If you’re caring for an aging parent or facing the challenges of assisting a loved one or friend who is chronically ill, disabled or elderly, you are not alone. You are one of the 22 million Americans who care for an older adult. Caregivers provide 80 percent of in-home care, but unlike nurses and home health aids, they are unpaid for their labor of love.
“Caregiving is a difficult job that can take a toll on relationships, jobs and emotional well-being,” says Dr. Elizabeth Clark, executive director of the National Association of Social Workers. “Those who care for others need to be sure to take care of themselves, as well.”
Here are some important tips for caregivers:
Don’t Be Afraid to Ask For Help
We tend to wait until we are in crisis before asking for help and consultation. Seek out the help of a licensed clinical social worker or other trained professional.
It’s Not Easy to Tell Your Parents What to Do
The most difficult thing about caring for a parent is the day you have to tell them they need to have help, they can no longer drive or they may have to move from their home. Discuss long-term care wishes and desires before any decline happens.
Take Care of Your Mental Health
It is not unusual to feel frustrated with your parents or children when they refuse your input and help. Seek a referral to a professional who can help you cope with your personal issues and frustrations.
We live in a world of constant change. Medications and treatments are constantly changing and the only way to keep up-to-date is to stay informed with the latest news. Attend local caregiver conferences, participate in support groups, speak with friends and relatives, and talk with professionals in the field of gerontology and geriatrics.
Take Time Out
Caregivers who experience feelings of burnout need to accept that occasionally they may need a break from their loved one in order to provide him or her with the best care.
Humor and laughter are tremendous healers.
If possible, you may want to hire help. The most important thing is to find trustworthy people to provide assistance. Use recommended home care agencies, talk with friends about their experiences and interview professionals before deciding on the one you are going to retain.
Joanne’s mother, Betty, had rheumatoid arthritis for years. Suddenly and unexpectedly, Betty was disabled by the pain, fatigue and limited mobility that she had feared since her diagnosis.
Joanne convinced her fiercely independent mother that living alone was no longer an option. And Joanne, the eldest of four children, knew that caring for her sick mother fell on her shoulders. Joanne was a legend in the circles of her family, friends and colleagues for her ability to act with grace under pressure.
Joanne took two weeks of vacation from her job and cooked and froze meals for her husband and three children. As she flew to her hometown, she wondered how she would coordinate her mother’s care from a distance. Supporting her husband as he built his new business, nurturing her kids and directing a major project at work already made her feel that she was running on empty.
You may relate to Joanne’s story. One out of four Americans cares for a friend or relative who is sick, disabled or frail. That’s 46 million Americans who offer unpaid help to a loved one. If they were paid caregivers’ compensation would exceed last year’s Medicare budget! And if you become a caregiver, you, like Joanne, may try to do it alone, shrouded in secrecy.
Solo caregiving compromises your ability to nurture yourself and others. Let’s take caregiving out from behind closed doors. For your sake and the sake of those who count on you, please get some help. Caregivers are competent people who feel that they should be able to do this job. Yet, many soon find themselves unprepared and ill-equipped to manage the sometimes daunting tasks, such as managing a complex medical regimen or remodeling a house so it’s wheel-chair accessible or even finding someone to stay with their loved ones so they can go out to a movie without worrying their relatives will fall on the way to the fridge.
If you are a caregiver, you know that this act of love has its costs. You stand to forfeit up to $650,000 in lost wages, pension and social security. Add to that is the personal cost to your well-being, as your new demands leave you less time for your family and friends. You may give up vacations, hobbies and social activities. Finally, caregiving places a burden on your health. Caregivers are at increased risk for depression, anxiety, depressed immune function and even hospitalization.
Instead of reaching out, caregivers become isolated. Many who assume the caregiving burden fit the profile of the giving family member, like Joanne, who does not want to trouble others with their problems. Some fear the consequences of disclosing their new demands to coworkers or employers. Caregivers are further challenged by the cultural conspiracy of silence. Our youth-centered society turns a blind eye to the unpleasant and inevitable reality that all of us age and die. This leaves both caregivers and care recipients unprepared. Look no further than the path of Hurricane Katrina to witness the consequences of a lack of planning.
