Caring for someone with dementia can be a real challenge. It entails not only personal commitment but also calls for much knowledge, patience, creativity, skills and unconditional love. Caregivers often say that they feel physically and emotionally drained. The caregiving journey can be lonely if the caregiver is isolated with no one to seek solace in. Hence, feeling sad, helpless, discouraged or frustrated are not uncommon. As important as it is to provide good care for loved ones with dementia, caregivers also need care and support.
Ways you can take care of yourself:
• Ask for help when you need it
• Join a caregiver's support group, it helps to know you are not alone
• Continue to keep up with hobbies and interests
• Meet up with friends and relatives regularly
• Eat healthily and get regular exercise
It is okay to ask for help
Always remember that it is okay to ask for help because it is unrealistic to solve all problems yourself. We all need help and support sometimes. Ask for a helping hand - it will help you care better for your loved one with dementia.
Sharing by caregivers
My mummy dearest (The late Mdm Tan Kim Neo)
From 2000 to 2001, my family experienced the death of my brother, sister and husband. My mum could not overcome their passing and went into depression. We brought her to our family doctor and she was prescribed with an anti-depressant. To overcome her traumatic experience of losing her loved ones, we brought her out for activities such as shopping and travelling. Sadly, she started getting very agitated and this was the onset of her dementia.
My mum was very restless and kept asking for her medication, at times accusing me of giving her double dosage or bugging me the whole day for not giving her the medication. She even started going to her drawer more than 30 times a day to count her money and accused me of stealing her money. At that time I was not well versed in dementia and argued with her which made her agitated and suicidal. She even started throwing tantrums, refused to eat and cooped herself up in the room. There were times when she would wake up in the middle of the night to search for her money.
Upon the recommendation of our family physician, we consulted the doctor at Alexandra Hospital (now Khoo Teck Puat Hospital) in April 2006. He confirmed that my mum had moderate dementia and recommended medication and day care. In May, we managed to find a place at Toa Payoh New Horizon Centre managed by Alzheimer's Disease Association. Subsequently, after several visits to the doctor and trials of several medications, mum showed signs of improvement and was more alert.
There were episodes of hallucinations where she would see things eg. children around the house. She would also talk to an imaginary person.
The doctor advised us to put her on the dementia care programme. We visited the doctor many times and she finally became more manageable between 2009 to mid 2012.
In early January 2013, mum was diagnosed with advanced colon cancer. She passed away peacefully on 5 February 2013 from pneumonia.
My life as a caregiver was very stressful and I even contemplated suicide twice. On top of being a 24/7 caregiver (mum did not want any helper), I too had my own personal problems. In the beginning, I had no knowledge of dementia and was very depressed. But as time went by things became better with the help of the dementia support group. There's no social life for caregivers. Friends do not understand your sadness, anger and frustration. Through prayers and the support from my cell group, pastors and pastoral members, I pulled myself through all this.
I must confess that I had not been an angel whilst taking care of my mum. I told her white lies and shouted at her. At times I felt like strangling her. I regret that I did not take better care of her. Patients with dementia need security and love from their loved ones.
I still miss my mum very much and my advice to those with parents who have dementia is this - money cannot buy quality time with them, so treasure the moments with them whilst they are alive. Assure them that you love them.
Many thanks to the staff at KTPH Geriatric Clinic for their support, love, care and patience throughout these years for my mum and me.
Elsie Wee (Caregiver)
Alzheimer's disease. Dementia. Fourteen years ago, these were alien to me.
I heard of these terms only when the doctor diagnosed mum to have Alzheimer's disease in 2000. I did not have any knowledge about the disease then. Mum could not remember what was told to her 5 minutes ago and kept repeating the same questions. Subsequently apart from the forgetfulness, I noticed that she was unable to keep up her personal hygiene and she messed up her wardrobe.
Sometimes, she did not bath but there were times when she bathed 2 to 3 times in one day. At times, she shouted very loudly at night which made our neighbours feel uncomfortable. She often misplaced her door keys and accused my father of hiding them.
Once, she fractured her hip when she fell at home and needed to go for surgery. After discharge, she kept asking to go home when she was actually at home. When she did something wrong, I tried to explain and reason with her but she did not seem to understand. Often, I ended up yelling at her but regretted later for not respecting her as my mother.
Relatives and friends stopped coming because they felt uncomfortable seeing a once active and cheerful woman becoming a stranger to them. I became more stressed when the disease progressed with more challenging behaviour. I was drained mentally, physically and emotionally. I complained a lot about mum to my siblings who do not stay together with us, but they were unable to give good advice due to the lack of understanding of the disease and skills in dealing with the challenging behaviour.
I declined the suggestion from them to employ a helper to assist me because I was not comfortable to have a stranger in the house. Instead, I engaged a food caterer to take care of the meals and employed a part-time cleaner. I couldn't sleep well at night and when I woke up the next morning, I felt very down that I did not know what my day was going to be.
My 'new mother' was confused, fearful, insecure and full of conflicting emotions. I shed tears every day from self-pity and felt sad for my mum. On the one hand I wanted to do what was best for mum, but on the other hand I was just too frustrated. It was like entering a labyrinthine journey and losing my direction.
Medical cost aside, the caregiving journey was tough. Juggling a full time job and caring for mum under a tremendous amount of stress was an uphill task.
I decided to quit my full time job. To balance my care-giving life, I enrolled myself in a part time social service related course which was a totally new area to me. I was worried that I might get depression. I sought the doctor's advice when I brought mum for her medical appointment. He suggested dementia day-care for mum and a caregiver support group which I attended and liked very much because I could vent my frustration at the sharing session and the participants could understand me.
I learnt how to communicate with persons with dementia and picked up tips for dealing with challenging behaviour from other caregivers. After each session of the support group meeting, I felt fresh and rejuvenated just like after a spa. I grew from the support group and started to read more extensively on topics related to Alzheimer's disease. Mum benefited from attending the dementia day care centre too because she was an active person who liked to mingle. Some of her challenging behaviours lessened and she began to sleep well in the night because she had activities in the day. She looked happier when she returned from the day centre in the evening. Life improved for both of us as I acquired more skills.
After my 2 year course, I landed a part time job related to dementia care. I employed a helper when dad's health deteriorated drastically. Dad passed away six months after the helper came. Thank God that the helper was competent in taking care of mum despite weeping almost every night in the first year.
I am thankful for close family support as I diligently carry on my caregiver role. On my helper's day-off once a month, my brother and sister rotate to help care for mum so that I can still join my friends for weekly morning exercise and breakfast.
Currently, mum has advanced dementia. She is much quieter than before and is no longer able to use words to express herself. We need to learn new ways to connect with her. In addition, she needs more physical help now and is unable to cope alone with her daily needs. She has developed problems with swallowing and can only take soft diet. I am now facing these new challenges and have to learn to cope with them. With the knowledge and skills I have gained throughout the years, I am now confident I can continue my care for mum with the assistance of my helper.
Leng Chan (Caregiver)
