Care Giving.

My care giver friend Swapna shared this link with our internet group of caregivers on World Elder Abuse Awareness Day, on June 15, 2012.

Before that, I had read this horror story. A while later another perceptive here.

In a response to Swapna, I had quipped – “Swapna, will you join me in starting a movement against abuse of care givers by the elderly?”

Swapna responded – “Ah, Ramana, this is a problem that is even more invisible than caregiver role or elderly abuse…Everyone says “they are your elders” and expects one to take the verbal and physical abuse done by elders as a sign of “respect”…I think ignoring this very real abuse is hypocritical. Say, I suggest you start systematically blogging about it; it is definitely a problem worth opening up about.”

Here I go to get the ball rolling. Can’t say no to Swapna can I?

I have been a care giver now for over eleven years. The first nine years for my late wife Urmeela who was incapacitated by multiple cerebral and cardiac infarcs and who suffered from dementia and other related problems. That care giving experience was pure pleasure and an experience that I would not mind undergoing once again. Urmeela was an ideal patient who understood her limitations and agreed to be cared for without any conditions. She would occasionally be lucid and would express her gratitude for all that I did for her and it was a pleasure listening to her on those occasions when she would be back to her normal ways. They were few and far between and that was my only regret.

My now 95 year old father came to live with me just a few months before Urmeela died. It has now been over three and a half years that he has been living with me. My care giving problems started in January of 2010 when he fell down and fractured his right femoral head. He had to be hospitalised and subsequently provided with round the clock male nursing care for two months. He recovered but that set back made an already cantankerous personality more so, primarliy because his hearing was rapidly deteriorating and even the use of hearing aids would not help. His hypochondria worsened and that was accompanied by ill temper and impatience. His mind and intellect is still in excellent shape but he is unable to keep pace with his body. Since the last four months, his kidneys have started to malfunction, his eye sight is weakening and he has lost all control over his sphincter muscles and bladder and is incontinent.

Prior to coming to live with me, he was totally independent and the lord of all that he purveyed, and his subsequent rapid decline has affected his personality which at the best of times was any way cantankerous. His expectations from me are that of a patriarch who insists on being served by his offspring. Since none of the other children are around to oblige, I bear the brunt.

His abusive behaviour did not cross such limits that I could not manage it, but on a few occasions I did have to suggest that I move him to an old people’s home to lower the heat. On a couple of occasions he volunteered to move out on his own and when he saw how with alacrity I was willing to oblige him by finding out details etc, he changed his mind.

Now, the abuse is neither verbal nor physical but with emotional blackmail through great play acting. Having seen through that, I do not react and that makes it imperative for him to improve on his histrionics. Since my sense of humour kicks in, I can handle that too. His not taking responsibility for his actions and words with the complacent “I have always been like this” attitude can be very grating.

His current way of abusing is to demand all kinds of things like a TV for his room, snacks from distant suppliers, summoning the cable service person to attend to imagined faults, scolding the help, asking for immediate medical attention, homeopathic medicines not locally available and so on. The worst is when he complains about the diaper being too tight or too loose or not properly fastened and so on.

Such abuse is pea-nuts compared to what many other care givers go thorough when the patient suffers from Alzheimers, Dementia etc and we have, at the initiative of Swapna and another caregiver Shikha, started caregivers group mail and FB page and use those forums for raving and ranting and extending moral and other supports to each other. The point however is that care givers receive abuse from the care receivers as well. When I had arranged for professional care givers, my father’s feudal behaviour would drive them nuts too and it took a lot of my interceding to see that they kept at it. This too is a permanent feature of other caregivers’ lives with constant turnover of hired help due to the patient’s inability to accept help from outsiders.

Swapna’s latest post has given me, and I am sure other caregiver followers of her blog, hope that it will be alright in the future.