BITTERSWEET BURDENS

(By Dr Esther G. Ebenezer, ADFM Panel of Medical Advisers)

The Burden of Dementia on Caregivers and Loved Ones:

IT would be appropriate to begin this with a real account of how a caregiver struggled to take care of her husband who suffered from Alzheimer’s disease before he passed away recently.

Mrs X felt lost when her husband was first diagnosed with Alzheimer’s disease. Initially, she had no clue about the disease, but she learned a lot along the way. She single-handedly took care of her husband. Support groups did not exist in her locality at that time and both her children were settled overseas. As she went through each stage of the disease with her hubby, she became well versed in handling the associated difficulties inherent in Alzheimer’s disease.

She considers moderate stage Alzheimer’s disease to be the toughest period to go through. She cites some of the incidents and her experiences as follows:

"One night, when I thought my husband was fast asleep, I switched on the TV for a moment to relax. I was sewing at the same time. I was startled by a shout right beside my ears, and found him standing close by, raving something about me having killed his two sons. ‘Where are my two sons, show me my sons, you have killed them ...' "

"My husband did not recognize me at all. Gripping the pair of scissors I used for sewing, he pointed it at my neck. He dragged me towards the wall and began to bang my head against it, again and again. I felt a cold shiver my spine. I managed to convince him that they were alive, living abroad, and I could get them to talk to him."

"He seemed to comprehend that ... so I ran to phone to call the boys to talk to him. For the next few hours, the boys phoned back a number of times to talk to him until he calmed down completely. He was also tired out by then and wandered back to bed to sleep."

"For the rest of the night, I stayed outside the house, inside the car. It was only later I learned that this kind of behaviour of mistaking someone to be an imposter is known as ‘Capgrass syndrome’."

"When my husband became aggressive and abusive verbally as well as physically, his anger outbursts came unexpectedly, during odd hours of night. Life became unbearable. Some nights, when he was unusually restless, I slept in the car as I felt safer there."

"Now he is no more, and I still feel that I had not done enough for him when he was alive. I never thought I would miss him that much. In the past, I wished he would die, but now that he is gone, it is hard to face.”

Elderly Concerns:
The number of elderly people in Malaysia is increasing at a rapid pace – those aged 60 years old and above constituted 6.5% in 2000, and this is expected to double by the year 2020. The number of dementia-like diseases such as Alzheimer’s disease increases with age. Currently dementia is estimated to affect some 60,000 Malaysian elderly, and by the year 2020, this figure is also expected to double.

People with dementia suffer mainly from poor memory; impaired cognitive functioning such as planning, organizing, and judgment; and personality changes, disorientation, and behavioural disturbances. Persons with dementia go through different stages where they need different sort of care.

A Caregiver is someone who offers help to a family member or friend with dementia, either part-time or full-time. Caregivers provide many services that include transportation to the doctor, paying the bills, help with bathing or dressing, shopping, meal preparation, and coordinating with outside agencies for assistance.

The Four Stages of Care-giving:

Stage One : Getting Started
Recognize the impact of care-giving on your life and family, learn how to be a Caregiver, and find out more about the demented person who needs care. In the early stages of dementia, activities of daily living are impaired, and the sufferer needs constant supervision.

Stage Two : Finding Help
As the disease progresses, behavioral disturbances set in; this is considered the most difficult stage to handle and is a testing period for caregivers. Demented persons at this stage often end up being sent to institutions or to nursing homes as the caregiver can no longer cope. DO NOT hesitate to ask for help – from family, friends, and support groups.

Stage Three : Heavy Care
Finally, the sufferer will become wheelchair-bound or bed-bound. Here they need basic nursing care.

Stage Four : Letting Go
Resolve relationships, complete end-of-life decisions, utilize hospice care, let yourself grieve after the demise, care for yourself, and have a plan for your life after care-giving has ended.

Caring for someone with Alzheimer’s disease or dementia impacts every aspect of daily life. As the patient loses one ability after another, Caregivers face tests of stamina, problem-solving, and resiliency. During this long and difficult journey, communication diminishes, rewards decrease, and without strong support, caretakers face challenges to their own well-being. Grief, depression, and anger are common, but learning about the disease can reduce one’s frustration, foster reasonable expectations, and help prepare for new challenges.

Maintaining emotional and physical fitness is crucial. Prepare and protect yourself by understanding your loved one’s experience and getting help from others. This can minimize the stress and enhance the joys of one’s care-giving experience.

The cognitive and physical regression of the patients will ultimately require 24-hour care. Although medical advances can slow down the decline, Alzheimer’s remains a terminal disease. Research carried out among Caregivers have found that they experience significant emotional disturbances. They visit their doctors more often, and are more prone to psychological distress.

Poor social support where there is lack of family and friends to facilitate care, lack of community health-care services, social isolation, and even lack of knowledge of the disease can adversely affect the caregiver.

