Nowadays many families experience a situation in which one or more members find themselves in the position of caregiver. And it’s Christmas. What better time to offer the gift of a helping hand.
Most people want to help, they just have no idea what to offer in view of their own time constraints.
If you really want to make a caregiver’s day, here are ten ways to do that.
Before you call with offers of help, check your own schedule so that you know before hand when you can deliver on these offers. Never arrange for deliveries or visits during a caregiver’s respite time.
Be specific. If you are sincere, saying If you need anything just call me, is not helpful. Decide what you are willing to provide: time sitting with the patient? Meals? Baking? Help with housecleaning or other chores? Running errands?
Bring or send flowers. Flowers brighten up any space, cheer up a sick room, and are a beautiful reminder that somebody loves you.
Phone first. Arrange the visit for a time when you can stay at least half an hour. Do not stay more than one hour. Visit with the person being cared for to take that responsibility out of the care giver’s hands.
If you are the care giver’s friend, stop and say a few words to the ‘patient’, and then continue your visit in another room with the caregiver. This allows the caregiver to vent if necessary.
If you live far away or are busy building a career and can’t help physically then send flowers, money or a gift card. Or arrange for a housekeeping service to come in once a week or twice a month.
Express appreciation. If you’re related to the person being cared for? Be grateful. And show it. Remember that old saying? But for the grace of God… Praise is sincere and nice to hear. It costs nothing and can make someone feel much better.
Be reliable. If you say you will help in some way, do so and do it at the time you stated. Caregivers are often weary, sometimes lonely and always overwhelmed, so be the bright, steady star in their lives—show up when you say you will. Bring what you said you would bring. And along with it? Your cheerful, smiling face.
Keep in touch. Caregivers often get left out of the family loop because they can’t get away to visit with relatives and friends, attend family events like birthdays and anniversaries and even casual get togethers. Phone them. Text them. Keep up with their facebook page. Let them know they are not alone in this.
If you’re internet savvy, offer to do on-line research for them. Maybe they need to find the palliative care/hospice alternatives in their community, or the parameters for these kinds of care. Maybe they’d like to know more about certain medications, or even caregiver associations or Red Cross equipment depots in their area.
Keep your own troubles away. Caregivers have enough to bear. If you’re visiting because you want a sympathetic ear, stay home. Find a counsellour or a different friend to confide in. Bring only your best face to the care home.
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:
Although research tells me I’m not. Symptoms of hoarding include:
acquiring excess
an inability to part with it. (I have given away much in care packages to others who are in more straitened circumstances than I find myself.)
unsanitary conditions (never in my place) and
clutter–(only occasionally in my office, and that’s papers!)
So I’m not technically hoarding. But I don’t know when Chris is going to succumb. But I do know that when he does? Financially I’ll be, well, let’s just say less than comfortable.
So I’m storing up staple items for when that day comes.
I’ve never had any trouble getting a job, but at my age? Let’s just say employment options are limited.
But I tell myself there will be less need to work. Less food consumed. Fewer commodities required.
And I am resourceful. For example, I’m an excellent cook who has always enjoyed the challenge of making a tasty meal out of just about anything I find in the kitchen.
So why is it so hard for me to make a list and buy only what is on it? Do other women in a similar position find themselves doing the same thing—buying ridiculous amounts of food and other household staples?
How common is it for women about to become widows, to stock up? Does it happen only in income-restricted families?
I wonder if the opposite is true; if the fear of being income-restricted after the spouse’s death leaves some women unable to spend money, even for necessities?
I need to introduce a new mantra to my grocery shopping days: I have enough. I have plenty. How fortunate I am to have enough.
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.
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.
I have a good friend, Joy. The other day we were having tea and something I said, I can’t remember what, prompted her to say, “Maybe you’re grieving Chris already. Is that possible?”
I had been an hour late for our meeting because I read the clock wrong. Not once, but several consecutive times as I glanced at it. And when I got there, realizing how late I was, I burst into tears.
My husband has the most pervasive case of coronary artery disease his cardiologist has ever seen. Chris had his first big heart attack in 1993 and since then, events and procedures have constantly reminded us of the fragility of his life. That’s stressful.
It’s hard to write about this anxiety, about how it impacts me.
What spousal caregivers relinquish from their own lives in caring for their spouses, can create a sense of loss.
Added to that is the certain knowledge the future is going to hold something entirely different for us—to a large extent, an unknown quantity.
