Some readers have introduced the idea of having a Word for the year instead of Resolutions. I’ve thought about it and chosen my Word. It’s Dream. Instead of being busy chasing last year’s dreams, I will pause and reconsider. What are my dreams? What have I pushed aside and forgotten? What does my heart long for? I hope to re-discover hidden pleasures that used to give me joy. And even as I accept the unpleasant truths in the current reality, I should also try to dream of how things might be better. So I shall Dream and name my heart’s desires, at least to myself. After all, I need to know what I want in order to go about making it so.
This post is about death, disability, disease and decision-making.
There comes a time when someone is ill or dying, and decisions have to be made about treatment and whether or not to prolong life, or suffering, as the case may be. Who makes the decisions? When? How? Singaporean not only love acronyms, they like things neat and orderly. And so several laws and programs have been put in place to help people do things properly.
Unfortunately, the introduction of these new programs have been muddled up with rules, details and legal jargon. Let me try to demystify it a bit…
Last will and testament
This is obvious. This is a legal document determining how to distribute one’s worldly possessions upon death.
Example – Aunty Helen died, and in her last will and testament, left her house to her son, her jewellery to her daughter, her bank account to her chauffeur and favorite charity, and only $100 to her constant companion, whom we all knew was after her money.
Advanced Medical Directive (AMD)
This is legal document you sign to request your doctor to let you die, in the event your are unconscious and death is imminent. Once the document is registered, your wish will be recorded in a secure and secret place. Only when you are seriously ill, about to die and unconscious, will you doctor be able to request to check whether you have made an AMD. An AMD can be revoked anytime, verbally.
Example – Mr. Shia Vo had a bad car accident and was brought to hospital unconscious from a smashed skull. They managed to hook him up to a ventilator and revive him, but his organs are failing one by one and he’s not going to recover. The doctors checked and found he had an AMD, but his mother is adamant he revoked the AMD last week when she discussed life and death matters with him. The doctors have no choice but to leave him on the ventilator until his heart stops in about a week.
Lasting Power of Attorney (LPA)
This is a legal appointment for someone to take charge of your affairs should you lose your mind. Also used in the case of adults with mental incapacity. A person holding the LPA (called the donee), cannot make serious* healthcare treatment decisions.
Example – When Aunty Dora realised 3 of her siblings had developed dementia, she quickly gave her son Sam the LPA because she was worried about herself. It was lucky she did that early, because a couple of years later, she became demented rather rapidly, and Sam was able to go to the bank and stop the swindlers from cheating her of all her money. He further arranged for Aunty Dora to receive round the clock nursing care at home, and paid for it from her bank account.
Advance Care Planning (ACP)
To express one’s wishes and values to loved ones, so that when the time comes, your loved ones are able to make your healthcare decisions, consistent with what’s important to you.
Example – Mr Gar had kidney failure and needed renal dialysis three times weekly. It was hard for him, but he coped with it. A nurse there got the family involved in ACP, and Mr Gar told everyone how much he hated being dependent, and how he would rather be dead than bedridden and unable to talk, unable to eat. A few months later, Mr Gar developed sepsis and was admitted to the Intensive Care Unit (ICU). He was very weak, and doctors gave him powerful antibiotics. However during the second week of ICU he developed a severe stroke from a large bleed in the brain. Mr Gar’s family knew from the ACP what Mr Gar would want, and requested his doctors switch from aggressive treatment to comfort care.
Story Combining All
Mrs K was found to have a brain tumor 3 years ago. Before her brain surgery, the neurosurgical nurse conducted an ACP session and spoke to her about appointing a surrogate decision maker in case of complications. Mrs K, chose her daughter, Sara, who was close to her. Mrs K expressed she was willing to live with moderate disability, as she was looking forward to her son Dan’s graduation from law school, Sara’s upcoming wedding, and grandchildren.
Before going into surgery, Mrs K called her lawyer and revised her last will and testament, and made an LPA appointing Dan the donee (Sara was hopeless with money matters). The surgery went well and Mrs K was as good as new. That is, until several months ago, when the tumor recurred and Mrs K developed behavioral abnormalities. She became apathetic and could no longer handle her household affairs. Her children were deeply saddened, but because they had already discussed it, cared for her as she had wished.
When Mrs K deteriorated, Sara arranged for home nursing, called the doctors in when required, and decided against hospitalisation as that was against her mother’s stated wishes. Dan paid the bills and managed his mother’s finances.
