SORRY AUNTY CHOW WE CAN'T HANDLE YOU

I rejected  Mrs Chew's mom,  Aunty Chow who has dementia and recommended her to take homecare for her mom instead of daycare at our centres. I hate to do this but it was necessary. Generally many dementia cases can be managed and from my personally count about 75% are manageable. But not this Aunty Chow

The main reason in most cases that I reject was because the family members were not truthful, they  were either lying or hiding critical facts or omitting it totally.

How do we know that the potential resident has problem or the family members will be lying? Easy, it always begin with this statement, "Oh there is nothing much wrong with my, she can walk and eat herself, I just want her to have activities and company." 

Let's be honest, how many Malaysians you know are willing to pay us a few thousand ringgit if their mother or father can do things on her own? 

I am not saying that Mrs Chew is a bad person, but rather a desperate person. This article is to share the trials and tribulations of people with parents suffering from dementia. Mrs Chew knew how hard it was to care for her mother and she knew she can no longer do it herself.

Mrs Chew the daughter of Aunty Chow did not disclosed honestly her mom's conditions. And her mom's conditions were so serious that our centre is not equipped to care for such conditions without medical help. Let me take you through this.

The daughter did not disclosed her mom's medication truthfully to us and that she has quite a serious dementia condition, okay all dementia conditions are serious need care but some elderly react differently. For most cases the residents with dementia just wanted to go home. Aunty Chow will break our door if she cannot go home and she will pull the shirt of other residents and staff and go down on her knees to beg people to take her home all the time crying and shouting like a Hong Kong TVB drama series

Aunty Chow gets restless, agitated and aggressive and even verbally abusive. It took more than 2 caregivers to take care of her. Aunty Chow would walk in and out the entire centre, trying to open every door, beg anyone and intermittently cry. The caregivers lost a few kilograms following her.

Besides dementia, my experience and observation tells me that she is not just having dementia alone. I suspected that she could be suffering from bipolar. I checked her medication list given in our assessment form. Only  two types of mild sedatives to manage her dementia but certainly it does not feel enough.

I called Mrs Chew the same day  to bring all her mom's medical report and all her medications.

True enough, the daughter wilfully did not disclose a drug for a serious mental disorder giving the excuse that the Dr gave her for 'firefighting'. From my previous encounters I knew that drug will never be given for firefighting, it was meant for managing her mom's mental conditions on a regular basis.

When the daughter gave us all the drugs, and my and nurse and I were shocked to discover there were a lot of drugs in terms of quantity. on further probing the daughter admitted that she had not given her mom most of the medications for her mental health.

This explained her mom's behavior.

You see managing an elderly with dementia is a partnership between us and the family members, we cannot do it alone. Everyday is new with elderly suffering from dementia, what works one day may not work the next.

With dementia,  family's ability to pay does not equals the centres ability to manage. Money is not everything and it does not compel us to accept them. 

When it comes to care, dementia and all her related disorder are the most difficult to manage and there are not many places who can take them in. I can count with one hand once I exclude the government facilities

But why do many family members lie or withhold truth and facts from us?

Embarrassed is one of them, many family members felt embarrassed that their parents had this disease. It is also a reflection of their own fear that the condition may be genetically passed on to them.

But the most common reason for not giving medication is "afraid of side effects." Which, is true all medications that can manage mental related disease will have side effects, some more than others. I fondly remembered my Professor and mentor on mental health, Professor Maniam of UKM told me this, "Any medications without side effects has no effect."

The family members fears are real and I understand. But we also need help to manage serious mental disorder and dementia. This is a conundrum that is waiting wantingly for help but not forthcoming.

The fear of side effects caused another side effect, the mom became unmanageable.Resulting in them having to manage their mom themselves. 

If this article inspired you to explore dementia care, do go ahead and find out more. It is such an important segment of aged care that so few indulged in that many family members are left without hope.

SUICIDE IN A MOMENT OF INSANITY

My fascination with suicide started in July 2014 when a 16 years old youth under my care committed suicide. She hung herself with her belt tied to her ceiling fan.

I was devastated.

A publisher friend told me that many of her writers currently are writing about suicide, depression and mental illness . I shared with her my research conclusion that it takes a moment of insanity for any individuals to consider taking one's' own life. Others may have other conclusions.

Let's talk about this 16 years old who decided in a moment to hang herself using her belt on her ceiling fan. She locked her door the night before and only in the morning her mom discovered her, hung from the ceiling fan.

