1. How we found out
She usually stays with us for the weekdays and with my aunt for the weekends. However, my house was undergoing renovation, therefore she was sent to my aunt house for a long vacation. After almost 6-8 months, if i ever remember, renovation completed, and my grandma came back to us.
Well, I thought normal routine goes as usual. However, this time was different.
We found out that she kept asking for the same things. Repeatedly telling us things. We thought its normal coz we will also do this occasionally.
However, hers was slightly different. She begin to isolate herself. She doesnt want to do the things she usually do. Eg. going for morning walk, watching her favourite hokkien drama. She doesnt want to take care of herself and slowly lazy to bathe.
2. What are the challenges and how we deal with it.
Challenges – she doesn’t want to bathe, she kept disturbing u even in the wee hours of 3-4 am. She can unlock the door to walk out herself. When you are cooking things, she will purposely open the cover to see what it is when no one is around looking after the things. She will keep finding food to eat as she has forgotten she has eaten. Therefore, telling people that she didnt eat anything. She likes to knock her head on the wall…She felt like something wrong with her at times and claim that she is crazy. So, occasionally, she will have a bump on her forehead.
Huge challenge and dilemma for my dad as a son. Who is willing to send your mom to the old folks? Though we always use this to threaten my grandma so that she will behave herself. Coz she is afraid of this and also listens to my dad. Thank God we have a maid who has been with us for 10 years already. She took care of her like a 2 year old kid.
Ensuring there is always food ready on the table for her to eat and even snacks when my grandma loves to nibble on things each time she walks out of her room to the kitchen. And that interval of walking is every 5 minutes. It takes a lot of patience, endurance and love for my maid to deal with her whole day especially when we are all at work. My maid once told me, if she is a nasty one, she already hit my grandma…but she persevered with silence. My grandma is very mischievous and nasty at times. She loves to disturb my maid, mock my maid, and knock at her room door to wake her up in the wee hours of 5 am. Because of lacking of sleep, my maid needs to take nap. My grandma will still disturb her by pulling her hair so that she will wake up.
3. How has it impacted each of us?
To be honest, I as a grandchild once hated her so much. Because of her, she breaks my family especially my parents’ relationship. My grandma will do things which purposely causes disharmony in the family and that’s when my parents started arguing. My heart breaks into pieces each time. I am known as the most patient girl in my family; still I lost my temper one day that I scolded her. I want to make known to her that she is misbehaving and causing disharmony. After releasing my temper, she scolded me back and forgotten everything. I know it’s the nature of the disease that she forgotten. Hence, its a waste for me to tell her. Nonetheless, I released my temper and cried out. I know its difficult for her as patient to experience such but also family members who are taking care of her is experiencing the same too. What can we do, but just pray and give thanks to God that she still able to handle her sanitary needs, mobility. It’s just her thinking that she kept forgetting. Her health is still perfectly good. No diabetes, cholestrol and blood pressure under control. The rest free of disease. So what more to fret, but just to think one day we will get old and hope to be taken care off. Therefore, we should do the same too. Put ourselves in the person’s shoe.
My mom had a fall 2 years ago when she was frightened by a dog. Due to that, she had a fracture on her right arm. Even though she did not need to undergo a surgery procedure, she needed to put on an arm sling to restrict her movement and also to let the fractured bone heal itself.
As she was right handed, she was unable to do most of the routine work she was used to doing. This made her a little despondent as she was still out and about before the incident. Under the doctor’s advice, she was not supposed to put any force to her right arm. Hence, we took extra precaution when she was sitting down or getting up and even lying on the bed.
Although we did not need to assist her much physically, we could see that she was emotionally affected by the incident. This made us realised that the patient’s psychological well-being is also important during the recovery process. As the recovery during the initial period was rather slow, we needed to motivate her and provide her with positive thinking.
Only after the 3rd week, it was found that her bones started to grow. This gave her more hope and she was able to remove the arm sling three months after going through physiotherapy as well.
Although she made full recovery, she developed a fear of being in a situation that may cause her to fall again. After much coaxing and family support, she is now back to her usual self.
