Caregiver distress is growing: Health Quality Ontario's report highlights challenges faced by the province's informal and unpaid caregivers
My recent late-night emergency department shift was like many others. I saw patients of all ages and a broad range of medical issues. As I reflect back, two patients stood out.
Both were elderly men with serious complex chronic conditions. But one was fortunate enough to be accompanied by family members, whereas the other arrived by ambulance alone. In the first case, the man's wife and daughter helped communicate his health issues because he didn't speak English.
They brought his recent medical records and were a comforting presence over a period of several hours. Their participation in his care helped make it possible for me to send him home in accordance with his wishes.
These critical caregivers are rarely acknowledged when we talk about the health system.
Without similar help, the other man spent several hours alone as we tried to piece together what was happening; he was admitted to the hospital though he had hoped to go home.
It struck me how much difference can be made by the presence of family and friends. Yet these critical caregivers are rarely acknowledged when we talk about the health system.
Chances are most of us have acted as informal, unpaid caregivers at some point for a parent, child or spouse. When we serve in this role, we provide critical support to our loved ones and the health system at large. However, this support often comes at a personal cost, especially when caregiving stretches into months or even years. During that late-night shift, the man's daughter spoke urgently about wanting to stay with her father, but also needing to return home to her kids and be ready for other commitments the next morning. Visibly distressed, she was torn between duties to different parts of her life.
Health Quality Ontario has released a new report to better understand distress like this, among unpaid caregivers of long-stay home care patients in Ontario. We found rates of stress, anger and depression have more than doubled for these caregivers, climbing from 15.6 per cent to 33.3 per cent between 2009/10 and 2013/14.
Within that time frame, long-stay home care patients cared for by family members or friends have also become collectively more cognitively impaired, more functionally disabled and sicker.
In Ontario, at least one informal caregiver, such as a spouse or adult child, shoulders the everyday care of almost all long-stay home care patients (97 per cent) who also receive publicly funded home care. Most assume the role with little to no formal training, stepping in to fill the hours not covered by a paid support worker.
For many informal caregivers, time-intensive caregiving can lead to sleepless nights, emotional exhaustion and feelings of guilt or loneliness that may negatively impact their lives. Some studies associate long-term caregiving with physical problems, such as back aches, migraines, stomach ulcers, hormonal changes and even early death.
Our report also shares stories from families across Ontario. Nghi is a former trading supervisor for a stock brokerage, who must decide between returning to work and selling his home in order to pay bills related to informal caregiving for his mother. Carole Ann stood by her husband Bill throughout his five-year ordeal of nine ankle surgeries, many infections and congestive heart failure. "Bill's wounds have healed," she says. "But I don't think I have."
These stories complement compelling data to show the complexity of issues faced by caregivers.
Watching someone we care about suffer from prolonged illness or declining health is always difficult, so it's not possible to completely eliminate distress. However caregivers should not have to endure avoidable stress.
Caregivers are an integral part of our health system. It's critical that we support them in times when they support others.
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Talking with other people who face the same daily challenges can help caregivers manage stress. Specific types of support groups can vary on a community-by-community basis; check out this Caregiver.com guide to find the right program for you.
Caregivers have their hands full and may not have the time to meet with an in-person support group. In that case, an online support group can be a great alternative.
Support groups not your thing? You can see what other people are saying about caregiving by just checking out a simple message board, such as this one sponsored by AARP..
You may need to attend an event or simply seek a few hours for some much-needed rest. Eldercare.net offers a Search For Respite Tool or Eldercare Locator where you can find professional help. Also check out this guide from caring.com for more respite-care ideas.
Does your loved one need transportation to go buy food or go shopping? There are numerous van and shuttle services specifically for seniors. Contact your local Area Agency On Aging for one near you.
Don't have time to shop and cook? Consider a service that will deliver gourmet meals to your home, no matter where you live. For low-income seniors in need, AssistGuide Information Services offers a directory of food services available.
During the 2009 economic downturn, 1 in 5 family caregivers said their finances were so strained that they were forced to move into the same home with their aging loved ones to reduce expenses, according to a survey by caregiving.org. Some 47 percent of working caregivers indicate that an increase in caregiving expenses caused them to use up all or most of their savings. The Many Strong Support Network has a fundraising tool which allows other people to anonymously donate funds to people who are under financial strain.
If ever you have a question about resources, or need support at a moment's notice, AARP's caregiving support line is available at 1-877-333-5885, Monday through Friday, 9 a.m. to 5 p.m. Senior care advisors for Care.com, also provide free counseling for caregivers, and help them map out the best course of care for their loved ones.
Organized caregiver co-ops can provide an affordable way to coordinate care for your loved ones. Check with local community centers or this Adult Day Care Directory to see if someone in your area has already started one.
Care.com's Senior Care Directory can set you up with a housekeeper, errand runner, pet sitter, or whatever you need to make the caregiving experience a little more manageable.
According to author of "The Medical Day Planner", Tory Zellick, hospital social workers are a great resource for all caregivers. "[Hospital social workers] are always armed with information for your community," said Zellick.
Websites like Lotsahelpinghands have caregiving communities that connect volunteers with caregivers in need of support or help.
Family gatherings offer a great opportunity to discuss the future of loved one you care for, says Dr. Bruce Chernof, president and CEO of The SCAN Foundation. The group offers a guide -- "10 Conversations To Plan For Aging With Dignity And Independence" -- to lay the groundwork for these critical discussions.
Follow Dr. Joshua Tepper on Twitter: www.twitter.com/DrJoshuaTepper