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Depth of the ocean water

Posted: May 30, 2012 3:42 p.m.
Updated: June 1, 2012 5:00 a.m.

I believe it to be a true assumption that the role-reversal between parent and child appears suddenly and is generally preceded by few warning signs. Described as an extremely challenging family dynamic, the exchange of roles often comes in the form of a caregiver. Many of us are likely care for a parent or other significant person at some point in our lives. More than 65 million people, about 30 percent of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week giving this care to a loved one. It’s a husband who suffered a stroke; a wife with Parkinson’s; a father-in-law with cancer; a cousin with ALS; a friend with AIDS; a grandmother with dementia. The scenarios are endless. There are no limits to illness. No two accounts are the same. For my family’s, it’s the chapter that tells the story of a disease affecting an estimated 5.4 million Americans. Alzheimer’s disease is the sixth-leading cause of death in the United States.

It is a terrible illness that ravages the once bright and vibrant minds of individuals. Researchers admit the number of victims could double within 30 years. An ambitious national plan to fight this horrific disease was set in motion in 2011 with the National Alzheimer’s Project Act. This is a flickering light for patients and their caregivers in every hard journey through the shadow lands of Alzheimer’s. Last year, over 15 million Americans provided unpaid care for a person with Alzheimer’s or other dementias. These caregivers are family members, relatives and friends, and in 2011 provided an estimated 17.4 billion hours of care representing a value of $210 billion.

Alzheimer’s is a disease full of losses. As every year progresses, I watch my mother lose more and more memory. Her short-term memory is no longer in existence. Some days, it’s like seeing her in quicksand but we can’t reach her. For every family touched by this illness, no value can be placed on time. Every day is a treasure. It’s as if she is being asked to count backwards, and she knows she is getting closer to zero. I watch my mother hold on to notes she’s written; the ones with dates of family members’ birthdays she so wants to remember. Or the notes she leaves asking that we do not leave because she is still here. These are the tough moments, and at times, I feel selfish for thinking it has anything to do with me. But it does. This disease carries frustrating and pain-staking instants both for the patient and the family members. The worst pill to swallow is that it doesn’t go away. Though, there are some things even the shadows can’t darken. People with Alzheimer’s usually forget unpleasant events quickly; they often adapt to change faster that their caregivers do; and they rarely worry about the future. As families struggle with this disease, we must look beyond the shadows.

As caregivers, my family is lucky to have support on a daily basis. As I’ve met others acting as the same to a family member or friend, I’ve seen a common bond -- the need to share and recharge. To be a caregiver to someone we love with memory loss, or other illness, is not something we choose. We are there out of love and respect and must keep moving forward. It’s the wife who is up at 2 a.m. again because her husband is wandering and she’s worried and exhausted; it’s the daughter who spends every break at work to research answers, to find hope; or the ones that move back home to help their parent die. The ones that look in the mirror and wonder where they will get the energy, the patience, the perseverance to keep going. And they do. A caregiver’s job forces us to dig deeper that we thought we ever could. It’s not always pretty and we will fall and make mistakes. But we get up. We have to. I believe if any of us had to choose the more difficult trail -- the loss of all our cherished memories or the selfless unbreakable work of a caregiver -- it would be the journey of our loved one every time.

A friend described his father-in-law’s aging and failing health in how it could be measured by the depth of the ocean. Every trip to the beach, his father-in-law’s resilience could be compared to how deep he would walk out in to the ocean water, and with every visit, his ability to go deeper slowly vanished. But my friend was there to lend his arm, his hand, his heart. To all caregivers, if the water is too shallow to feel relief, there’s always the solid ground of the shore.

(Paula Joseph is a contributing columnist to the Chronicle-Independent, Camden, S.C.)

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