For The Caregiver: Body, Mind and Spirit
Joan Evans, L.C.S.W.
This article is re-printed from the APDA's booklet, Educational Supplement No.4
Caregiving is satisfying work, says the healthcare literature, especially because caregiving is an expression of love for someone who is important to you. This idea may be true, but it is not what comes to my mind when I think of caregiving, the actual work of caring for someone on a full-time basis.
Caregiving, for me, means feeling tied down, isolated, lonely, frustrated, sad and being pushed beyond physical endurance. It means coping with feelings of guilt for sometimes acting in a resentful, angry way. I feel sorry for myself about being robbed of my life, questioning what I have done to deserve such misery, and then feeling guilty, knowing that after all I'm not the one who has this disease.
Maggie Strong (1) describes the situation well in her book Mainstay:
"He or she grows weaker, you take over, nobody sees. Whatever he can no longer do, you do. At first you were horrified together, now you move apart. He loses control over his body. This scares you and you begin to watch very closely. The loss of control over his body frustrates him and he tries to exert control over yours. His wish is your command. That was great when you were scared that he would die and you were saving a life. It pales. Most everybody identifies with him. 'How is he doing?' At first, that's all you cared about, too. Now you sometimes wonder why no one asks about you. You feel like the agent of another person. You start to feel that you don't exist."
Caregiving is difficult work indeed. It involves not only the task of doing, which is difficult enough. It also involves the task of coping, of figuring out creative solutions and working at how to keep your head above water. It requires a commitment to caring for yourself spiritually, physically, and mentally not only to enable you to continue to provide care but, just as importantly, to provide quality to your own existence, so you can experience joy as well as sadness, love as well as hurt, and faith as well as despair.
When a significant person in your life has Parkinson's, he or she is not the only one affected by this disease, not the only one who has lost the lifestyle you formerly shared, not the only one who has been dealt a devastating blow.
In my own counseling practice, people often say to me that others are "worse off' than they are. They feel that they should not be overcome by their own personal worries or tasks, especially in comparison to the difficulties faced by others. Please know that another's tragedy does not diminish your own. You didn't choose to have Parkinson's in your life, but it is there, and you must find a way to keep your head above water in your new role as a caregiver.
Caregiving challenges you physically, mentally and spiritually. Your task is to figure out how to meet that triple challenge while at the same time acknowledging that at times you will feel defeated.
The spiritual challenge is to believe that someone/something greater than ourselves is there to call upon and depend on for wisdom, love and comfort. Caregiving may expand or even challenge your belief system. If you've believed that everything happens for a reason or that people get what they deserve, you will probably find yourself at odds or let down by your belief system at this time. You may ask yourself "Why has this happened to me?" Feelings of victimization may challenge your faith.
If you find at the core of your being that your own spirituality is not supporting you, do find someone to help you. Expand your belief system and allow it to serve you. As Harold Kushner (2) says in his book, Why Do Bad Things Happen to Good People?
"Is there an answer to the questions of why bad things happen to good people? That depends on what we mean by 'answer'. If we mean, is there an explanation which will make sense of it all?-Why is there cancer in the world? Why did my father get cancer? Why did the plane crash? Why did my child die?-then there is probably no satisfying answer. We can offer learned explanations, but in the end, when we have covered all the squares on the game board and are feeling very proud of our cleverness, the pain and the anguish and the sense of unfairness will still be there.
But the word 'answer' can mean 'response' as well as 'explanation,' and in that sense, there may well be a satisfying answer to the tragedies in our lives. The response would be Job's response in MacLeish's version of the biblical story-to forgive the world for not being perfect, to forgive God for not making a better world, to reach out to the people around us, and to go on living despite it all.
In the final analysis, the question of why bad things happen to good people translates itself into some very different questions, no longer asking why something happened, but asking how we will respond, what we intend to do now that it has happened."
Your belief system needs to give you comfort and support, not feelings of abandonment.
Nancy Mace and Peter Rabins, (3), also speak bout this struggle in The 36-Hour Day:
"Often the person who has most of the responsibility for the care of a sick person feels that other members of the family don't help out enough, are critical, or don't come to visit. A lot of anger can build up around these feelings.
You may be irritated with doctors and other professionals at times. Sometimes your anger toward them is legitimate; at other times you may know that they are doing the best they can, yet you are still angry with them.
People with a religious faith may question how God could allow this to happen to them. They may feel that it is a terrible sin to be angry with God or they may fear that they have lost their faith. Such feelings may deprive them of the strength and reassurance faith offers at just the time when they need it most. To struggle with such questions is part of the experience of faith."
Parkinson's disease creates many losses, some more obvious and some more subtle. Perhaps the greatest is the loss of the fantasy of control. We all want to be in control of our lives, and this situation smacks us right in the face with the reality that we have little control. You need to search your life for areas where you can feel in control, where things can be organized and predictable. You also need to try to let go in the areas where this fantasy of control is no longer possible to maintain. Hand it over to a source of power that is greater than yourself and be relieved of part of this burden.
Caregiving is also a physical challenge. During this time of caregiving you are being pushed, often beyond your endurance. You may not be eating properly. Your sleep may often be interrupted. You need to take care of yourself as well as the person for whom you are caring.
