have proved a godsend. Connecting to others is a way of sharing our burdens, our grief and our joy. Yes, joy - somewhere in all of this (they tell me) is a gift, a blessing in disguise). Well, let me tell you, it's time to take off the disguise.... and find the blessing.

This is my first post - I'd love to hear any other Caregivers. I know you're out there.