The Retrospectroscope

Mom was admitted to hospital last weekend. She was ill for a couple of days, and we thought she was getting better. But she got worse all of a sudden, and we admitted her to hospital.

In hospital, tests were done, and urgent treatment instituted. She made improvements – not as quickly as we expected, but nonetheless… again, we thought she was getting better. We were wrong. This weekend, she got worse “all of a sudden”, and now she is in ICU.

They say hindsight is 20-20. And it’s true! It is so clear the clues were all there, how could we have missed them. They were so obvious!

Part of the answer must be wishful thinking. We paid attention to the signs of improvement, and denied the danger signs hinting that things were worse than expected. We told everyone and ourselves that mom was improving, and promised her she would be home soon.

Only now, when we apply the retrospectroscope, we realise how wrong we had been.

And isn’t that how we live out our lives? We move forward, and suddenly something happens and our world view is shattered. What happened? Were there warning signs? Why did we miss them? If we were honest, we might see that we had ignored twinges of discomfort, preferring the illusion that all was fine.

That is how it is with me, anyway. I prefer to err on the side of being positive. Look on the bright side, things aren’t so bad, count your blessing etc. But I’m trying to change this, and to learn to face reality in all it’s dimensions. I’m learning to be still, to centre myself… to observe, and to accept. Life is real, it can be painful and unpleasant, and to be truly alive is to know that such feelings exist and face them.

And the reality is – over the last week while mom was in hospital “getting better”, I had not been able to relax or sleep well. Some deep part of me must have recognised the unspoken reality that she was more ill than we all acknowledged. But now she is in ICU, and definitive treatment has been undertaken. She is stable for the moment. More importantly, we have really done all we could. I think I will sleep well tonight.

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Coffee and fleeing thoughts

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I see an old colleague in the cafe near the office. She hasn’t been well, I heard. Getting forgetful.

I join her.

Hi, Rachel, remember me?

Oh, hi! What are you doing now? 

Same old, same old. What about you? What have you been up to these days?

Oh, I’m giving it up. I’m going to stop it all. My last position, volunteering at the hospice… It will end in two months.

Really retiring now, finally, eh? What do you really look forward to?

Er.. reading. It’s so important. To read a good book.…. Say, what are you doing nowadays?

Just the usual …. What are your plans the rest of today?

After this, I’m going to the bank. And then… I’m going home. Next week, I’m taking a holiday. 

That’s fantastic. Where are you going?

To Malaysia. Be close to nature. I find it… refreshing, really refreshing. You know, this placereally difficult to find the way. Bad design.

Yes, there’ve been a lot of changes. New shops. It doesn’t look anything like what it used to.

Yes, yes.

Look, let me not hold you back. Can I walk you back to your car? Where did you park?

The usual place. Level 2.

I was getting really concerned. There are no carparks on Level 2.

Do you remember which lift you took? Look, I’ll bring you down the lift nearer our offices. We’ll start looking there.

We found her car ten minutes later and she drove off. I looked after her with concern. What will she do? Who will look after her? She didn’t have family and lived on her own. Probably her friends will have to band together. I made a mental note to look them up.

 

Feelings about Dementia

It is difficult if not impossible, to talk to Mom about her condition. For one thing, it is not openly acknowledged that there is a problem at all. We all carry on as though everything is just as it should be. So I am grateful for Dementia Daycare and the periodic medical appointments – in some ways, these affirm to us that we are doing the best we can, and not completely in denial!

At the last medical appointment, when the nurse ran the depression checklist on Mom, I sat at a distance and listened in. Mom’s answers were a bit surprising and enlightening. To most of the questions, she gave stock answers, for example confirming that life is worth living, and she does not feel worthless. But when she was asked if she felt unluckier than most, Mom hesitated, then said, “Of course, the young are luckier.” The nurse wanted a Yes/No answer, so in the end Mom said, “We should not compare. It is not the same after all.” And so No, she does not feel unlucky.

So there it is.

There is a lot more going on under the surface than meets the eye. I believe Mom is very stoic and does not want to cause us trouble. But there’s more we can do to help her fit in, and to make everyday count. Let me give it some thought.