To keep Helen Fernandez healthy or happy?
It is 21st January 2018, my late mum’s third death anniversary today. I was never a caregiver to her in the actual sense of the word but I became acutely aware one day to my 82-year -old diabetic mum’s struggles with health with her added high blood pressure, high cholesterol, a delicate heart condition after her stroke/angioplasty, numbness and impairment in walking, as well as osteoporosis.
For many years, my elder sister and her husband were the ones who volunteered to take mum for her umpteen hospital appointments because none of us other siblings were available due to our work situations; for many years we all trustingly left the caregiving to my sister and chipped in when necessary, particularly when mum was admitted in hospital for different reasons including a fractured lumbar 5 after a fall, cataract operation and its post- complications, and angioplasty. In 2008, my elder brother Xavier– who was living with mum and seeing to her material needs with the cooperation of his 7 siblings, especially my sister– was involved in an accident that caused severe traumatic brain injury. To cut a long story short, Xavier beat all the odds against being in a coma, and then in a wheelchair and bed-ridden for the rest of his life by walking out of University Hospital 101 days after his accident. However, he now had limitations and ceased going to work. He was also diagnosed with diabetes, hypertension and high cholesterol and began taking daily medication together with mum, who herself had a trolley load of medicines. A Sri Lankan live-in maid, Rani, was employed to see to the needs of both mum and Xavier—cleaning the house, doing the laundry, preparing meals, bathing mum, seeing to mum’s medication especially insulin, while keeping the rest of the family informed. I was one of the regulars, living nearby, who especially helped provide transport for Sunday masses and other purposes and with shopping. On New Year’s Day in 2010, I was informed by the maid that both mum and Xavier were not cooperating with her in terms of food and she pleaded for my help because mum’s sugar level was constantly high ( as high as 17-22). Xavier himself , like mum, did not believe in controlling food intake. For the first time my older brother Joe and I , more aware now of the seriousness of high sugar levels and kidney failure, began “interfering” in the food situation of our two diabetic family members. Mum had also developed skin problems, and her scalp itched.
The following years were extremely challenging in terms of dealing with mum’s health. Some family members out of love to keep her happy found it extremely difficult to be unkind where food was concerned ; therefore, as family we differed in how she should be cared for and we were divided, with many conflicts taking place pertaining to food and mum’s own misery over being “controlled”.
On the one hand, there were those who felt that she should be allowed to eat whatever she wished since she was already advanced in years; she should be kept happy rather than healthy. Kidney failure was regarded as inevitable. With no food restrictions, mum was admitted to Assunta Hospital due to her high uncontrolled sugar level despite being on 32 units of insulin, which the Assunta doctor reduced to 16.However, opinions did not change. On the other hand, there were some of us, my brother and me included, who felt strongly that mum should be kept healthy with stricter controls to prevent her from suffering from kidney failure and consequent dialysis. She needed more professional help.
I do not think mum actually fully understood what dialysis really meant. We as family could have done more in this area. She might have been more cooperative had she known.
At the end of 2012, Rani the live-in maid had to return suddenly to Sri Lanka. The conflicting opinions continued. A nursing home was out of the question,so we engaged an expensive Filipina live-in nurse to replace Rani at home and monitor mum’s diabetes. That however took a turn in the opposite direction; mum became unconscious on New Year’s Eve due to hypoglycaemia and had to be rushed to UH in an ambulance. Joe and I were now criticised for creating this situation through our attempts to keep mum’s sugar level under control. By now she also had an enlarged heart, ascites ,rising creatinine and was on diapers. After her discharge from UH, my sister and family offered to look after mum in their home. . Their policy of lovingly keeping mum happy– by not depriving her of whatever she wished to eat, and not keeping away all the sugary food and drink items because mum was already getting what she wanted—did not work . Mum was raiding the fridge at night, unable to sleep restfully, high in sugar level, not in her right mind, and behaving erratically, all of which created distress and turmoil for my sister’s family. As a result, on 16 March 2013, they gave up trying to look after mum and brought her back to her home, with Joe and I having to find an immediate solution. At this point, we were all helpless.
