A loved one with dementia.Story from the eyes of 3 people while travelling to a care home.
|The sun is shining brightly outside my car window as I wait at a traffic stop. The summer season has set in Goa; the sky is a clear blue, the weather a perfect warm; an apt temperature for summer plans; family outings — beach, BBQ, picnic, and the likes.
For us, in the car, however, it is quite the opposite.
The air in the car is sullen and quiet. I try to make the occasional conversation with Mai on the back seat, but her replies are in monosyllables. My wife Justine; beside me on the passenger seat, sits silently, mostly in thought, making an occasional comment or a random question to Mai.
So, although the world outside our car window is the perfect temperature for fun and frolic, we in the car are solemn and tense, unsure of our destination ahead and how things will unfold.
Within a year of diagnosis, Mai's Dementia progressed to unmanageable, with my kind and benevolent hearted mother becoming paranoid, aggressive and irrational. Some days; when Mai is her lucid self, she is much easier to deal with, but those days are now far and few. Today seems like one of those days; with her being seemingly calm, composed and subdued, however still timidly retreated into her internal world of disillusionment.
Justine, myself and our kids Robert and Nancy have given Mai, our love, and support through her most difficult of phases. But as her symptoms worsen, it has inadvertently festered, filling our once cheerful house with anger and resentment.
Dementia; although a condition diagnosed to a single individual; in reality affects an entire family, bearing down on the threads of its relationships, unraveling it at its seams wearing it thin and as a result exhausting and depressing each and every person within it. Yet, our family strived through it for the love of their mother and grandmother, but last week's ordeal was what sealed the deal to today's excursion.
A few weeks ago; unknowingly to anyone in the house, Mai wandered out the front door by herself, leaving us with the mental and physical torture of frantically searching the streets close by looking for her. Thankfully, Nancy happen to spot her just in time boarding the village bus to Panjim and getting her off was an ordeal in itself with Mai setting into her aggressive and non-cooperative self.
The incident left the family stressed and troubled with the fear of this ordeal occurring again. We were lucky to spot her when we did. Thus, after much deliberation we finally decided; as suggested by her doctor a long time ago, for her own wellbeing, it was time to place Mai in a care facility.
Therefore; here we were today, on our way to an extensively researched care facility for Mai. Oblivious to our destination, she sits in the back seat, somber and quiet. I feel a weird sort of emptiness in the pit of my stomach since the time I awoke; my heart heavy with an unbearable ache coupled with the feeling of guilt for what I have set out to do.
I look out the window of my passenger seat beside Felix, not really registering anything that passes us by. I cast a glance at Felix to make sure he's okay; he has been pensive and absent-minded all morning, going about the house placing things in places that don't belong. It isn't easy for him, what we have set out to do today, but he has finally accepted it as the inevitable solution.
They're relationship has never been an easy one; bordering more on hostility, since Felix’s Mammi Mai had essentially raised him, with Terezin Mai being an absent mother for most of his growing years. She worked in another state; supporting them — something she never let him forget. Yet, Felix always felt abandoned, feeling she could have done more to keep him closer to her. This difference in opinion brought with it a lot of animosity within the mother – son relationship over the years.
But despite their strained relationship, Felix never waivers from his obligation as a son. He still cares for her and wants to tend to her despite the hardships the family faces with her condition. So, he mentally struggles with having to see the people he cares for pitted against each other.
Our children; although understanding of her plight most of the times, still find it extremely challenging to be objective when Mai spews aggressive tirades at their parents when she is in one of her moods. I, too, feel akin to their feelings when she verbally attacks them, but being the adult aware of my husband's predicament, I advise them to be more sympathetic towards her, although most days it is increasingly difficult to justify.
My relationship with her too has always been a very prickly one, with her never having approved of Felix 's choice for a wife. Yet; at this time in her life, I feel sorry for her. Mai has always been a strong and independent woman; making lemonade with all the lemons that life threw at her. She faced her obstacles head on and never abandoned her duty as a mother, albeit believing that financial support was all that a little boy needed from his mother.
So now, when she needs the assist, I try to help and make things easier for her where I possibly can.
I watched her earlier at breakfast, relishing the meal I made her. She dressed in her favorite; a floral cotton summer dress, one that she usually kept for special occasions. Smiling and mumbling to herself, she sat eating the meal in front of her, looking content and ready. It was almost as if she was prepared and had anticipated what was going to happen today. Felix on the other hand feels torn and guilt stricken, wanting to support Mai as a son, yet feels divided between wanting to tend to her and providing a stable and peaceful environment for everyone — including Mai.
I awoke this morning feeling like my old self again — strong and confident. I saw the packed bags at the corner of the staircase and I knew. I am not certain if Felix has spoken to me or not; these days I am not too sure of anything I do, say or see. But I have no anger or resentment in my heart for anyone. Felix has shown me love and patience to my heart's content, more than I gave to him, more than I deserve. I have always loved him, but in my effort to provide the best for him, I forgot that all the world's love and affection falls short compared to that of a mother's, which unfortunately my Felix never got enough of.
Unknowingly and unintentionally sometimes, I give this beautiful family a tremendous amount of grief and heartache. Despite all the things I remember saying and doing, Justine and the kids have nevertheless opened their hearts and patiently accepted all my flaws.
I sit silently eating breakfast saying a little prayer for this large hearted family. I devour the chana ross and chappati in front of me; Justine knows it's my favorite, and then secretly look around the house and the people that live in it, silently thanking the Lord for showing me such love, short-lived as it may have been.
As we drive to our destination, I sit silently in the back seat watching the people passing by. Felix takes a turn, and we pass a familiar street and suddenly, I have a recollection and I remember where I was going the other day….
I am driving deep in thought when suddenly Mai hastily calls out to me as she somehow recognizes the road we are on. It was the road leading to my MammiMai's house; the one I grew up at, where Mai grew up at. She softly requested if we could go there; her pleading eyes speaking a thousand words. So, I agreed and quickly made a U-turn back to the lane.
MammiMai was no longer alive, but the house she lived in still stood erect. It was although a shell of a house now, weathered down by years of degrading wood and bricks. With us living at the apartment we purchased, our ancestral house was shabby and unkempt.
Mai stepped out of the car staring at the structure, her face lighting up, her eyes glistening with tears. She slowly made her way up the steps onto the porch. Justine quickly went to the adjoining neighbors house bringing the spare key we had kept with them in case of emergencies.
Stepping in Mai wandered through the house in a daze, her face depicting a picture of happiness and contentment. She seemed distant, as though far away, in a memory of sorts. As she came back to the front of the house where we waited, she slowly turned back again towards the house softly whispering a "Bye Mai” before slowly turning to face me again. She softly touched my cheek with her palm, smiled and with a sudden emergence of her lost confidence says, “Ok Felix, come let's go, I'm ready.” And with that, she makes her way to the front door.
As I watch Felix and Justine walk to the exit of the care home, I feel renewed and grateful. Felix turns to smile and wave, I can see him looking torn, so I smile a smile that emits what I truly feel.
A sense of satisfaction, contentment and pure happiness from within. Felix took me home to meet Mai one last time. I made peace with the demons that lived in me all these years.
“I'll come to see you soon Mai, I promise.” were Felix's last words to me. I knew he would, just like I knew that things would now be okay for all of us.