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..