Caring for the Caregiver

Caring for the Caregiver Part I of a Never-Ending Series I hadn't planned on taking a hiatus from writing my baby boomers/seniors column, which I love to create. Then again, I also hadn't anticipated that ...

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Caring for the Caregiver

Part I of a Never-Ending Series

I hadn't planned on taking a hiatus from writing my baby boomers/seniors column, which I love to create. Then again, I also hadn't anticipated that my husband would be diagnosed (quite by chance) with cancer.

Many parts of our lives and our roles began to change some seven or so months ago, when one doctor after another ordered blood tests, scans, MRI's, and biopsies to determine if Steve had prostate cancer. The last scan showed enlarged abdominal lymph nodes, and the biopsy from his neck a few weeks later determined it was non-Hodgkin's mantle cell lymphoma.

Steve had a serious disease that even the surgeon had never heard about. It affects 7% to 10% of all non-Hodgkin's lymphomas; is extremely aggressive; and is medically treated in clinical trials, protocols and with various combinations of heavy dose chemo drugs.1/2

Both of us were initially afraid to investigate this cancer on the internet, so I knew that my first new roles would become researcher, appointment-maker, medical liaison, and comfort keeper. The disease was his - but we both shared the psychological pain of discovering that Steve's cancer was currently incurable but treatable if we could find the right medicine man (or woman) to join our team.

In a reversal of roles, the man who loved and cared for me during my own personal battles would now receive my caregiving support. Yes, I was now joining an estimated 50 million Americans who are unpaid, full- or part-time caregivers of loved family members or friends.

No person is prepared for the intense and mixed emotions that a caregiver role thrusts on her or him. That includes expert on local and long-distance caregiving resources for over 20 years in various eldercare professions. I thought I knew it all, but I discovered personal experiences change everything emotionally, physically and financially for the patient, the caregiver(s), family members and friends.

It is almost like on-the-job training without a boss or supervision.

Estimates from various studies indicate that 59 % to 75% of caregivers are female, with male caregivers increasing by 50% according to one report mentioned in the

website. No matter who the caregiver is, the side effects of caregiving usually include:
1/2 Stress
1/2 Frustration (toward the patient, family members, doctors, and personally)
1/2 Exhaustion 1/2 physically and emotionally
1/2 Multi-Tasking Fiascos 1/2 balancing/combining family time, free time, work, etc.
1/2 Financial strains
1/2 Confusion 1/2 caregivers need coordinated resources, assistance, products and services.
1/2 Grief 1/2 whether a loved one is terminally or chronically ill, grief and sadness may pervade the caregiving/care receiving relationship.

I have barely touched upon the many issues of caregiving and caregiver support.
Those of us who experience this "new normal" way of life realize that becoming a caregiver changes the ways we view our life, live our lives, and see our futures.

In future caregiving essays, I hope to offer support, advice and encouragement to caregivers everywhere. Here are some online resources which may prove useful:

Fast-forward to early November, 2006: Steve is home from his 4-month chemotherapy protocol at Jackson Memorial Hospital (part of University of Miami). We were extremely fortunate to find an amazing oncologist-hematologist, Dr. Izidore Lossos, who has been conducting a 21 - patient Mantle Cell Lymphoma Protocol. Steve is his 12th patient.

My husband is now in complete remission, totally cancer-free. Steve will go into Sylvester Comprehensive Cancer Center for periodic body scans and MRI's. Although he was in Stage 4 of Mantle Cell Lymphoma, with no obvious clues he had anything physically wrong; he is joining a group of 1/2Survivors1/2 who hopefully will continue to grow as we get closer to cures for all the cancers in the world.

In the next part of my ongoing series on Caregiving and Caregivers, I will explore my own emotional reactions to Steve's disease and treatment, as well as the changes it is continuing to bring into our own lives.

And, if any of you wish to share your caregiving experiences with our website readers at , please send them to