We know more about caregiver stress these days, and the challenges that caregivers face on a daily basis. There are caregiver support groups and more information about respite care.
But while caregiving can be rewarding and fulfilling at times, it is also a very hard role for most, with seemingly never-ending days of fatigue, stress and other factors that can make caregiving a very difficult task.
Let’s look at five challenges caregivers face, and what they can do to help themselves:
Emotional and Mental Stress
Disabilities come in many forms, as does the stress they can cause.
Caring for someone with intellectual disabilities can cause enormous frustration for men and women who cannot always reason with their loved one, who cannot engage in meaningful conversation and are sometimes unfairly berated and abused by those they are caring for.
People who are physically impaired are often very frustrated by their inability to move well, to work or to leave the home. Many take it out on their caregivers for the simple reason that the caregiver is there to vent to.
These vents can be therapeutic when done in a positive way but they can also lead to verbal abuse of a caregiver and can add to the stress of caregiving itself. Leaving the building isn’t possible and the care has to continue.
Caregivers may need to leave the room, have a cup of tea in private and take 10-20 minutes to clear their minds and settle their nerves. Anger at their disabled loved one is natural because caregivers can feel so helpless -- due more to the disability and not the disabled person herself.
Walking away and taking time to calm down is imperative lest both tempers flare. Calling a good friend during the break is a great idea so that they have a sympathetic ear and someone to lean on.
Taking short breaks like this can make all the difference. Having somebody come over on their lunch hour or after they finish work can allow for breaks, fresh air and the chance to regroup.
People with physical disabilities have mobility issues. Some have moderate problems with movement, others are completely dependent on their loved one. Caregivers have to lift, shift, carry and push their dependents in order to clean, feed and provide movement.
Movement is important for disabled people, to avoid bed sores, to keep muscles strong and to avoid depression. But these activities can injure caretakers substantially if they make a wrong move.
Lifting can cause back or neck injuries. Caretakers should look into hoyer lifts (some insurances cover them), slings and back braces and ask others to assist in moving. An injured caretaker cannot look after their charge, and could also end up disabled themselves.
Caregiving saves the government billions of dollars.
A 1997 study by Peter S. Arno, Carol Levine, and Margaret M. Memmott, found that by “using large, national data sets [they] estimate that the national economic value of informal caregiving was $196 billion in 1997. This figure dwarfs national spending for formal home health care ($32 billion) and nursing home care ($83 billion).”
While this is great news for the taxpayer, it shows how devalued caregiving has become from a human aspect, while the economic savings for the government gets even higher.
Many countries offer a “carer” or “caretaker allowance” in the form of a monthly check. The United States offers no such help, forcing many to take on outside jobs for income and essentially working a double shift every day, but only being paid for one.
For those who cannot combine shifts, poverty or bankruptcy can be a real threat.
To combat this, ensure that your loved one is receiving all the disability benefits they are entitled to. Use the money wisely so that the bills can be paid and food put on the table for both of you.
Don’t be afraid to ask for help from adult children in the form of bringing meals over, helping with housekeeping, and giving holiday presents in the form of practical gifts cards.
A son or daughter should turn to their siblings for financial help in caring for elderly parents. All too often the burden falls on one or two siblings.
Siblings who live further afield can be asked for small financial assistance if they can afford it. When in town, they can spend time with their parents and allow the primary caregivers a much needed break.
Caregivers should never feel guilty about asking for help. Food pantries, churches and community centers can offer assistance and some adult care centers offer their services for free or on a sliding scale.
If possible, the disabled loved one should go to one of these centers. Caregivers can get a break and loved ones can socialize outside their homes and enjoy an environment of peers.
Call churches, community centers or social services to see if these activities are offered. Meals on Wheels is another great service to consider.
Isolation and loneliness are often major factors for caregivers. Friends may not know how to help, or worse, withdraw their support. Days and nights are spent caregiving, going to medical or therapeutic appointments and general housekeeping.
Sometimes it seems that the world has gone on without the carer and he/she feels left behind and forgotten.
Don’t be shy or private about this -- really! Use social media as an outlet. Invite people over and let people know you still need a social life. The real friends will react positively.
Go to church, book clubs, join walking groups (exercise is a known antidepressant), head to the library, a friendly coffee shop or have lunch with co-workers. Talk about your challenges. You won’t be considered a whiner. You’ll probably find that more people than you think will know where you’re coming from.
Fears of the Future
Caregiving means taking each day as it comes. Depending on the disability of a loved one, prognoses differ and health can be maintained or can drastically change without much notice. The unknown is terrifying for both caregiver and loved one.
There are financial concerns of course, as we discussed earlier but there is also the unknown of the disease/disability itself.
A support group that focuses on one particular disease or disability is a great way to hear the experiences of others, to know what to expect, and to shed more light on the day-to-day challenges that the particular disability causes.
Support groups are a place for people to talk, vent, express concerns, learn and just socialize.
To find a support group for your needs, click here for the Family Caregiver Alliance.
This link supports caregivers for many disabilities and conditions, as well as the special needs of the LGBT community.
US National Library of Medicine. National Institutes of Health. “The economic value of informal caregiving.” Web. Retrieved Nov 18th 2014.
EmpowHER has a very active thread about caregiver stress and is filled with the many stories of caregiver and care receivers alike. Read all about that here:
Reviewed November 21, 2014
by Michele Blacksberg RN
Edited by Jody Smith