Paula Camposano-Robinson, RN
Here is a great article from agingcare.com for anyone who has a friend or family member who may be suffering with Alzheimer’s. It is an interesting perspective from another country and demonstrates that the issues of Alzheimer’s are global. If you have questions, or need help for a senior loved one in the area, visit us at sanitasole.net.
It is an understatement to say that taking care of a loved one who is stricken with Alzheimer’s Disease, also known as ‘AD’, is a tough job.
(AD is an illness which results in the progressive loss of brain nerve cells, leading to a gradual decline of mental functions and is the most common cause of dementia).
AD is considered to be among the most stressful illness a family caregiver can face and one of the most physically and mentally exhausting situations in a person’s life. The demands are so stressful that many studies show that caregiving impairs caregivers’ immune function, escalating the risks of both physical and emotional health problems. Another study indicates that up to 47 per cent of family caregivers experience depression.
As AD progresses in patients, so does the burden of care with a myriad of emotions such as frustration, anxiety, anger and helplessness bottled up among caregivers.
YASMIN’S STORY
Yasmin Azhar, 51, understands this journey too well. At a time when others spent lazy weekends and led normal lives with family and friends, she was struggling to overcome caregiver breakdown. Yasmin is the primary caregiver for her 77-year old mother suffering from AD.
The only child, Yasmin said that her mother’s AD symptoms persisted over the years, but her state deteriorated after Yasmin’s father passed away in 1996. ”My mother was always forgetful and the tell-tale signs of AD were there. I noticed behavioural changes such as how she was very repetitive in her actions, suspicious of others and experienced a lot of confusion about where she was and the people around her.
“It was when she overdosed on her medication (because she forgot she has taken them) and was sent to the hospital that it became apparent that I had to look after her.” Furthermore, Yasmin had to take emergency leave whenever her mother, a well-educated woman and once very independent, got herself lost or missing while out driving.
More sacrifices snowballed as her mother’s AD progresses. ”I am a qualified accountant. I was formerly working as a bank officer, and I really enjoyed my job which required me to go out of the office frequently. ”However, I switched to a desk job at the Human Resources division in my bank so that I can go home early and tend to my mother. It was a very painful decision to make.”
As Yasmin watched her mother’s personality slip away, the emotional toll gradually increased. ”Things were bad in the early years,” she recounted. ”My mother and I kept quarrelling. With AD, she just changed into this person with a different personality. There were constant hurling of every sort of nasty word in the house between us, and she caused certain disputes with her sisters that almost broke up the family.
According to Yasmin, because of the intensity of the caring for her mother, every sort of feeling manifested in her and she became depressed.
COPING WITH CAREGIVER STRESS
Head of Kuala Lumpur Hospital Geriatric Unit, Dr. Lee Fatt Soon, said the impact of AD puts to test the coping skills of even the most patient and understanding of caregivers. ”We mustn’t forget that the victims of AD are the caregivers as well. They are financially, physically and emotionally strained. Depression is a very common problem among them.”
He said that AD patients, apart from their dementia-related behaviors, need help with everyday tasks such as bathing and eating. Due to the demands of looking after AD patients, Dr Lee stressed that the welfare of caregivers should not be neglected, especially for primary caregivers.
Yasmin, who “yo-yo’ed” in and out of depression was also drifting away from family and friends. While learning to cope with the stresses involved, her circle of friends started to shrink and her close friends now comprise of those from the support group she is in. ”I started attending support groups and meetings held by the Alzheimer’s Disease Foundation Malaysia (ADFM). It was comforting to be amongst individuals who were in my shoes. These became my crying out sessions, where I was able to vent out my frustrations and other emotional burden I carried,” Yasmin said.
SUPPORT AND HELP AVAILABLE
One of the six core principles upheld by the Global AD Charter and advocated by Alzheimer’s Disease International is recognising the key role of families and carers. ADFM has long acknowledged this pivotal factor in the better management of AD patients. The foundation runs a secretariat to look into administrative functions and two daycare centres located in Taman Seputeh, Kuala Lumpur and a new one in Petaling Jaya, Selangor.
The daycare centre in Taman Seputeh is the country’s first and started its operations in 2000, with over 30 registered clients and receiving 16 to 20 clients daily. The Petaling Jaya centre opened last year in September and currently has 20 registered clients. Providing non-medical quality care by trained staff, the centre conducts mentally-stimulating activities such as Reality Orientation, ‘Kenang Kembali’ Therapy to manage AD better.
Additionally, the centres help give caregivers a peace of mind, as it offers a safe and conducive environment for people with AD.
ADFM also carries out its Alzheimer’s Support Group program. The program has been successfully started in major towns Kuala Lumpur-Petaling Jaya, Penang and Johor Baharu with an outreach programme being planned to enable ADFM to serve the smaller towns within the country. These self-help groups along with its counselling programmes serve to reach out people who will not normally have access to assistance.
TAKE ONE DAY AT A TIME
Yasmin still on and off sees a psychiatrist when the going gets extra tough. But the steely woman expressed that she has learnt to cope with her caregiving duties over the years and it was important to maintain the dignity of AD patients. ”My mother is in the third stage of Alzheimer’s. But she hasn’t forgotten me yet, and that means a lot to me. Being an AD caregiver has taught me to be more mature and flexible in dealing with my mother’s eccentricities’. I’m thankful I survived and still sane!”
Saying that her priorities have changed, Yasmin said having a strong network of family and friends to share the load helps. Stating that society was complacent about the disease, expecting all old people to have it, she advised other individuals caring for AD patients to read up and learn more about it.
“You definitely need to be positive and take one day at a time. ”And it is my duty and responsibility as a daughter to take care of my mother. I have been through a lot and I think I can cope with everything that life throws at me now. I think my experience has been a blessing in disguise.”
To view the original article, read this.
Paula Camposano Robinson, RN, is co-founder and owner of Sanitasole Senior Health Services. Email meprobinson@sanitasole.net or visit sanitasole.net for more information. Phone: 239.394.9931
