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Caring for someone living with dementia

Becoming the caregiver of a spouse or a parent is not what most people have signed up for, interestingly enough. The fact that none of us can actually envisage ourselves as old and frail (the human brain somehow does not look into the future to prepare us for our own frailty) means that we are never prepared for it. Athul Gawande in his brilliant book “Being Mortal” poignantly says that we somehow all believe that we are immortal. (He jokes about how many people have loads of stuff in storage – a sure sign that they are going to live forever…only to drive their loved ones crazy having to sort out all their stuff when they die.)

We are never prepared for our own or our loved ones’ frailty. We deny it and pretend that it is not the case. People live on average for about five years with cognitive impairment, knowing that something is wrong before they seek a diagnosis. The same goes for cancer – that lump that we are so aware of, yet we keep on postponing.

Being a caregiver for someone living with dementia is possibly one of the most challenging positions to be in. Most of us fail miserably, most of the time. We keep on wanting to make things “normal”, trying to bring our loved ones back into “our” world. “Do you remember…?” “Look at this – you were so young?” Showing photographs trying to test memories and cajole the person back into our reality is never a good idea.

The patience to be a caregiver does not come naturally for most people. The guilt of not doing the “right thing” – whatever that “thing” is – eats away at you day and night. The mixed emotions of sadness and loss and feeling completely hopeless and useless wake you up at three in the morning, exhausted. We are never prepared for this role. We never feel that we are successful as caregivers.

I looked at caregiving and tried to and why some people do it better than others, especially spouses. Some spouses take on the role in a natural way – what is the magic ingredient? Interesting – when there is affection in a relationship between partners, the role of taking care of a spouse will be easier. Affection. Just that…

In terms of preparing yourself for dementia? There is a brilliant Ted talk by Alanna Shaikh on the topic. Her Father was living with Alzheimer’s, and she decided to start preparing herself in case she gets it as well. The thing that moved me so much is that she decided to become a better person, to really work on being the person that people would want to be around. So that IF one day she has to live with dementia and is in a Care Home, everyone would like to spend time with her and be around her.

The person that you are now will most probably be amplified in your old age. We become more and more who we are. Make sure that when the filters are gone and you become frail that your heart will shine through.

And start cultivating affection in your relationship. Start today. You might need your partner to take care of you one day – start the investment today in being well cared for when you are old and frail.

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