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.

"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.

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.

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.

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?

Progress

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!

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?

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?

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.