Losing Mum To Dementia: Daughter Talks Of Giving Care, Giving Back & Acceptance

“Dementia is the major cause of disability among older persons and the leading physical and psychological sequelae for both the person living with dementia and their caregivers,” says a 2020 study on dementia in Malaysia. What is dementia? It is an umbrella term for a degenerative, terminal brain syndrome that affects one’s ability to remember, think, problem-solve, reason, make decisions and carry out activities necessary for daily living. Though not thought of as a 'disease', dementia is, nevertheless, an irreversible, fatal disease that eventually stops brain function. In Malaysia, some 8.5% among those over the age of 60 have dementia. The projection is that the country will see 261,000 people with dementia by 2030 and 590,000 by 2050. Malaysia currently ranks No: 27 in the World Alzheimer’s and Dementia Death Rankings with 36.38 dementia deaths per 100,000. Turkey is No: 1 with the highest rate of dementia at 57.64, and Singapore the lowest with 0.38. Dementia and Women Dementia affects more women than men by a ratio of 2:1. Brain cells die faster in women and research has shown that it could be due to a lack of oestrogen post menopause. Another risk factor is traced to the level of education. The lower the education, the higher the risk, and this is possibly due to a lack of mental stimulation in life, particularly after retirement. In other words, those who kept their minds (and bodies) active, especially during old age, were less likely to develop dementia. 7 Types of Dementia Generally, there are 7 types of dementia, according to WebMD: Alzheimer's Disease (60% to 80% of all dementia cases is due to Alzheimer’s Disease. Women are ⅔ times more prone to Alzheimer’s than other types of dementia) Vascular Dementia (caused by an impaired blood supply to the brain due to heart disease or strokes) Lewy Body Dementia (Robin Williams had Lewy Body Dementia and his suicide was a result of this) Parkinson's Disease Dementia Mixed Dementia Frontotemporal Dementia (affects the front and sides of the brain causing dramatic changes to behaviour) Huntington's Disease (a hereditary, neurodegenerative disease) Creutzfeldt-Jakob Disease (CJD is a rapidly progressive, fatal brain disorder caused by an abnormal, infectious prion protein in the brain. Variant CJD (vCJD) is the human version of Mad Cow Disease, likely to be caused by consuming meat from an infected cow) Yet, in spite of its growing prevalence, dementia is hardly spoken of in Malaysia or discussed openly enough to create awareness—which is perhaps why this story of Yvonne Lee—a mum whose mum has dementia—is a timely wake-up call for anyone who has older loved ones in the family. 1. Please introduce yourself and your mum. From left: Yvonne and her sister Janet are both caregivers to their mum (Right). Yvonne: I’m Yvonne Lee, a mum of three grown children, a wife, a music teacher and also a caregiver together with my sister Janet to our mum who has vascular dementia. We also have our brother, Peter, who lives in Singapore but because he cannot be here physically due to the pandemic, he offers his moral support through phone and video calls. Note: Yvonne is also an author. She wrote the bestseller 'The Sky Is Crazy' more than a decade ago about her previous airline working experience. She also had a column in Parenthood magazine for two years. 2.When did you discover your mum had dementia? How do you know it’s vascular dementia? Lai Yee Moi, 74, was diagnosed with vascular dementia just last year but the disease has progressed so fast, she is in the mid to severe stage now. Yvonne: I started noticing that mum was showing behavioural changes like moodiness, extreme anxiety, always imagining she had fever, her fixation over death or being diagnosed with strange illnesses and of course her short term forgetfulness. Initially, I had assumed it was just an old age occurrence. Slowly, she also didn’t like to travel to visit us anymore as she became more withdrawn. She had a small circle of close friends in Taiping and they also noticed her forgetfulness and being tired to get out of home. One big change I noticed when she was staying with me during a short visit was that she had trouble performing simple chores like folding our clean laundry and reheating simple meals. She repetitively rummaged through her personal belongings when in my house and she also liked to tear up tissue papers and accumulate the pieces in a corner. She was restless. Her other symptoms were her constant worries on small things, her inability to make a decision like going out, or planning her day routines. She sensed something was changing in her mind. She found it hard to recall short term memories, so she asked repetitively. At the same time, she was unable to control her emotions which could range from weeping to anger. I finally managed to get an appointment for her to see a geriatrician in UMSC hospital in March 2020, where she went through a CAT scan, blood tests and various cognitive tests before she was diagnosed with moderate vascular dementia and was prescribed with the dementia medication Ebixa. 3. Can you briefly explain Vascular Dementia? Dementia takes away motor skills and mobility. Mum doing leg exercises to strengthen her limbs and coordinate movement. Yvonne: Vascular dementia is a form of irreversible brain degeneration, caused largely by accumulated minor strokes in the brain which affects the memory, reasoning, decision-making and controlling emotions. As the trajectory of the disease progresses, it also affects one’s mobility and hampers the ability to care for oneself. In the moderate to severe stage like where mum is currently at, she needs someone to bathe her, help her dress and undress, assist in feeding as she has slowly lost those basic care abilities. "Dementia is a terminal disease, so our time together in creating memories through activities is also limited. Before our mother loses her ability to recognise us and before she loses her speech, we try to make videos of the things we can do together." 