Prior to her suicide, this young girl, Denise, was off the social grid in my youth group for two years. Her mom didn't understand what happened because she just suddenly turned into a recluse after her 13th birthday. But suddenly in June 2014 she joined us in a group outing to Taiping. Her mom was happy, thinking that she has finally came out of her reclusivity. We had fun and good chat and Denise even mixed around with everyone. Two weeks later tragedy struck.

I was told later by a suicide expert friend that the trip with us was her way of saying farewell.

Apparently there were signs of her mind turning dark, dark as in a bad movie evil controlled dark. Her teacher showed her mother an essay. A simple essay where student just continue from the opening sentence. In this essay the opening line was, "As I was walking home one night..." Her essay  went a totally different way that's unusual. She talked about her mother had an accident, landed in hospital and she visited her. She said she saw The Reaper, the forebearer of death standing by the corner waiting for the time to bring her mother home. "I talked to the Reaper and the Reaper invited me to join him and he told me death is good." Denise wrote.

That was in April 2014. After the funeral, I spoke with her mother and she told me that she was into reading books related vampire, spirit and occult. She loved to watch horror movies too.

What triggered me to search was when I heard a Christian commented that those who commited suicide will go to hell. I was disturbed and not angry at such a comment and in my mind, "Is it really true?" That's when I started my research.

I approached it carefully knowing that i am not the expert and suicide is an intricate subject.I adopted the medical, psychological, theological, philosophical and cultural context approach. Read a number of books on death and suicide and I discovered that it is not easy for us to commit suicide.

You and I are built with three failsafe devices to prevent us from commiting suicide.

The first fail safe prevention is that ' We are born with eternity in our hearts'. In short we are all born to seek eternity , to live longer, looks prettier and younger. Even the products in the market focus on helping individuals look young, feel young and be young again.

For one to commit suicide he/she must break this first failsafe.

In the book of Ecclesiastes 3:11 the wise king Solomon says, ".....he(God) has put eternity into man's heart....."

Even if one do not believe in God agrees that they wanted to live longer and will not just choose to die.

The second failsafe is that " We are born with moral law in hearts'. We actually knew what is right. We are born with a moral compass.

It does not matter where we are from, we all instinctively knew what is right and wrong. We somehow knew that killing ourselves is not right. We knew killing others is not right, we knew killing ourselves is not right, we knew that taking bribe is wrong. We somehow knew. In Jeremiah 31:33 states that God made a new covenant where he implanted his law into man's heart.

The final failsafe prevention is 'Pain'.

We all hate pain, we disliked the discomfort that pain gave us, yet in my research i understand this not from a medical stand point but from a philosophical one. Pain is a double edge sword, it is something we do not like but it is the failsafe device that kept us. We see fire , we move away from the heat. We are extra careful with knifes so that we do not cut ourselves accidentally. We have five senses to help us navigate through traffic jams.

Therefore for someone to actually decided to commit suicide he/she must suffer a momentary insanity. To break the three failsafe devices one has to be crazy for that moment to leap off a twenty storeys building.

The challenge for us that this momentary insanity crosses many people's mind daily. it has even crossed my mind sometimes when I struggle with my life working long hours, paying bills , school fees, supporting my late parents , kid decided not to study, wife angry with you for reasons sometimes you do not know. I had moments where i felt alone in this world, alone at work, alone at home. I had moments where i wonder what the 'bloody ' heck am I working so hard for when the world gave me nothing but troubles, worries, being scolded, being blamed. Even the state of the the country affairs and our bleak future especially when age is catching up with me and that the Government basically doing nothing constructive to provide for the aged. The pain that i sometimes get with my gout and the after exercise nagging pain. All these take a toll on me.

These had caused me to entertain the thought 'Death isn't so bad' idea.

I am not having such thoughts now. What I am saying is I don't think I am alone in this. Having such suicidal thoughts occasionally. Entertaining the idea of death is good.

Good thing is that I am generally a happy person, which helps and there are two powerful tools that helped me to snapped out of such thoughts.

The first tool is that I have a purpose in life, which is to help as many people as I can. I know that I am not here to live a life for myself but for others.

The other is my passion for comedy, through my comedy I transferred my worries and fear and anger onto the paper and then to the stage and look at worries, anger and fear with a new lense of humour.

If you had suicidal thoughts, take a breather, you are probably having a momentary insanity, which like fart shall pass. Just hold your breathe long enough.

May you find peace amidst your storm.

UNCLE: I DON'T WANT TO GO HOME.