What can you do? Start talking about the “what ifs” and make a plan.
1. Start with yourself. What will happen to you and your family if you become disabled or die unexpectedly? Do you have disability insurance? Do you have a will? Do you have a living will, and have you identified the person who will make the medical choices you would make if you are not in the position to do so?
2. Approach healthy family members. Say, “I hope that you live many happy years in which you enjoy all of the pleasures you worked so hard to create.” Have you thought about what would happen to you in the event that you cannot live independently anymore? If some medical event befalls you, who would make your medical choices?
3. Look into community resources that support caregiving. A day program, for example, helps your loved one by providing social connections with peers. Your community may even offer transportation to and from the program. Getting out of the house offers the additional benefit of getting bodies moving. Socializing and exercise are the two most powerful interventions that help your loved ones stay at their best.
4. Make specific suggestions to friends, family members and neighbors who want to help. You may even want to keep a “help list.” When they say, “Let me know what I can do,” you have a response: “Could you take Mom to her physical therapy appointment this week?” “When you’re at the store, could you pick up some oranges and blueberries?” “Could you watch the kids for an hour so I can get to the gym?” Your giving friends will appreciate specific ideas about how they can help.
5. Take care of your health. Get good nutrition, plenty of sleep, and regular exercise to stay in top health. Wash your hands regularly to prevent colds and flu. Manage your stress with laughter, a prayer or even a deep breath. Nourish your soul with a taste of activities that recharge your batteries such as writing in your journal or gardening. Finally, talk to your doctor if you feel depressed or anxious.
The best strategies for effective caregiving include preparation, acts of self-care and reaching out for help. That begins with the courage to start talking openly about caregiving.
Guilt is a common feeling in the landscape of care giving. Guilt can propel you to be the best you can be …or it can immobilize you.
For caregivers, painful feelings — such as guilt, sadness and anger — are like any other pain. It’s your body’s way of saying, ‘Pay attention.’ Just as the pain of a burned finger pulls your hand from the stove, so, too, guilt guides your actions and optimizes your health.
You have a picture of the “Ideal You” with values you hold and how you relate to yourself and others. Guilt often arises when there’s a mismatch between your day-to-day choices and the choices the “Ideal You” would have made. The “Ideal You” may be a parent who attends all of the kids’ soccer games. Miss a game to take your dad to the doctor, and you think you’re falling short.
You may have needs out of line with this “Ideal You.” You may believe that your own needs are insignificant, compared to the needs of your sick loved one. You then feel guilty when you even recognize your needs, much less act upon them. A mother may ask herself, “How can I go out for a walk with my kids when my mother is at home in pain?” (A hint for this mother: she can give more to her mother with an open heart when she takes good care of herself.)
You may have feelings misaligned with the “Ideal You.” Feeling angry about the injustice of your loved one’s illness? You might even feel angry at your loved one for getting sick! Recognizing those feelings can produce a healthy dose of guilt. Yes, you may even feel guilty about feeling guilty.
“Why did my loved one get sick?” you may ask. Perhaps, if the “Ideal You” acted more often, your loved one would be healthy. What if you served more healthful meals? What if you called 911, instead of believing your husband when he said his chest pain was just “a little heartburn”?
If you’re the kind of person prone to guilt, learn to manage guilt so that guilt serves you rather than imprisons you. Here are 5 tips for managing your caregiver guilt:
Recognize the feeling of guilt: Unrecognized guilt eats at your soul. Name it; look at the monster under the bed
Identify other feelings: Often, there are feelings under the feeling of guilt. Name those, too. For example, say to yourself: “I hate to admit this to myself, but I’m resentful that dad’s illness changed all of our lives.” Once you put it into words, you will have a new perspective. You will also be reminding yourself of how fortunate you are to have what it takes to take care of loved one.”
Be compassionate with yourself: Cloudy moods, like cloudy days, come and go. There’s no one way a caregiver should feel. When you give yourself permission to have any feeling, and recognized that your feelings don’t control your actions, your guilt will subside.
