Imagine running a help wanted ad for a caregiver with these requirements: “Caregiver wanted. Must work 7 days a week, 24 hours a day, 52 weeks a year. No pay. No breaks. No vacation. No benefits. Apply in person. Bring a packed suitcase and plan to stay indefinitely.”
How many people do you think would show up? Not many, right?
We all know it would be impossible to hire someone to work 24 hours a day with no time off, regardless of how much money you offered. So, why, as family caregivers, do we think that we’re shirking our responsibility and acting selfishly when we take a little time for ourselves?
Here’s the bottom line: If you want to avoid caregiver burnout and maintain the mental, physical and emotional strength you’ll need to care for a loved one over an extended period of time, you must make caregiver self-care as high a priority as your care receiver’s care.
Self-care is important because when caregivers reach the point of burnout, they can lose their ability to feel compassion and empathy for their care receiver. They experience extreme fatigue, anxiety and depression along with physical symptoms such as:
backaches and digestive disorders
• Weight loss or gain
• Difficulty sleeping
• Withdrawal from friends, family and other loved ones
• Feelings of irritability and apathy
• Desire to hurt oneself or inflict harm on the care receiver
In the midst of an acute health crisis, it is necessary and appropriate to put your own personal desires on hold and make your care receiver’s needs the top priority. However, when the crisis is over and you have settled into a long-term care situation, in order to stay healthy yourself, you will need to find respite care so you can take some occasional breaks from your care giving responsibilities.
Getting respite care is not selfish. It may be the key to your survival. In one letter my mother wrote to me after she’d pushed herself too hard for an extended period of time, she said, “I realized I will be of absolutely no use to Quentin if I end up in the hospital or the morgue. I have to start paying attention to my own health.”
What is Respite Care?
The dictionary defines respite as a short period of rest or relief from something difficult or unpleasant. It’s further described as a rest, break, breathing space, intermission, recess, time out; relief, relaxation and an informal breather.
Respite care services are provided for the benefit of the caregiver. The care receiver is watched over by someone else for a few hours, overnight, or sometimes for several days. This can happen at adult day care centres, in a person’s home, and at assisted living and skilled nursing facilities. Some services are free and provided by volunteers, others are fee-based.
The following programs can offer relief for caregivers, and at the same time, benefit the care receiver:
• Adult day care centres provide a group setting where seniors and disabled individuals can go for recreation, rehabilitative therapy, meals, and health care. It’s not unusual for care receivers to resist going to day care just as toddlers resist going to child care. However, once their caregiver is out of sight, they will most likely settle down and have a good time.
The benefit to participants is that when they show up, everyone is happy to see them. No one is irritated or upset because of something they did earlier in the day. They get to take part in activities in which they experience fun and success. They enjoy a change of environment, and they benefit from the social stimulation and energy that comes with interacting with other people.
Caregivers benefit because they get some time to themselves to shop, work, read, rest, attend a support group meeting, or have lunch with a friend. Time away relieves stress. It’s like hitting the “reset” button.
There are programs that offer care for a few hours a day and some that provide all-day care. Financial assistance may be available, and fees are sometimes charged on a sliding scale, based on a person’s ability to pay.
• Non-medical personal care providers can be like “the other daughter.” Companies such as Griswold Home Care provide licensed and bonded caregivers who will help with activities of daily living (ADL’s), such as bathing, dressing, and using the toilet. They offer companion services that might include providing transportation to doctor appointments or the grocery store. They can take your loved one out to lunch, to visit a friend or to see a movie. It’s not unusual to ask a personal care provider to do light housework, cooking, laundry and minor repairs. Depending on the need, they can work a few hours a day, or they can live in and provide around-the-clock companionship.
It is possible to hire an independent personal care provider through an ad in the paper or on Craigslist. However, the advantage of hiring someone through a company such as Griswold is that the individuals have already been through a rigorous interview process and background check. If they have a personal crisis or illness that prevents them from coming to work, it is up to the agency to find a replacement.
Having a companion can help the care receiver avoid feelings of isolation and loneliness. The assistance provided by a personal care worker can help an individual continue to live in his/her own home. It allows caregivers to maintain their own schedules with the confidence that their loved one is safe and his/her needs are being met.
Fees range from $19 to $24 per hour, which may sound expensive, but when you consider the average cost of an assisted living facility is in excess of $3,000 a month, a family can keep their loved one safe in their own home and save a considerable amount of money, even if they hire help for 20 or more hours a week.
Short term residential care can provide family members with the opportunity to turn over all their care giving responsibilities and take a break for a few days or even a few weeks. Often people who have long-term progressive and degenerative diseases have difficulty sleeping. When they don’t sleep, their caregivers don’t sleep. Sleep deprivation can have a devastating impact on a person’s ability to think, reason and function. Before you reach the point of physical collapse, you could check your loved one into an assisted living or nursing home facility so you could take a vacation or just go home and sleep.
After caring for my dad for more than six years, my mother was physically, mentally, and emotionally exhausted. Dad took a terrible fall and ended up in a rehab facility. Once he got settled, Mom spent a few days at a Catholic convent where the sisters provided a silent retreat. I don’t know whether Mom would have been able to muster the strength to go on if she hadn’t spent a few days away from the physical strain and emotional stress of caring for Dad.
Nothing will ever make the job of caring for an aging, chronically ill or disabled person easy. But if you can accept the idea that providing occasional relief for the caregiver is as important as providing care for your loved one, you will have a much greater chance of avoiding caregiver burnout.
Getting enough rest and scheduling regular respite breaks will not only help you survive, it could end up being one of the most generous and beneficial things you will ever do for your care receiver.
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