Seek professional help if you have warning signs of Caregiver burnout. If you’re not getting enough sleep, eating poorly, and feeling lonely or crying, losing your temper more, it is time to reach out for help.

Because care-giving is such hard work, the following simple strategies will help protect the Caregiver against the pitfalls of excessive stress:

- Schedule mini-workouts throughout the day. Regular exercise not only keeps you fit, it releases endorphins that help keep you happy.
- Make time to play. In the early stages of Alzheimer’s disease, include your loved one in short walks, board games, or jigsaw puzzles. A daily dose of fun is good medicine, and doesn’t require money, a car, or huge amounts of time.
- Try something new. Challenge yourself to learn a new skill while you are “on the job”.
- Keep laughing. Humor is a well-known antidote to stress, sadness, illness, and boredom. Hence, envelop you and your loved one with laughter. Get hearty belly laugh DVDs at the video store. Your infectious good mood will replenish your inner resources and sooth your loved one.
- Ask for help. Take regular time away to recharge yourself.

Some Recommendations:
- Put staying healthy at the top of your list.
- Have a back-up plan in case something unexpected happens to you.
- Take one day at a time.
- Keep your sense of humor.
- Pat yourself on the back for the good job you are doing.
- Get enough rest and eat right.
- Make time for the things you like to do.
- Talk to others about how you feel.
- Listen to your friends.

If you have family members who live close by, ask them to share some of your burden. A couple of hours a week away from care-giving can be a lifesaver for you. Use this time to do the things that you used to do in your life, such as:

- Get away from the house
- Go out for a walk
- Meet friends for lunch
- Go to a prayer meeting
- Listen to music
- Work in your garden
- Read a book

Medical, legal and financial planning should be done early, while options are still available. Once decisions are made, communicate them to people who need to know, both family members and professionals. Plan ahead on how care would be provided in the event of illness, hospitalization, or death of the Caregiver.

Avoid isolation. Being a Caregiver can be a wonderful experience, but it can also be a lonely one. Caregivers can express love, loyalty, and affection for those in their care, but it can also be a time when guilt, anger, and frustration surface. Caregivers need people with whom they can share their pain, in person or by phone. Look for support groups as a source of encouragement and information.

For some help and information, the book, "The 36-Hour Day : A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life" is an excellent guide, with vivid illustrations and clear information. It’s worth buying.

Alzheimer’s Disease Support Group:

When you’re caring for someone with dementia, it can be all too easy to ignore your own needs and to forget that you matter, too.

Support groups can be of assistance. One example is the Alzheimer’s Disease Foundation Malaysia (ADFM), a non-profit, non-governmental organization registered in July 1997. There are ADFMs operating in Penang, Perak, Melaka and Johor Bahru. The main objective of this organization is to assist dementia patients and their families. They can offer encouragement, the latest information, and helpful suggestions for caring of Alzheimer’s patients.

Support groups usually consist of family members who provide a caring, non-judgmental support network. Support groups usually offer guidance on legal advice, respite care, financial and insurance information, state medical assistance, placement issues, handling feelings of guilt and anger, elderly benefits, clinical research, latest drugs that are available, companionship, comfort, and much more. Though support groups in Malaysia are not equipped to offer the full range of support, they still provide ample aid.

Respite Care:
Respite care is short-term care used as a temporary alternative to a person’s usual care arrangements. People who care for someone with dementia often carry on without realising how tired or tense they have become. A break or holiday can help them relax, recharge and rejuvenate their minds and bodies.

Different types of respite care are available, ranging in duration from hours to days or even weeks. The most frequently utilized form of respite care service is the day care centers. Day care benefits the demented person through social interaction and diverse activities. It benefits the Caregivers by giving them a much needed break. Research has found that day care centers have favourable effects on a demented person’s behaviour and helps reduce Caregiver stress.

In Malaysia, dementia day care centers are run by NGOs. Volunteers are always welcome for various needs such as drivers, persons providing information and legal advice, physiotherapists, social workers, general helpers, and also individuals who can raise funds to run the centre.

Anyone who is interested to learn more about Alzheimer’s disease can get a copy of the handbook "Playbook for Alzheimer’s Caregivers" by Coach Broyles for free through the internet. This book won the 2008 Caregiver Friendly Award and provides a wealth of tips on care-giving. You can also visit the website at: www.alzheimersplaybook.com.

I would like to conclude the topic on dementia with a poem from a demented person’s perspective:

Do not ask me to remember.
Don’t try to make me understand.
Let me rest and know you’re with me.
Kiss my cheek and hold my hand.

I’m confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me.
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different ’though I try.

Just remember that I need you,
That the best of me is gone.
Please don’t fail to stand beside me,
Love me ’til my life is done.

– Author unknown-

(Source: thestar.com.my/health, published 23 August 2009)