The very next day, fortunately, the Suria Nursing Centre in Jalan Othman Petaling Jaya had a vacant two bedded room for mum, and the manager Jennifer Saviar, whom we had approached earlier , accepted to look after mum. Although she had never liked the idea of a nursing home, mum went very obediently, fully aware of the havoc her condition had created in my sister’s home.
During the one year that mum was in the Nursing Centre, I came to understand what professional nursing care could positively do for someone who had become like a food and drink junkie. What the nursing centre provided was a strict diabetic-friendly diet, daily baths which mum appreciated a great deal, regular diaper changes, daily exercise, a loving and friendly atmosphere and a lot of human presence in the form of the care-givers, other patients , visitors and family. I had never seen mum so well taken care of. She began saying her daily prayers again, regained her mental and emotional equilibrium, and became accustomed to the regiment of the centre. Her skin had improved . She had also come to terms with the reality of her situation and was able to speak unashamedly about it to others. Most of all she felt loved although she still missed being home and longed to be taken care of in her home environment.
Unfortunately in November 2013 she fell and hurt her knee. That was a mixed blessing because at Assunta Hospital she was found to be anaemic and she was given a transfusion in addition to treatment for her knee. The symptoms of the yet to be diagnosed kidney failure were already surfacing. With her condition deteriorating, on 20th January 2014 she was admitted to UH and diagnosed with kidney failure, which shattered all of us.—what we wanted so much to avoid had become a painful reality. No dialysis was recommended but conservative management. Would we have been able to prevent kidney failure had we done things differently? That is a question I have had to deal with since her death a year later on 22nd January 2015 in University Hospital.
I do not ever want to see anyone in the condition my mother was the night before her passing on as a result of kidney failure. I must admit how terrified I am of diabetes now, having lost not only my mum but also Xavier in March 2016, and my younger brother Lawrence in February 2017, all of whom suffered from this dreadful illness although the direct causes of Xavier’s and Lawrence’s death were different. Lawrence had had his right big toe amputated and it had taken almost a year to heal.
There are many things I wish I had done; for example, I wish I had been more knowledgeable earlier in my life about diabetes and its terrifying complications and monitored my mum’s condition more intensely.
In March 2014, my sister and her family once again offered to look after my terminally ill mum in their home. She remained there until her hospitalization in University Hospital on 21st January 2015 and demise the next morning.
However, Mum’s being at the Suria Nursing Centre remains for me one of the best decisions that we made for her given her circumstances. The result was her very own deep appreciation of the professional caregiving she received, expressed in two tributes (two poems) that she composed soon after her diagnosis. The two framed poems now hang in the living room of the nursing centre as testimonies of what loving, professional caregiving can do for our loved ones when we go beyond seeing these centres negatively and reaping the benefits of professional care coupled with love.
My father had a recurring cancer on his esophagus 8 years ago. After the surgery, he could only take food through a tube. Due to this, he was put to house rest. My father used to be rather active and occasionally climbs hills around the neighborhood.
However, as he could only take food through the tube, his diet is mainly from supplement milk which obviously could not replace the nutrients from the usual solid foods. So his body grew weaker over the years. Slowly, he was unable to walk as long as he wished to. And trips to the bathroom became a handful.
Besides this, he developed further difficulties in breathing as he had excess phlegm in his throat. It got to a stage where he needed to be admitted to the hospital every few months in order to clear his throat by using a machine administered by the nurse. As his body deteriorated over the years, he passed away about a year ago.
Over the years, my mom took most of the responsibility of caring for him. Thankfully we also had caring neighbors who will pop in once in a while to keep him company or to check on him when we are away for work.
Choo Boon Yun
My grandma had passed on 10 years ago. I just felt the need to share with all of you my caregiving journey that was nothing short of challenging.
My grandparents lived very poorly and worked really hard to raise their 5 children. My grandma was a very independent lady too. Her perseverance in life kept her going in life but it was also a downfall for her when she had a stroke. She would refuse any help from us as she could not bear to see her inability to be independent.
