Preface : The sandwich generation – Those who are spending all of their mid life caring for the elderly parents while trying to keep a career, run a home, pay the bills and raise the children. A daunting task that always takes a toll on one’s life. The voices of the caregivers stay unheard, sometimes trapped in their journals.

Inspired by a real life story and a real life journal. This is in response to our writing promptShare the story of a caregiver who has nurtured or looked after you or your loved one. 

                                                                       Maya’s Journal 

Monday, January 13, 1997

I am exhausted like I am everyday at this time of the night. I want to shut this screen and go to the warm and cozy bed awaiting me.  But writing has always helped me to process my thoughts, retrospect, and give me the strength to face another day.

This morning when I went into Ma’s room, she sat there staring through her window, watching the morning thoroughfare on the street below. She did not look at me as I settled her breakfast tray in front of her.  Scrambled eggs, toasts smeared with butter and orange marmalade and coffee. Strong. Dark. Black. Bitter.

The coffee resembled the relationship that two of us share, ever since her dementia.

When I went back to her room later, the eggs were scattered on the floor, along with a few breadcrumbs.  The dishes broken, the silverware thrown across the room but the coffee mug stood there in front of her. It was intact and empty.  Breakfast was the only meal I did not have to feed her so far. That has to change now.

She smiled a wicked smile at me and then turned her face away. I cleaned the room. Bathed her and changed her. Made her bed. Fed her an early lunch and then cleaned her again. All she did was holler at me “Nurse”, “Nurse”.

That part hurts the most. That’s what dementia does to you. The daughter in law becomes the “Nurse”, the son is still a “school going kid” and the grandchildren do not exist.

I am guilty of spending less time with the children after they come back from their school these days. I am so spent by then. All we do is read together after dinner. They have so much to tell and I have so little time for them.  We have not taken them for a trip for a year now. They rarely invite friends over. They do not fuss over food or anything for that matter.  They are always helping us around the house, even running errands at times.

We are robbing them of their childhood. I cannot fix Ma’s dementia. But I wish there were more hours in the day. I wish there was more happiness in this house.

Thursday, January 16, 1997

The last two days have been a nightmare. I am not sure if I can blame it all on myself. Ma walked out of the house while I was helping the children with their science project. She wandered in the neighborhood at first and then walked towards the main street leading up to the freeway.

A stranger provided this information as I ran on the streets looking for her. I had left the kids alone at home. They are young at 8 and 6 years old. But I did not have any time to let the neighbors know. I asked them to call their Dad at work and let him know.

We found her three hours later at a tea stall on a highway 10 kilometers from home. Had she walked all that distance by herself? She would not tell. 

When asked why she had left, she had responded in two words. “Bad Nurse.”  Then she looked towards me, smiled a wicked smile and spat. The wetness on my face left me embarrassed and humiliated.  I did not want the children to see this. But they stood witness to it.

For everything that I do for Ma, I know I will never stand a chance for any love or any form of understanding from her.  She will never know who I am or what it means for someone to bathe, feed, clean and take care of her everyday.

We do not have the money or the resources to hire help. The last affordable full time nurse had quit within a week.  How can I disown the woman who mothered my husband? I certainly cannot. The people who tell me it is my responsibility to look after her, that I am a brave and a kind woman to do so, I laugh at all of them. They know nothing about any of this. They do not live with dementia. I do. 

There are times like after today’s incident, I feel hopeless… helpless. I want this to end. I do not feel bitter. But I want this to end. I want the suffering to end for her. I want her to go away as the person she was before.

I want it to end so that I become the mother I want to be.

I want it to end so that I no longer have to see my husband’s defeated face buried under the surmounting number of medical bills.

Monday, January 20, 2007

When I tucked Ma in bed tonight, she looked blissful. I can only hope for a calm morning tomorrow. No broken dishes. No food mess. No blobs of spit. No curse words. No wicked smiles.

Ma insists on eating on chinaware only. Melamine and stainless steel has been rejected. So I have bought some cheap china. Ma insists on eating by her self. So I serve food that is easier to scrub off the floor, walls and clothes.

Bathing and cleaning is getting tougher. She resists. She has the strength that my husband and I together do not possess. At least she is kind to him. She keeps telling him to get her a new “nurse”.

It has become a new joke between us. “I am thinking of getting a new nurse,” he winked at me and said today.

“Sure, please do.”

“I will find a pretty one.”

“Like I care! “

We laughed aloud. We have to laugh about Dementia if we have to live with Dementia. We will not be able to live with it otherwise.

Picture By : Soumi Haldar. More pictures with other stories here