World Alzheimer's Day falls on September 21st, 2008. The theme for this year 'No Time to Lose' recognizes the role of caregivers as the backbone of care, support and management of Alzheimer's disease.
For all those 25 million sufferers of Alzheimer's disease in the world, there are as many caregivers whose contribution is indispensable in the management of the disease. It is about time to realize that caregivers also need care and support to carry out one of the most difficult tasks of supporting loved ones in the throes of this debilitating mental condition.
It is worth pondering about how caregivers can expect to mete out care for victims, if they do not take good care of themselves!
Alzheimer's disease is a devastating disease of the nervous system that leads to progressive degeneration of brain cells. What may begin as seemingly innocuous lapses of memory, progresses gradually into stark decline of mental abilities.
Victims show marked changes in behavior, mood, thinking and intellectual tasks. Memory, judgment and systematic thought processing takes a beating and normal life is badly affected. The progression of the disease differs with patients, though detecting the disease early can be crucial to effective management of the condition.
As the disease takes a toll on the mental abilities of the patients, they are completely dependent on their care givers to carry out daily tasks. The onus on caregivers is huge who need abundant physical and emotional energy to face the challenges ahead.
At the end of the day, caregivers are human. While the disease plays havoc with its victims, it can also completely upset the life of caregivers.
Most of the caregivers who are closely related to victims lose their zest for life, seeing their loved ones 'lose' themselves to the disease. Helplessness and hopelessness coupled by ceaseless tasks of managing victims, drains them out physically and emotionally.
Caregiver stress is an accepted fallout of extending long term care for those afflicted by Alzheimer's. Most of them get home bound and tied down, it's a long haul without a break in sight. Depression, anxiety, anger, irritability, denial, social withdrawal, sleeplessness, inability to concentrate, are some of the signs of caregiver stress.
Care for the Caregivers
There are innumerable support groups and organizations equipped to ease the struggle for caregivers.
When caregivers accept help, they have that much more time and energy to spend with their loved ones. The benefits of seeking help from agencies which offer personal care services (help with bathing, dressing, feeding and routine chores of the patient), home care services (help with household chores) are manifold. Respite care services are also available giving caregivers an opportunity to take a break with short-term assistance while they are away.
Further, availing the help of support groups, approaching counselors and reaching out to other caregivers to share experiences helps them recharge and approach disease management in a more positive manner.
The emotional doldrums that many caregivers find them in was best elaborated by Dr. Dan Gottlieb, a psychotherapist, when he addressed the dementia caregiver conference way back in 2005.
He said to the caregivers, "You do not suffer because of them (person with a dementia). They have a disease, a neurological illness, that's a fact. But that's not why you suffer. You suffer because you love. If you did not love, you would not suffer. Love is learning to live with your helplessness in the face of your loved one's suffering."
Care giving for Alzheimer's victims is a labor of love. Let's make the journey for caregivers easier, by recognizing their undying effort and offering our love, support and concern in abundance.