WHEN MEMORIES FADE....

People with dementia will ask the same questions over and over again, forget where they keep things and accuse you of stealing their possessions, shares Fu, who cared for her late mother who was diagnosed with Alzheimer's Disease more than a decade ago. - DANIE FRANCO/Unsplash

Out of curiosity I once asked some doctors which disease they dreaded most when they reached old age. Their answer surprised me. I was expecting them to say “cancer” or “stroke”. Instead, it was Alzheimer’s Disease, AD for short.

To understand the reason for their answer, let me share my 10-year journey caring for my mother who was diagnosed with AD in July 2011. By the way, September 21 is World Alzheimer’s Day. This makes my sharing timely.

Those who have been on this AD journey know it is a journey marked by challenges, frustrations and pain. But there are also moments of joy, celebrations and breakthroughs that keep carers going.

I was totally ignorant about AD back in 2011. Mom had shown early signs of memory loss, but like most people, I viewed her forgetfulness as part and parcel of natural ageing. Until she fell and fractured her right hip. The incident turned my life upside down.

I went from being completely clueless about AD to learning everything I could about it. With my mum as my travel companion and care partner, we covered the whole continuum of care: From home care to daycare to residential care and finally to nursing home care.

Initially it was just forgetting dates, names and places. Then she started forgetting to close the front door when going out, or turn off the gas after cooking. Her forgetfulness was becoming increasingly more serious. She was also getting more argumentative, irrational and even aggressive. It made me wonder perhaps I was adopting the wrong approach in responding to her actions.

Her second fall four years later in July 2015 worsened her condition. This time she fractured her left femur and had to have surgery to insert a device called “proximal femoral nail anti-rotation” or PFNA.

Understandably, she developed a phobia of falling again. She adamantly refused physiotherapy after she was discharged from hospital.

Her leg muscles eventually grew so weak she never walked again. She became wheelchair-bound.

Over the years as the disease advanced, she gradually became a shadow of her former self. In her final years, she wasn’t able to eat or speak.

She could only make sounds, having forgotten the words to articulate. She didn’t know who I was or even who she was.

Fu celebrating her mum's 92nd birthday. She passed on at age 95 in 2021. - LILY FU

Learning about Alzheimer’s

In my determination to learn how to look after my mum better, and understand her needs, I enrolled for a full-time Master of Science in Applied Gerontology at Nanyang Technological University (NTU) in Singapore.

It would help me understand the science of ageing and be in an informed position to help others face the challenges of growing old.

One of the electives I took was Mental Health. I learned that dementia was an umbrella term for several mental illnesses such as Lewy Body Dementia, Vascular Dementia, Parkinson’s Disease Dementia and Alzheimer’s Disease, depending on which part of the brain was affected.

I also learned that AD can be hereditary if a parent or a sibling has the APOE gene that causes AD. That put me at risk. My great grandma probably had it, based on what I now know about AD.

So did at least two of my aunts. And now my mum. All women. AD affects women more than men. Another risk factor.

Here’s a third risk. Blows to the head that cause traumatic brain injury may also result in a higher risk of dementia later in life.

I have had three major head injuries – on my forehead when I was six years old, at the back of my head when I was knocked down and fell backwards on the road, and the most recent in July this year at the right side of my head when I tripped and hit my head against the side of the table. Fortunately, although all three required stitches, there was no fracture or internal bleeding.

But the risk of developing dementia later in life is always there. Rather than allow fear and anxiety take over my life, I prefer to not think about it and instead, focus on the positives. I still have my mental faculties intact. I continue to read, write and give talks. I keep myself physically and mentally active, and socially engaged.

Our brain cells are capable of neuroplasticity and neurogenesis if we keep exercising them through lifelong learning and mental stimulation.

Caring for persons with dementia

It requires endless patience, resilience and energy to keep up with the person with dementia’s constant needs and demands.

Emotional or psychological abuse is common among sole caregivers. There is no rest as you are on duty 24/7 at home. There is no one else to relieve you. It is so easy to succumb to stress brought on by fatigue and lack of rest/sleep.

People with dementia will ask the same questions over and over again, forget where they keep things and accuse you of stealing their possessions. You have to keep an eye on them all the time. If they leave the house on their own, they would likely be lost, unable to remember the way home.

Today there is more awareness of AD and how to cope with caregiver burnout.

Alzheimer Disease Foundation Malaysia (ADFM) conducts regular talks and workshops on caregiving, and has set up a strong support group for caregivers. They operate a daycare at their premises in Petaling Jaya and an information centre at Atria Mall.

