New Companion

We have an addition to the household. A new person, brought in to help look after Mom. It cannot be helped, Mom needs a lot more assistance nowadays, and I could not keep taking time off work and being awake half the night.

So we did what anyone else in Singapore would do in the circumstances, we applied for a FDW – a foreign domestic worker. At last count, there are over 200,000 FDWs in Singapore (population 5.5 million). FDWs are here to do housework, look after young children, and care for the elderly. It’s a viable, affordable, multi-purpose solution to our burgeoning caregiving problem as more and more people get older and sicker and need assistance.

Unfortunately, I think it is but a temporary solution, and maybe in 5 to 10 years, we will have to think of something else. This is when the countries where the FDWs come from progress economically and they no longer have to come to Singapore to work. But that’s a problem for another day. Meanwhile, I am so thankful.

Mom is at peace and laughs. There’s someone to help her with her showers, and accompanies her day and night. She gets hot food and clean clothes and takes her medications on time. And I take this respite and carry on and catch up on stuff that was put on hold.

Mom is not getting much exercise nor additional mental stimulation. We’re all just happy that she came through her major medical issues and is still alive. She watches TV and walks to the toilet and sits at the dinner table. During weekends, I take her out for a meal and care for her on the FDW’s day off. So that’s our routine now.

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Thank you

A very thoughtful post by Gill about the relationship between caregivers and care recipients inspired this post. Please read it, she writes beautifully about her reaction (as a person with dementia) towards caregivers when they blog about their trials.

It got me thinking about my relationship as a caregiver, albeit part-time, with Mom, who has dementia. To tell the truth, I strive to do the minimum. Which is fine when things are stable and sailing along. Unfortunately, when things deteriorate as they have for the last few months, I wonder if I’ve done too little and feel bad as a consequence. Rest assured, I think I’ve sorted through what was within my control and what wasn’t, and learned a few lessons to be applied in future. So, I don’t feel so guilty.

I don’t know how my mother feels about needing care. We don’t talk about these things. But I do know she says “Thank you” at every opportunity.
Thank you (for my medicine).
Thank you (for taking me out).
Thank you (for helping me dress).
She simply accepts the help and thanks us for it. And I accept her thanks, “You’re welcome.” I used to protest “No need to thank me!” but I’ve stopped.

When I think about it, Mom’s independent streak makes her want to do everything by herself. Yet, although she never says it nor complains, she is aware that she is no longer able to do some things. She is able to graciously accept assistance and relinquish control. My “minimal help” suits her, because I only step in after she has tried and failed.

Dementia Village

When my children were young, they used to play at running a cafe and set up everything – the toy teaset and cutlery, handwritten menus and bills. I was often corralled in to be a patron, and made to order and eat up and pay up. When I wasn’t available or wouldn’t play, they just made do themselves. It gave me a pang to listen to them play at life – and what would you like to eat? Any drinks with that? Here’s your food. Bon appetit! 

There is an award-winning home for persons with dementia somewhere in Europe. It has beautiful apartments and gardens, where the residents can walk about and wander without “escaping”. Laid out like a little town, in this dementia residence, clients can visit the supermarket, restaurant and hair salon. Well-trained healthcare staff dress up as shopkeepers and unobtrusively observe and aid the persons with dementia (PWD). Any unsuitable purchases or payments are tactfully rectified without embarrassing them, and often without their knowledge.

I couldn’t understand it. I am sure I wouldn’t want to live in an segregated dementia village, where I am kept safe but essentially locked in, and given the delusion of freedom and free will. It smacks of condescension and play-acting. I don’t think I would want that, although I’m sure it is the best solution for some PWD. I should reserve judgement though, who knows what I’d want if and when my mind goes.

Instead of putting PWD into a village, perhaps we should bring the “village” into the community. How do we do this? This video from UK (May 2014) suggests how persons with mild dementia may get by “with a little help from friends”. A story here from Japan tells of how an entire community chips in to look out for an elderly woman with moderate to severe dementia who wanders for miles daily.

In short, whichever solution we choose, PWD ought to be able to live out their lives with dignity and comfort in a safe environment. The same can be said for their caregivers.

Support Group for Singles (who are Caregivers)

I received an email invite to join a support group for caregivers who are SINGLE!

This really put a smile on my face 🙂

No doubt it is put together to address the special problems faced by caregivers who are single. A single (unmarried, widowed, or divorced) caregiver will not have a spouse to share the burden of caregiving with. In addition, there are probably more financial stresses, if the caregiver is both earning a living and caregiving. The caregiver might also have other dependents to look after too – such as children, or another parent who does not have dementia but needs support.

But my imagination runs away with me….

Imagine a group of middle-aged singles in a room, commiserating with one another, being supportive, and helping find solutions. They also have something in common – a loved one with dementia. Just being there shows they are kind, responsible people…  perfect partner material. Isn’t the stage just set up for Cupid and his arrows?!

I am curious enough to consider joining, and check the dates. Alas! The schedule doesn’t suit! Maybe next year, haha!

ACP, LPA, AMD and the last Will and Testament

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”.

Conclusion

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)

Tender Love

This picture of an old gentleman tenderly feeding his wife appealed to me. She’s smiling gratefully back at him too.

(From a museum in Lanzhou, China.)

We can die quickly or decline slowly. In full awareness and pain, or in a fog of blurred comprehension. May we fill each and every one of our days surrounded by love and loved ones.

Me Grandma?

Brothers and sisters I have none,
But that woman’s mother is my mother’s daughter.

Another Woman by Amanda Heng

The other day when talking to me Mom referred to my daughter as H__.

Now H__  is my paternal aunt who used to live with us when I was a child. Now with grown children of her own, my aunt is living in another city and we last saw her a couple of years back.

Mom said her name so naturally, she was not aware anything was amiss.

That set me wondering, was Mom transported back in time to the years my aunt was living with us? If so, and Mom thought my daughter was her sister-in-law, did she think I was her mother-in-law?

Am I now mistaken for my GRANDMA??

Or perhaps Mom just affixed the name to my daughter, as there is some physical resemblance between my daughter and my aunt. That would indicate Mom is no longer able to distinguish clearly between some people.

It is quite a sobering thought.