Forget me not

By Dr Philip Poi Jun Hua, thestar.com.my

August 9, 2009

Malaysia

There are an estimated 50,000 to 60,000 people with significant memory impairment in Malaysia. As a result, there is a silent, unrecognised 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 caregiving. 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.

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 caregiving 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.

Caregiving 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 organisations – and from anyone else who offers it.

Caregiving requires skills. Caring for someone with Alzheimer’s disease does not come naturally any more than lecturing on physics comes naturally. Caregiving 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, healthcare 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 behaviour!

•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 behaviour if they experience distress.

•Depression: A common association, which may precede or follow the onset of memory loss and can present with agitated behaviour 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 organisations 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. Summarise 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 centre 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 organised: 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 organisations. 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.

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