Ronald or Maggie?

Questions: Supposing you had dementia, will you tell? Why?

Who will you tell?

Will you even know you have dementia?

Answers: umm, Yes, No, Maybe, It depends.

I have always wondered about the above questions, and struck by the different approach taken by 2 previous world leaders:-

In 1994, Ronald Reagan gave a speech announcing his Alzheimer’s disease. He ends his speech by saying –

“I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.”

By all accounts, he led a life cosseted by close family and friends until he passed away 10 years later.

On the other hand, Baroness Margaret Thatcher is not known to have admitted to having Alzheimer’s. Her daughter Carol was vilified for revealing her mother’s illness in her memoirs. She said (this taken from article in BBC News) –

“I almost fell off my chair. Watching her struggle with her words and her memory, I couldn’t believe it,” she says.

“She was in her 75th year but I had always thought of her as ageless, timeless and 100% cast-iron damage-proof. The contrast was all the more striking because she had always had a memory “like a website”.

In recent years, more and more public figures are standing up to admit they have dementia – Glen Campbell, Pat Summitt… Like Reagan, they are aware of their condition, facing up to it, accepting help, trying to live their lives the best way they can. Unlike Reagan, they are not hiding away.

There is still a significant stigma against mental illness in Singapore. There is no public face to dementia. Dementia is generally attributed to old age, as seen in the recent article below, which also highlights how family members go along with this erroneous belief.

Denial sure looks sweet and pleasant. But the truth is a great deal more painful and ugly. Painting only a rosy picture about mild dementia puts an unreasonable burden on caregivers who struggle daily.

But I’m guilty of going along with mom, and not talking about her dementia. That’s why the visits to the Memory Clinic are a strain. Undergoing the memory test makes her irritable, because the questions are so simple and she probably realises she ought to know the answers. Not knowing irks her.

And the Neurologist saying to her “You have dementia!” gives me a fright. I sense she is not willing to understand, not willing to acknowledge there is a problem with her mind. Because our sense of self is in our heads. That’s where we “are”.  Being told we are not right in there must be earth shattering.

I am full of admiration for a fellow blogger, Kate Swaffer, who blogs regularly and advocates for dementia sufferers like herself. Please lend her your support!

Back to my original questions. Would I tell? Probably. If I knew. Will need all the help I can get!

Wouldn’t you tell?

Denial and Acceptance

One of my favourite authors is Margaret Atwood. I really enjoy her novels, and last year decided to get a book of her poetry. When I read the following poem, I felt a chill and felt sure she was writing about Alzheimer’s disease. It starts like this:

“My mother dwindles and dwindles

and lives and lives.”

by Margaret Atwood.

You can read the whole poem here. She cuts right to the heart of the matter. Sometimes I think she is so cold.

In preparing to deal with the coming months and years as my mother’s illness progresses, a couple of books have been really useful. I found the following book for caregivers by Johns Hopkins so useful I bought two hardcopies to share with the family. First published in 1981, do make sure you get the updated fifth edition (2011).

I gave one copy to my daughter to read. Actually, she already knows quite a lot about Alzheimer’s, this will be supplementary information. I encouraged her to flip and read at random, so it is not a chore, but a way of learning more little by little. She flipped to a page and said Urggh! “Wetting”. She flipped to another page and saw “suicide”. Now, that’s new to me too. I will have to go and look it up.

At dinner last night, my friend who had visited briefly with my mother, said to me, Don’t you think your mother is terrified of what is happening to her?

I think she is right. And denial is the perfect defense mechanism to fight the terror. And so with other family members too. Denial leads to:

– buying special foods to improve mental health

– buying encyclopaedias and sudoku books

– tuning in to documentaries and watching the news endlessly to try to remember what’s happening

– saying my mother’s just doing that to seek attention, instead of acknowledging she cannot remember

– speaking in long sentences as one is used to, instead of adjusting into a new way of communicating

In time, denial will give way to acceptance, and acceptance will be accompanied by pain and grieving at the loss.