Reading Kamla’s post, I recognize how precious my time with Chris was.
How lucky I was as a long term caregiver to still be in a relationship with someone who loved me.
There were times, I admit, when I was all too focused on getting the laundry done or the fridge cleaned out. When keeping busy was my way of ignoring the fact that I was not free to go outside into the fresh air; to go for a walk, to saunter down to Starbucks and read a paper while sipping a latte.
I prayed a lot. “Pray for courage, Maggie.” Father Obiwumma advised. “I pray for grace,” I said. Grace to accept that this was my decision. Grace to be cheerful, loving, helpful.
Grace to remind myself that being entrenched in this apartment 23 of 24 hours a day was not anyone’s fault. It was my choice.
It’s amazing how hard it can be to remember that sometimes.
Sometimes, I’d get cranky. Then Chris would crack a joke; clown for me, make a face or deliver some harmless, lewd comment. And we would laugh. And in that moment I would truly know how fortunate I was to be with this man on this final journey, to be his chosen companion.
We sat together for hours every day, holding hands, watching movies, Chris giving me a constant flow of data about the actors and locations and sometimes even the history behind the movies. He cried when brave men did great things.
He cried when Doc Holliday died in Tombstone. Not sobbing. Just wiping his eyes and huskily asking for a coffee or fresh water.
After the TV was turned off, we’d say the rosary together. It was what he wanted. I would kneel beside his bedside and we would say the decades together.
I was lucky to be in that relationship right up to the end. Lucky to have all those months and years to nurture and hold him, to understand that I was losing him.
I don’t know how Kamla copes, after losing Jack so suddenly. How people who lose their loved ones in an accident or sudden illness or suicide manage their grief.
I miss Chris. Miss him terribly. But I can’t help feeling, reading other caregiver websites, that somehow, I was one one of the lucky ones.
I confess there are times when I think Chris is playing it up.
The heavy breathing, the grunt of exertion as he lifts the water jug into the fridge. He leans heavily on the counter, his breath coming almost in gasps. Finally his breathing settles down.
He asks me to carry his mug of coffee into the bedroom for him, asks if I’ll make a cup of tea and join him? I’m thinking he can carry his own mug, and I have work to do.
Then I realize how very ungracious that thinking is.
The man has severe coronary artery disease. His cardiologist who has had extensive experience with this condition has put in writing that it is the most severe and pervasive he has seen in his practice.
That was over a year ago, and the only thing that has changed is also documented: it has gotten worse.
So even if the man wants to ham it up a little, who am I to judge?
Maybe he just wants me to have the audible of what’s going on inside him, of how he feels as opposed to how he seems.
This accompaniment is not available to others, only myself, and I wonder if I shouldn’t feel somehow privileged to be the only one allowed this very personal insight into his world.
Or maybe he is just playing me.
I’ve come to realize it really doesn’t matter. Whether it is a true reflection of his feelings or just a show for sympathy is irrelevant and unknowable.
All I can ever know looking back from one day in the future, will be how I responded.
Did I respect his pain? Accept the way in which he has chosen to handle his condition? Allow him dignity in the face of his body’s response to his illness?
Did I give him the comfort he reached out for? Offer the humour that turns a tough moment into one where he ends up cajoling me?
In this journey we are taking here together, I have come to one irrevocable conclusion: I must always accept Chris’ outward manifestation of his discomfort as valid.
And respond accordingly.
Chris has been talking about our last residence quite a lot lately, a beautiful place where mornings we’d have breakfast looking out over lawns and hedges, a sweeping drive.
He was saying it was the perfect house for us and he wishes we could buy it. But as a caregiver? I disagree.
A white bungalow, yes, the house was small and so-o-o perfect. But with it? Half an acre of green lawn and wide, curved flower beds requiring considerable maintenance.
Off to one side a pathway through some magnificent firs led to a little white cottage which became my office. From here I could view wisteria draped trellises, and hear water ripple in the fountains
It was a very private, very spiritual place.
But the owners came back sooner than they had expected. It meant an upheaval; moving sooner than we had anticipated.
Now the house is for sale, Chris told me at dinner. for about $800,000.
Right now we rent a small apartment which is more suited to our situation. Somehow, I suspect it will be even more so in the future.
Take the bedroom here for instance. We wall-mounted the TV, there’s an ensuite bath with a shower. And there is an outer door that closes all this off from the suite.
This feature allowed him to rest quietly while we moved.
I also have a den where I can write in privacy. It isn’t a cottage in the trees, but on the other hand, I don’t have to go outside, leaving Chris alone. I can work on the computer and hear his every move and call.
The living room and dining room are not spacious, but with Chris’ limited mobility? It’s good the space is small.
And since the reduction in income because of Chris’ health, our pensions cover not only the rent, but all the basics. Driving is limited. The lab where he gets his blood tests? Right across the street. Really, as a caregiver, what more could one wish for?
Not a six figure mortgage.
This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.