I,CAREGIVER: Patients and their ‘demons’

ONE of the hardest things in caring for someone who is ill over the years, is watching them battle with their “demons”.

For years I watched my late mother battle with food and her love for food. It was what finally got her into big trouble as what she ate finally brought about diseases that could cost her her life, like the three major culprits — diabetes, hypertension (high blood pressure) and heart diseases (blocked arteries, heart attack, stroke).

She wasn’t the only person I knew who had such trouble. Other family members and friends go through this too. Some, like my late father, can beat the odds.

My father had been a chain smoker since he was 18. When he felt breathless and experienced chest pain after going up a flight of steps, he stopped smoking but that was only after he saw his chest X-ray and the doctors told him to stop. He was 70, at the time and quit “cold turkey”. He had the will and he was disciplined. He felt better and lived almost to his 88th birthday.

It is not so straightforward with many people. For many of us, good healthcare advice is often ignored because of denial — we don’t agree with the diagnosis or we cannot accept it. Some people refuse outright to take their medicines because they think they can beat it on their own. Their promises for lifestyle changes, however, are short lived — not long enough to make any significant change.

Some people are fatalistic. They say things like, “No amount of medication is going to change my diagnosis. I’m stuck with this disease for life. So why bother with a certain diet or medication?”

The point is: We have to make significant lifestyle changes and commit ourselves to it. Of course, this is easier said than done.

So what do we, the caregivers, do? I found that when Mum was admitted to the hospital and given a strict diabetic diet for all her meals, she was depressed and miserable. She refused to eat and cajoled us to bring her favourite dishes from outside. There was potential trouble between her illness, doctor’s orders, dietitian’s recommendations and us, her caregivers.

After a few episodes and many discussions with all concerned parties, we had to get everyone together so that Mum could understand that we were trying our best to make her better. We got her involved in everything we had to do for her and why she had to do what she had to do, namely her diet and medications.

This worked for a while. The biggest factor that helped was compassion, the gentle approach. Strong-arm tactics and threats never worked with her. We told her how much we wanted the best for her and how much we loved her. She loved to travel, eat and shop, and we used those pointers in our persuasions. As she was such an independent person, we understood her need to feel in control of her health and her actions.

We had to remember that we were dealing with an adult who had always called the shots and made all the decisions. When caring for such people, we should also remember that the major privilege of being an adult is the ability to choose and decide independently. It is all about giving them and treating them with respect and dignity. When they lose this independence and become “non-compliant”, we perceive them as being stubborn and uncooperative. The truth of the matter is that they are just scared. They too don’t like the feeling of losing control and generally “losing it”.

That is usually when depression sets in. Depressed people make bad choices. I remember how my mother mourned the loss of her husband, my father. Loneliness and depression hurt. She wanted to give up. She didn’t want to take her medications. She just wanted to speed up her demise. We didn’t allow these emotions to spiral out of control. We had discussions with her doctors. We needed to find ways to lift her spirits.

When the doctors asked what was the best way to cheer Mum and when all other answers came to an impasse, the only bargaining chip left was her favourite foods. So we came to a compromise. Mum was allowed her favourite things in certain portions and servings. By that time, she had already gone through many hospitalisations and even recovered from a diabetic coma. She was a survivor!

Mum perked up with these changes. We realised that while we could try to influence her choices, the decisions were hers to make.

Our challenge as caregivers is to standby and keep an eagle eye, supporting the ones we love through their difficult moments, even when they make choices that harm their health. We can only be ever-ready to catch them when they stumble or fall.