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)

3 October '09 9:00am Grand Bluewave Hotel, Shah Alam : Free Public Seminar "Diagnosing Dementia - See It Sooner" Commemorate World Alzheimer's Day

All Caregivers, Members and the Public,

You are invited to a free public seminar on "Diagnosing Dementia: See It Sooner" on Saturday, 3 October '09. It is a joint collaboration between ADFM-Alzheimer's Disease Foundation Malaysia and the Rotary Club of Shah Alam, Malaysia and sponsored by Eisai (Malaysia) Sdn Bhd to commenmorate World Alzheimer's Day which is on 21 September 2009.

Details:

Day/Date: Saturday, 03 October 2009
Time: 09:00am - 2:00pm
Venue: Grand Bluewave Hotel, Persiaran Perbandaran, Seksyen 14, 40000 Shah Alam, Selangor Darul Ehsan, Malaysia (Tel: 603-5031 3388)

Program:

09:00am - 09:30am : Registration (light Refreshment-coffee/tea).
09:30am - 09:40am : Welcome Address by ADFM EXCO Chairman, Datuk Dr Yim Khai Kee.
09:40am - 10:20am : "What is Alzheimer's Disease / Dementia?" by Dr Ho Bee Kiau, Family Physician, Klang Keluarga Poliklinik, Kelang.
10:20am - 11:00am : "How Is AD Diagnosed?" by Dr Lee Fatt Soon, HKL.
11:00am - 12:00pm : "Treatment of AD - Current and Future" by Dr Yau Weng Keong, HKL.
12:00pm - 12:40pm : "Managing Difficult Behaviour of Alzheimer's Disease" by Dr Chin Ai-Vyrn, UMMC.
12:40pm - 01:10pm : Q & A

01:10pm - 01:15pm : Closing Remarks by RCSA President
01:15pm: Lunch and adjourn.


Kindly take note that REGISTRATION is on First-Come-First Served Basis. Space limited to 150 pax. Entrance is by prior registration with ADFM.

Call ADFM at: 603-7956 2008/7958 3008 or Email: adfmcaregivers@gmail.com or Fax: 603 7960 8482.


From NACON

CARING FOR A MEMORY-IMPAIRED PARENT

(By Professor Dr Philip Poi Jun Hua, Consultant Geriatrician from University Hospital-UMMC, Malaysia & ADFM Panel of Medical Advisers)

THERE are an estimated 50,000 to 60,000 people with significant memory impairment in Malaysia. As a result, there is a silent, unrecognized band of Malaysians – mostly women (daughters) – who have chosen to take care of a loved one with such a condition, e.g. Alzheimer’s disease. This is a demanding job in itself, but many are not only care-giving. They are also raising their own children – and maybe working – at the same time.

For anyone in this situation, squeezed between the responsibilities of parent and caregiver, days are spent preparing lunches and making sure medications are taken, checking homework, and filling out health insurance forms. For the caregiver, his or her marriage, family, career, and health will be tested.

Being a caregiver does just mean taking care of a loved one 24 hours a day. If you are helping a parent out with the basics of living, and your visits have stopped being social and become a necessity, you have become a caregiver.

Taking care of someone with Alzheimer’s is too much for one person. You’ll need caregiver support from your spouse, siblings, doctors, local and national organizations; and of anyone else who offers it.

The Long Haul

There are seven things you need to accept about your future as a caregiver.

Your loved one may live for many years. The life expectancy of someone with Alzheimer’s depends on the age at which the diagnosis was made. Many people with Alzheimer’s disease live eight, 10, or more years. Becoming a caregiver is a serious, long-term commitment.

The demands of care-giving will increase. As the disease progresses, your loved one will need more and more help. In the early stages of the disease, caregivers spend about 14 hours a week on average caring for the person. In the advanced stages, it becomes a full-time job.

Being an Alzheimer’s caregiver will affect your family. There may be ways to get your children involved that will not only give you, the caregiver, support, but will benefit your loved one and transfer the care ethic to your children.

Care-giving will affect your finances. This is usually due to the cost of medications and the need to have an extra hand in the form of domestic help or a nurse.

Do not try to do it alone. Taking care of someone with Alzheimer’s is too much for one person. You’ll need caregiver support from your spouse, siblings, doctors, local and national organizations – and from anyone else who offers it.

Care-giving requires skills. Caring for someone with Alzheimer’s disease does not come naturally any more than lecturing on physics comes naturally. Care-giving for someone with dementia is not like looking after another child. Sometimes the logical, natural thing to do is the wrong thing.

The common problems faced by children looking after parents with memory impairment are usually a result of a lack of information on how to handle this new situation. You need to learn about the disease, its treatment, and the legal and financial issues. Consult Alzheimer’s disease web sites (see below), books, health care professionals, and other caregivers. Do not try to muddle through on your own. Both parent and caregiver will suffer the consequences!

