What her day is like, in her reality

My Notebook: Printed Pages – 11

By C.E. Pereira

Each day I see Dementia take more control of my Mum. I cannot begin to explain what this sickness is, yet I watch the destruction it leaves behind. The Mum I knew isn’t here any more. It is only shattered pieces of her that I see on and off. On those rare moments when she knows me, I treasure them.

But I needed to write about what my mother’s day is like. Her reality. The world she lives in,  Dementia. To read it, to try and understand that it is this sickness that is in control, that destroys the mind.

This is what the medical explanation states….”Dementia is a decline in mental ability which affects memory, thinking, problem-solving, concentration and perception.”

Below is what her day is like in her reality:

Help me! Help me! Help me! Repeated over and over.
I cut in and ask, “What is it, Mum? What help do you need Mum?”
She stares vaccantly at me.
A minute later, Help me! Help me! Repeated over and over.

She either stares at me with an angry look, a vaccant look, or she answers me. Her answers varies….. I want to go home! Can I go outside? Can I follow you? Can they come in? I want to go upstairs. But my house is single storey.

I want to go home.
You are home, Mum. This is your room.
I can stay here?
Yes.
Thank you.

I want to go home, she pouts.
Where is home?
What? She asks.
You said you want to go home.
You take me home? She asks.
You are home, Mum.
Can I follow you?
I am not going anywhere.
Ok, I stay here with you.

I want to go home  she cries.
Ok, you can go home.
Can I follow you? No.
Why?
I’m not going anywhere.
Ok, I stay here with you.

I want to go home.
Ok, you can go home.
I follow you.
Why?
You don’t want me to follow you?
She cries.
Ok, you can follow me.
I sigh. I know I cannot reason with Dementia, yet I do these dumb things.

I want to go to the other house.
Which other house?
That one (she points to the window), the end house.
Who’s house, Mum?
Your other house.
This is my house, Mum. I only have this house. That one, not my house.
Ok. I stay here. I’m sorry. I stay here with you.
She is upset. I tell her all is fine, she can stay here. I am emotionally drained.

Why did you tell your son to get out?
Who?
Your son Don.
Don was here?
Yes.
I didn’t see him.
He was sitting here talking to you. Then you shouted at him to get out.
No, that was not Don. It was him. I hate him. Who?
My husband.
Why?
What?
Why you hate him?
Hate who?
Your husband.
What?
(It gets us nowhere)

My brother gets the brunt of her anger. The minute he enters her room, she screams. Get out! Get out! Repeatedly. This is followed by obscene, distastful words. Such harsh words spewed towards my brother. Yet, it is not my brother she sees. It is the person of her past. Her dead husband, my father. Maybe. Or spirits that are disturbing her.

I search my memory. I cannot find any incident that could have caused such an outburst. My parents had their bad days, but I always felt they loved each other. Now, I wonder if any of this is true or is it the Dementia.

For the record, I cannot remember my mother ever uttering the F word. Never! Now, it is part of her daily vocabulary.

Alice punched me on my arms, head, on my back.
I ask her, why did Alice punch you?
She punched me in the face. (She shows the action of fist clenched on her cheeks)
I gently move her fist away.
Why? I ask again.
She threw stones at me.
Why? I ask again
She is wicked.
I have no idea who Alice is.
Other days she repeats this same story but refuses to give the name of the person who is hurting her.

Sometimes her sentences are garble. She sobs like a kid while talking, making it hard to understand her speech.

Thank you, Charlotte. She does not see me. She sees her sister.
Why are you angry with me Charlotte?
I’m not angry. (I play along as Charlotte)
Forgive me Charlotte.
There’s nothing to forgive.
You don’t want to forgive me? She cries.
Forgive you for what?
Charlotte, forgive me?
It’s ok. I forgive you.
(I’m still in denial that Dementia can be reasoned with.)

I want yellow flowers on my head.
What kind? Roses, Carnations?
I don’t know. You can find it in the river. Lotus? I show her a photo on my phone.
Yes. This flower. It can be eaten.

Nice plants growing up there (points to the  ceiling)
Flower plants? I ask.
No, vegetables, potatos.

