MM: Joanita Britto tells you what it takes to live with an Alzheimer’s patient: April 30, 2008

WHEN MEMORIES FADE OUT

Joanita Britto tells you what it takes to live with an Alzheimer’s patient

While at the airport preparing to board the flight to New Zealand, Mrs Menezes, then 80, told her son Robin that she was ready to go back home. It would have seemed normal, but for the fact that they had just left their apartment in Mumbai to spend Christmas with family in Auckland. Robin found it strange that his mother thought they had already visited his brother Denzil and were back home in Bombay. He did not know then, what he passed off as forgetfulness of the elderly, was actually the onset of Alzheimer’s disease.

Christmas of 2002 was a prelude to what lay ahead. Throughout vacation, Mrs Menezes was restless in her new surroundings and took comfort only when she saw Robin around. On returning to Mumbai, she mentioned instances of her memory failing her, but covered up by saying it was a part of old age.

One morning, though, she told Robin that she wanted to visit the Memory Clinic in Holy Family Hospital, Bandra. Robin made the necessary arrangements, and later that day his mother was diagnosed with Stage II Alzheimer’s Disease (AD). He claims, “I had heard of Alzheimer’s, but never thought it would be so close to home.”

WHAT IS ALZHEIMER’S?

Alzheimer’s is the commonest cause of Dementia. Dementia is a disorder process involving the brain in which people over 65 show symptoms of progressive impaired memory, thinking processes and behavioural changes. Medication is available to provide relief of symptoms and retard the progression; however, it does not cure the disease.

Dr Shirin Barodawala, secretary of the Alzheimer’s and Related Disorders society of India (ARDSI) Mumbai Chapter, has observed that most families in India do not respond to any changes in behavioural patterns of their elders until the advanced second or third stage. By then it is not of much use to administer medication to slow the effect of AD. The incidence of Alzheimer’s in India is three per cent of the population above the age of 65 years, and while people find it easy to come to terms with the diagnosis of a parent it is harder to accept the news of a spouse to be suffering from AD. “Families in India are prepared for the dependency of the elders of the house. They get worried primarily when AD begins to affect the core and basic processes, such as dressing oneself, eating, impaired mobility etc,” says Dr Roop Gursahani, Consultant Neurophysician at P.D. Hinduja National Hospital.

THE NEXT STEP

So what do you do when you know you’re fighting a losing battle? Stop fighting, says Robin, and it’s much easier to live. On the basis of his personal experience, he feels that living with a loved one who is diagnosed with Alzheimer’s becomes less stressful when you accept the illness rather than try fighting it.

Easy as it sounds, Robin would be the first to say that is a lot harder to practice. It requires enormous patience and understanding. The first step is to inform relatives and friends and inform them on the condition of your loved one. Having a strong support system makes a big difference. Also remember that you should never argue, debate or take personal offence with an Alzheimer’s patient. Robin recalls that the most traumatic event since 2002 was when his mum asked for her late husband. On learning of his death she accused her son saying, “Of all my children, I did not expect you to hide this fact from me”, and she sobbed pitiably. Ever since he stopped responding to any of her queries regarding his father. It is moments like these that makes one feel like all is lost. A good way of looking at it would be to witness it as an inverted childhood: thinking of an AD patient as a baby who would not be yelled at for wetting the bed or throwing a tantrum.

One must also make sure that the household doesnt suffer and life should continue normally for the rest of the family. Presently there are numerous organisations that provide nurses and aides to care for AD patients. These caregivers provide a lot of relief to families, and by investing in them family members are likely to feel less resentful in the long run. Robin Menezes does not have a normally active social life, but he has worked around it with the help of his friends. Fortunately Mrs Menezes has the more docile form of Alzheimer’s, which lets her be calmer and composed. As each case of Alzheimer’s differs from individual to individual, it’s best not to keep fixed rules for any case. Trained caregivers are better equipped for the more aggressive outbursts of patients as well.

As Robin says, adaptation is of essence. When his mother stopped walking in 2005, he knew he would need diapers and trained nurses to tend to her. Investing in them has not only helped share the burden but also avoided unnecessary trauma and stress.

When asked if it feels like the effort he puts in to look after his mother is going in vain, he says that providing for her has never been a task. He sees it as his duty as her son: “So what if she can’t remember me and what I do for her. I remember who she is and all that she did for me!”

BE WARNED

There are chances of Alzheimer’s if you:

Ask the same question over and over again.

Repeat the same story, word for word, again and again.

Forget how to cook, or how to make repairs, or how to play cards activities that were previously done with ease regularly.

Losing one’s ability to pay bills or balance one’s check book.

Get lost in familiar surroundings or misplacing household objects.

Neglecting to bathe, or wearing the same clothes over and over again, while insisting that they have taken a bath or that their clothes are still clean.

Relying on someone else, such as a spouse, to make decisions or answer questions they previously would have handled themselves.

WHAT YOU CAN DO TO HELP

Provide a good diet and healthy lifestyle. Physical exercise, proper nutrition and socialisation are important for people with Alzheimer’s disease.

Plan daily activities to help provide structure. It is always best to establish a routine with which the person can become familiar. Some families find it useful to put up a daily timetable for activities, including toileting and meals.

Set realistic goals for yourself and your loved ones. Choose the best times to carry out activities through the day when the person is usually at his/her best.

Adapt to the environment. Minimise the changes in the patient’s routine. Make adjustments as his or her abilities decline. Let the person with Alzheimer’s disease wear a bracelet with a contact and address in case she/ he has the tendency to wander.

Keep activities familiar and satisfying, and keep the instructions simple.

Reassure and be supportive. Allow them to to complete as many things as possible on their own even if you have to initiate the activity.

Provide cues for desired behaviour. For example, if you label a drawer according to what it should contain, the person is more likely to put things in the correct place.

Keep the patient out of harm’s way by removing things that could endanger them. For example, hide the car keys and matches. Remember: What appears safe to you may not be safe for a person with Alzheimer’s.

As a caregiver do not put your life on hold. Continue to m e e t with friends, have hobbies, and try to maintain a normal schedule.

Be Honest. Understand and act according to your own physical and emotional limitations. Also, take care of yourself, and allow periods of rest and relaxation.

The disease is quite variable. There maybe times when the patient can function almost normally and other times when he/she may be very dependent. This is completely natural and the patient is not intentionally being demanding or manipulative.
(Mrs Menezes and her son Robin refused to be photographed)