Festivals in Malaysia are aplenty. Chinese New Year, Hari Raya, Deepavali, Christmas and the list goes on. These are also moments we like to go home to be with our family.

At the care centre we encouraged family members to bring their parents home, to see old friends perhaps even for the last time. Not being morbid here, just candid. For the elderly every meet  could be the last time one is seeing their relatives, children, friends, brothers and sisters. 

But many old folks just don't like to go home, they like to stay in the centre. I asked them why don't they want to go home. They gave me various reasons, like:

"I don't want to trouble my children to take care of me."

or

"I don't want to follow them to visit relatives, so troublesome."

or

"Too many people in the house."

The last one got me thinking and over time I analysed the reasons for, " Too many people in the house."

Here are some of the reasons why old people like to remain in our assisted living centre for CNY: In fact they don't want to meet any people or relatives because:

1. THEY MEET PEOPLE WHO ASK QUESTION THAT MAKE THEM FEEL STUPID

People who claim to be the relatives always asked the elderly folks "You remember me?" or "You recognise me or not?"

Of course he/she cannot remember you, you have gone from fat to ugly. I mean seriously they only see you once a year or less.

It is really painful for them and even embarassing  when they honestly cannot remember their relatives or loved ones. Please do not subject them to such torture.

2. THEY MEET PEOPLE WITH DEMENTIA

One question that makes the person who ask looks demented is, "Uncle/Aunty do you know who am I?"

Hello if you do not know who you are check your own IC la, don't ask an elderly confused uncle.
'Remember' is a swear word for an elderly. It falls under the category of expletives because the elderly do feel offended somewhat as they struggled to search their distorted internal drive.

3. THEY HAVE TO ANSWER A QUIZ QUESTION ABOUT THE RELATIONSHIP.

There are relatives who tells the elderly folks, "Hi uncle i am your second brother's wife's cousin who is married to aunty Ming next door who is now living in UK. And you use to buy me the five cents coconut sweets." And then you expect the old folk to remember your name and who you are.

4. THEY HAVE TO DEAL WITH THIS 20 TIMES A DAY FOR 3 DAYS OF CNY.

People think such quiz and questions are helpful for the old folks brain, no , it only confuse matter further. In fact the elderly feels embarrassed for forgetting something which, they think is so important.

Therefore, when you meet your elderly uncles and aunts and  if you see any elderly  in your family just give a big smile, a big hug, speak happily and tell your name and if he/she remembers great, if not move on.

Don't frustrate an old folk. 

PITIFUL FAMILY MEMBERS

Being in the elderly care industry for 20 years helps me to realise that the hardest people to work with are the family members, their spouses, children , relatives and so on.

There are many dynamics to their behaviours and the hassle some of them gave the care organisations and the staff.

As carers, we get blamed for injuries, bedsores, bruises, sickness and general decline of the elderlies health. We get accused quite often for being incompetent, being called stupid. Accused of stealing. Get scolding for occasional missing medication or wrong timing. Being scolded for giving the food which the family members decreed out of bound for their loved ones.

And you know what, it is ok with me and the carers because we knew one thing that the family members don't, even though they think they knew.

We know why the family members get anxious and why they behave the way they did.

There are many reasons:

1. They wanted us to do what they wanted to do. This is a case of expectations. Many family members have a mental image of what kind of care and how their loved ones are to be cared.

2. They want things to happen now. Which of course very often it does not happen that way, so they get frustrated.

3. Most are taught and educated with how problems should be solved, cause and effect. This problem this solution. But reality with elderly and care is not a straight line. This leads to frustration.

4. Their ego dented with the knowledge that with all their wealth, intelligence and knowledge they need to let a much lower qualified, lower salary individuals to care for their mother. Afterall in this society , wealth, big cars and house equals ability and success. And with all those success they cannot care for their parents.

These family members and children are the most pitiful and in need of compassion.

For the readers of this post please do not judge them but pray for them. They do live their parents or spouse.

For caregivers, please continue to love and uphold the family members, they need the care and love too.

The only way to reduce their anxieties is to be the best caregivers we can be . One who understand the elderlies, one who also understand the dynamics of family members.

May the peace of the good Lord be with us all.

UNDERSTAND THE BUSINESS OF HOME CARE, INDEPENDENT LIVING CENTRES, ASSISTED LIVING CENTRES, DEMENTIA CARE AND DAYCARE.

Somtime in January 2020 someone I knew came quietly with the intention to study and explore the possibility of opening an assisted living centre. I knew her purpose and i knew she came from a very renown private hospital. They have home care. And as usual because they have so many staff, money, resources and what not they are exploring.

