Caregiving: I Am My Brother’s Keeper
- Patricia A. Parham, Ph.D. Contributing Writer
- 2012 12 Jul
In the world of caregiving, you may be your brother’s keeper, or your mother’s keeper or your father’s or your sister’s. This is not an assignment that you requested.
You may resist, “There is no Florence Nightingale in here!” Nursing is not in the skill set, nor does the thought of feeding, changing diapers, or washing anyone over the age of two appeal. Somehow those preferences become irrelevant when someone you love needs you.
This is an opportunity, reframing what was formerly thought of as an unexpected burden, thrust upon you when a loved one can no longer fend for him or her self. When they need washing, you wash. When they need food, you cook. When they need to go somewhere, you drive. Heaven forbid that this occurs with both of your parents or any other couple, twins, siblings, friends or relatives, compounding the issue. For the sake of simplicity, let us think in terms of one parent needing care. However, it could be any one person whose needs you choose to put above your own. Always remember that this is a choice—your choice.
“Thou shalt love the Lord thy God with all thy heart and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbor as thyself” (Matthew 22:37-39).
Nothing else in your life has changed. You still go to work and/or school, take care of others, clean house, work in the yard, attend church, volunteer for your favorite organization, play cards or tennis or basketball or your favorite game. There are still 24 hours in a day and you must pay bills, exercise, take out the garbage and wash the car. You still want to ride a bike through the arboretum on a nice spring day, read a book on the patio, go to a movie, or play video games until bedtime. Your life is full and you are reasonably happy with the world you have created for yourself.
Whether the need for caretaking creeps up on you with small tasks that begin to accumulate, like stopping by to take Mom to the grocery store every week, then helping pay bills and balance the checkbook while you’re there, or a catastrophic illness renders your father unable to take care of himself for the next three-to-six months and he needs food three times a day and bathing or changing bandages, it is a shock—
Shock that these previously independent people are fallible, hurting and needing your care.
Shock that paying for routine services is cost prohibitive, unless you, or they, are independently wealthy.
Shock at how much time it takes to visit, provide a service and return to your life.
Shock at how often the service is needed and that the list of needs is growing exponentially!
Shock that no one else will take on this responsibility.
- Shock that life as you knew it is no more!
By the time you reach shock, you have moved beyond denial and figured out that there is no easy or quick fix. If you are fortunate, there is a light at the end of the tunnel, at which time independence will be restored. Unfortunately, this is rarely the case. Oftentimes, when rehabilitation or long-term care is involved, regardless of the age of the person, full recovery eludes them. Parents who deteriorate physically or mentally never return to “normal.” You study to quickly become an expert on senior services, rehabilitation services, in-home care services, assisted living services, or long-term care services. None provides exactly what you want at a price you are willing to pay! How do you cope with the less than optimal options and answers that you discover?
First, recognize that there is no perfect solution.
Your loved one’s health, as well as freedom, are at stake here. Finding the balance between required care—whether it is desired or not—and independence is tough! No one wants to be dependent. No one wants to lose their independence, whether it be making decisions about money or driving a car. No parent wants a child taking care of them and telling them what they can or cannot do. While the need for this role reversal may be apparent to you, it is not the right answer for them. Even if it is logical, it is not acceptable! Whatever choices are made, provide care in the way that maintains the dignity of your parent. Cherish her through this process.
Honor thy Father and thy Mother that thy days may be long upon the land which the Lord thy God giveth thee (Exodus 20:12).
Second, you are emotionally involved.
Logical and rational decision making suffers as the desire for your loved one to get better and be better than they are can blind you to reality. You know his likes and dislikes and want to “fix” whatever the problem is, make excuses for it, or ignore it as long as you can. This may not be best for him or for you. Some problems intensify and get worse the longer they are not addressed. Do a reality check! Is this something that will go away? Can you wait to address it without causing or allowing further harm? When a physical ailment intrudes, it is agreed that it is best to treat it right away. Yet, we rationalize and pretend that loss of memory, forgetting things, and confusion are simply signs of old age. They may be, but this is no time for denial. The harsh truth is that if Alzheimer’s is involved, it is not curable or reversible. The sooner it is caught, the better since medications exist that slow down the progression of the disease. Every option has pros and cons—weighing them will be difficult. Still, act quickly and prudently!
Third, stay one step ahead of the disease.
Project and be familiar with the next probable complication. The medical establishment knows what will happen with adult onset diabetes, for example. Treated with prescription medications, diet and exercise, it can sometimes be reversed. If your loved one won’t take their medication, exercise or eat right—or sometimes even if they do, there are signs of deterioration and acceleration of the disease that indicate the need to change the treatment. Know the signs and be vigilant. If the problem is one of dementia, know the next steps for care and investigate them before they are needed. There is seldom the luxury of getting the power of attorney or guardianship when a parent has lost touch with reality. What could have been a simple and straightforward process may become quite complex involving the courts and bureaucracy and others who do not know you, your loved one, or the situation. Plan for the next step. Sometimes preparedness is all that is required to prevent the unthinkable from happening.
Fourth, make the best decisions that you can and let them be.
Do not second guess yourself or look back and ask, “what if?” Trust yourself to do the right thing with the information that you have. You will never be able to un-do what has been done. If you make a mistake, forgive yourself, ask her forgiveness and God’s, make amends, and move on. Of course, God forgives before you ask. Your loved one, if lucid, is likely to quickly forgive. It is you who needs to recognize and accept your own limitations and to know, in your heart, that with what you had to work with, you did the best that you could do. Life is not perfect and neither will the solutions be. Whether or not you receive compassion and forgiveness from others, forgive yourself.
Fifth, and finally, take care of yourself.
You may have to give up something in your life to do this; make sure it is not that which nourishes you the most. Share the burden. You are not alone and do not have to do this alone. Friends and family have faced these challenges, too. Talk to them. Ask for and accept help. Schedule time to relax and unwind and to pamper yourself. You cannot take good care of anyone else if you are sick, depressed, or distracted. Do not develop negative habits to cope, like smoking more, drinking, or taking pills to sleep or stay wake. Let these be signals that the priorities in your life must shift for a while. Don’t ask “why me?” You probably won’t like the answer and feeling sorry for yourself never helps. If you do anyway, schedule a short “pity party,” wallow in it, and let it go. When you get to the end of your rope—and you will—ask, “What would Jesus do?” Then, do that! Your loved one needs you positive, harmonious, and full of hope.
You embarked on this journey willingly and determined to give compassionate care. This may be the time to re-pay your parents for all the wonderful things that they have done for you. It may be a growth spurt opportunity when you provide care for one who was mean and evil toward you. Just remember that service rendered with a stingy heart diminishes you and the service. If you decide to provide care, do it with love.
Caregiving requires far too much of you to have regrets. This is a chance to grow in love and loving kindness, a journey that nourishes your heart and your soul. God bless you!