Dementia causes memory impairment, but in the early stages of this illness, the forgetfulness noted by both your parent and the family might be innocuous. Many children attempt to correct the mistakes the parent makes in the hope that it improves the memory of the event. Some become irritated by the repeated questions asked. It is useful and important to appreciate that the reality experienced by those with memory loss is not your reality. They may insist a long gone relative is still alive or that someone is stealing their money. By persistently insisting that they are wrong in their perception can cause your parent to suffer from a loss of confidence and experience distress and possibly depression.

One solution is to distract your loved one with another interesting activity or to bring them to another room where there are no triggering cues. Try not to confront or correct, but to diplomatically distract to avoid creating a drama.

Later in the illness, when your loved one becomes increasingly dependent on you, there is a tendency to assume control over all activities. Prompting your memory impaired parent to change his or her clothing, or to bathe or eat may be necessary. They may react to your attempts to help in a way that you might find inappropriate, or irritating. When your parent behaves erratically, look for possible triggers as listed below:

- Physical discomfort: They may have an infection, a headache, lack of sleep, a toothache, or even simple constipation that could affect even your behavior!

- Activity related: In the past, your parent might have been the queen of the kitchen, and because of her worsening memory, you fear that she might harm herself and bar her from accessing the kitchen. You might find that your loved one becomes increasingly agitated as mealtime approaches, and this could be her intrinsic desire to prepare food for the family.

Distracting her with another meaningful activity or involving her in the kitchen whilst monitoring her activity might reduce her feeling of helplessness. In a similar situation, cessation of driving may be very disturbing and has to be handled with care and tact.

- Intrinsic personality: Some parents have in the past, docile temperaments, and some may have fiery tempers. One should anticipate amplification of their past behavior if they experience distress.

- Depression: A common association, which may precede or follow the onset of memory loss and can present with agitated behavior or restlessness.

When you feel overwhelmed, it is easy to get locked into your habits, to keep doing things the same way even if they are not working. Try to keep some perspective and think of creative ways to get help. At the very least, reach out to some of the local and national organizations for Alzheimer’s caregiver support (see below)

Family Issues

Explain the situation to your children. The chances are that your children have already noticed that something is amiss. So explain that it is a disease that is making grandpa or grandma behave strangely – and that it is not contagious.

Involve your children. Young children can provide entertainment; older children can help out by doing more chores around the house. Your children might not like to do this, but sometimes circumstances give you little choice. And if the household functions better as a result of their help, everybody benefits.

Develop a plan of care. If possible, bring the family together for a meeting. Decide with the older person what the primary needs are, who can provide assistance and what community resources would help. Summarize your agreement in writing. Keep in mind that family difficulties are common. Involve your family and siblings in the decision making process as early as possible.

Discuss legal and financial issues. These topics may be difficult to talk about, but they help ensure that the older person maintains decision-making authority even when incapacitated. Pre-planning will also lessen family disagreements and protect family resources. Do not delay addressing this item.

Sometimes, exclude grandma. A person with Alzheimer’s tends to become the center of attention, which can leave children – and other adults – feeling overlooked. So although you might feel guilty about it, you need time away. A weekly dinner out with just your spouse and children to reconnect as a family might be all you need to recharge your batteries.

Taking Care of Yourself

If you want to keep taking care of your family and your loved one, you need to keep physically and mentally strong. You need to give yourself breaks. If you have siblings, make a deal where they take over for the weekend, or even for a longer period.

Getting other people to help out does not only help you, it gives you the opportunity to interact with your friends, go shopping, or just to get your hair done. So stay fit. Eat in moderation. Activity is the key for physical and mental health. Try to squeeze in 20-minute walks or have a home exercise programme.

Long-Distance Caregivers

If your mother lives in Penang and you are in Hong Kong or even Johor Baru, how do you help take care of her?

Get Organized: Take care of necessary paperwork. Find all legal, financial, and insurance documents, including birth and marriage certificates, wills, and power of attorney. Identify bank accounts, titles, sources of income and obligations, and all relevant insurance papers.

Review these documents for accuracy and update them if necessary. Store documents in a secure place such as a safe-deposit box or a fireproof box.

Identify your informal network. Ask for help from people in the older person’s community, such as relatives, neighbours, long-time family friends and members of religious, civic, and social organizations. Ask them to call you if they spot a problem.

Investigate travel alternatives. Be prepared to “care commute” for any emergencies. Investigate travel options in advance.

Finally, maintain good health, make time for yourself, set limits, and allow others to help. Remember that the person with memory impairment has a different reality and it is easier to be non-confrontational and develop the patience of an angel.

(Source: The Sunday Star, August 9, 2009 - http://thestar.com.my/health)