Preparing for the caregiving role
January 21, 2010 1 Comment
I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.
The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.
Heck, I thought, caregiving has become my profession! This is how the Bedouin must have felt when the camel took over the tent 🙂
The next step was obvious. If caregiving is large enough to be like an alternate career, I need to train for it.
So I got myself a bunch of books and tapes, surfed online groups, started checking out for volunteers in this area in my city. I read, mulled, read. I discussed.
And I realized that all I had read and understood would make my life simpler – I should have done it earlier and saved myself a lot of time and energy wasted in getting frustrated or desolate.
My stress dropped dramatically as I started appreciating reality and tuned my mindset to it. I no longer felt out of control, and caregiving seemed doable without burnout. It was a massive relief to know I could do what was needed…
Many caregiving families do not understand that dementia-type problems are manifestations of a disease. Doctors do not advise them enough, and these families struggle to make the patient “behave properly” or to adjust around the “stubborn, unreasonable” person. The inevitable burnout happens, and they dispatch the person to the other siblings, and when they run out of siblings, to an old-age home. The memory of this inability to look after a loved one is usually bitter with resentment and guilt.
Awareness of dementia is specially low in India where it gets muddled up with general old age, and where caregiving is not seen as a role at all, nothing more than normal home-making and respect for elders.
While many sing praises of the benefits of such a culture and a family support system, what this environment misses out is the fact that caregivers need a special set of concepts and tools to handle the special challenges posed by dementia patients. By lumping it under duty, love, and normal family life, we deprive the caregiver of knowledge that will help him/ her perform the role effectively. Equally tragic, we end up depriving the patients of a secure and supportive environment where they can continue to be as active as their condition allows them to be.
I wish doctors, when they diagnose dementia, would also warn caregivers of what lies ahead, and point them to resources so that they can equip themselves for the years to come. I hope some day this will become part of a standard checklist that goes along with revealing the diagnosis.
Resource page to understand and prepare for the caregiver role is available here: Understand the caregiver’s role
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