4. Did you take up a certification course? What course was this and why did you take it? https://www.youtube.com/watch?vljE7tIeiLAc Yvonne: After mum was diagnosed with dementia, we relocated her and dad to live in the city with us. At first we were at a loss on how to manage her condition or cope with her paranoia and her anxiety-ridden behaviour which can be very draining on the caregiver. So I started to do online research about dementia and was then introduced to support groups and free online courses. I had joined virtual workshops on being a caregiver that was organised by the Alzheimer’s Disease Foundation Malaysia, (ADFM) and I further went on to complete three online certificate courses on preventing dementia hosted by the University of Tasmania. These workshops and short courses had enriched my understanding of dementia. The impact of it not only devastates the person suffering from it but also the immediate family members. Unlike diseases which exhibit obvious symptoms that can warrant immediate attention (i.e. heart attack, diabetes, stroke or cancer), dementia is insidious in its early stage and is often mistaken as just signs of old age. As such it is not easy to get early intervention until it becomes severe. That was also our mistake. This is why I feel it is important to create awareness on dementia so that we can understand how to prevent it. If a loved one has been diagnosed with the disease, we need to know ways to prolong their remaining abilities and not magnify on their limitations. Dementia is a terminal disease, so our time together in creating memories through activities is also limited. Before our mother loses her ability to recognise us and before she loses her speech, we try to make videos of the things we can do together. I’m grateful that my singer sister Janet has been instrumental in capturing those special moments through singing and dancing with mum and recording them. We all have to accept that eventually, our mum will lose her basic functions like walking, bathing, expressing herself and even the ability to swallow food. That is why time is of essence to create special moments with her and dad. 5. In layman’s terms, could you explain what you understand of a dementia person’s reality? https://www.youtube.com/watch?vTR7UaMBaoY0 Yvonne: In mum’s reality, her judgment of day or time span is not reliable anymore. She’s lost track of how long it has been since she moved to the city. She has a fixation with how long ago she last had a bowel movement as she cannot recall when she passed motion. So my dad needed to show her the Chinese calendar where he would circle the date that she had her bowel movement, in order to allay her anxiety. She also had confusions on what she imagined her friend had said about her from their telephone conversation. Often she would find herself stuck in mid-sentence and unsure of what to say next. Many times we have had to create white lies, with the sole purpose of pacifying her. I learnt not to argue against her 'reality', not to correct her even though I knew she was wrong, but just to play along with her 'reality' to comfort her because of her increased confusion. "This is why I feel it is important to create awareness on dementia so that we can understand how to prevent it. If a loved one has been diagnosed with the disease, we need to know ways to prolong their remaining abilities and not magnify their limitations." 6. What kind of nursing, caregiving or community support services are there locally? Mum carrying out activities such as colouring at the centre. Yvonne: In Malaysia, as far as I know, there are only two certified centres which specifically caters for the Alzheimer’s or dementia community. Both are day care centres and are excellent respite for us caregivers. Alzheimer’s Disease Foundation Malaysia day care centre in Petaling Jaya is a centre which opens from 8am to 5pm daily (except weekends) that my mum used to attend. There, a team of trained caregivers would engage them with activities like simple physical exercise, singing, colouring and board games. Another place I had heard of is Genting Dementia care centre in Segambut which opened in 2019. 7. What type of medication is there for a person with dementia? https://www.youtube.com/watch?vGPVMmj0IC9E Yvonne: I understand that there are two schools of thoughts when it comes to medicating dementia patients. After the diagnosis, depending on each patient’s condition, the doctor would usually prescribe Aricept, Ebixa or Mementor, which are supposed to slow down their deterioration but these medicines cannot cure dementia, only slow it down if it’s still in the early or midstage. Currently there is no proven medication that can reverse dementia. However, there is also another school of thought that doesn’t believe in drugs but opting for a more holistic way through taking wholesome food, supplement for brain like MCT oil, fish oil, gingko biloba, lion’s mane mushroom supplement, plenty of exercise, sun shine, memory games and activities to stimulate the mind and to improve the mood. For me, I can accept that there will be a point when even her dementia medication which she’s taking, cannot stop her from slipping into the end stage of dementia. She will eventually stop medication and we just need to do our best to make her comfortable. So for now, the caregivers must have abundant patience in assisting her deteriorated motor skills, answer her endless queries and be able to distract her from her meltdown by engaging her in cherished activities. So basically it’s like returning to one’s childhood. We mothers need plenty of patience when attending to our small children. Likewise, when handling a dementia elderly parent. 