Where did you go Mom? By Debra Scully,

Where did You Go, Mum?

Where is the lady who was concerned about how she looked?
Where is the lady who was particular about appropriate dress?
Where is the lady who is ever supportive?

Not always reasonable, but always supportive?

Where is the lady who would cook, bake, decorate and design?
Where is the lady who was so keen on doing things herself?
Learning new things?
Where is the lady who had an amazing pulse on all the goings-on in the family?
Who could remember important dates?
Who knew our schedules to the hour?
Whose life-blood seem to echo the ebb and flow of time?

In her place is someone else
Who looks like Mum,
But is unconcerned about how she appears,
Someone who lets others do things for her,
Someone who can’t remember schedules,
Someone who mixes up dates and recipes.

 Someone present but drifting into the past,
Someone whose repressed hurts surface
But filters no longer work,
Someone who forgets but is still sensitive,
Someone I do not really know.
Where did you go, Mum?

I wrote this in the week that Mum was lost and found.  She had gone out to buy dinner for herself as she would from time to time.  Three hours later, she had not come home and I made a police report.  Fortunately, she had not been admitted to any hospital.  After two hours of driving around her haunts, my brothers and I decided that we could not do much more so we tried to get some rest.  Late morning the next day, we got a call that she was safe in Marine Parade.  She lives in Serangoon.  What she did and how she got there remains a mystery as she had left the house in her bermudas and tank top with only $10 in her pocket.  Of course she did not take her phone or Safe Return card or even her Senior Citizen concession card with her.  After all, she was just going to get dinner.  What a harrowing night it was for us.  Trying to sleep – while unsure if she was safe or warm enough – was very difficult if nearly impossible.  But really, there was little else to do.

Not knowing where she was brought home the fact that my mother was literally disappearing before my eyes.  The lady I knew was becoming a shadow of herself and this new person was someone I had to get to know all over again.  And I did not know where my mother went.

I write poems to help me make sense of what I understood of the dementia.  We noticed that she was developing certain new habits and preferences, and referred to events that took place a long time ago as if they had just occurred.  She was first diagnosed with mild cognitive impairment (MCI) about a year earlier, and her geriatrician reassured us that not all MCI develops into dementia.  But this was not to be.

Mum’s forgetfulness got worse.  She would repeat the same questions, she would repeat answers, as if she was trying to commit them to her memory.  At first I blamed her, reminding her that we have encouraged her to write things down but she refused because she had always prided herself in being able to remember things.  Later I learnt that people with dementia find it hard to learn new things.  This was also easily seen in her refusal to change TV channels with the remote control and using her mobile phone.

I think I did all the necessary.  I got her the “Safe Return” card from Alzheimer’s  Disease Association (ADA) and the Lasting Power of Attorney done.  We ensured that her mobile phone was charged and that it was one that she was familiar with.  We rehearsed with her what she could do if she became confused and did not know where she was.  But it still was a challenge.Reading even more and talking to some people helped me to appreciate that Mum was deteriorating with every medical crisis my father went through – from his stroke in March 2011 and being subsequently wheel-chair bound, through his many hospitalisations and physiotherapy sessions, the family tensions and helplessness, the newer issues of different routines and fewer social opportunities, him becoming bed-ridden and finally his death, a day before her 80th birthday.

My father’s stroke took a huge toll on her.  They were an active and independent couple with an active social life.  And they lived on their own, without house help.  But his loss in mobility caused her social circles to shrink as well.  She was floundering and depended on my brothers and I to speak to medical and social services personnel to examine options and make decisions for her and my father.  When we engaged a domestic helper, she was upset as she felt usurped in her role to care for my father, something she had done all her married life.

About a year ago, my mother kept wanting to “go back home”.  She would convince my father who was bed-ridden and would try to wake him up and move him.  It was becoming dangerous and we thought of placing a home camera to capture her actions.  But on an occasion when a picture of her trying to move my bed-ridden father off the bed was shown to her, she denied that it was her.  She would get really upset when we tried to correct her.  Because she and my father live on their own with a helper, this care-giver got the brunt of her anger and sharp tongue.

After my father’s death, my mother kept referring to him leaving her for another family as she thought of the funeral as her own father’s passing.  It has been very difficult to see her sadness at my father’s absence which she explains by him “going for exercise”.  This emptiness she feels has manifested itself progressively, with her feeling even more often, that she wants to “go home” – and this is not the final journey conversation.  She does not feel that it is home anymore because my father is no longer around.  Her mind goes so far back to her childhood home which has since been broken down, so I am not even able to bring her there for a visit.  She may be craving the reassurance of security in a family where she felt loved.

I knew that she was missing my father and that she needed more opportunities to socialise.  However, my suggestions for her to attend a day-care centre were summarily dismissed as she felt that she did not need it.  She felt that she wanted to be free to go out whenever she wanted to.  The truth is that she had not been out on her own after the time she got lost in February this year.  In spite of her refusal, I met a medical social worker for a referral to day-care and was placed on a waitlist.  In the meantime, ADA suggested the Family of Wisdom programme and she enrolled in it and started attending it a few months after my father’s passing.  She enjoys attending it but it is only weekly.  I am ever grateful that Mum was subsequently accepted in dementia day-care which is walking distance from where she lives.  She is active, participative, feels important when she is engaged to assist staff there and enjoys being out of the house and interacting with others during activities.

Things seemed to have settled into some routine now with Mum attending day-care and ADA’s Family of Wisdom regularly.  She is more engaging now as she is able to tell us what she did during the week.  Her mind seems sharper and she is less likely to dis-engage from conversations.

But I have to be realistic.  This state will continue for as long as Mum remains the same.  Mum will deteriorate.  So all I can do is to ensure that I can learn more about dementia support and connect to resources with Mum’s changing needs.  I also have to remember that dementia affects different people differently.  She has displayed many of the common characteristics and we have tried to shore up against anticipated progress of the disease.  I am sure Mum’s past has a great influence on how dementia manifests itself in her.  Most people with dementia have a certain “reality” and often, it is not necessary to correct them or point out their mistakes as they would just as soon forget it.  But they would remember the negative feelings of being thwarted.  Mum’s past hurts and her odd way of assuming things to be true, if she thinks it so, come through more often now.  So I guess we need to gently steer her away from these emotional struggles of the past.

It is indeed a cruel disease.  When I am unable to cope, I write.  The following is another attempt at making sense of losing Mum.   This is the confusion and sadness of trying to manage a mother with dementia.

It starts innocuously:
The lost keys,
Skipping an appointment,
Or messing up a recipe.

Then it creeps in insidiously
In seemingly new habits or tastes,
Rationalising old favourites into new preferences.

 Then it becomes apparent
That there is more than just forgetfulness,
When agreements are broken,
And conversations can’t be followed.

A cruel thief
Stealing pockets of memory,
Re-arranging time sequences,
Leaving holes in the mind.
Slowly, unable to string thoughts,
Follow conversations,
Pay attention,
And be present.

That it whittles away efforts in self-care
To strip pride in appearances,
Leaving behind
A shell.

Doing and not remembering,
Reading and not making sense
Present but not really there.

A lady dies slowly
Her brain first
In a healthy body,
Till even the primal brain
Can no longer instruct.
And the body weakens
And fades
Long after the mind was lost.

 Debra Scully, in her 50s, works in the Civil Service.

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