The Notebook.

The NotebookQuite how I got interested in seeing The Notebook is a mystery to me but I did pick up the idea from something I read somewhere and sent for a DVD which strangely enough came on the 13th inst.  I could not see it on V Day however but was able to see it last evening.  Lest my readers start imagining all kinds of things, no, there was no valentine involved.

This is one film that I would have most certainly liked to have seen when it was released in 2004 if someone had pointed out the theme to me then.  Urmeela’s dementia was quite advanced by then and perhaps even she would have liked to have seen the film as there are elements in the film with which both of us would have related.

It is a poignant story well directed and acted by seasoned actors.  The characters are very normal human and not some utopian ideal models.  I particularly enjoyed seeing all the old models of automobiles.  All in all a worthwhile movie to see, if one is willing to spend time on a good old fashioned love story with an element of care-giving thrown in.

Care Giving.

“I feel the capacity to care is the thing which gives life its deepest significance.”

~ Pablo Casals

It is no surprise that when we were asked to suggest topics for the LBC posts, this came up on top of my list. It is however a big surprise that this post will also celebrate the LBC entering our fourth year of existence. The last three years have been eventful for me and among the coping mechanisms that I developed during the period, an important element was the LBC posts and the close relationships that developed between me and other LBC bloggers as well as some readers.

I used the phrase coping mechanisms because just over three years ago, I lost my wife and I had to find a new meaning in my life. Since mid 2001, my meaning in life was to take care of her after she was felled with multiple cerebral and cardiac infarcts. I was a care giver. All other aspects of my life took lower priority and the primary focus was on keeping her comfortably alive and to ensure that her dementia did not cause her any embarrassment ever. In the earlier part of that decade, I was able to take the support of my son and daughter in law which gave me some freedom of movement but once they separated and went off to live their separate lives away from us, it was the two of us together for long periods of time which had never been the case prior to that due to the traveling requirements of my career. Eventually, our son did return but had to go overseas and was otherwise quite busy with his career that I had to carry most of the load. A care giver from the USA Linda reached out and even interviewed me for her blog. That interview will give some idea of my pre LBC life.

Strangely enough, this was the happiest period of our life of 40 years together as we had never been together like that for such long periods of time. On the three occasions when she got lost when having gone out for walks were nightmarish for me till we got back together. After the last of that experience, I decided that she will not be unaccompanied ever and till her death, that was seen to. Urmeela was also an ideal care receiver, hardly a bother and ever cooperative. We were joined at the hips and I got addicted to care giving!

After her death, there was naturally a big void and my father’s presence in my life at that point of time was something that I could have done without. I did however get out of Pune on a number of occasions and generally had an active and enjoyable life though the need to be around for my then 92 year old father did dampen my spirits somewhat. By late 2009 I also suffered from ulnar palsy that took my attention away towards my own recovery.

In January 2010 my father fell down and fractured his hip joint and since then I have had to revert to being a care giver all over again. Apart from the recovery time, post recovery complications started to appear one after the other for him culminating in his kidneys beginning to malfunction and a relatively simple care giving role has evolved into a more semi professional one with me having to play the role of a male nurse and ward boy too. In the meantime, I also underwent second revision to a hip joint and am yet to recover fully from the after effects. That does not help matters either.

“A man who becomes conscious of the responsibility he bears toward a human being who affectionateley waits for him, or to an unfinished work, will never be able to throw away his life. He knows the “why” for his existence, and will be able to bear almost any “how”.”

~ Viktor Frankl in Man’s Search For Meaning.

The two care giving experiences, one to my wife and the other to my father are vastly different from each other. While the former was focused on a cheerful if helpless patient, who affectionately waited for me, the latter is towards a very difficult person with a history of alienation from his children, thus making it an unfinished work for me.

There are many resentments that I carry towards the latter and often I find it galling to be forced into a role which is not accepted by him gracefully with gratitude, but one that he expects as an entitlement. For instance there is the way he makes a request – say after a meal, one would request the care giver to remove the plate from the bed table by saying “please remove the plate” or something like that. My father would issue an indirect command. “The plate may be removed” to no one in particular. This is to me, to establish the pecking order I suppose. To the help, it would be sarcastic criticism – “Can’t you see I have finished? Should I keep shouting to get your attention? Why can’t you do your job properly?” In my role as a care giver, I not only have to take the indirect command, but also pacify the help who tend to get quite fed up with the nagging.

In both care giving experiences however, the driving force was/is the “why” and it is indeed true that I found the “how” once I became conscious of the “why”.

That situation is enough to drive me nuts but for the various coping mechanisms that I have developed among which the blog world has become a vital part. In fact I have written another blog post earlier on the same subject. I also share my experiences with other care givers in India through group mail and FB activity. A significant contributor to easing of tensions is our family physician who is also my friend, and my sister in law who is a physician who is always available for telephone or personal consultations.

Over the last few weeks, my father’s condition is worsening. I have not been able to manage on my own and / or with the support of my son. I have hired a day time nurse who takes complete care of him for eleven hours every day, but I still have to be around to be the link in communication between them. Being feudal in his treatment of hired help, I often have to play a mediating role to keep the nurse in good humour and that leads to problems with my relationship with the patient too.

“The dearness of parents to children changes over time. In the pitiless eyes of natural selection, the utility of our parents to us declines, after a certain point, even faster than ours to them. As we pass through adolescence they are less critical providers and protectors. As they pass through middle age they are less likely to further promulgate our genes. By the time they are old, we have little genetic use for them. Even as we attend to their needs, we may feel traces of impatience and resentment. Our parents, then, are as dependent on us as we once were on them, yet we don’t look after their needs with the same gusto they brought to ours. The ever shifting but almost perennially uneven balance of affection and obligation between parent and child is one of life’s deepest and most bitter-sweet experiences.”

~ Robert Wright : The Moral Animal.

That makes more sense to me now than when I read it a few years ago, and I hope that I don’t ever have to make my son a care giver to me. As my fellow LBC blogger and care giver eloquently says, life deals our cards with unfathomable logic and we have to play the hands that are dealt to us. My one wish when Urmeela was alive was to outlive her so that I could care for her. Now, it is to outlive my father so that Ranjan does not get burdened with that responsibility and to predecease Ranjan quickly so that I don’t become the kind of burden that my father has become for me.

So, when last week’s topic was “Is Pessimism More Realistic Than Optimism?” I was at a loss to find an apt answer. Either way, I lose and so simply took the easy way out and published a flippant post referring to a couple of earlier posts more humourous than serious on the same topic. Care givers can neither be pessimistic nor optimistic. They have to live one day at a time and some times one hour at a time and handle whatever comes their way. I have learnt to laugh at the many peccadilloes that he comes up with such as different tones in talking with different people, different postures for different people and his utter insatiability. Humour helps.

I hope you enjoyed reading this post on the weekly Friday Loose Bloggers Consortium where thirteen of us write on the same topic. Today’s topic has been chosen by yours truly. The twelve other bloggers who write regularly are, in alphabetical order, Anu, Delirious, gaelikaa, Grannymar, Maxi, Maria SF, ocdwriter, Padmum, Paul, Shackman, The Old Fossil and Will. Do drop in on their blogs and see what their take is on this week’s topic. Since some of them may post late, do give some allowance for that too!

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.