For myself, time to reflect upon how to balance my desires and expectations with the caregiving role I had assumed for another. This was of most benefit to me.
It was after the death of my father that I came to experience the positive change in attitude that this time of reflection can bring.
Mom and I had never been close. We never had what is viewed as the traditional ‘mother-daughter’ relationship. In fact, we’d had strong differences of opinion, and unresolved situations from our past.
But after the death of my father, Mom had nowhere familiar to go. And she was already in the early stages of dementia.
While we lived in a big city and she came from a small rural area, I felt she would be more comfortable living with my husband and I than with strangers in a rest home.
But could this work?
After a great deal of thought I came to the following decision: If I loved Mom, and cared for her well-being enough to want her to come and live with us, then I was clearly able to, if not forget the past, at least to forgive her for her part in it, even if this remained unspoken.
And if I loved her that much, then we would be okay. I would have no expectations of her. I would see what she could manage on her own and with what she needed help, and move forward from there.
That decision set my attitude.
Letting go of the past opened the way for Mom and I to eventually establish a curiously close relationship, one which had eluded us during my youth, and to heal the wounds we both had suffered in our mother-daughter angst.
Years later, as my husband, Chris, grew weaker and his heart disease progressed, I knew I needed help. I availed myself of what the local public health agency had to offer, but it was very limited.
In church one Sunday the priest told us to reflect upon whatever special blessing we required. I knew what I needed:
I needed God’s grace to see me through to the end of my husband’s illness. It is one thing to do what is asked of us by life, but it is another thing entirely to do it with love and joy.
No, I was not always cheerful and loving! I’m also human!
But at times when I caught myself ‘tensing’ into a reactive and unpleasant state I’d remember my prayer for grace, breathe out my tension and relax into a more loving approach; one that benefitted both myself and my husband.
We don’t have much time to ourselves; at least, I didn’t. But once or twice I had the time to think deeply about my position as caregiver.
And I believe it was the result of the thoughts generated, the decisions made and the attitude engendered by these times of contemplation that made my caregiving experiences positive.
It was in these times of reflection that I came to realize it is not the person in my care who determines how I feel about looking after them. That comes from within me.
I learned that I decide what my attitude will be, what presence I will bring into the room.
En route to Phoenix this week, I discovered an article on ground-breaking research by Dr. Paul Alan Cox into what scientists call the “tangle diseases”.
Alzheimer’s, ALS or Lou Gehrig’s disease, Parkinson’s, Lewy’s Dimentia, Pick’s disease and supranuclear palsy are all caused by a build-up of placque and misfolding of the proteins in nerve cells.
Cox, who has studied this affect in several countries over a number of years has established research that may suggest that an amino acid known as L-serine could prevent or slow the onset of tangle diseases.
Cox believes another amino acid called BMAA, when consumed in massive amounts becomes a toxin, replacing L-serine. The absence of L-serine then allows the breakdown of proteins, causing the build up of placque and killing nerve cells.
He found one society which was free of tangle diseases.
“Centenarians walked as gracefully as ballet dancers,” Cox reported. He found their diet was rich in seaweed and tofu, two foods known to contain high levels of L-serine.
L-serine is available as a powder through Amazon.
L-serine is also a natural component of tofu, seaweed, sweet potatoes, and author Jay Heinrichs adds, “even bacon”.
Currently the FDA is looking into the sale of L-serine as a supplement.
The information in this article comes from the article “The Storied Man” by Jay Heinrichs in Southwest, the Magazine. September 2016 edition.
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.
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/
For twenty-one years now I have lived with a man who daily reminds me he is dying.
This has led to a split life for me. I find myself constantly in conflict, constantly questioning my priorities. What should I do next? Spend time with him? Or get on with my work—whether it be writing, housework, or bookkeeping. Or time with friends.
I talked with clinical counselor, Alma Vaugeois about the frustration of constantly having to forego choices unrelated to the caregiver role.
Having to constantly focus on the person being cared for can mean giving up aspects of one’s own life, Alma explains.
Because all of your energy is going into him, there will be a sense of loss for yourself.
This rings true with me. I do feel that I have somehow lost ‘me’ somewhere in that deep chasm between the immutable ‘now’ and the looming ‘then’.
