4. Now

After my wedding in 2010, the downward slope has been more slippery for Appa. I remember that he was able to walk by himself at least once at the wedding and we were also able to take him to the bathroom as and when the need arose. In the time since then, he relies on diapers and a urine pot, unable to understand when he needs to go and basically, unable to go even when he does know. Amma has had it tougher than anyone else obviously. She has been a 24x7, 365 days caregiver year over year, for the last 10 years.

Amma is simply unbelievable for the patience and the care that she gives him. She tells him this freely and it is very true - no one else can give him the kind of care that she has, over the years. Who can give up their night's sleep every single night? Appa can not turn in bed, cannot sit up, cannot lie down or move once he is in the bed. He calls out for her every single time that he wants to even move a little in the night. Earlier, he would have very precise requirements of how the bedsheet would have to be placed over him, how the lungi would have to be between his legs while in bed, how the pillow would have to be placed, etc. All this while putting him to sleep is one thing, but to be woken up in the middle of the night, every single night, can drive anyone up the wall. But not Amma. She continues to provide care to this day.

She is everything to him. It is debatable whether even his Mother would have taken this much care of him. She has an amazing appetite to listen to him patiently, bear his mood swings and still come back to him to check if he needs any help. Of course, at times, we believe that she needs to be a little different. But then, we are Indians - good at commentary but not at implementation. Nowadays, she pulls him out of bed, takes him to the bathroom, seats him on the pot, washes up after he is done, makes him brush his teeth and walks him out, holding his hands to support him. She ensures that she has a multitude of small bowls soaked with all kinds of things ranging from okra to fenugreek seeds to ridge gourd ready for him to eat. He somehow manages to eat that by himself while he spills water over the newspaper which he is no longer able to read or make sense out of. Following this, frequently, he is unable to understand if he really needs to go to the toilet. He asks to be taken there - so off she goes again to help him there. Once this visit is done which can easily take up to 20 minutes, she heads over to make coffee for him. The schedule is maddening! Then follows breakfast which is fed to him as he is unable to eat by himself any more. Then she moves him from the dining table over to the TV viewing area where he sits and falls asleep. Then she heads back to the kitchen and does miscellaneous activity which is culminated with her breakfast. Later, it is back to take him for a bath to the bathroom. She gives him a bath and dresses him again which can take at least 30 minutes up to 45 minutes. Once again, he is helped out into the living room and lunch fed to him. Within 30 minutes of lunch, he gets restless and asks to be put to sleep. So off she goes again - drags him to the bedroom to put him to sleep for not more than 30-45 minutes after which he calls out indicating that he needs to sit. When does she sleep?! Soon, it is time for evening tea and a plate full of biscuits out of which he eats one. Nowadays, the diaper helps reduce his visits to the bathroom. But an hour after tea, there has to be bread toast and juice to be prepared for him. If not juice, then fruits. An hour later, time for dinner to be fed followed by bed by 10:00 p.m. The night time story is something else altogether. He invariably wets himself at least once in the night. Sometimes, he doesn't even call out for help because he is ashamed of himself. I remember the night last year, when I was with him during the night. I woke up with a start at 5:30 a.m. to find him wide awake, naked waist down and in a completely delusional state. With me, it was easier because I don't listen to his protests as much as Amma does. But she has to go through this every single night! U.N.B.E.L.I.E.V.A.B.L.E. 

Nowadays, Appa wades through the hours and days unaware of the date, month or year. When he does initiate conversation, it is about something quite random and is a reflection of the state of his mind. The other day, he was asking if we had got the signatures. He wanted me to write a letter and get the signature on the letter. I did ask him which letter and to whom - he couldn't talk about things in such detail at all. Over time, my wife and I have realized that we shouldn't ask him such questions. The best way forward is to play along and say that whatever he is asking for will be done the following day. But in between all the doom and gloom, there is sometimes a single ray of light. There are times when he is coherent in thought if not ever in speech. He is able to indicate when he has to go to the bathroom. He is still able to recognize people around him.

His speech has completely deserted him. There are rare occasions when we can actually pick up a word of what he is trying to say. At most times, it is a movement of his lips but no sound actually comes out. We feed him food - I have read about stories where towards the later stages of the disease, even swallowing the food becomes a problem and I wonder how much longer before that happens with Appa! We used to ask him to speak louder as that is what speech therapy for PD is all about - speak as loudly as you can. But nowadays, he probably can not speak louder at all! He doesn't sleep too well at night but sleeps for much of the day instead. In the night, he is haunted by dreams, hallucinations, convinced that there is someone out there. After spending a few hours sitting the living room, he needs to be reminded of the direction and the way back to his room as we lead him back there. His walk is simply non-existent - he relies on the person leading him to pull him along as he forgets that he is expected to walk. The lost look is evident in his eyes. His eyes - they are still aware and sensitive to our facial expressions but when he has to express something or talk about something, they have the look of a lost, confused person. I have seen that look in his mother's face when she says that she can not hear a word of what we are trying to say. It is the same look. He takes in so many pills, it is insane. He takes pills for PD, Diabetes, High Blood Pressure, Vitamin B-complex, etc. Of course, he is no longer aware of how many pills or which one is to be taken at what time.