But I can tell you that going into elderly care is a total different animal, one must understand ageing, they must understand what business it is and why it is not a business for the faint hearted. It is harder than a hospital in some ways.

Point blank is that home care structure and business is different from that of daycare. and day care is very different from assisted living centre and independent living centre is different from assisted living centre.

There are people who wants to build a 3 stage retirement village from independent to , dependent to high dependent. This tells me that they don't understand ageing in Malaysia. They learned from overseas experience which if Australia is a bacon and eggs culture, if japan it is a sushi and sake culture but in Malaysia we are capati, wan ton mee, nasi lemak culture. We are different.

There is not short cut to cut and paste any model into your business. I don't like to call age care a business because then the elderlies are just consumers and we are selling a product. And people go into all these high fly marketing and branding which in operational reality means nuts.

I like to start debunking the difference of each of the above care needs.

Home Care - almost 100% of people do not like to age in a centre, and home is the preferred choice. I strongly suggest that people stay at home, because they deteriorate slower. Because their home has the smell, feel, touch and familiarity that reminds us of who we are and where we are.

But home care can be expensive and sometimes the family members saw that the home care does very little, only 20% to 30% of their time are actually caring for the elderly. Ad you have a stranger in your house.

Assisted Living Centre - This can be high care or just assistance for those with mental, medical and physical needs. it is generally more economical than home care, but it has its limitation. The place is not familiar and they elderly lose control and ownership and the sense of belonging.

Independent Living - is well really not necessary a retirement village which i am against, for now. it could be anywhere, you don't need to pay a bomb. It could be just your own current house.

Daycare is a different business all together, the client are usually mobile who just need company for the day, very much like a children's day care, full of activities for 8 hours or so.

Dementia care- this is a totally different from all the above, you need to have trained and competent staff to manage the elderly and the right systems and SOPs to deal with situations like ramming their head against the wall, climbing the fence and what not.

The differences in all the above care models are:

1. Staff with right abilities

2. Target clients differs.

3. SOPs differs

4. Operational models differs.

5. Cost of investment and equipments differs.

Back to the opening story of a friend from a big corporation looking at investing into elderly care my advise for her was, "Your organisation needs a major mind shift" The reason being that big organisation are always out there to make the big bucks, their lingo is always let us corner the market. But elderly care is not something where we approach the usual corporate all guns blazing method. Elderly care is about the conditions of the hearts and not just the mind.

If this article has helped you in anyway, please share it.

PATIENCE, PATIENCE, PATIENCE

I never thought that God will use my son and my mother to teach me patience.( I talk about my mother in the next posting)

Patience is not a commodity nor aptitude that I possess in any quantity. I was impatient, rash and reactive. The kind of attributes not required in elderly care. I believe God in his humor put me in a situation that I had to learn patience.

When my son was born in 1997, I learned one thing from his birth and growth, that is to be patient for he will grow.  Let me tell his story and my journey.

My son was born prematurely, and nothing prepared me to deal with his kind of birth and his growth from baby to adulthood. No books, no manuals, no nothing. Only experienced anecdotes from relatives, parents and anybody who had a baby before. Even friends who were not married came to give us advise saying, “I heard from this friend of mine who had a similar situation, and this is what they did.”

I got it from my gynecologist, well, my wife’s gynecologist that my son will be born on 15 May 1997, estimated of course. I got it all worked out by working backwards from May 15 until my wife developed PIH, pregnancy induced hypertension. I was thinking how can this be, her blood pressure was always low, but it did happen and her BP shot all the way up to 200 over 140, if it that’s the speed of my Proton Wira 1.3  I will be happy, but it is not. Dr Sheila, the gynecologist wrote a letter to University Hospital for immediate operation. I was s worried because this situation was not in my perfect plan of how my son should exit from my wife, it should be on the date stated of 15 May 1997. In fact, I was so worried that I do not know what to worry because I have no clue what to worry. Still he came and on 28 March 1997, my son was born.

 When he was a few months old, the babysitter could just leave him in front of the tv and he will not crawl. He just doesn’t crawl. He does not do anything a so call normal baby does, at least those I knew from friends. When he was two years old my wife and I noticed that he could sit in front of a tv forever. Once we gave him his favourite toy. He sat and played with it but when the toy fell from his hands and went out of his reach by a couple of inches, he just will not go and fetch it, that is unusual. In my heart I thought finish lah( A Malaysian expression). Something must be wrong with him, but I chose to stay calm and prayed for the best. Anyway, that is the most I can do besides any medical testing and he seems to be normal.

