Wednesday, February 10, 2016

Oh Hi AGAIN.

I have always thought that people who have been either fat or pregnant, will have no trouble telling the difference between fat and pregnant. I, for one, can tell. In the past many years, there were a few occasions when I was mistaken for being pregnant. The janitor in my university, stranger on the subway offering me a seat..etc. I always managed to laugh it off and it never really bothered me. But in recent times it stopped being funny. Perhaps a reflection of all the indecision that we face - even a well meaning friendly jab only serves as an unwanted reminder of the conflict and confusion and doesn't amuse any longer.

Which is why, when I visited the doctor last week complaining of exhaustion and fever, and he asked me if I was pregnant I immediately bristled. "No, just fat" I grunted defensively, whilst doing the math in my head. I couldn't possibly be, I thought. But just because this was a doctor asking, and not a nosy annoying auntie, I began wondering- just what if? So I picked up a test on my way home. B was out of town, and I began thinking of all those chick flicks where the husband comes home and the wife shows him a plastic strip with two lines on it. And there's much disbelief and jumping and emotional moments of all sorts. Of course, the test was negative and my faith in the ovulation cycle was reaffirmed. Of course I felt a tingle of disappointment, but had the result been anything else  I think panic would reign above all else.

We've had a great social spell the last few weeks- just after I blogged about how bereft I feel of a social life. One of B's closest buddies was visiting from the U.S. We had a great time- one of the times we went to his house while a horde of his relatives were visiting- and as he introduced us to his cousin- she looked at B and another buddy of theirs and said to him- "Oh of course I know these guys- they have been the constants in your life". That really described the kind of friendship these guys have and I couldn't help feeling a teeny bit envious. After this friend left, another bunch of friends visited and we got to see up close and personal what it is to have two kids, within the age span of a year. When you are of advanced parental age, so to speak. Its a lot of energy, a lot of patience, and a whole lot of sacrifice. I am sure it is satisfying too.

And then a good friend visited me yesterday after several months. She told me that I seemed a lot more calm and at peace- and it felt good to hear that. It is indeed true. She has seen us through all the stages of our return to India and our tryst with my Father In Law's condition, and yes, after all of it, I have learned, I think, to just let it be. Take it a day at a time. Be positive and stop fretting about things out of my control.

Yeah! That's not such a bad mantra to have. :-)






Sunday, January 24, 2016

Oh! Hi...

Its been a while, yeah? No this is not a new year resolution or anything (given that we're 24 days into 2016 as it is) but just one of those sunday afternoons I feel like a brain dump of sorts.

I think that ennui has set in in my life. Professional and personal. I don't feel as charged about my work as I used to. I am tired of the situation at home. My FIL has essentially reached the stage where he's just there. Moved from the bed to wheelchair, wheelchair to bed. Has to be cleaned, bathed and fed. And barely recognizes us. On some days we elicit recognition, wide eyed smiles, on other days we get a blank stare. He mostly babbles incoherently, or screams out loud in pain when he's moved, or sometimes for no apparent reason, perhaps hallucinating.

While we are lucky to be able to afford an attendant 24h that looks after him, and does a fairly decent job, and is quite affectionate with him, I'm sick of him too. He's a permanent fixture, hanging around in the living room all the time, leaving no room for myself and B to ourselves. He is all over my FIL at times, cooing and prattling with him like he's a baby. I find that very irritating.

But then I step back and think of what a terrible job he has- to caretake for an old man, clean up after him, day in and out, without a break. If he has come up with his ways to make it more fulfilling or entertaining for him, I'm no one to stop him.

In any case, I want other things now, things that I wished I had all these 4+ years since I got married but made my peace with not having. The privacy and freedom in my own house to walk about in shorts. To snuggle up on the couch with my husband. To not cook anything when the cook doesn't show. To enjoy sex in our own house, not feeling threatened by the sudden ear-piercing screams from my father-in-law's room. To think of a future for ourselves- a baby even. To think of saving money, without the added expenses of caretaking for my FIL. It must be worse for B to witness his dad go through this. And he is on the duty every night to help move his father back from the sofa to his wheelchair to his bed. So no matter where he goes or what he does, that is his cross to bear at the end of every day. And deal with his dad screaming in pain while he does it.

