When someone is thrust into a caregiving role, the newbie caregiver sometimes has no idea what to expect, and how to plan and adjust to this role. This detailed note is intended for someone new to caregiving. The tips shared here are useful for all long-duration caregiving situations, and not just for dementia caregiving.
Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/ skills/ good luck) as persons who may need to provide such care.
The patient may be a loved one, or an acquaintance, or someone we have to care for because there is no one else to do so. The illness may be curable or one with a low chance of recovery, the duration may be a few months or may stretch across years. Whatever the case, this new responsibility may leave us feeling strange–uncertain, nervous, helpless, exhausted, sad, angry. And often, alone. In this note, I am sharing things I wish I had known when I had just assumed the caregiving responsibility.
But before going any further, one important point: we have to understand that caregiving is a role. Caregiving will affect us in multiple ways. We need to understand what it involves and plan for it rather than assume and hope things will sort of fit in with what we are currently doing. Like many other roles we balance–as a professional, spouse, parent, child–the caregiving role has to be integrated into our life. In order to be effective caregivers, we must have a realistic idea of the time, energy and money this role involves, and balance it with our jobs and family, our hobbies, socializing, and sleep.