Dementia daycare and residential care services are now available in most towns. Many aged care centres offer workshops and training on dementia care. The bigger hospitals have designated dementia wards. The Universiti Malaya Medical Centre has a Memory Clinic, and Dr Cecilia Chan is breaking new ground with her fun activities and patient-centred caregiving at the BSC Eldercare Centre in Butterworth.

Alzheimer’s Disease International (ADI) estimates over 10 million new cases of AD each year worldwide.

With Malaysia fast heading towards aged nation status by 2040, we need to be prepared for the rise in dementia cases. The longer life span will mean a longer period of caregiving. We need to equip ourselves with learning as much as we can, not only to look after others with AD, but also to recognise the early signs and know what to do to prevent AD.

Alzheimer’s Association lists these 10 Early Signs of Alzheimer’s.

• Memory loss that disrupts daily life.

• Challenges in planning or solving problems

• Difficulty completing familiar tasks

• Confusion with time or place

• Trouble understanding visual images and spatial relationships

• Problems with words in speaking or writing

• Misplacing things and losing the ability to retrace steps

• Decreased or poor judgment

• Withdrawal from work or social activities

• Changes in mood and personality

There is currently no cure for AD. However, ongoing research points to very encouraging results for a cure in the near future. The best prevention is to adopt an active and healthy lifestyle. Remember not only to exercise our body, but also our brain. Keep learning new things. Challenge ourselves physically and mentally. And for the carers out there, know that you are not alone. There are support groups that you can reach out to.

Lily Fu is a gerontologist who advocates for seniors. She is founder of SeniorsAloud, an online platform for seniors to get connected and enjoy social activities for ageing well.

(The print version was first published on Wed 18 Sept 2024. The online version is accesible at https://www.thestar.com.my/lifestyle/family/2024/09/25/starsilver-when-memories-start-to-fade)

DONT' LET CLUTTER TAKE CONTROL OF YOUR HOME AND YOUR LIFE

If you find it extremely stressful to throw anything of yours away, you may have a hoarding problem. - LUCIA SORRENTINO/Unsplash

‘One man’s treasure is another man’s trash’. How true when it comes to our earthly belongings. Our treasure could be junk to our children. We are from different generations, with different lifestyles and different tastes.

The more stuff we accumulate, the bigger the burden we leave for our children to dispose of when we pass on, as we all will, eventually.

It’s time to start getting rid of things we no longer have any use for. Decluttering makes sense. No need to wait till we are in our twilight years to do so. Decluttering frees up space in our home and keeps it clean and tidy, spick and span.

There is also less risk of tripping and falling when there is less clutter. The home is better ventilated and easier to maintain. It creates a conducive and healthy environment for work and relaxation. With less clutter, we not only think better but also locate items we are looking for more easily.

Indeed, a number of my friends have already started the process. They have hosted garage sales to dispose of stuff they no longer want. Some have gone online to sell their preloved items at a bargain. Others have donated unwanted items to charity or sent them to recycling centres. One even generously gave away her expensive quality furniture on a first-come basis!

As for me, I have a very long way to go before I can honestly give myself a pat on the shoulder and say, ‘Well done! Marie Kondo would be proud of me!’

I have cupboards and boxes full of books, files, photos and numerous Teachers Day gifts accumulated over 35 years of teaching. Then there is my home library of books I have bought over the years, with many still unread and gathering dust and attracting silverfish! A predicament very familiar to retired seniors.

So, declutter I will, and the sooner I get started, the quicker I can enjoy the comfort of an airy, clean and spacious home. Not only does clutter deprive us of space and a tidy home, more importantly, it affects our health. We are at risk of developing respiratory problems from the dust and suffering bites from mites. Minimalism is the way to go for seniors.

I have contacted a few former colleagues who teach English and offered them my collection of textbooks and reference books. I have left several boxes of books with the PJ library. Strangely enough, it wasn’t too painful a decision to part with the books. I felt a sense of relief knowing the books would be in good hands and put to good use.

There were plenty of takers for my prized collection of cassettes and CDs of popular songs from the 1960s-70s. It was painful for me to part with them as some of the songs marked certain poignant moments in my past.

Next up were my clothes. Believe me, I still have clothes from the 1960s, like my Form Five graduation dress which I had designed and persuaded my dear seamstress, Aunt Bertha, to sew for me. I had kept it for nostalgic reasons.

Also, the sexy high-slit, figure-hugging glittering cheongsam that I last wore at my birthday party during my Form Six days at English College, Johor Bahru. I have been preserving these outfits in the hope that I’ll slim down enough to wear them again someday. Fat chance! It is a miracle these outfits have stood the test of time.