And now that our presence/absence doesn't make any difference to my FIL I've begun to open up to the idea of admitting him in a residential facility. We had our first tryst with it a couple months ago, when the attendant situation was getting out of control and we decided to admit him in a home. Then, we enjoyed the few days of respite, of having the place to ourselves. Still, we'd try and go meet him twice or thrice a week, and I was terribly emotional through it all. Felt like we had done a terrible thing. Over several days, we began making our peace with it- even considering it for a more permanent arrangement. The only thing that bothered me was that some residents were terrible violent and aggressive- screaming, running in the hallways, and I didn't think it was nice that my mild father in law had to be subjected to it.

But then he had a serious incident of loss of consciousness while at the home, had to be admitted to a hospital from the home, and our situation took a terrible turn for the worse. We ended up doing frantic hospital runs, dealing with the emotional turmoil of how much more interventional care to provide for my FIL as he lay in the ICU. Not to mention the severe financial dent it made for us.

While it was all well and good for well meaning relatives to say "let go" etc. it's really a lot more complex than that. What does that actually translate? Pull out all the vital life saving plugs and watch him go? The fact is, little is in our hands, other than drawing the line at how much palliative versus interventional care we wanted him to get. 

For e.g.- We had conversations with the doctor on DNR protocols. We made an active decision to not let him get on a ventilator. But we said ok to a central line to send drugs to his system more efficiently. We put our foot down against expensive brain scans- what good would it tell us other than his very obvious neurodegeneration? Would it in any way contribute to his recovery? It was mere academic curiosity.

The doctors tried everything within reason to make him OK, because that's what doctors are trained to do. There are a million gradients between not putting someone on a ventilator, but having him in the ICU with a whole team of people focused on the simple goal of making him better, even if he was getting worse along the way. And that's what happened to my FIL.

It was a very emotionally draining and conflicting time for me and B. And quite frankly, if you are not a doctor, you just have to trust the doctors blindly. No amount of second guessing, second opinion seeking, googling will do you any good. B, who had lost his mother several years ago to what is quite clearly medical negligence, seemed a lot more better at this than me. I marveled at his strength and stoic-ness. But at the end of the day, he also wanted to take his dad back home, and in relatively good shape- at least in the same shape in which we had taken him to the home a few months before that.

Almost 20 days later, of which 10 were in the ICU, when he finally showed signs of maintaining his O2 levels, breathe on his own, he was discharged. All the clinical landmarks were met. When we brought him home, we had to bring with us an O2 concentrator, oxygen cylinders, a hospital bed, alarms and sensors and what not. We now had two male attendants at home to take care of him. Tend to him. Flip him from side to side to prevent further bed sores. He had to be fed through a ryles tube, incapable of swallowing. The episode had really pushed him over.

Over a month, well taken care of by the two attendants, he regained some of his capabilities. The horrible tube came out, he could swallow on his own. He was maintaining his lung capacity and the o2 cylinders could go. We no longer had to monitor his sp. O2 overnight and that horrible beeping sound all night long stopped. We got rid of 1 attendant, the house began to feel a little less crowded than earlier. But now he had lost all ability to do anything on his own- even sitting up in a chair and holding himself straight. And so he has stayed that way since. Improved since he was wheeled out of the hospital, but a lot worse than the stage in which he was taken there.

As far as we are concerned, we made a conscious decision to not take him back to a hospital ever again, should he suffer an emergency again. We will let nature take its course. We have a very insightful doctor specialized in geriatric care whose philosophies match ours, and we reach to him in case of any medical need- for e.g. an infection, a catheter etc.

So that brings me to now. Plain tired of and from all of this. B and I have attended caregiver support groups, tried to network with people in similar situations as ours. That made me feel fortunate that my FIL is at least not aggressive like some relatives explained. Or that we are not in our 60s, caretaking for an even older parent with Alzheimer's. That we have the resources to have help at home- so we are not actually doing all the chores around caregiving. We can get away every now and then. Take a weekend or so off. But still. I'm tired. I want us to think ahead for ourselves, without this situation clouding our thoughts. And it seems impossible to do while we are in it. So I have begun to come around to the idea of admitting him in a residential care facility. It feels selfish but I can't help it. B feels the same, but I don't know how he will deal with it if we actually put this plan in action. We checked out a few homes- one was too expensive, and the other, well- affordable but didn't seem like a nice enough place. So we let it be status quo for now.

