Keeping

[Guest guest]

Keeping

JENNIFER M. DOBBS , Our Town Editor

It was a promise that was easy to make. I felt it was a promise that was expected - one that I was obliged to offer. And it took no thought for me to utter those words of promise that have now ruled my life for five years. The promise was to take care of my mom, no matter what, for the rest of her life. It seemed easy at the time. She would move from her Long Beach condo to a mountain house near where we live. We would get to spend more time together, she would see her grandchildren more often, and my hubby would be around to help her with the kinds of things grandmas need and can't handle themselves. Of course, circumstances were different back then. She was in good shape. She had recovered miraculously from injuries sustained in a 1980 airplane accident. She knew she had hepatitis C, but it was under control. She was still driving and had committed to learning to drive mountain roads. It was a good plan, and all went well for about six months. It was such a good time for my family and my mom to be together, sealing our confidence in the decision. Her decline started out slowly, then started to go more quickly - an attack of arthritis in her previously fractured spine and legs, congestive heart failure, a virus attacking her lung so badly she lost two lobes. Then the kicker of them all, the disease known as MDS, myelodysplastic syndrome. Her body makes defective red blood cells that die almost immediately after formation.

We started a new schedule. Pain management, hematologists (doctors who specialize in blood disorders), cardiologists (doctors who specialize in the heart), biweekly checkups and more X-rays and other tests than I ever imagined possible. It got worse. Blood transfusions, midnight calls to 911 and warnings from doctors that she "might not make it through the night" became routine. And then a very difficult decision, made by my mother, to stop it all and begin the end of her life. When we entered into hospice care, my title changed from "devoted daughter" to "caregiver" in the blink of an eye. But I was OK with that. The doctor gave her six weeks to live. Of course, I thought, I am going to be the one who cares for her. It is six weeks of time, so stop everything and focus on this very important task. That was almost one year ago. In that time, she survived when no doctor said she would. She was able to take two trips to the beach which is her favorite place in the world. She was able to at least listen, via my cell phone, to her youngest grandchild graduate from high school. For my mom, known to most as "Granny," this borrowed time resulted in a good year for her. But frankly, for me, the caregiver, it was a year that kicked my butt. I had no life of my own. I had to stop working. There was no time for my husband, my kids, my laundry, my housework. My car was never clean. Luxuries like manicures and pedicures and coffee with friends were a thing of the past. My patience, understanding and kindness were on hiatus. I was on my last nerve. And I was one of the lucky ones. Each time I wanted to give up, my husband Glenn would remind me of my resolve that this job would not defeat me. He, or one of my kids, would give me a break. A sister from out of town would come for a weekend of respite. These days, I am back to work. I share my job of caregiver with some professionals who come into my mom's home, with my kids and with my husband. Mom is still hanging on, and so am I. But it still hurts, it is still frustrating and on some days, it can be emotionally devastating. Since I started in my position as Our Town editor and even before when I was freelance writing, I met or spoke with many folks who share with me the title of caregiver. Lowa , one of my friends with the Assistance League, has been caregiving for six years. She recently offered me some uplifting words, and I am telling you my story in that same spirit. November is National Family Caregivers Month. It is a month of appreciation for the more than 50 million people in the United States who act as caregivers in a year. National Family Caregivers Month is in place because the job takes its toll. Caregivers are much more likely to suffer from depression, anxiety or chronic illness caused by a suppressed immune system. Caregivers lose wages and benefits at work because of the time necessary for care in the home. Caregivers get exhausted, frustrated, anxious and sad. Caregivers need a break. This month recognizes that and encourages caregivers to take care of themselves and become aware of the resources available to them. A good place to start looking at that information is www.thefamilycaregiver.org . The National Family Caregiver Story Project, funded through a grant from the Reeve Paralysis Foundation, is collecting the stories of caregivers. Based on the belief that community leaders and others often don't understand the realities and needs that come with family caregiving, the project aims to collect as many stories as possible. And I can tell you from writing this column, writing out your thoughts and feelings can help you while attempting to help others by letting them know they aren't the only ones going through this very difficult experience. I have yet to find the magic that makes the job of caregiving easy. But I have found through my friends, the people I meet, and the smile that at times comes across my mom's face, the magic that makes the job bearable. You have heard my story. If you have one you would like to share with me, send me an e-mail at jdobbs@... .

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