Somewhere between “life with Chris”and the looming future of “life after Chris” my own life seems to have slipped away.
It is ironic that even as delicate as his health is, he can travel with his children without his timelines being affected by any aspect of my life, whereas I have put off a number of trips in consideration of his next procedure, or his present fragile condition.
And I ask myself, are these the ‘fear based’ decisions that self-help gurus preach against? Or are they merely practical considerations in light of his medical history and current situation?
I need to figure out how to carve out time for me, to see some aspect of myself as blooming, even if only in inner space.
I need to find a way to feed my passions while still caring for him to the best of my ability.
Because if I toss my entire life to the wayside in my intent to care for him, I will become resentful and bitter.
I will fester in the role of caregiver. And me festering? It ain’t a pretty picture!
To learn more about Alma Vaugeois, go to www.almavaugeois.com
With this diagnosis, the admission that all that can be done now is medicate to make him more comfortable in a deteriorating condition, his world has radically altered.
And shock waves reverberate in mine.
For twenty one years, ever since his first heart attack, this man has told me every day that he is dying. Over the years I have come to take it lightly.
We’re all dying, I might reply. Or:
For someone who’s dying, you’ve outlived an awful lot of people.
But now I must take this notion seriously. No more light hearted bantering. He will grieve. His response to this diagnosis will be an attitude he owns. It is not for me to dictate or project.
And as for me? As selfish as it seems, I must be practical. Find out exactly how much money I will have in pensions each month, make projected budgets, determine which things need to be bought out or paid off now while there is still another income coming in.
There are funeral expenses. How much will that be? Will the life insurance cover it? What about our debt?
He has agreed to cremation but I know in his heart he wants to buried and we do have the cemetery plots. Will I be able to afford to bury him and still have enough to tide me over for the few months before the survivor’s pension and the income supplement kick in?
I need to be prepared. And to help Chris prepare. God help us both.
When we were married, it never occurred to me that one day I would be his caregiver!
We were married late in life. Chris worked in sales, had three children and I was a twice-divorced single mom with three teenagers. I worked as a dispatcher in Cablevision, making union wages.
Over the years we changed residences and jobs often. The kids flowed between parents and our lives were fairly chaotic.
In 1991, Chris was diagnosed with diabetes. We had our own businesses then, but it became obvious a change was needed. I went to work for the government in Vancouver.
In 1993, still in sales, he had his first heart attack. He’s had angioplasties almost every year since.
In 2000, Chris started a painting business. In 2004 the business was booming and we bought a big old house on half an acre on Surrey’s Panorama Ridge.
In 2006 he had open heart surgery. In 2012 after a brief road trip he had two heart attacks in less than thirty days. An experimental bypass followed four months later.
The stripping of veins from his legs to use for the bypass set Chris back a lot. Walking continued to be painful making it difficult and then impossible for him to assess and negotiate jobs with prospective clients.
We downsized again to a small apartment close to all amenities. In mere months our annual gross income plummeted. Like many other people who are struck by disease or disaster, we face new challenges every day.
This blog is about how we choose to face those challenges.
My husband thinks he is going to die. This Friday. On the table. Having an angioplasti.
He hasn’t said so, of course, but he’s hinted rather specifically.
If things don’t go right on Friday, he worries.
They will. I try to sound reassuring instead of impatient.
But if they don’t.. he begins again.
Then everything we’ve been talking about for the last twenty years will fall into place, I say.
Heartless of me, perhaps, but then we’ve been having this discussion since his first heart attack in 1993, since his ten or twelve angioplasties, since his open heart surgery in 2006, since his experimental bypass in 2012.
And looking at that history? I realize I have been a caregiver of sorts for most of our thirty year marriage.
I just want to enjoy the time we have left. Live in the present. Not the future or the past.
Because after all these years, I can’t help but be aware of the fact that I am a widow in waiting. And a guilty part of me does look forward to a life where I will not be second guessing anyone, where I will be the focus of my day, my money, and my life.
But that is not my focus now. My concern now is to get him in and out of that operating theatre with confidence. So I’m going in absolutely one hundred percent positive that everything will be fine.
History repeats itself, right? Pray God it does tomorrow, too.
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 