Sunday, February 05, 2017

I think I am back

The best part about having a blog. Come and go as you please :-)

B's dad - my father-in-law passed away recently, after a 6-7 year long uphill struggle with dementia. I like to think the early years weren't as much of a struggle, and we were very lucky to be able to be there for him, with him and improve his quality of life in whatever way we could. Ironically, given that his cognition was only mildly impaired then, I also realize that he was the most affected by his situation at that point- irritation and frustration at himself, at having to depend on others for little things, inability to read the paper or do simple things that he enjoyed. But I saw him develop his own ways of dealing with it all as the years went by, and in the face of such a horribly debilitating condition, I remain thankful for the smaller mercies- a good geriatric doctor who guided us, a helpful local chapter of dementia caregivers association, a very caring and sympathetic full time attendant we had for the last year, a supportive maid at home, and of course, the financial ability we had to tap into all these resources.

The last year was definitely the hardest, on him, and on all of us. After a single hospitalization, he was pushed past a brink that rendered him bedridden for all practical purposes. He gradually stopped talking coherently, had to be diapered and hauled between bed and chair...fed by the attendant. He reacted to us, responded to our voices, to his attendant's voice, but in the last months, we saw that also fade out. To the point when we realized our presence/absence was not making a difference.

Around now, a very good career opportunity came B's way. It would mean moving countries, and either admitting his dad in a hospice or taking him with us. We chose the hospice route, based on a lot of reasoning and practical thinking and advice of his geriatrician.

Over the weeks, his condition had gotten worse. He seemed duller than usual, and had stopped eating/drinking -or rather - had stopped swallowing what was being fed to him. All the signs were there. Just as we planned to admit him to the hospice for a "trial", he passed away peacefully one morning, almost as if he didn't want to put us through this experience or go through it himself.

The dust has settled a bit. I realise how much I miss my father-in-law. Even in his stage of advanced dementia, there was some sort of strength we drew from having him with us. It's very hard to explain. And there was the daily routine that he was an integral part of.  B derived satisfaction in making him his first cup of coffee every morning. I wished him good morning and good night unfailingly, and upon returning from a tiring office commute every evening, would enjoy seeing him the first thing as I entered-  sitting with him, holding his hands and asking him how he was doing.

The finality of death is truly cruel. I cannot even imagine how B and his brother deal with it, having lost their mother quite tragically over 10 years ago. How we take the presence of a person for granted, and how, one day, they are just snuffed out. A weird, selfish feeling where we are willing to accept the n-1th day in the face of this, despite all the hardship that person may have been facing. Its a very helpless and humbling feeling.

B and his brother were brave and stoic through all of it- I do believe the rituals and ceremonies had some therapeutic effect. Family rallied around us, and B's closest buddies stood by him, with him, through all of it. To use my dad's words- theirs was an "unparalleled" kind of friendship he had never seen elsewhere. I am so thankful they were there, because I don't think I could have been there for him in the way that they were  - partly because I was grieving too, and also because of the way these rituals are structured- starting with the cremation of the body until the 13 day rites- there is very clear gender separation and women-folk don't participate in most of it. I did not argue or resist that.

A new phase begins now. B's left to begin his new job in a new city. I will be joining him in a couple months. It's all exciting, although tinged with the sorrow of losing his dad, we have to be thankful that we didn't make the move with lingering thoughts, worries and concerns behind us.


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..