Parkinson’s

I first noticed mom’s disease when Lucas was still a baby. We were in Sydney downtown walking. Mom would suddenly stopped and told us she can’t move.

Time forward, Lucas is now 9 years old. Mom with the help of duodopa pump, is still mobile.

February 23 2020
Brother asked me to start journalling my experience of my care for mom. Mom has a tube thru her tummy. Pump dispenses duodopa meds into her intestine to help mom move.

My day starts early. At 6am, mom’s pump change from night to day. Empty cartridge replenished and batteries checked. Of course, mom can also perform these tasks, but she likes it when i help her out. Changing batteries is a few minutes task but for mom, if she does it herself, it will take much longer. The skin around the tube is raw as pus keeps oozing out of the hole.

Breakfast includes sunny side up, avocado, fresh fruits and toasts with cheese. Nutritional supplement like ensure as breakfast drink.

Breakfast
Noodles

The first few months living with mom was spent cleaning and sorting. Moldy weavel infested, expired foods binned. Roaches exterminated.

Now, chores has became extremely easy. Daily routine includes scrubbing toilet, vacuuming and mopping the floor. Smelly diapers and rubbish binned.

Mom likes to look pretty. My recent attempt was trimming and applying natural henna for mom’s hair. Toe nails was a bit of a challenge to trim because it was very thick. Nail polish was difficult as well as she can’t stay still.

Mom’s pump is extremely heavy for her frail body to lug around 24/7. Leafy vegetable coils around the tube. Photos from mom’s recent surgery to remove bezoar.

☝️this actually not the correct way to dress the wound
Jane from westmead hospital showed us the correct method

November 18 2019 mom and i had a Parkinson’s dance date at Pennant Hills community center.

Parkinson’s dance

My brother said every story needs a beginning and a “never” ending.   So here goes my adventure of caring for my mom.   Mom just celebrated her 80th birthday.   Mom was born on Jan 5 1940.  She has always been my grandpa’s favorite daughter. Perhaps she was loved as a child, she was able to nourish each one of us with the same love she received from her father.

Mom is witty and full of stories to share.

Siblings love mom, each in their own way. They have careers and dreams to pursue, else they would spend more time with mom.

Often times, mom is extremely lonely. Mom feels trapped with the Parkinson’s disease. Patience and gentleness are two characteristics that my mom craves in a carer. Mom doesn’t like to feel rush. When food is being served to her, she would not eat until she deliver a full sermon. A few siblings get annoyed when mom does that. Mom shouldn’t compromise her own well being and health like that. Only when mom loves herself can she continue to love others around her.

Today was Parkinson’s dance day but mom didnt want to attend. Mom said she didnt sleep well last night. Mom’s constantly worry for her loved ones. Mom said, “dont hate anyone, Ping”. i assured mom, “i dont mom😊”

Monday February 24 2020

Mom’s been married to pa for 50 years.  Mom knows pa inside and out.  She knows exactly what he will do even with her eyes closed.

Tuesday February 25 2020

Tuesday February 25 2020

Pa was all ready to go out early this morning. His words to me was, “take care of your mom, ping”.

How does one care for a wounded person, both physically and emotionally??

Mom cried again this morning. Dont think anything i can say or do can take away her sadness.

Why did pa go on a holiday without mom when mom was 7 months pregnant with me??

Dont think pa ever done that again in the next 50 years, but he sure hear mom complained about that, again and again.  Mom often repeats like a broken record when her feelings are hurt.

One of mom’s favorite tv show is “you are the one”. Matching couples with the help of the host and parents, relatives, friends and audience.

Mom’s wedding photo

What constitutes a happy and fulfilling marriage? Mom and dad been married for over 50 years.

Bible says, love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.

Well, both mom and dad still insists on their own way.  Mom likes the pillows on her bed to be arranged a certain way.  The chair in the bathroom be placed next to the commode to assist her in getting up. Trash bag be filled to the brim before binning…

dinner at chef’s gallery

Photo with neighbour Jenny during an evening stroll
Alaska trip – photo captured more than a decade ago
2020 CNY celebration
November 18 2019
2019 at westmead hospital
2019 at westmead hospital