An AMD was not applicable and no one sought to check if Mrs K had one, because Mrs K declined gradually and death was not “imminent”.
See, that wasn’t so difficult, was it?
* The donee in an LPA can only make basic healthcare decisions and cannot make any decisions which involve refusing life sustaining treatment or treatment required to prevent
a serious deterioration in the condition of the person lacking capacity – see Guidelines. (edited 20 Jan 2015)
Have you heard of mindfulness meditation? It is about being present, to be wholly concentrated and aware of the present moment instead of having your thoughts winging off somewhere else whilst you’re doing something else.
Practising mindfulness has helped me be a better listener – to focus on the person and what’s being said, to be less judgemental, and to concentrate.
When I drive, I sometimes turn off the radio and just… drive. I try not to let my mind float but to focus on the activity of driving itself. Apart from being more aware of my car and the vehicles around me, I hear so much more. There is the sound of the wind blowing, and the sound of the wheels on the road. I notice the color of the sky, the road, the road divider, the buildings beside the road. I just drive, and notice so many things I would not have paid any attention to.
To my amazement, practising mindfulness has helped bring me peace. I become aware of the world that is, and not the world I wish it were.
I’ve noticed somewhat belatedly that Mom is mindful. When she makes a cup of tea, she is fully concentrated on every step of the process. Taking her cup, getting the tea bag, putting the tin back, pouring hot water, getting the spoon, and the bottle of sugar. Putting things back. Every movement is thought through and deliberate. She thinks of nothing else other than making that cup of tea as she is making it.
Mom is practising mindfulness, everyday, every moment that she is awake. Perhaps dementia has robbed her of the ability to hold many thoughts at once, and she holds just the one thought, that of the present moment. Or perhaps her years of studying and learning concentration and focus is helping her to cope now despite her dementia.
I believe that if one were to practise mindfulness before dementia set in, it would mitigate the dementia symptoms. Something to think about.
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.
It’s already February, so I’m at least a month late, but I do want to talk about “resolutions”.
New Year resolutions are often just a list of behaviours one hopes to comply with in the course of the year, and I have been guilty of making and breaking some of the following…
- I shall eat wisely
- I shall be nicer to my mother / brother/ children
- I shall study harder, save more money, exercise more frequently
For some reason, resolutions tend to be repeated year after year after year. I know.
I wonder if the problem is because a year is too short, and there’s always the next year, and the next… to accomplish what we could not complete this year. Meanwhile, the most important things in our life could be waylaid by resolutions that were not properly thought through. After all, we failed at them because other more important things came up. Say we wanted to eat healthily, but a friend insisted on having a nice meal. Between your friendship, having fun, and your resolution, guess which two won out.
So perhaps the better way of going about it is to figure what is most important to us in the longer term, and aim further down the line to accomplish this. Say, setting goals for 10 years, instead of just one year.
So in my early twenties, the 10 year goal could look like this:
- pass college
- get a job with good career prospects as soon as feasible
- get married and have two children
- buy a house
So these things should happen in 10 years’ time, or they might be accomplished sooner, in which case, in theory anyway, I can sit back and shake legs until the next 10 year period comes around. That’s something to look forward to, isn’t it? Nothing in there about being a perfect fuddy-duddy and always eating healthily and exuding kindness. You could say healthy eating and kindness are merely means to an end, being essential to the goal of getting married and having two children, so they should be practised anyway, but no need to be perfect.
So now, what would I like to accomplish in the next 10 years? To be honest, I can’t see that far. Somehow, life seems so full of uncertainty and variability right now, so I’m going to modify the technique and consider the next 5 years only.
Very briefly, in the next 5 years, this is what I would like to achieve:
1. To be fabulously fit
2. To travel to places I have never been about once a year
3. To be an expert in a chosen field in my career
Goals are goals because they should be set above the line of what would otherwise ordinarily happen. They must be something more which one aspires to. Hopefully, they are meaningful things one dreams about accomplishing, and would feel happy to achieve. Meanwhile life goes on – seeing to Mom’s needs, enjoying the moments, and taking care of the mortgage, the laundry, the dog.
I find setting a five year target focuses the mind, and gives one stronger purpose. What do you think?
Instead of saying thanks for the good things
Have you tried being grateful for the bad stuff?
The difficulties you face, the lousy people in your life.
and strangely enough…
It brought me peace
To accept the problems as part of life
To feel compassion and practice patience
Without night there is no day.
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?