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Archive for January, 2012

It’s a fact. I don’t like it. But there it is… the likelihood of Anand having to live in a centre for many years as I get older and am unable to care for him at home… and certainly when I am ‘permanently gone’ … is a given.

This is something that has bothered me for a long time, and continues to occupy my waking [and sleeping!] thoughts. and I try to make life as pleasant for him as I can while I am around.

But the thought for this blog arose when I overheard my father say to someone one day, not too long ago, in a rather woeful tone …”What do I have to get up for in the mornings?”. This from a man, who, in his mid 80’s has a routine that would put many an office goer to shame. His day starts at 7:15 am or so with being read to for an hour or more by my brother all the way from the USA, followed by his favourite music, breakfast, followed by having an assistant take dictation, read to him for about 3 hours, followed by lunch and favourite TV programs, a short nap and tea, followed by another 2 hours of being read to by our in-house companion and help, followed by yet other favourite TV programs…etc etc. And there are days when there are special visitors, meetings etc, regular telephonic interactions with other folks… etc. etc…You get my drift…. 🙂

But it set me thinking… if he thinks he has nothing to get up for…. what does Anand have to get up for? No specific job to go [other than errands often deliberately created to occupy him], no wife/girlfriend, children to give him a purpose in life, nothing per se to look forward to… And, I must admit there are days when I feel the same way… “What do I have to get up for?” given that I spend most of  my time on guard and attempting unobtrusively to ensure that the basic needs of these 2 men are met.

But to get back to Anand. When I think of the likely number of years he has ahead of him, the question troubles me even more… How is he going to get through those years? And I realize that just as I use some of my fondest memories of my life to get me through some really hard days, I could try to get Anand to do the same.

And this means creating those memories. Organizing activities, ‘events’, trips, special dinners or evening snacks, moments of quiet companionship just watching inane/mundane TV programs or bits of his favourite movies with a bowl of popcorn [or chips and a dip between us], having him help mix the batter for his chocolate cake or other cooking tasks that engage him, coloring together in his drawing book, reading him a story, letting him sleep in my room when he’s upset and scared, taking him out on little outings [despite my fraught nerves because of the way he now hassles the auto rickshaw drivers  every time he gets into one, or the stares we get when he goes into one of his retching fits in the middle of the road or in a store], giving him a head massage, sharing specific links or photos for him on his Facebook page, having his favourite people come by and visit whenever possible.   And so on….

There may be several [or more of you out there] who wonder why at least these things wouldn’t be available to him later on… But that’s the reality of life in an ‘institution’ at this point in time. Something that a group of us are trying to change…but no guarantees that the changes will come in time to be of benefit to our children…

Life is hard enough for Anand….his anxiety, his off and on depression, his limited competencies in many areas, his aggression; conspire to make some days unbearable. The other ‘good’ days have to make up for those….. and all the days ahead….

I hope it will help… at least a little… and he will remember that no matter what the ‘downs’…. he was loved.

PS. Just a few hours after I posted this blog, the situation with Anand took a sudden downturn… and he had to go back to the centre after a continuous 10 months at home…It will be a while before he can come back…but we will try… for tomorrow is another day…

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