Although she could speak but she refused to utter a single word when we wanted to assist her with feeding and cleaning up. Most of the times, she would throw her tantrum by hitting her hand on the bed, making loud crying sound and throwing towel and food that we gave her. Feeding her food would take 1-2 hours, am not kidding, as we needed to keep telling her that she needed to eat if she wanted to get better. Her favourite Chinese singing shows were no longer her favourite as she would turn her head away from the TV screen. She lost the will to live…
As I am writing this, I tear a little. I had high respect for my grandmother. She inspired me in many ways. Anyway, she didn’t live long after that. She passed away from a cardiac arrest.
I remember vividly seeing my father tear (for the first time) as he laid the flower on my grandma’s coffin. My grandma had left such a great impact in our upbringing. I miss her very much.
I had to take care of my grandma who had a stroke when I was only 15 years old.
It was a really challenging period for me and my family as we wanted to ensure she continue persevering during this difficult phase of her life.
I remembered coming up with interactive activities so that she was able to interact with us, for instance, when I said something, I would ask her to respond by nudging. Whenever she responded to us, it gave me the assurance that she was okay and knowing that brought me joy.
I would also accompany her at night when she sleeps. Occasionally, she would have sleepless nights and had the tendency to dream a lot. So, staying next to her and being awake at the wee hours was crucial so that we could assure her that everything was ok if she ever woke up from her dream or not able to sleep well.
While caring for her, I would also bring her to her favourite market where she used to have her stall. She enjoyed staying at the market as it brought a lot of good memories and sometimes she would share some tear too.
I love my grandmother and I am glad I was prepared taking care of her the best I could even I was only fifteen years old.
Our caregiving experience began when my father was diagnosed with stomach cancer.
That time, I was only in my secondary school, so my mother had to be the pillar of support to the family and my father.
She accompanied my father when he underwent a major operation to ease his cancer situation. Then, he had to go through chemotherapy that took about a month stay at the hospital.
During this time, my mother didn’t have the luxury to have proper sleep as she had to monitor my father very closely. She had to clean and fed him too.
The doctor assured us that my father was going to be ok after the chemotherapy. However, we were shocked to find out that his condition had turned worst and that he only had one month to live.
Despite hearing the bad news, my mother continued to care for my dad the best she could. At night, my dad was not able to sleep as he would be crying in pain. My mother would be the one comforting him through the many sleepless nights that we had lost count on. This whole journey had taken a toll on my mother and I really salute her for being able to pull through this.
I am a staff nurse working for a home care nursing service provider. My daily routine of caring for my patients include cleaning their body by sponging, taking their body temperature, changing diaper, checking the amount of urine and stools.
Performing physiotherapy is also crucial for the patient as we want them to exercise as much as possible.
I don’t see a lot of challenges in caring for the patients.
I am a staff nurse working for a home care nursing service provider. Throughout my years on this job, I have seen a lot of patients with all kinds of illnesses such as Parkinson, stroke, cancer etc..
My daily routine of caring of the patients would include basic physiotherapy. As I am not trained in this area, I would assist as much as I can to ensure the patient has sufficient bodily movement.
Sometimes, I do face patients who refuse our services. They think that their children are spending too much money to hire us. Therefore, occasionally some even refuse to let us do wound dressing for them. Over the time, we got wiser in managing them. We tell them that the services are sponsored by the Government so their children don’t need to pay a single cent. It works all the time.
With the skills and experience I gather here, I am able to advise and alert my loved ones should I see signs of them falling ill or caring for them when they age.
I am a staff nurse working for a home care nursing service provider.
I think my challenges in caring for the patients include having some who refuse to share their illness with us. Also, some do not see us as professional carers and don’t understand the need of hiring us to assist them in their daily needs. Lastly, sometimes due to different religion, I need to be aware of the certain food that they can and cannot eat.
Overall, caring for elderly patients requires mutual understanding and cooperation. So what I do is I would spend a lot of time cultivating a good relationship with them so that they will build their trust in me while caring for them.
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