Paro has been caring for her mother, 86, who has dementia, for the last six years. She is frequently found in doctor’s waiting rooms and has their numbers on speed dial. She tells us what she has learnt from the experience.
• Above all else, patience
• Flexibility: Every day is different and brings different challenges that require different responses.
• When she hallucinates, I do not contradict her as that confuses and upsets her, leading to temper tantrums, even violence. In such situations, I do not disturb her reality; just try to gently change the topic to happy events in the past that I think she may remember. Sometimes this is difficult as she can be very persistent.
• Be aware of small signs of change in behaviour or appearance as this could indicate minor strokes that dementia patients can have.
• I try to keep her engaged – in conversation, which can be challenging (some days she is silent despite my best efforts), or by helping her play games like Ludo. Watching TV or listening to music is good, but I have to be careful about the music I play as some of it makes her cry (perhaps triggering a memory). I try to get her to look through newspapers and talk about the news to keep her aware of the present.
• Convulsions are common and the frequency increases over time.
• Physiotherapy is very helpful for both mobility and stimulation of the brain.
• She gets frustrated trying to express herself coherently. At times like this, you have to say things for her, make sense of what she is trying to say and hope you get it right. If this doesn’t work, it’s best to gently steer her to another topic.
• Be prepared for disorientation: Some days she does not know where she is and may mistake her home for another’s and ask to be taken home.
• She finds pleasure in little things – when people come to visit, some extra attention and throws tantrums if she is not given chocolates.
• Celebrate every ‘good’ day and enjoy her company.
Update: We are saddened to hear that Paro's mother passed away but this piece is still very useful for other people in similar situations