You are aware of your body's needs, particularly food, sleep, and exercise. All three are very important: (1) Food, because your body needs fuel in order to perform. (2) Sleep, because lack of rest is a major contributor to depression and exhaustion. (3) Exercise, because it is a guaranteed stress reducer. All three are needed to maintain your physical health. This is not a choice. It is not an option. It must happen! Your challenge is to make sure it happens because no one else is going to make it happen but you.
Finally, caregiving is a mental challenge. Mentally, you must cope with so many different feelings and thoughts that you probably feel overwhelmed. You may find it most difficult to cope with feelings that you think of as negative, feelings you have labeled unacceptable, like anger and resentment at your partner for being sick, jealousy at always being second and feeling deprived of pleasure by needing to do too much work.
It is important to remember that feelings are neutral-neither good nor bad. Only behavior may be judged. For example, your feeling of anger may prompt you to call the doctor and then rant, rave, and hang up on him. The feelings are not the problem, but your particular way of acting out those feelings can be. Your anger can actually be energizing, empowering you to make a phone call requesting the services, support or information you need. Feelings are discussed very clearly by Mace and Rabins (3) in The 36 Hour Day:
"We do not believe there is a 'right' way to handle emotions. We think that recognizing how you feel and having some understanding of why you feel the way you do are important, because your feelings affect your judgment. Unrecognized or unacknowledged feelings can influence the decisions a person makes in ways that he does not understand or recognize. You can acknowledge and recognize your feelings-to yourself and to others- but you have a choice of when, where, and whether to express your feelings or to act on them."
Remember to blame Parkinson's disease for the trouble that has befallen you. Be as angry, resentful, and blaming as you want to be- at the illness! Give yourself lots of permission to blame the illness for the difficulties that you and the person you are caring for are facing, because putting blame in the appropriate place frees you from blaming yourself or your partner for events out of your control.
During this time of caregiving, you may want to sort out your feelings with a friend. The authors (4) of How to Survive the Loss of a Love talk about "seeking the support of others" and suggest that it is both human and courageous to do so. They also urge caregivers to mobilize friends and family into a support system with the confidence that once they know that they are needed, they will help.
A poem they wrote expresses these sentiments:
help me up
dust me off.
feed me warmth.
you are comfort.
let me lean on you until I can stand alone.
I will then stand a little taller.
and you will be proud to have a friend
such as I.
Do know, however, that when you talk with your friends or family, you may not get exactly what you need. This disease scares them too. It invades their security, so they may give you unrequested advise and tell you to "buck up." "Buck up" may not be the words, but you will know the message when your hear it. It could, for example, be something like: "Oh Sue, don't worry so. Everything will be okay. Just get a good night's sleep, and you'll feel lots better tomorrow." It is not necessary to "buck up." It is only necessary to cope and to get through this time the best you can. You have every right to feel any feeling you are experiencing. When you talk, you need to be validated. You need acknowledgment that your life is now difficult, frustrating, demanding, and that it is okay for you to feel discouraged, sad, abandoned, or any other emotion.
So. my message is "take care of yourself". Nourish your being. This is not something someone else will do for you. Doing this for yourself is not being selfish or uncaring. It is surviving.
You deserve to do more than just exist. You deserve to have joy and pleasure in your life. So nourish yourself, take time for yourself, and care for yourself. Plan into each day a time and space for self-nourishing activities so that you will have an existence outside of this disease.
Self-nourishing is not being selfish. It is being caring and loving to a very important person- YOU! Read a book, make your favorite cookies, take a bubble bath. You don't have to leave the house to do something for yourself. If friends or family call saying, "Let me know if there is anything I can do, let them know that there is something. Ask for the help you need. Let someone come to your house so that you can get out for awhile-not just to run errands, but to do something just for you. See a movie, visit a friend. Let someone else take on some of the responsibilities.
Bring in some paid help if you can. You know the money you've been saving for an emergency? Well, this is an emergency. Spend in a wise way. Be creative. Be a problem-solver. Use your resources to make sure you have time out to replenish and nourish yourself.
Ask yourself today what you need to do in order to take care of yourself. Do you need a support group? A spiritual mentor? In-home help? Respite care? A counselor to help you sort out and understand your situation? Do you need to learn how to ask for help? Do you need to learn how to accept help?
Be a really good self-care giver. You already do a good job caring for the Parkinson's partner in your life. Now, give yourself some good care-spiritually, physically, and mentally.
(1) Strong, M. (1989). Mainstay, Penguin Group: New York
(2) Kushner, H.S. (1981). When Bad Things Happen to Good People, Schocken Books: New York.
(3) Mace, N.L. & Rabins, P.V., (1984). The 36-Hour Day, Warner Books: New York.
(4) Colgrove, M., Bloomfield, H.H., McWilliams, P.V., (1976). How to Survive the Loss of a Love, Prelude Press: Los Angeles.
Joan Evans is a Licensed Clinical Social Worker who practices and lectures in the San Francisco Bay area and is Supervisor of Social Services at Seton Medical Center, 1900 Sullivan Avenue, Daly City, CA 94015
Back to Parkinson's Directory