I wrote this on the 30th 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, 30th 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 1st …
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.
- Hope for a Dementia Cure (everydayhealth.com)
- Knowing the Make and Model of Dementia (everydayhealth.com)
- How Dementia Tampers With Taste Buds (everydayhealth.com)
16 thoughts on “House of Glass”
My heart goes out to you Harsha. I often hope that I never have to go through such difficult times and wonder how I will get through it if that time ever does come. I do hope your glass house lets in many more rainbows than cloudy days ahead. Prayers for you and yours.
Thank-you Jacque. I’ve seen a few dementia cases within my family when I was a kid growing up. Both my great-grandmothers were affected but it really wasn’t my responsibility then and I never knew what caring for them actually entailed. Now I do, I wouldn’t wish it on my worst enemy. Am hoping for more rainbows too.
Hugs to you, Harsha. I’m sorry to hear that your father is having trouble. I’m thinking of you and sending prayers that the days will improve for your father and your family.
Thanks Maura. We need all the prayers we can get.
I read it and felt very bad for you all as well as for him. Is there no cure for this, even to improve it?
I understand the precarious situation you must be living in.
Since you write that writing is like balm for you let me cheer you up by saying I have removed my block, and have started intro to Yesubai’s ( Maratha king Sambhaji’s wife)own thought processes while in house arrest in Moghul prison. I hope to send it to you in few day time.
Meanwhile wish you as good a time as could be.
C’est la vie Kali bhai and I suppose we must make the best of an awful situation. Yet as I type, I’m happy to be able to say that Pappa is doing better these days…calmer and more oriented than last week. Lets hope the good streak continues. I’m glad you’ve started writing! Look forward to reading it.
Wishing more rainbows for you through the glass walls!
Thanks Priya. That’s just what we need.
May God give you the grace to laugh in the midst of your circumstances.
That is a wonderful wish indeed. Thank you kindly.
Harsha, I can sympathize with your situation. My grandfather went through this. To say that it’s tough to watch is an understatement. It’s also extremely difficult to be the caregiver. You don’t realize how quickly their faculties are degrading. The missteps seem small at first and then they kind of pick up like a roller coaster.
Sending you strength and courage through the blogosphere!
Thank you Jacquelin. Strength and courage – both much much needed. It’s so sad to watch isn’t it. Sad and scary 😦 My Dad is going through a good patch at the moment for which I am thankful coz as you said, who knows for how long it will last? Even so, we’re one of the few lucky people that can afford help. We have a male helper that comes home & stays from 9 – 6 pm, so we can all breathe a little.
I’m so sorry, Harsha…I wish there was something I could do to make things easier for you!
Thanks Wendy! Things are a little better now…although my limbs ache from the constant crossing! Hugs, H.
Hi there, Harsha.
Can’t imagine what you’re all going through and have to face on a daily basis. It must be an enormous adjustment that demands a lot of mental and emotional strength from you and the rest of your family as his support system.
I hope that you have a support system for you as well to help you through the the emotional trials and triumphs. Hang in there.
Thanks CM. It’s been a while since I’ve been able to visit your blog with everything’s that’s been happening. Now that Ishaan has started school, I’m hoping to get caught up on my Life in general. Have looked at some of your pictures though and they are cool 🙂
Life at the moment is a rollercoaster – lots of ups and downs and generally exhausting. Mentally mostly. I feel sometimes like I’m living in the geriatric ward of a hospital and it’s not pretty, but c’est la vie and one just puts one foot in front of the other everyday, hoping for the best. These days good days are when Dad is calm and not having an angry outburst. Thank you so much for your concern and wishes. I appreciate it.