Look for the cause of the guilt: What is the mismatch between this “Ideal You” and the real you? Do you have an unmet need? Do you need to change your actions so that they align with your values?
Take action: Meet your needs. Needs are not bad or good; they just are. If you need some time alone, find someone to be with your loved one.
Change your behavior to fit your values: For example, Clara felt guilty because her friend was in the hospital and she didn’t send a card. Her guilt propelled her to buy some beautiful blank cards to make it easier for her to drop a note the next time.
Ask for help: Call a friend and say, “I’m going through a hard time. Do you have a few minutes just to listen?” Have a family meeting and say, “Our lives have been a lot different since grandma got sick. I’m spending more time with her. Let’s figure out together how we’ll get everything done.”
Revisit and reinvent the “Ideal You”: You made the best choices based on your resources and knowledge at the time. As you look to the future, you can create a refined vision of the “Ideal You.” What legacy do you want to leave? What values do you hold dear? Then, when you wake up in the morning and put on your clothes, imagine dressing the “Ideal You.” Let this reinvented “Ideal You” make those moment-to-moment choices that create your legacy.
Understand that you will be a more effective caregiver when you care for the caregiver first. Loved ones neither want nor expect selfless servants. As a caregiver, when you care for yourself, you increase and improve your own caring. Yes, guilt is part of caregiving, but this guilt can help you become the caregiver you and your loved one want you to be.
5 Tips for Decreasing the Cost of Caring for Elderly Parents
Over 30 million Baby Boomers provide countless hours of
assistance to elderly parents at no charge. It is estimated that, using average
hourly wages, the total amount of this uncompensated care is comparable to the
entire Medicare budget. For the estimated 7 million Boomers who provide long
distance care, actual out of pocket expenses amount to almost $5,000 per month.
For caregivers who have, or are considering leaving the workforce to care for
an ailing parent, the costs are even greater over $650,000 in forfeited
salaries, benefits and pensions.
This stark economic reality shows only one dimension of the
price caregivers pay for this act of love.
Caregivers pay with losses that extend well beyond their
bank accounts. They often forego the activities that bring joy and richness to
their lives, like meeting friends for dinner, or going out to the movies or
taking family vacations. They pay with their time, the loss of professional
opportunities and the erosion of personal relationships that result in
Sometimes, otherwise healthy loved ones need a short dose of
care as they recover from an acute medical episode like a broken leg. Usually
loved ones are on a path of steady decline with cascading assistance needs.
Some caregivers sacrifice large chunks of their own lives as they help their
parents and other family members and friends peacefully make their transitions.
Caregivers can pay with their own health and well-being. In fact, we have
evidence that some caregivers pay for their acts of care with their very lives.
You can decrease the personal and economic costs of
caregiving. This means proactive planning rather than reactive responding.
Planning saves money. You know this as you reflect upon your experiences of
going to the grocery store with and without a shopping list. Planning also
minimizes personal wear and tear and decreases stress. You will feel much
better when you know your options and develop back-up plans before you jump
into a challenging project.
5 Tips to Decrease
the Cost of Caregiving:
1. Begin the
conversation today. We have tremendous cultural resistance to the
recognition of aging, disability and death. Just as the first few steps uphill
are the hardest, so, too, you may meet the greatest resistance simply starting
the conversation about their possible need for care. Say today, Mom and Dad, it
would be great if you lived forever, but the discovery for the fountain of
youth is nowhere on the horizon. What thoughts and plans do you have about
enjoying your golden years?
2. Create a plan.
Talk with your parents about their ideal plan if they are no longer able to
care for themselves. Then, start to work toward that proactively. Investigate
long-term care insurance. Draw up the appropriate legal documents. Find out who
would make medical choices if they were not able to make them on their own,
along with some guiding principles for the choices. You can anticipate and
limit parental resistance by saying, Mom and Dad, I just got back from the
lawyers office signing my will and durable medical power of attorney. I’ve
asked Mitch to make my medical choices if I cannot make them myself. Just so
you know, if I were in vegetative state, I wouldn’t want to be maintained on a
machine. You probably already planned ahead too, right?
