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Spring 2000 Volume 3, Issue 8:
The Caretaker's Journey
By Carolyn E. Kemp
Being a Caretaker is the ultimate gift of yourself to someone you love. It will demand all of you; it will return much to you. It can bring frustration, learning, heartbreak, joy, fatigue, satisfaction, hope, despair, and faith. Your special person may be a mate, a parent, a sibling, or a dear friend.

My journey as a caretaker began with the simple word, "Cancer." When I first heard it, I went numb. My husband Bernie was diagnosed with prostate cancer only a year after we retired to a lovely home in Arizona. Thoughts of the end of this idyllic existence washed over me. For a moment, I thought only of my own loss.

My husband had a more positive attitude and, for a time, I turned to him for comfort.

We sought out the opinion of a trusted oncologist with whom I had worked as a nurse. As an oncology nurse, I had held patients in the night, but suddenly the patient was my loved one. We discussed all aspects of Bernie's diagnosis and came to realize that although the future would be changed, there would be a future!

I had heard about a book by Bernie Siegel, "Love, Medicine and Miracles," which I tracked down at the book store. In it, we found hope and a way to mental peace. One of the author's recommendations we've used repeatedly is to seek out alternative techniques without foregoing traditional treatment. And, as the caretaker, I've had to become the rudder to keep my husband pointed at the goal.

Then, four years later, I had a breast biopsy that was expected to be negative. As Bernie and I waited in the exam room, my surgeon walked in and said, "I didn't expect this, but its cancer." That word again. My husband folded me in his arms as I cried. Our roles reversed and Bernie became my caregiver.

But suddenly Bernie seemed to be too tired for too long. Another call to doctor. Another blood test. A casual note in the mail to call the doctor's office to schedule more tests because Bernie was anemic and his blood protein was high. I quickly thumbed through my medical books and saw the words: multiple myeloma. I don't know who was taking care of whom just then.

Because I have been privileged to be a caretaker and to have a caretaker, I feel for those on both sides. And I would like to share with you some practical aspects of being a caretaker.

Be an active participant: Learn all you can about the disease and treatments – you can never know too much. Accompany your loved one to the doctor – two sets of ears hear more. Tape the consultations if you need to verify information when you get home. Be the patient's advocate in the doctor's office, the treatment room and in the hospital. Note subtle changes that the doctor might miss. Fight for the best opinions, the best tests and the best treatments. Help educate others.

Resist the "poor me" attitude: During your loved one's illness you will be walking a tightrope. Continue some of your regular activities. Don't get jealous of his time away form you.

Find support to help you through difficult times: Ask for God's help. Locate prayer chains and put your loved one on their list for active prayer. This brings hope and healing in difficult times.

Never lose hope: There'll be nights when you cry – that's OK – but pull yourself out of any despondency. Touch your loved one and say, "Thank you, God, for this moment." Treasure your special moments together. Actively tuck little memories away. Remembering these moments later, comfort will flow over you.

Learn some of the responsibilities you have not handled: This will spare him the frustration of seeing you struggle if he is no longer able to do these things. Do this gradually, so he will not think you are taking away his "jobs." It’s OK to depend on each other.

Several years have passed since my husband was diagnosed with myeloma. There are times we both forget he is still fighting the cancer beast within him. Then a sudden pain jolts us back to concern. These are the times I find myself asking, "What will I do without him? How will I survive?" We talk about this and remind each other that no-one knows from day to day what will happen.

Finally, for the caretaker, no advice can be more direct than the serenity prayer:

God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

I wish peace, love, serenity and healing to you all.

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