8. Are there activities you could do with people with dementia? https://www.youtube.com/watch?vRMim7gkTHr0 Yvonne: When my mum was initially diagnosed, it was also the start of the pandemic. We were all unable to work, but it was a blessing in disguise. We had so much time, we did our best to engage her mentally, which saw us making short videos with mum doing simple physical exercise, singing, dancing and even learning the keyboard and picking up a new tune! She could be coaxed to even help me to prepare vegetables before I cooked. I learnt that in the moderate dementia stage, she already lost the ability to initiate things, or decide on what next to do. She constantly needs someone to tell her what to do next and even to show how to do it and she would imitate. This is a sad and humbling reality. We know of people who used to hold high positions, were go-getters or had an amazing ability to multi task but after being struck with dementia, they became like children who needed to be engaged with or to be told what to do next. This is the harsh fact. 9. How have the symptoms changed over time? How are you and your father coping? Yvonne and Janet’s Dad and Mum. It hasn't been easy for their father. Yvonne: Currently, as her motor skills deteriorate, she needs help in getting dressed, bathing, going to the toilet if it’s a new place, and her walking is very unsteady. Mentally, she finds it hard to express herself and often is not able to find the words she wants to say. She’s also indecisive and hence, many decisions like what to wear or eat have to be made for her. She cannot remember how to turn on the tap to wash her hands. My dad has all along been her companion and caregiver in attending to these small yet important tasks. My dad is like her crutches as her motor-skills worsen. Dad patiently uses scissors to cut her noodles and food so that she can manage it easier with a spoon. Dad has also been the handy man to draw signs and labels on home fixtures like lights, taps, doors, to enable mum to recognise how to turn on the tap, the light, and which door leads to where. It can be distressing to see your spouse who was once able-bodied slowly deteriorate to being almost like a helpless child. However, as our dad is also getting on with age, being 81, and as mum’s physical and cognitive abilities continue to deteriorate, it’s been getting increasingly tough to cope with day to day life. We daughters too are now getting back to work, so we all agreed on moving my mum to an assisted living centre where she can be taken care of and engaged with fully, and our dad is accompanying mum to adapt to this new stage of life. Even though they now live in an assisted living centre, Yvonne and Janet make sure they take mum and dad out at least once a week. Picture shows mum and dad having dinner at Yvonne’s house during their weekly outing. 10. Is there more insight you could share with others so that they may know more about dementia? https://www.youtube.com/watch?vGJu1GvZ6D-w Yvonne: Generally, awareness on dementia is still lacking but many have tried to spread the awareness through talks, sponsored programmes, support groups and workshops for caregivers. I wouldn’t know about all of these if I didn’t have a family member who is diagnosed with it. Because of mum’s condition, I learnt so much about dementia. I want to emphasise that there are many lifestyle practises we can actually implement in our daily life to prevent dementia. For example, to have a healthy vascular health, keeping our cholesterol level, sugar level and blood pressure in check, plenty of regular exercises, a diet rich in omega, protein and fruits for brain health, have many friends and interests, lead an active lifestyle away from isolation. It’s also very important to always learn new things no matter what our age. These are just some of the ways to slow down our cognitive decline, which is inevitable as we age. “We all have to accept that eventually, our mum will lose her basic functions like walking, bathing, expressing herself and even the ability to swallow food. That is why time is of essence to create special moments with her and dad.” 11. Finally, what are your thoughts about being caught in the vortex of this devastating disease? A mother and daughter picture for posterity ─ Mum and Yvonne Yvonne: Life is very unpredictable. Old age and disease are part and parcel of life, as we know it but when your own family member actually has it, initially it was like the sky has fallen! You scramble to get a footing on how to cope with the condition. Eventually, you will learn the ropes and be able to find help and information to cope. You will come out of it being more enlightened, aware and perhaps, be the person who can also help others who are in the same situation you once were in before. You become the mentor to guide the others who also thought the sky had fallen in their lives. Because of my mum’s condition, I’m learning from dementia courses so as to equip myself to be a professional caregiver in future, so that what I learnt from serving my mum doesn’t go to waste. I also hope it is my calling to discover my skill and passion in creating a better quality life to the dementia community. Being of Catholic faith, I accept that God has presented us with a situation for a reason. We are all coming out of this feeling more closely knitted than ever as we were never close as family members before. This dementia gave us the chance to serve our mum to the best of our abilities. There may be some imperfections, some hiccups, but only God and our parents know we gave our best. All Images and Videos Courtesy of Yvonne and Janet Lee “We remember their love even when they can no longer remember.” For more informative, relevant, real life stories like this, always turn to Motherhood.com.my.

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