My healthy and energetic husband, business partner and best friend had a heart attack at 52. We were still reeling from the affects of 9/11 on our psyches and our business, which needed our undivided attention six days a week. Our two sons were still at home, one homeschooled and one in high school, and our lives were packed full. Life has a way of throwing us curves when we least expect it and true to form, our world was quite suddenly thrown into chaos.
I operated on adrenaline for the first few days and weeks as I took on the full responsibility of our business and livelihood, the care of our children and the care of my husband. We do what we have to do, but churning relentlessly beneath the surface was the heartbreak, the shock, the fear, the loneliness of loss. The emotional ramifications were profound and lasting. He is alive and well, but on so many levels this experienced rocked my world.
Every day women and men across generations and the socio-economic landscape are faced with the difficult decisions and responsibilities inherent in the daily care of a sick or aging loved one. Caring for aging parents is a much talked about concern among adult children, but whether one is caring for a parent, a spouse, or a seriously ill or disabled child, the silent burden of the caregiver is the same. It is profound and constant.
In the midst of the extreme stress and myriad responsibilities of caring for a loved one, family caregivers are coping with one of life's most difficult emotions, that of grief and loss. A woman caring for her husband after a stroke or a heart attack, is not only picking up the slack around the house, shouldering financial responsibilities, and the day-to-day care of her spouse, she is doing so in the midst of a very real and very personal life crisis. She has suddenly lost the emotional and practical support of perhaps her most significant relationship, even if only temporarily. Every morning she looks death in the face and consciously or unconsciously wrestles with the ramifications of losing her loved one, her dreams, and her life as she knew it.
The events leading up to a caregiving situation often occur unexpectedly and without warning. There is no time for preparation. Everything is fine until one day it isn't. The change is immediate and lasting. How is one to keep his/her head above water at such a time?
So often we talk about the role of "caregiver" as if it were a hat we put on, a "temporary" upheaval in our schedules, but it is so much more than that. The grief, the loss of normalcy, not only to our life but to our relationships, lies buried beneath the surface of daily demands. The painful emotions are squelched and shoved aside by necessity and perhaps more likely, by guilt. After all, we reason, we are alive and well. Our needs are not as important as our loved ones. It's not his fault he can't be there for me. There is no time to fall apart, to grieve, or to adjust. It must wait.
When we talk about caregiver burnout, compassion fatigue or the stress of caretaking in general, perhaps the most important dimension to address is that of the emotional upheaval, the undertaking of the grieving process that often begins in earnest and lies buried in silence far too long. The caregiver needs support, compassion and guidance with the silent pain as much, if not more, than they need assistance with practical matters. By the time we move into the caregiving role, most of us are adept at problem solving and decision-making. Our real difficulty more likely rests in making sense of and coming to terms with loss.
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Intent: Losing a Parent... and How Empty Spiritual Teachings Make It Worse
1. "Caring for aging parents is a much talked about concern among adult children, but whether one is caring for a parent, a spouse, or a seriously ill or disabled child, the silent burden of the caregiver is the same."
Even though our healthcare system would fall apart without unpaid caregivers, they are still very much invisible to the general public. While eldercare is being discussed a lot more in the media, we must remember that all caregivers face isolation, depression, guilt and stress.
2. "There is no time to fall apart, to grieve, or to adjust. It must wait."
One of the most painful parts of caregiving is not knowing where, when and how to open up. Often it is hard to find the time and energy to get outside to go to a support group. The internet becomes a lifeline, allowing access to caregivers in similar situations.
Thanks again for this article and for your honesty. Your story has helped so many.
We come to depend so much on one another in long term relationships there's no way a serious illness or sudden death wouldn't rock our world. But we are stronger than we know and there are people everywhere who understand and are willing to walk beside us and hold our hands when times get tough. That's the best there is. The rest goes on in our hearts and souls.
So I have made the decision to have her come to live with me. I am fully aware of the toll this will take on me. My loss of privacy. My loss of a social life. My loss of self.
But until my Mom is in such an advanced state the she is pretty much no longer the person that I know and she has no idea who anyone is or what is going on, she deserves better than living in a depressing nursing home where her life consists of a small radius of a world and is dictated by the regiment of such a home.
I'm glad your husband is doing well. Thank you for sharing your experience, and speaking of it so eloquently.
I was lucky, I survived a heart attack at age 60 relatively well, was out of hospital in a few days and able to help with household and farm animal tasks soon after that.
As new immigrants to Canada having lost our farm and everything we owned, in the violent farm seizures in Zimbabwe a few years before, this was the straw that almost broke the camels back. The heart attack put an end to my business and my income overnight. Starting a new internet based business that would not require much physical effort was an added stressor.
The strain and worry has been much worse for my wife than I. I only had to worry about death, she has to worry about being left alone in a still unfamiliar country with no income and no support network of family and old friends, in addition to worrying about my health.
Yes, the burden is heavier for the caregiver than the cared for. I am grateful that my dear lady has been strong enough to handle it with grace and courage.
I am certain that your wife has experienced many challenges, but being the one who is ill is not pain free! My husband's world was rocked as he, still feeling young and vibrant, was tossed into a rehab group with people much older than he. Many men depend on their ability to be strong and in control. Virility is as important to them as femininity often is to a woman. Being the receiver of care is difficult. So I would have to disagree as to whose burden is heavier, but I do know that when two people pull together and work as a team to solve a problem, they can move mountains!
Thank you for sharing a bit of your story. My best to you and your wife. You are both courageous.
This is so true!!!! I have 4 disabled children and my husband is disabled. He will probably have his lower leg amputated this summer which will mean that 100% of everything will fall on me (again) for a while. My MIL has decided that she "needs" a huge 80th birthday party. She did the same at 70. Me, I'm lucky to get a card. My husband constantly expresses his gratitude that I'm not "high maintenance." But, there are days when I wish I could just be selfish and have a pedicure or go to a spa or see a play. It's not in the cards right now. And, I thought about all this yesterday as I spent the whole day at the hospital with one of my older sons. I didn't get home until 6:00 pm. I sat in that waiting room and I thought how tired I am of hospitals and doctors and meetings at the schools and the dirty house and the lack of money and......