3. Use personal and
community resources. Make caregiving a family job to which each member
contributes. Even children can make grandmas life special with drawings and
phone calls. Identify services that make your job as a caregiver easier. If you
and your parents live in the same community, check with friends and neighbors
and local organizations to learn about services and resources that will make
your job easier. You say, Mom has just moved in with us, and she wants to find
a card game with the girls. Do you know of any senior centers that have social
events? How about transportation?
Were a mobile society and millions of caregivers live more
than an hour away from their parents? Executive William Gillis learned from his
own personal experience how challenging it is to identify community resources
from afar. As he was carving the path that ultimately led his on-line portfolio
management service, he became the caregiver for his father. Talk about mixed
emotions! Professionally, he was introducing a service that let millions manage
their investments with one click of a computer mouse. Personally, he was
investing untold hours just to find one bit of information to help his dad.
As with so many innovators, he used his personal and
professional experience to launch Parent Care, a service that he wished would
have made his life as a caregiver-at-a-distance easier.
cost-savings tips. This might mean something as simple as ordering generic
medication or regularly inquiring about senior discounts. But, most cost
savings opportunities aren’t as obvious. Mr. Gillis found, for example, that
some states will pay for phones for hearing, visually or mobility limited
seniors or fund home safety improvements. He said, we’ve invested heavily to
locate time and money saving resources that most would have difficulty finding.
I made it a personal mission to help other caregivers avoid some of the costs
and frustration I encountered. You don’t have to re-invent the wheel. Tap into
the resources others have collected.
5. Take care of
yourself. You will be able to provide the best care as a caregiver when
you’re at your best. Get good nutrition, enough sleep and regular exercise.
Manage your stress and do a little something every day to nurture your soul.
Understand that you are at increased risk for anxiety, depression, and weakening
your immune system. Talk to your doctor if you see worrisome signs such as
problems sleeping, changes in appetite or loss of interest in activities you
Despite the costs, most caregivers say that they received
much more than they gave. Most say they would do it again, and many do.
Sometimes the question is not the personal cost of
caregiving; it’s the value that you bring to the lives of others that matter at
the end. What personal cost are you willing to pay for the privilege of helping
those who welcomed you into the world to enjoy their golden years and travel
the road of illness with love and dignity?
The relationship between an elderly person and his or her
caregiver is complex and intense sometimes.
But that relationship does not exist in a vacuum. There are a lot of people affected by what is
going on when that caregiver goes to that senior citizens apartment and give to
him or her that one on one attention that is so necessary.
For one thing, the caregiver’s friends, family and coworkers
are affected. Becoming the primary
person responsible for the care and well being of a senior citizen is a
peculiar job because it is tremendously demanding and completely unpaid. Caregivers are for the most part children or
close relatives of the senior citizen being cared for and they have jobs,
families and a full life outside of the time they put in taking care of their
parent or parents.
So when that responsibility falls to you, those around you
also have to give a little to help you accomplish that goal. But for those who are related to a caregiver,
there is a demand on you as well. If mom
has to go over to Grandpa’s apartment every night for two or three hours, that
means mom isn’t home helping you with your homework, making supper or just
being available if her little girl needs someone to talk to.
If dad is gone thirty or forty hours a week taking care of
Grandpa, that is time he is not home providing guidance for his kids, fixing
the garbage disposal or making those corny but fun jokes the kids groan about
but love. Similarly, the friends and
working world of a caregiver are also asked to give up a little or a lot of the
mind, the emotions and the time of that caregiver so he or she can go and care
for that elderly parent and divert that energy and time in that direction.
For those of us who have a caregiver in our family or part
of our social or work circle, in addition to the sacrifices, you can become
concerned for your friend or loved one because of the demands of caring for a
senior citizen. It’s a job that is
taxing to even the strongest adult and one that take a lot out of your friend
or family member. Caregiver burn out is
a common syndrome and it doesn’t just affect the caregiver. If your parent, spouse, coworker or friend
undergoes a break down from the stress of caring for her mom or dad, that will
have an impact on everyone.
