The issue of care in Alzheimer’s disease should not focus solely on the patient as caregivers need support too.
The devastation of Alzheimer’s disease affects not only patients, but also their caregivers.
The ramifications of the disease are far-reaching, involving numerous facets of human life, including the physical, psychological and socioeconomical.
As most people with Alzheimer’s disease in Malaysia live at home, family and friends have to provide the greatest portion of care and support. Caring for someone with Alzheimer’s disease is equivalent to an unpaid full-time job, especially when the condition advances to the moderate or severe stage.
We tend to place more emphasis on the wellbeing of the patient, and forget that the caregiver frequently has an equal, if not, bigger, stake in the whole situation.
Hence, in managing a person with Alzheimer’s, it is compulsory to remember to also care for the caregiver.
In this article, we present two caregiver stories.
Mum was diagnosed with Alzheimer’s disease in 2010. Months before that, we had already noticed changes, such as her becoming confused easily, being disorientated about time, feeling agitated over the smallest matters, and worst of all, not being able to carry out the simplest day-to-day tasks, such as going to the toilet.
I will never forget the day I woke up to a bad smell coming from mum’s room. I was confronted by an indescribable scene: mum was lying in bed covered with faeces, completely unaware of the state she was in.
When I asked her, she innocently denied making the mess. In tears, I told her, “Mum, just be a good girl, and it will be alright”, and I quietly cleaned everything up.
It is both physically and emotionally challenging being a caregiver for someone with Alzheimer’s disease. It has been particularly difficult watching mum’s condition progress so quickly, and having to continuously adapt and learn new skills to cope with her deteriorating mental and physical abilities.
Support from other family members is important. It is vital to let them know and understand what you are going through, caring for someone with Alzheimer’s.
Getting them to be more involved in care will help you get a break and reduce your stress.
My husband Kwan has been integral in giving me the strength and support throughout this journey. I am very thankful to him for being by my side every step of the way.
The first thing a caregiver has to learn is never to argue with someone with Alzheimer’s disease, and to stop trying to correct them. Just go along with what they say, as long as they are comfortable and you are able to give appropriate care.
Visits from the family definitely make mum’s day. It does not matter that she cannot recognise any of us; I believe that she is aware she is loved just by seeing us around her.
Today, mum is already in the advanced stage of Alzheimer’s disease. She does not complain of hunger or thirst or discomfort. I have to interpret this from the expressions on her face.
To me, a simple smile on mum’s face is worth a thousand words. It is like she is saying “thank you” for taking care of her. This helps me deal better with the difficult aspects of caring and gives me the strength to carry on.
I would like to say this to mum: you were there for us throughout the good times and the bad, and now be assured that we will always be there for you.
I want you to know that I have always loved you, and will continue to love you forever.
My father was a retired military officer. Proud to have served the country, he remained a disciplined man. He was a good father and had lived through tough moments in his life.
He has survived a major heart surgery, diabetes and benign prostate enlargement.
Three years ago, I began to notice that he was increasingly forgetful; he could not remember whether he had taken his medications, meals or his bath.
I tried to be patient when he repeatedly asked the same questions throughout the day.
A year and a half later, his behaviour began to change; from a mild-mannered person, he became easily irritable and agitated, even for the most trivial matters.
It broke my heart to see him scolding my elderly mother. There were times when he would say that he had visits from a deceased family member.
At times, I wondered whether he had a serious mental illness.
His conversations were always confusing as he seemed to be talking about his past, and after much observation, I realised that he was reliving his days in the army.
Then, I began to understand the reason why he got up at four o’clock every morning and demanded for the main door to be opened – he was getting ready for his early military routines, and of course, telling him that he no longer served the army resulted in anger and frustration.
Since late last year, he started to have episodes of urinary incontinence. He would also frequently forget his walking stick, and as a result, he had recurrent episodes of falls.
I attributed all these to dementia.
Early this year, however, he was admitted to the hospital as there was marked deterioration in his cognition. He was getting more disorientated, increasingly incontinent, and he was unable to control his bowels too.
Several tests were performed; a CT brain did not show abnormalities that could have arisen from the falls. A colonoscopy found cancer in his colon.
My father passed away a couple of months ago.
Caring for him was not an easy feat; it was a very trying period for us, and the emotional turmoil was very real.
Although I have guilty moments when I recall the times when I acted harshly towards him as a result of my lack of understanding of this illness, I know that I had tried my best.
Love, patience and compassion is needed during such trying times, but taking care of the caregivers themselves is something which should not be overlooked. Without the caregiver, there would be no loved one.
* Name has been changed to respect the privacy of the family
> The Alzheimer’s Disease Foundation of Malaysia (ADFM) will be hosting Forget Me Not, Konsert Amal DiRaja, on Dec 5 at KLCC, in celebration of the 69th birthday of Sultan Sharafuddin Idris Shah, the Sultan of Selangor. The concert will feature the renowned Shanghai Symphony Orchestra, with special guests, local singer-songwriter Najwa Mahiaddin and prize-winning violinist Huang Bin. The 72-piece orchestra will be led by conductor Eugene Pook, and will feature light classical music, popular favourites and sheer symphony magic. For event enquries, please call ADFM at 03-7956 2008/7958 3008 or email firstname.lastname@example.org. For ticketing enquiries, call TicketCharge at 03-9222 8811 or visit www.ticketcharge.com.my