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.
Final Instalment of a continuous narrative by Gemma Tammas.
While we are regularly visiting his doctors, two more inflections added to his failing health. Hearing loss, and cataracts. Many times, I have to shout at him because his hearing aid is not in its place.
Only yesterday, he was telling me about a woman, who was interviewed on the news, saying she traveled to San Diego to learn about a diet. Tom told me that woman became a nun.
“That’s what she said,” he insisted and it was no point to dissuade him otherwise. It wouldn’t have changed his mind anyway.
I help him to read as his eyes get tired and every phone call fell on my shoulders as Tom’s voice became scratchy, mumbling his words.
Losing his health big time along with his driver’s license, still he is asking “How can I help you?”
When I give in and tell him what to do, he forgets it and I have to control myself not to tell him off.
His memory is failing but he still remembers our phone number in Hungary fifty years ago.
When we are going shopping, he gets out of the car and starts shuffling in a different direction. I have to run after him grabbing his hand.
My life, our life, changed. We had to give up small pleasures like walking in the field for an hour with our dog, Heidi, going to the seashore for a stroll.
Heidi, our ten year old Rottweiler, recently became paralyzed from her waist down, unable to take only a few steps before she collapses, then I have to lift her up and put her on her feet.
Some days I question myself. Why, why me who is burdened to do all these things. Then I look at Tom, and I see in his eyes the suffering, the hopelessness, but still a tremendous willpower to live.
Then I pat Heidi’s head and I feel her energy passing through my body, and even in her crippled condition, she gives me strength to go on, to take every day as it comes and enjoy it to the fullest.
My heart aches, when I see both in reclining health, but still, I feel fortunate to able to take care of them.
Caretaker? Caregiver? I rather call myself a wife and mother.
Part two of a continuous narrative by guest author, Gemma Tammas.
One morning I found Tom tied down in a wheelchair in front of the nursing station.
His head dropped on his chest, saliva was dripping from his mouth.
“He was climbing out of his bed,” the nurses told me, “we had to tie him in the wheelchair and roll him out to the hall to keep an eye on him.”
“All these medications make him crazy,” I argued and from there on, I had no choice but to stay with him during the nights also.
After two long weeks, still feverish, losing half of his weight with gall bladder infection and against his doctor’s advice, I brought him home.
He was weak, not able to stand by himself. With my brother’s help, we would carry him to the bathroom, wash him on his bed and feed him, forcing the food down as he had no appetite.
Slowly he recovered his strength, what was left of it, and our pilgrimage to different specialists began. After six months and countless tests, he was diagnosed with Parkinson disease, Alzheimer and hypothyroid. As he already had a pacemaker, visiting his cardiologist three times a year was now topped with regular visits to his neurologist.
His medication ‘regime’ had to be set, and after six months, a routine was established. To help his memory and to help him to sleep better two more medications were added.
We follow a stringent schedule for his eating as he can only eat an hour before or two hours after with certain pills.
I was amazed how religiously he was taking the pills, he, who never took even an aspirin in his whole life.
Now, from 7am till 10 pm in the evening he is on a strict schedule.
When I wake him up at seven o’clock to take his first dosage – he kisses my hand.
But at night he seems more confused. When I try to put eye drops in his eyes for his glaucoma, I have to force his eyes open because he opens his mouth instead.
This is the man who was the love of my life for thirty years. He will be deeply missed.
In memory of him, and in aid of caregivers everywhere, I intend to continue my blog discussing and hopefully shedding light on the many issues and challenges that caregivers face.
The articles will continue to be about my journey with Chris in the last nine months of his life, and include other caregivers I have met along the way, their associations, resourcefulness, dilemmas and solutions.
I hope you stay with me.
Come and sit with me, Chris laments.
I never dreamt caregiving would be hard on the butt. Or that it would sometimes result in unusual anxieties.
The kitchen table is not cleared of the breakfast things, the garburetor is full of peels and rinds from this morning’s juice making, and the other half of the sink is full of soaking pots and bowls. This makes me anxious. I like to have everything nice and tidy before I do anything else.
As a child I was taught that work had to be finished before such pleasures as reading, watching TV or playing could be indulged.
So as an adult, I like the dishes done almost before we leave the table. If I get up from eating to make a cup of tea, I will take dishes to put in the sink to soak, or food to put away in the fridge. I might tidy the kitchen or wash the few things in the sink while the water is boiling.
And this housework ethic if you could call it that, absorbs so much of my thinking now because I feel my busyness conflicts with caring for Chris. I know Chris wants me to sit beside him and watch endless hours of TV.
Sitting is hard for me. I like to keep busy. It’s like my body isn’t happy at rest.
I do housework when I can no longer sit. I put in laundry before extensive TV viewing so that I have an excuse to get up and move about; change the loads. Fold the clothes.
I also confess to blogging, journaling, and computer solitaire. Yes, I’m sitting then, too—but sitting and doing.
Chris is resting. He has switched off the television: Not even a “B” western, he says irritably. More like a C minus.
Hopefully, he’s making up some of the sleep he lost last night. The breakfast of oatmeal and blueberries, toast and fresh orange juice should help put him to sleep.
The sun shines in. For now, all is well. Except in my kitchen.
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.
As his caregiver, I was pleased but a little concerned that in August of 2014, Chris still ran his small painting business.
He handled inquiries, did the appraisals, got the subcontractor bids and dealt with customer kudos and complaints.
I worried about the stress, but when I asked the doctor about it, his answer was surprising. He said the business was probably what keeps Chris going.
Research indicates that loss of interest in a person’s work or hobbies is one of the major signs of depression in the chronically and/or terminally ill.
This wasn’t the case with Chris. On the contrary, his mental and emotional well-being were certainly bolstered by the small business he’d built up over the years.
Though he could hardly walk to the kitchen some days, still he would summon up the energy to meet with aclient and sell the job.
Chris enjoyed the clients, the paint store reps and lively discussions with the subcontractor.
An important decision to relieve the pressure that came with the business? Getting rid of the one big client who was also the one big stressor. After that, the painting business became purely pleasurable for him.
Usually I drove, due to his health. Afterward, he’d be so energized, we might go for breakfast, or take a run into the States for gas or pick up his meds at Costco.
The doctor was right: starting out with a purpose? That’s what kept Chris going.
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.