Sunday, January 6, 2013

Caring for our parents

With the aging population and kids living overseas there is a huge need in India, as elsewhere, for home care ranging from help with everyday chores to advanced life care for patients who are palliative.  This trip has been all about confronting that need head on.  Care is not cheap and is not systematic.  You have to cobble together a host of services and then hope and pray that people are honest and do not abuse or neglect the persons in their care.  Since these  caregivers are not licensed there is nothing but their own individual moral code to hold them accountable.

When I landed here one of my close relatives had just come home from yet another trip to the hospital for near chronic kidney failure.  The hospital visit burnt a huge hole in the family's pocket and did not make him any better, the treatment having been sub par.  We decided to manage him at home with medication, not realizing what we would need to do to ensure he could be managed there without incident.  Two days later a crisis set the wheels in motion for palliative care at home.  He had trouble breathing and being all alone at home put out SOS calls to everyone he knew, since there is no access here to a centralized ambulance services or paramedics.  With us having to arrange the transportation to get him to the hospital we did not arrive till half an hour later!  Fortuitously, it was a false alarm.  We replaced his inhaler and averted the trip to the hospital.  However it gave us the impetus to work towards a home care solution.  This involved engaging one of few palliative care doctors in the City, who makes house calls and allowing him to define the regimen for care at home.  The oxygen machine rental,  purchase of a nebuliser and training for the 24/7 patient attender, who was immediately hired, followed.  The attender has been trained to administer medicines and food in a timely fashion, ensure the patient is well oxygenated and his input and output of fluids are monitored.  Such an advanced life care solution for management of a chronic condition, where the patient's comfort is given paramount importance, comes at a hefty price tag that most can ill afford, if they live and work here in India.  Also the solution is far from perfect.  Today when I made a surprise visit, I found the attender had gone out, leaving the front door open and the patient was in his bed breathing rapidly, having taken off his oxygen mask.   We can never be guaranteed the patient's cooperation or predict how the disease will progress as a consequence, and so cannot prepare for all eventualities.  In many ways it is a waiting game and a tough one at that given we have taken all control over care.  In a hospital setting the responsibility is not ours and so we have an entity to turn to or blame.

Just as difficult, is caring for aging parents who have no major health problems but have mobility issues.  Getting any task done in India, even groceries, is no mean task.  Now with gas rations and purchase of water, the necessaries of life are not guaranteed and require considerable effort to ensure supply at all times.  Also use of all electrical devices has to be worked around the state's power outage schedules.  Seniors are definitely kept mentally agile as a result.  Now a solution to this is full-time help.  The right kind of help has to be provided board and lodging which would add to the householder's workload.  If help is brought in to cook and perform chores around the house then additional help is needed for outside chores.  But get this - seniors, especially women, are extremely reluctant to relinquish control over their kitchens if they have been cooking all their lives.  My mother insists additional help would be a burden and she does not see why things should change.  All in all a huge learning for me and an insight into my own old age and what i should be preparing for.  Here's hoping when the 60s babies become seniors there will be infrastructure in place.  However, let's all stay healthy and ward off dependence for as long as we can.  In addition, let us prepare for all associated expenses when we do become dependent!

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