Alma Vaugeois, a clinical psychologist and counselour, tells me caregiving for the terminally ill is living in the uncertainty of what is going to happen and when.
People feel helpless in the face of the unknown. They can also feel loss long before anyone passes, Alma told me.
For me, these voluntary and involuntary life changes create a wholly natural and very unwelcome sense of loss.
Parts of our lives must be let go in order for us to do what in all good conscience we feel we must, what in our love for our spouses we are driven to do.
We all know what must lie ahead in terms of our spouse’s condition.
And people feel guilty thinking about the future, Alma related.
In short, we deal with guilt and grief while caring for our loved ones.
Perhaps that is what Joy saw in me that day. Grieving for what I am losing even now, while he is still living.
I wouldn’t change my choices. But it seems I can’t do anything about the emotional fallout that accompanies them, either.
And I wonder how many others have experienced this loss? And how many have covered up these feelings out of guilt or shame?
You can learn more about Alma from her website at: www.almavaugeois.com/
As his wife and now his caregiver I’ve always noted that Chris gets pleasure from simple things. One of these is old movies.
One of his favourites is Keys to the Kingdom, starring Gregory Peck. When Peck, a priest, gets to his mission in China, he finds that he has no parish members. He is told the people will only come if he gives them rice. Peck stoutly replies that he doesn’t want any ‘rice-Christians’ in his mission.
These days another pleasure for Chris is the bird feeder. We chose a little cedar model. Then came the choice of birdseed. It seemed expensive, but it was no mess and recommended, so we bought it.
I rigged the birdhouse up, put out the seed and waited.
The next day a single bird, brown and grey with some white markings, came and sat in the Japanese Maple next to the birdhouse. After a thorough visual examination, he finally landed and began to peck at the seed.
He left not long after, much to Chris’ disappointment. But later that day, Chris ventured out to the living room to have coffee. Marg, Marg! Come and see! he called.
Our ’Scout’ as we had dubbed him, had come back, bringing another with him. Together they dined.
The next day they returned, and this time another bird with orange markings trailed along. There was some fluffing of feathers and a bit of pushing and shoving at the trough, but Scout held his ground.
In the end, they all ate to their contentment, more birds joining in, some taking sunflower seeds or peanut halves back into the branches of the maple tree to break down and eat.
Chris watched all this with interest. It’s their hangout, he said proudly.
If I had wondered why Chris wanted a bird feeder, now I knew. All his life, Chris has helped people: giving them jobs, helping them with housing, even going to the Sisters of Atonement and making sandwiches for the homeless.
Now that he’s infirm, none of that is possible. But these small creatures, Scout and his friends, depend on him. That allows him to feel generous. It lifts his spirits.
In May we were gone for two weeks. We came back to an empty, abandoned bird feeder. We put feed out right away, early in the morning, but in spite of repeated checking, we saw no birds all day. Chris came to the dinner table disappointed.
Rice Christians, Chris said, as he unfolded his napkin. That’s what the little beggars are. Rice Christians.
I was born with Asperger’s so that I had markedly different ideas and behaviours from the average girl,
In my book, Unforgiving, Memoir of an Asperger’s Teen, I talk about how frustrating it was, growing up in the 60’s when the syndrome was unknown.
I spent my whole life hearing that what I said or thought or how I reacted to situations was ‘wrong’. And maybe it was.
When I married Chris, we had problems, the same, I like to think, as any other couple.
I worried about saying the wrong thing, doing the wrong thing. Being the wrong person.
Even more so, now that his health is so fragile.
I’m sure others caring for their loved ones must feel the same, Asperger’s or not.
But that out-spokeness is helpful at times, too. Sometimes it is exactly what the situation calls for. I can face these times. I want to know. I ask questions, probe, push a little. Sometimes a lot.
So people look at me like Where do you get the nerve?
That’s okay. People have looked at me like that all my life. I need answers. Chris needs answers. I’m willing to stick my neck out to get them.
It’s loving him that kills me.
I remember when he had his first heart attack twenty years ago, I was scared stiff. Scared he’d die when he had so much to live for. Scared I’d be without him.
I kept telling myself, If I can just get him home, just be in bed beside him again tonight, everything will be all right.
It hasn’t been perfect. We’ve had our ups and downs. But even with this final blow, we’re still together. Thirty years and counting. Still happy to see each other.
And, Asperger’s or not, snuggling together at night is still the very best part of my day.
Yours truly,
Margaret Jean.
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.
Caregiver Me 