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.

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?

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.

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.

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.

In the beginning.......events 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.

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!

First Post - Are you a Caregiver?

Hi,
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.