“The neurologist solemnly announced his findings. You cannot control your tears as your husband is diagnosed with Parkinson’s. From that moment on your lives begin to change. New roles have been established. The patient’s needs may take priority; the caregiver’s role will be secondary.”

It is not easy to accept the diagnosis of a chronic illness that relentlessly progresses. Questions flood your mind. Do you die of Parkinson’s? (Thankfully, the answer is NO). What is the prognosis? How long can the patient continue to work? He has changed so much over the past year or two. What took us so long to recognize that something was wrong? Will changes in his demeanor continue to escalate? Crowding these questions are silent pleas for help. The spectre of what lies ahead is so frightening!

My first suggestion is to learn all you can about the illness. There are many good books written on the subject. Contact the Parkinson organizations for their free literature, and ask to be placed on their mailing list. Find a Caregiver Support Group in your area. You will meet other men and women who will understand your problems, will not be judgmental and will offer practical advice. The facilitator will often bring information about new medications and procedures. Best of all, you’ll realize that you are not alone.

In the beginning there will be little strain on the caregiver, but over time tensions build and worry and frustration are the well-spouse’s constant “companions”. Over 70% of caregivers suffer from stress and anxiety. Upper-most in the care-partner’s mind is, “what will happen if I become ill or incapacitated?”

There is always a strain from the couple’s mis-matched expectations. How much of the patient’s dependency is due to illness? How much is due to the couple’s different coping styles or personalities? Caregivers are always full of “what if worries.”

  • What if he/she falls? Will I be able to lift my mate?
  • Will I be capable of coping if he/she needs emergency care? (My husband taught me to think first – then panic later.)
  • Will I be capable of handling our complicated financial problems?
  • I am sometimes aware that he/she tries to be manipulative. He/she wants me available all of the time. Is he/she afraid to be alone?
  • What if his/her PD progresses rapidly? We both suffer – but is he/she aware of that?
  • Can I handle his/her personality changes? I know that I sometimes act like a shrew, and I hate it. How can I avoid this?

It’s normal for a caregiver to feel overwhelmed. You are dealing with guilt, dread, anger and sorrow. Tears come easily. Some caregivers feel a tightness in the jaw, some experience headaches or irritable bowel problems. I always felt as if I had a rope tied around my chest, exerting more and more pressure. Each person reacts to stress in a different way. Get professional help. Don’t delay! Caregiving is not easy. You cannot always be patient and even-tempered toward the one you love. There are bound to be times when you lose your cool and respond inappropriately. Words said in anger cannot be retrieved, but a sincere apology will help soothe ruffled feelings. Remember that you are “on call” 24 hours a day. Even nurses work a 7 or 8-hour shift, and then are able to relax. Nerves are on edge. Frustration is always present. No one is perfect: mistakes happen. Do the best you can and forget the guilt. Don’t allow guilt to add to your burden. (This advice is applicable to all caregiving situations.)

The key to successful coping is all in your attitude. Don’t borrow trouble by worrying about what could happen, when it will happen or if you will be up to the challenge. The scenarios you envision may seldom occur. Consider your own needs. Maintain your good physical and mental health so that you can better cope with your partner’s diminishing abilities. Ask yourself “If I fall apart, what will happen to both of us?” Keep a journal of contacts and telephone numbers. List agencies and individuals that can provide you with needed services. Don’t be a martyr and feel that you are the ONLY one who can help your loved one. Accept assistance from friends and family. Do not deprive them of the opportunity to feel needed and appreciated. It will be a loving gift for both of you.

Editor’s Note: This is an encore commentary. We first published Lucille’s article in 2001.

About the Author
Lucille is the widow of a Parkinsons patient – the late Dr. Robert Carlton. Together, they authored the book “Courage Behind the Mask: Coping with Parkinson’s Disease.” Lucille is also the author of the book, “In Sickness and in Health: Sex, Love and Chronic Illness,” published by Delacorte Publishing, New York. She also wrote an advice column for the NPF Parkinson Report entitled “Straight From The Heart,” a quarterly publication and authored the brochure, Practical Pointers for Parkinsonians, provides valuable daily living guidance for Parkinsonians and their families.
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