House of Glass

I wrote this on the 30^th of May but as always, couldn’t find time to post it. It’s a tough time right now for all of us. As always, writing is therapeutic. Almost the only thing that is, apart from Ishaan. So here goes…

Monday, 30^th May…

We brought Dad home from the hospital, 10 days ago. Although there’s a lot to be said about being in a familiar environment, it continues to be a tough time for us all. The best way I can describe it at the moment is like ‘living in a glass house’. Treacherous they are, these walls – invisible, sly, and unexpected.  You know what I mean. I know I do. Too many times I’ve ruined a graceful exit by hitting my forehead painfully on a glass door that I never saw coming! That’s just how it is living with a patient of dementia. You think everything’s going well, until ‘WHAM’, you walk straight into a wall and everything – your goals, your hopes, and your spirit, lie shattered in a million pieces.

My Dad’s physical recovery has thankfully been on track (knocking firmly on wood here), and he can walk now with the help of a walker and sometimes even without which is a beautiful thing 🙂 But, (and there’s going to be a lot of buts with dementia patients), his renewed mobility, no matter how encouraging and freeing, is a double-edged sword. It makes him confident of being independent, while reality still remains disappointingly different. So although he can get to the ‘loo’, he may not always remember what happens next. Yup…right on cue…that ‘glass wall’. It’s heart-breaking to watch. It enrages me, to see a vibrant, active, intelligent and productive man reduced to a hollow shell. Rage, hopelessness, frustration…we go through them a million times every day. And what makes it so sad is that we know it will only get worse. All I hope for now is that we have more good days than bad days. That’s not too much to ask for right?

Wednesday, June 1^st …

When I wrote on Monday, I was in a dark place and my words reflect that. It’s not in my nature to stay pessimistic for long, but these days trying to stay positive is increasingly, a challenge of Herculean proportions. A lot of the stress stems from the fact that it’s not just my Dad that’s the patient. My Mom is just as bad. Her fear and concern for Dad (although both valid), have paralyzed her to the point where she cannot seem to make the simplest of decisions. As a result, my Dad, when he’s lucid, gets irritated and angry and yells at her for the silliest of things, and you guessed it, yours truly has the unwanted, unenviable role of mediator. Life was fast beginning to resemble a war-zone in our ‘House of Glass’. Glass walls mean no privacy  NONE. Instead what you get is an agonizing free for all, where nothing is hidden but everything revealed in the clear  light of day. I didn’t realize how quickly Life’s ‘warm sunshine’ can transform into a ‘harsh spotlight’ – a magnifier of faults and a diminisher of virtues. Oh that it would be vice versa.

Since the Monday however, things seem to have taken a turn for the better. I say this warily, coz I’m all too familiar with the unexpectedly sudden twists that are routine in dementia. Dad’s lucidity seems vastly improved. When I say vastly, I don’t mean he’s back to normal. Au contraire, he continues to have difficulty remembering the time of day or year, what month we’re in, what day it is and on occasion our names. He can’t find the right words for some of the stuff he does remember, and his clarity of thought is affected, making it hard for him to sustain a meaningful conversation for a decent period of time. This, in a man who’s joy in life was to debate with me and my brother. C’est la vie. And yet, his demeanor seems calmer, the angry outbursts less frequent, and the disorientation markedly diminished. Perhaps it’s the stars, perhaps our prayers are finally being heard and answered. Whatever the reason…I’m grateful. And although H hasn’t been much for Happiness these days, it’s still for Hope.

And so this is me, trying to stay positive and holding on to Hope however slender. Because although living in a house of glass is like walking through Life with you skeleton exposed, occasionally, there’s a prism – and unlooked-for, a rainbow appears, brief but real. And for a few fleeting magical moments, it lights up this transparent universe, and for a time, we breathe.

Breathe people. Here’s to more rainbows.

Related articles

• Hope for a Dementia Cure (everydayhealth.com)
• Knowing the Make and Model of Dementia (everydayhealth.com)
• How Dementia Tampers With Taste Buds (everydayhealth.com)