This post first appeared on the Ziauddin University Atlas.
When the same eyes that have once looked at you with adoration haze into a struggle for recognition, it does a little more than break your heart, doesn’t it?
Dementia, described in simple terms as a disruption of the brain’s functioning leading to behavioural changes and loss of memory, is easily – and sadly – one of the hardest ailments to deal with, simply because of the emotional implications for the patients and their families.
The ageing patient might not recognise who you are. They may think it’s the winter of 2012; you tell them it’s 2018 and the heat wave is bad this time. You cut out a few slices of a rosy apple for them and they will keep it in their mouth – chewing and swallowing long forgotten – till you chide yourself for not giving them an easy-to-swallow meal of mashed bananas and warm soup. Your back may ache from helping them move around because sometimes, they may just forget that walking requires you to move a leg. They will be irritable, anxious, confused. But so will you. They will see the shadow of a man where your favourite curtains hang and they will tell you how their dead relatives came to visit them. They may occasionally get scared because they will feel ants and mice scurrying around their bed.
But it’s okay. It really is.
They say old age is synonymous to infancy and it’s very, very true. The same unconditional love and inexhaustible patience that was once lavished upon you needs to come full circle; they need you the way you once needed them. And the kindest way to show them this love is by honouring them and giving them a life of dignity.
Medications will definitely do what they are supposed to do but let us not undermine the power of some psychological management here.
What can you – as a family – do to give them a life of dignified comfort? Here are just a few out of the many things that you can do:
- Talk to them gently, patiently, respectfully. If you are talking about them in their presence, say, “Mom is not feeling too good, we need to see her doctor,” instead of “She’s not feeling too good so we need to take her to the doctor.”
- Greet them cheerfully whenever you see them. Introduce yourself if they fail to recognise you.
- Place a large wall clock in the room. Tell them what day and time it is.
- To reduce the risk of trips and falls, don’t clutter the room.
- Keep the room well-ventilated, but dimly lit. Too much light in the room can aggravate their anxiety.
- Keep your conversations short and simple. Avoid lengthy sentences that may agitate them. Speak slowly, using simple words.
- Be patient when they repeat certain phrases or ask the same questions again and again.
- Engage them in easy, manageable activities that they can enjoy.
- Do not, at any cost, blame them for being ‘lazy’, ‘dramatic’, or ‘uncaring’. It’s not their choice. Remain calm if you tend to get frustrated.
- Be attentive to their body language.
- Don’t stand too close to them while talking. It may intimidate them.
- Include the person in conversations instead of speaking on their behalf or completing sentences for them.
- Listen to the person. Give them plenty of time, pay attention to their feelings.
One of the gravest mistakes that you can make, however, is self-neglect. It’s important to acknowledge your own needs, too, and look after your own health. You can not be expected to look after someone else when you yourself are not at your best. Eat well, keep yourself hydrated, have a strong support system that you can turn to when in need. Denying yourself help will not make you more responsible or the more loving one, it’s natural and only necessary.
Dementia is not easy to deal with; it’s painful, it’s cruel, it’s heartbreaking. There will be many tears of frustration, a few of helplessness, some out of fear. There will be more than a few sighs of exhaustion and quite a few breakdowns. You will begin to question everything – why is it happening to you, when will it all be okay, does God even exist? You might even look enviously at your friends enjoying fancy meals when each of your own are caught in a hurry, haunted by thoughts of a questionable prognosis and the sad reality that your elderly loved one is no longer able to share their favourite meals with you. Your own anxiety will become a frequent visitor, and your life will have taken a path different from those around you. But it’s okay, it’s really going to be okay. You will – in your own capacity, at your own speed – grow; you will learn to master the art of patience, you will learn new skills as you care for your loved one, you will strengthen relationships. You will also feel your heartbreak – first all at once, then over and over again at each missed reflex and each reminder of where this could lead to – before you feel it soften into a much kinder, more compassionate, more emphatic one that will have learnt to call out to its Lord as a form of self-reliance. And it’s very advisable to reach out to a professional or to support groups to deal with your own caring mechanism.
So as you and your loved one gracefully transition from fighters into survivors, remember that the crux of human life lies in its dignity, in love, in kindness. Sometimes, medicines and doctors are not enough.
The sun was created to set but the morning is also a beautiful reality.