By Roz Jones

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.