So there is a compelling need for all of us associated with
a caregiver to learn to care for that caregiver to help her and support her in
what she is doing. Some specific things you can do are…
them know you believe in what they are doing.
Caregivers often feel very alone and guilty that they are not attending
to family and other relationships. By
letting her know you are 100% behind what she is doing and that you are doing
fine, that guilt is removed which makes her know she can make it.
her know she is missed.
up the slack. Each evening if dad and
the kids can pick up the house, then mom can get some sleep and know that you
are taking care of business at home so she doesn’t have to worry about it.
mom sleep in. Maybe even bring her
breakfast in bed every so often.
in. Go over and help grandma out
yourself so it’s not all on mom.
unexpected surprise. Every so often do something to surprise and totally
delight mom and give her a fun break from her worries of care giving. A movie out or a limo ride around town can go
a long way for a weary caregiver.
If the spouse, the children and friends and associates of
the coworker can keep and eye on her to look out for those signs of burn out,
it may be our responsibility to jump in and give her some support before
everything falls apart. By caring for
the caregiver, she is better able to give attention to that senior citizen she
is caring for. So in a way we are all
becoming part of the effort to give the caregiver’s mom or dad the best care
possible. And that is what community is
More and more businesses are facing a challenge and some decisions to be made. As the baby boom generation moves into retirement years and becomes elderly, the workers that make your business function so efficiently are going to have the additional demands placed on them of becoming the primary caregiver for an aging parent.
It’s easy to just shrug at this need in your employee
population but just as the demands of parenting can have a huge impact on the
workplace, the personal needs of your employees to take care of their aging
parents will have an impact on the office and the productivity of your business.
Business can no longer be cavalier and declare, “Well they
can just quit and we can find new employees.”
The brutal truth is that skilled, trained and mature employees don’t, as
they day, grow on trees. With the work
force shrinking, it’s foolish to think that if you have a solid and hard working
employee who knows his job and does good work for your business, that employee
can’t just be replaced with a kid right out of school.
The cost to your business can be devastating if you have a
policy of running off good, hard working and smart employees because they are
becoming caregivers in their personal lives and replacing them with younger,
unskilled employees who are less informed about the ways of business. The costs of training and the learning curve
of the job alone will easily be more than any costs of accommodating existing
employees. Moreover, you cannot just replace
judgment, relationships, market savvy and wisdom which many of the employees in
the age bracket bring to your business.
So how do you accommodate the needs of this new group of
caregivers who are beginning to become a regular part of your workforce? The first step is to understand what they are
going through. These people are going to
take care of their loved ones whether you are aware of it or not. So if you can partner with them to make them successful
at home, they will work extra hard to make you successful in the marketplace.
Start with some seminars and brown bag lunches where people
can come and share the demands they are going through as caregivers for elderly
parents or loved ones. Invite everyone
to these lunches because there will be many in your business who know that is
coming up for them and want to learn all they can about what is ahead. By making an open discussion of elderly care
issues part of the discussion at work, you are communicating that you want to
help and not hinder what your employees are facing. And that will endear you to them and get you
the reputation of being one of those “good employers” in town.
Not all employees who are caregivers will need accommodation
all the time. If their parent’s needs are
not that demanding, it will be more of an emotional adjustment than a demand on
the schedule. But encourage each
employee who is entering into a time of being the primary caregiver for their
parent to communicate that to you both through meetings with the Human Resource
department and to their boss as well.
There is a practical side to getting inside of what is going
on with your employees. To your workers,
they see you as family and feel more bonded to the workplace because you are
concerned about their parents. But for
you, the business will know in detail what is going on with that situation so
you can anticipate if that worker will see sudden interruption come up at work
and adjust schedules accordingly.
Be sensitive and be communicative with your employees and
you can truly become their partner in dealing with this tough part of their
lives. And in doing so, they will feel
that you support them and their loyalty to the company will skyrocket. That loyalty will translate into better
productivity and longevity in your workforce.
That stability translates into a more efficient organization which is a
more profitable organization. So in the
long run, partnering with your caregivers in the workplace just makes good