Counts her fingers. Says 10. When she is frustrated, she continues counting to 50 then it gets harder for her. She misses a few numbers, loose track and gets angry when I tell her what the number is. She starts all over again.

I ask her to do her exercise. Some days she’ll do, most days she refuses. The exercise are…. Open and close your fingers. Make a fist. Hands up. Hands down.

I don’t want him here. I hate him. She yells some bad words.
Who? I ask.
My husband.
I tell her he’s dead.
Dead? She asks.
Yes, long ago. We buried him in Cheras cemetary.
Ok.
A few second later, she pleads. Tell him to go away.
Who?
My husband.
What’s his name?
Tony something.
But he’s dead Mum.
The other one.
You have two husband? (I know I shouldn’t joke with her)
No, only one. She glares at me.
Tell this one here to go away, she shouts.
No one but us in the room.
I turn around, open the door and tell the invisible person to leave. Then, looking at my Mum, I ask her, has he left?
Yes, she answers.
I don’t know what I would have done if she’d said No.
As far back as I can remember my parents didn’t dislike or hate each other. This distress me a lot. I stay positive, it was a lost spirit taking shelter.

Please give me scissors. Why?
I want to cut my fingers? Why?
You don’t want me to cut my fingers?
Why you want to cut your fingers?
You want to cut my fingers? She shouts at me.
No, you said you wanted to cut your fingers.
I said, when did I say that?
I keep silent, I sigh. You cannot reason with Dementia. Yet, I did just that.

A few minutes later ….. Please give me the scissors. And a repeat again.
Some days it is cut my hand. Or bury my hand. And when I ask why, she thinks I want to cut her hand or bury her hand. If I am silent, she repeats, “Please, can I have the scissors?” And repeats. And repeats.

They pissed. All the piss from upstairs. See the wall, piss coming down. See the floor got piss. Where is the mop? I remain silent. She stares at me. I tell her the cats just had their dinner and are all asleep. She smiles. The mop forgotten for a little while.

My maid went out from morning, she tells me. Went with Deevee. Still not back.
Do know what time she’ll be back, she asks me? I tell her the maid will be back by 6 o’clock.

I told her she has a Great Grand Daughter and the little one’s name. And Mum repeated her name three times. Then asked why the name so long. One name can or not?
I tell her yes. You want Arya or you want Dayana? She chooses Dayana. Her grandson Hadi was thrilled that his grandmother was lucid to say his daughter’s name.

She is happy to see photos and videos of Arya Dayana. She repeats the little ones name. She repeats ….my great grand daughter.

She likes to see photos of bright flowers. I show her my photography of my flower album.

Somedays she wants to pray. And somedays she gets angry when I ask her if she wants to pray.

I like you because you are not fussy, she tells me.
Thank you Mum.
I am afraid of you sometimes, she tells me.
Oh!
You’re not sleeping well.
I sleep ok Mum.
Your eyes dark. She makes circles with her fingers near my eyes.

She said she will make us fight.
Who?
The girl.
Which girl?
I am not the girl. Why you don’t believe me. Ok. Ok. I believe you.
I didn’t break the chair. I didn’t break the window. I didn’t break your new hat.
One of those days when, whatever she talks makes no sense to me.

She talked about Saint Rock. A saint to cure infectious sickness if you have faith. She said it is not an imagination but faith. He will cure you if you pray. I learned of something new today from my Mum, of Saint Rock. Her explanation was so clear. One of those clear and good days.

She talks about a little boy named Caren. This grandmother (pointing to herself) and the other grandmother Gladys. They told Caren that Jesus was waiting in the Tabenacle. He asked why Jesus house was so small. I’ve been asking myself who is Caren.

The nurses didn’t feed me. I’m very hungry. Can you buy ‘kueh teow’ for me? I’ll pay you.

There’s a small indian boy who steals. Don’t let him in. He is clever to take things without you seeing.

She talked about an Indian Rajah from Kuala Lumpur wanting to marry her. She refused him. She said she was Roman Catholic so she cannot marry a Hindu. You see the big holy picture of Jesus. She points to the crucifix. Roman Catholic.

She thinks I went to jail. I got a little annoyed that my mother thinks I’m in jail. She said don’t be angry. She is happy it was not me in jail.