Seniors will tell you things from the old days were more durable, unlike today’s products that are not made to last.

A good idea would be to keep clearing your possessions in small batches to avoid hoarding.- LILY FU

Don’t be a hoarder

The sudden urge to clean up my apartment was also a result of seeing some horrific images and videos of hoarders and their homes. Just do a search of hoarders on FB and YouTube, and you’ll be appalled.

Imagine the horror of living in a house where every inch of space from floor to ceiling is filled with junk and garbage, not to mention infested with rats, cockroaches and other unmentionables! This is accumulating stuff to the extreme!

When we don’t declutter and keep on adding more stuff, we are at risk of falling victim to Diogenes Syndrome, also known as senile squalor syndrome. Google the term.

Hoarders are often older adults who live on their own. With no one to stop them from accumulating stuff, and with the whole house to themselves, they start filling up every room with anything they can lay their hands on, in the belief that it will come in handy someday. That day usually never comes, and so the boxes and bags of useless items keep growing. Eventually the whole place becomes a fire threat and a death trap!

After years of hoarding, the hoarder gets so overwhelmed when he looks around him that he doesn’t even know where to begin clearing even if he wants to. So, he gives up and continues to let the junk pile up.

I can understand why some elderly people hoard. They find it hard to throw away things. They have been through the war years in the 1940s when food and basic necessities were in short supply. They have experienced the lean years.

So now they collect anything and everything, from empty containers and plastic bags to used newspapers and magazines. They see every item as being of use some day. When this habit extends to leftover food and perishables, you can imagine the stink it creates, not to mention the flies it attracts. The nightmare is compounded if the hoarder also brings home stray cats and dogs.

So, my spring cleaning has begun. If I wait till the new year, I may never get started. Procrastination is the thief of time. The process will take time, and it will be heart-breaking. Long retired seniors like me have a lifetime of mementos and memories that we hold precious and keep for sentimental reasons: School report cards, baby photos, love letters, diaries, 33 rpm records ... the list goes on.

But there are some items I will never throw out, like my high school essay book containing the compositions I wrote back in 1964 when I was sweet sixteen! Also handmade birthday cards from my children and grandchildren. They will enjoy the memories these cards bring up. These are among the favorite things that I will keep close to my heart.

Here are some tips I can think of on how to avoid cluttering our home. I’ll be the first person to follow my own advice!

• Throw out or donate anything that you haven’t used or worn for the past two years. It may pain you but be firm.

• Avoid buying anything you don’t have any immediate use for. Don’t fall into the trap of thinking “Hmm...this might come in handy one day”.

• Practice sorting things and keeping them in separate compartments. This not only saves space but makes it easier to locate things.

• Regularly go through your fridge and pantry. Check food items for their expiry date. If expired, chuck them out.

• Get rid of the “bargain mentality”. Don’t buy stuff you don’t need just because it’s on offer at a fantastic discount. Keep purchases to a minimum, especially if you are living alone. Don’t be taken in with those “Buy six, Free one”.

• If something is broken, throw it out. Don’t hang on to it in the hope that you will be able to repair it. That may never happen.

Avoid buying items for a future project unless you can commit to it. Examples: buying a sewing machine to sew a baby quilt for your future grandchild; investing in a full set of handyman tools because you plan to be Mr D.I.Y. Home Fix-It, only to discover later that home repairs are best done by a professional!

Who knows where we may live 10, 20 years from now. There may come a day when we have to move to a smaller house. Empty nesters may have to seriously consider downsizing for practical reasons. We may end up moving to our daughter’s house so she could better care for us in our old age. Or we may find ourselves in an aged care home. If any of that happens, imagine all the stuff we will have to dispose of, moving from a 3-room family home to a single room!

It’s never too early or too late to start decluttering. Just do it!

When it comes to the last goodbye, we have to leave all our possessions behind. We came into this world with nothing, and will leave with nothing. The true worth of our lives is measured by our experiences, not our possessions. It is enough if we can say we have left behind a legacy of beautiful memories for our loved ones.

Lily Fu is a gerontologist who advocates for seniors. She is founder of SeniorsAloud, an online platform for seniors to get connected and enjoy social activities for ageing well.

(This article was first oublished in the print edition of The Star on Wed 28 Aug 2024. The online edition can be accessed at the link below)

https://www.thestar.com.my/lifestyle/family/2024/08/30/not-quite-in-plain-sight/