By preschool all the teachers’ complaint that he was too quiet and does not speak in school. When we asked him who was his best friend, he does not know any except the same boy who grew up with him with the baby sitter. By standard four his results were not something to shout about and I told my wife, we better get ready money to send him vocational school. My late father in law who loved this grandson of his very much, was a teacher also gave up teaching him. Then in standard five his results picked up and he even got 4 As for UPSR. Now he would not stop talking.

I know now that I just need to be patient and be there to watch. For my son will grow and I am sure yours will too. No magic formula just be patient. Now he is young man University, but that’s not the end, in 2019, just a year before he completes his degree, he called and told me,” Dad, I want to stop studying.” I do not need to tell you how I felt, but I was prepared for that day in 2019, because I knew my son well. I also knew that not all are meant to be top notch academics. I console myself saying even Lim Goh Tong the founder of Genting does not have a degree and Bill Gates did not graduate. I told him it is okay; you have to decide for yourself.

Most important for me is that my son returns home safe and sound, which I am thankful to God.

So how does this relate to caring for aged? Well, my son is now being trained as an administrator and caregiver in the centre which I started for Harvest Christian Assembly in Klang, called D’Home. The person whom I mentored to manage the place and the nurse whom I have recruited to help is now mentoring and teaching my son.

What did I learn from this? I learned that all things that we do today has value in the future. What ever entrusted to us to do and if we do well will comes back to us in a positive way. 

So, whatever that is not right today with your family, friends and things around, it is only part of larger picture and endgame shall be revealed in good time. Stay Patient.

MY SON TODAY

KEVIN, MY WONDERFUL CARING FRIEND

On 25 March 2020 I had a long chat with an ex colleague from Reliance. A wonderful caring guy who was ever so helpful. Let just call him Kevin.

It started with a whatsapp message, “You free to chat?” I said yeah. Actually, with the lock down I was pretty relax and chill. He told me that he has this idea to start food truck and hire special people with Down Syndrome and train them to work and be self-supporting.  

I told him, that is a great idea, not the food truck or self-supporting part, but very important was that he saw a problem and then decided to step out to help. And that makes my heart glad. He wanted my thoughts on how to start. He told me how he can help by setting up the truck and getting his cycling ‘kakis’ to be part of it.

I told him that I don’t know much about down syndrome. The first thing is to recognize that care for different community takes on a different mind and skills set. In the care community there are several core groups which the welfare department had identified. They are women with issues, special needs, orang kurang upaya/disabled and elderly care. And in each category, they have sub categories.

For example, in special needs we can sub categorize them to autistic, down syndrome and spastic just to name a few. And in disabled you will have the physical disability like wheelchair bound and visually challenged. In women we have the abused women, single mother and unwanted pregnancy. In elderly care we have the medical care, dementia care and assisted living only. Now there are even more but very often centres cross served multiple sectors of care due to dire needs and lack of resources to serve all sectors individually.

I shared with Kevin that, very often caring is not just about passion, it is a calling and some are called to be very specific like me, in elderly care. Before we can help anyone in any sector, we want to serve in we must do the following 3 things.

First, we must understand the down syndrome and its varying spectrum. We must learn the behavior the conditions and understand it as if you are one of them.

Next, is that we must ask the most important question, “Do they the down syndrome needs help?” Most of us will answer yes they do need help. But ask this one more question, “Do you think the person with down syndrome knows he/she needs help or even wants help?”

 Finally start to understand them, go through them as a human being, ask simple questions like, “What makes them happy?”, “What makes them laugh?”, “What does he/she likes to eat?”, “What does he/she likes to do?” Learn to understand their expressions, each one will have different expressions expressing he same thing.

In any care community, there is a person under that skin, that look, that condition. There is that person that we need to know and understand. Perhaps then we will see ‘help’ very differently. We may not look at the special people as someone who need help. Perhaps through them we can see that we are the one who needed help more than them. Perhaps through these people we can truly see who we are. Through our reactions to the sufferings of others, truly then will we see ourselves. Perhaps these special people are the mirror to our soul, the empty void that our achievements can never bring. The deep dark hole that crave filling and fulfilling and even fulfilment.

Remember, before we can help others let see what help we need too.

To all you lovely people of bangsa Malaysia, who love and care for these people, may your life be the light and beacon of both their life and yours too.

And to my good friend Kevin may you be the light for others.