Oh. well. Dekhtein hain. Perhaps a change in job/location will force this decision on us. And will let us start anew and address my professional dissatisfaction too! So that's what I am focusing on now.

In caregiver forums, we are now able to share advice and helpful tips with others who are 5 years behind us. The one thing I wish I did better, was to socialize and engender a support system. B has a handful of cousins in the city, who, had we made better efforts at keeping in touch with, would have come in handy to house sit for us once a while. Or make friends in the complex we live, just to have semblance of life outside of this and our jobs. We totally let our circumstances consume us and closed the door to a social life. I wish we hadn't done that..








Sunday, May 31, 2015

Whats On My Mind

Typically, a major/minor  jhatka is what sends me blogging. This time it is the fact that my parents returned to their home after spending a nice 2 whole months with us. They house was full of noise, discussion, people and of course, good food. Both B (isnt that what I called my husband on here? I forget) and I totally enjoyed their company, planning outings, getting hot breakfast in the morning, not having to worry about daily chores etc. It was superb!

They left early today morning and the house feels woefully silent. I'm sure tomorrow, back to work, it'll be less depressing, but still. I miss them like hell.

Coming to work. It has had its moments. I knew what I was getting into, and now, having gotten there, I am not exactly gung ho about it. Other times, I'm enjoying and learning. Hmm. Kya karen?

On the whole make or not to make baby issue. (Heh. Thats almost redundant, because, In India, babies are reffered to as issues :-)) B and I decided to go ahead and try. We'd give it our best shot (eww) and woudn't be overly disappointed if it didn't happen given the fast diminishing ova and other things. We are trying to eat healthy, exercise and stay stress-free to increase our chances. But its easier said than done. We both have pretty stressful jobs, and, when we come home, there's my father in law to deal with. Even though we have 24h care for him, its still very draining to simply witness what he's going through. He now has Parkinsons in addition to his dementia. He cannot process a simple instruction like "stand up". We count our blessings that he is still very mild mannered, and doesn't yet show signs of agitation/aggression etc. But I cant help wonder, how long this is going to go on, and how sad it is for him, to have such a low quality of life, and for us, especially for his son, to watch him whither away in such a painful manner.

So yeah- I'm still not convinced about the baby thing. Friends who've had them are all about oh wow how fulfilling it is- yeah sure! If'you've spawned another human being there's bound to be an overwhelming sense of pride/responsibility/love and all of that. I would never deny that. What I wonder is, how bad would it be to NOT go through that? I guess thats for me to find out.

I still hang on to my freedom, including freedom to go get an alcoholic beverage whenever I feel like, or get on a plane/train and travel to a new place, or stay back late at work to get something done. I've also realised that my patience bank is limited, and I've expended a good deal just with dealing with R2I, living with B's father and all of that. In sab ke beech mein baccha?

Whatsapp has quite invaded and pervaded our lives in all sorts of ways. I'm not most thrilled about it. Meaningless forwards, tacky good morning messages, silly jokes (all of which I'm also guilty of fw-ing sometimes :p) I could totally do without. What is worse when the same joke comes in from different people/groups.  What I love, is how accessible it has made some of my close friends. Especially those that are saat samundar paar and would be very expensive to call as often as we now exchange msgs on whatsapp.

I've been wondering a lot about the sanctity and boundaries in marriage. Whats ok, whats not? Is having a close buddy of the opposite sex ok? Is going out with them to drinks - without your spouse ok? Is beginning to care for their well being - in a very human way  - ok? Is harmless flirting OK? Is having cosy whatsapp conversations with them OK? What is harmless flirting anyway? If it doesnt involve sex and it doesn't offend the flirtee does that makes it harmless? What if it offends the spouse of the flirter? Who's to know or tell? Sometimes, I don't know. Also, btw,  what's healthy flirting, while we're at it? :p

We live, we learn.

I've a lot more on my mind I wanted to dump, but I'll stop here for now. The weather's perfect for an afternoon snooze.