She lifts her pillow and ask if there’s anything under it. I said no. She said got ghost trying to take her pillow.

She sees a Dog named Snow White. We never had a dog named Snow White.

Why is Roy lazy? Sitting there. She points to the top of the cupboard. Roy, Roy! Roy! See lazy, just sitting there. Does she really see my dead brother? Or is this all hallucinations?

You didn’t go to school.
I answer, No school today.
It’s Monday, got school.
No Mum. It’s school holiday.
I graduated 40 years ago.

The tiles are all broken. She is upset.
Who broke? I ask.
The people.
Then, again she says, the walls very untidy. Yellow, purple.
What? I ask.
The walls. All dirty and broken.

Bone stuck in throat.
Yours?
No. I will scream if stuck in mine. It is stuck in the dog.
But fish bone was stuck in yours.
No. I brush my teeth, comb hair – she uses action to show.

Cut my hand.
Why? I ask.
Bury it.
Why? I ask.
You don’t want to cut? She asks. Ok! (yet, she looks annoyed)

A year into my mother’s dementia sickness, she saw the 3rd house neighbour’s wife standing behind me. I felt chills for the neighbour’s wife had died a week earlier. This was not one of her hallucinations. My mother didn’t know the woman had died. Did she see the spirit of the dead woman?

I go with the bald man.
Who? I ask.
The Indian bald man.
What’s his name? I ask.
I don’t know.
So why’d you want to go with him? I ask.
You don’t want me to go with him? Ok! I won’t.
I follow the old chinese woman.
Who? I ask.
Ok. I don’t follow.
Does she see spirits?

Later in the year a friend who has the gift to see spirits confirms that my mother is able to see them. And that my home has a few spirits in residence.
What else is there to surprise me?

There are days when my mother talks about men doing nasty and inappropriate things to little girls sitting on their laps. Did this happen in her past or is it from some movie she saw? I play along and tell her we’ll go and report this to the police. She gets frightened and angry, telling me these men will hurt us. That the police won’t help. She cries… Help! She cries… Help! I learned it is better to steer her away from nightmares like this. I still gave a hard time learning that I cannot reason with a dementia patient. It is very upsetting to both of us.

She warns me about someone behind me, wanting to slit my throat.
I ask, who?
The Bhai. (A Bengali)
She makes the action of slitting her throat. The hairs at the back of my neck stands up, a prayer on my lips. I steer her away from this. I talk to her about her four grand children.

She points at an invisible woman and whisper, “Don’t trust her. She is wicked.” I talk to her about her great grand daughter.

She sees snakes on the walls, ceiling and on her blanket. There is real fear in her eyes and voice. I recite the Rosary, after a while she recites it too. And calm is restored.

So far, there’s been cows, a white goat, chickens, frogs, monkeys, dogs, cats and many more that have taken up residence in her bedroom. She describes them vividly. I change the subject by talking to her about her cats.

There’s even a bus-stop and train station in her bedroom. There are people staying upstairs whom she is afraid of, yet my home is a single storey building.

She calls for help. Someone pushed her, she fell down.
Who? I ask.
She remains silent.
I show her photos of her great grand daughter who is a few months old. She smiles and ask if she can keep the photo.

They twisted her arms, they pinched her and slapped her.
Who? I ask.
She remains silent.
I show her my photos of flowers I took on my trips. Her eyes light up.

Are these real or hallucinations? Are these her memories or her reality now? She never mentions any names of those who frighten her. Even when I ask her for a name, she keeps silent.

One day my mother told me, “You never believe me. You always take their side.” It is all real to her at that moment.
Whose side do I take?
Their side.
Who are they?
She remains silent.
I feel helpless. I can only tell her I am sorry.

I want to ask you…don’t get angry.
What Mum? I won’t get angry.
They told me to pray the Hindu way.
Who told you?
They.
Who are they?
I don’t know.
She begins to get upset.
It’s ok.
Don’t listen to them. You are Catholic. Not Hindu.
You pray to Jesus. Only Jesus. Trust in Jesus Mum.
Ok. Then she makes the sign of the cross and says the Lord’s Prayer.
Are these spirits disturbing her? Or is it hallucinations?
I pray and bless the room with holy water.

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