When you are caregiving someone who is very ill you feel as if even the slightest decision might carry the direst consequences. And there are so many decisions to make!
Chris had been lying in bed awake for most of the night. I finally got up with him about three. Made him a coffee at four. Watched true crime TV with him til five. Helped him change his T-shirt wet from sweat, sponged him off, refilled his water jug by six in the a.m.
He would sleep, but he is coughing. Coughing up phlegm. Coughing himself awake if he happens to doze off. He wants to try to sleep. I am wide awake. I step out of the room.
On this particular night, I find myself flustered. Unable to make even the simplest decision. Like whether or not to go in and close the bedroom window.
Experts at the Ethics Resource Centre online give six steps in decision making.
- Define the problem.
- Okay. Chris is coughing and he needs sleep.
- Determine a number of solutions.
- Hmmm. Cough syrup, let him be, change his position.
- Evaluate these solutions to find the best.
- Well, let’s see: Cough syrup may interfere with his meds. Changing his position could wake him up.
- Make the decision:
- Got it–leave him be. This solution is neither intrusive nor likely to affect his meds.
- Act on it.
- Okay, that means go do something else besides standing in the hallway listening to him breathe.
- Evaluate the results.
- He seems to be sleeping just fine.
I spent a lot of time on a seemingly insignificant decision. Stress can do that to you.
When you live with someone who is terminally ill, when you feel personally responsible for their well-being, each decision seems to carry a sort of life and death weight.
I have a lot of trouble with this sometimes, because I always need time to think things through.
What I learned on this night is this: Based on the information above, it seems like needing time is a good thing. I guess it’s just a question of using that time to properly address the issue.
If like me, you’d like to read more about the decision making process at the Ethics Resource Centre, please go to:
The doctor repeatedly tells Chris he must walk. Chris won’t. This is a caregiver’s dilemma.
Because I know he should exercise? But I also know how precarious his health is.
He could keel over any moment. He could die anywhere. In bed for instance. He could die while out and about. He could die in the kitchen getting a sandwich.
But he looks strong. Like his father, he has a big chest and thick rounded shoulders, a brute of a back.
Although his illness has reduced his size somewhat, it has not diminished the man.
His sense of humour is still keen, and he still has enough of a temper to direct a spate of comments at another driver, or people on TV–a politician or a football coach.
Keeping that powerful inner man intact concerns me more than his physical health. Do other caregivers feel that way about their ailing charges? Or is it just me?
After all, if the best cardiologists, and his cardiologist is one of the best, cannot cure him, then far be it from me to try. So I feed him carefully, help him keep his appointments and encourage him to stay calm and keep moving.
Which is why, when I am perfectly capable? If he offers, I will lie in bed and let him get me a cup of tea. Or make myself stay at the computer when I hear him hobbling around in the kitchen and let him get his own sandwich.
The risk I take when I force him to move like this? Is that it could be the moment in which his body succumbs.
There is a horrible guilt associated with even the possibility of this. But he does need to move. And because of the pain, he won’t unless hunger or need drives him.
Should he succumb? The only comfort I would have to offer myself is this: probably he could have been asleep and it would have happened anyway.
I have to believe that. Or I would never let him leave the bed.
One incentive to get up and about that Chris cannot resist is an empty bird feeder. He feels about those birds like he feels about his children.
Here comes Scout, he says, as a lone little bird perches on the cedar bird feeder. ‘Scout’ flits to one side, then the other. Finding both empty, he cocks his head and looks straight at us.
We are sitting in the living room, Chris in his wing back chair, me on the sofa, observing this ritual through sliding glass doors.
Now he’s upset, Chris says. And indeed, the bird pecks at the empty wooden floor of the bird house then turns to look at us again as if to say, Where’s my dinner?
When neither of us gets up, Scout pecks once more at the barren floor and then flies away in disgust.
I make no motion to get up and go to the bag of birdseed.
He’s telling the guys back home, forget it, they’re deadbeats, Chris says. I chuckle and nod agreement. A few minutes go by.
I guess we need to fill it up before he comes back or he’ll really be upset, Chris hints.
I guess so. I curl my legs under me on the sofa.
Finally Chris gets up, grunting and helping himself with the arms of his chair and his cane. Unsteadily he makes his way to the bag of feed in the corner by the door. He opens the door and manoeuvres clumsily through to the patio, then balancing himself without his cane, he lifts the roof of the birdhouse and pours in the seed. It takes two trips before he is satisfied they will have enough for awhile.
By the time he returns the cup to the bag of seed for the last time, he is perspiring and leaning heavily on his cane.
Do you want to lie down now? I ask, rising.
No. I want to wait and see if those little beggars come back, he says grinning. I help him sit.
Was it mean to make him do that? I don’t know. How can I know?
Was it harmful or dangerous for him to do that? Again, I don’t know.
What I do know is that sitting for hours on end, lying in bed most of the day, is not good for the circulation.
And the doctor says, he needs to exercise. And I have a feeling Scout would second that notion.
Over the last two years his legs have become very painful.
Deb, his daughter, took him to the swimming pool to exercise his legs and feet. He loved it.
I was hoping this would become a regular father-daughter outing, going to the pool and then to the Senior’s Centre for lunch, but no such luck. Twice. That was it.
So we planned to go to the pool together. But I had to get a bathing suit. This was a a bit of an undertaking so Bev, my oldest daughter, came with me. She approved something that looked more like a mini-dress than a bathing suit.
They have a family change room, Chris informed me. I could not get my head around how it might work to have men, women and children all changing in the same room. Because of my Asperger’s, it made me anxious. I tried not to show it, but I admit, I did keep asking about the family change room.
We went once. Exhausted from the walk from the parking lot to the change room, Chris asked me to use one of the wheel chairs to wheel him to the far side of the pool.
When we came out of the change rooms, Chris seemed surprised to see parents and small children splashing in the waves.
It’s usually just seniors, he said, adding, And they don’t usually have the waves on when Debbie and I are here.
It is a wave pool, I noted.
The waves were not buoyant, like in the ocean. Instead they nearly knocked us down.
Shortly after we got into the pool, they announced that for the next fifteen minutes? The waves would be turned to their highest thrust!
Some nine and ten year olds rushed over to where we stood clinging the edge of the pool nervously.
This is where the biggest waves come! one freckle-faced boy said ecstatically.
We spent the longest fifteen minutes of our lives clinging to each other and the edge of the pool, being thrust unsteadily backwards with each wave.
In desperation I looked around and saw a bench around a pillar in the pool, about ten feet away from us, where we could sit out the waves. But I didn’t dare try to move Chris there. What if he fell?
We haven’t been back again. But I’ve since learned that the seniors’ swim is weekdays 10 to 11 a.m., without waves. That’s when we’ll go for our next swimming adventure.