Ever curled up in a ball and cried? Cried some more? And then cried again?
Yes, me too.
Alzheimer’s claimed a part of my dad, aged 48. I couldn’t get out of bed, I was stuck, and I was trapped. I could have sobbed for a lifetime, I felt on the brink of a breakdown for weeks and my chest constantly felt like it was being tied together, I was shaky, felt dazed and went into meltdown.
Today 44 Million people are living with dementia and, yet I felt like the only person that had ever been through this, I was in a black hole. I was 18. I thought this era in my life was supposed to be wild and stress-free so why was I unable to focus on anything? Why was I in a state in which I couldn’t enjoy a single thing? Why couldn’t I sleep at night? Why was I depressed?
My Dad was told he was suffering from UK’s biggest killer. My Dad had dementia and I couldn’t change that. I was helpless and was suddenly worrying how to look after my dad rather than worrying how to graduate and start my degree.
Now picture dementia for me. Picture a person with Alzheimer’s and think about what you see? Who’s that person looking back at you? Is it a grandma or a frail 98-year-old? Often people assume dementia is the old people’s disease. And yes, it is more common in people aged 65 and over, however, please I beg you, one thing to take from this is that it can affect anybody, it affects mothers, brothers, sisters, fathers, aunties, uncles, cousins, friends and grandparents. It affects anybody at any age.
The reality of Alzheimer’s is that when it strikes, it strikes. It hits hard and it will hit anybody. We can’t cure it, we can’t stop it and we can’t slow it down. We can’t second guess it and its future is unknown. So, let’s embrace it and enjoy every minute we have. Let’s not make Alzheimer’s a secret, let's talk about it and make memories with those who won’t remember so that we can remember for them.
So here I’m asking you to be patient. Be patient with those with dementia, they’re trying hard to understand you, they’re doing their best to be nice and be sociable but remember their neurons in the brain are slowly dying. Be patient with caregivers, we are tired, and we are sad, we are battling a disease with a weight on our shoulders yet we are smiling, we are trying to be good friends and we are trying to keep in touch with you all. Be patient with anybody who is different or struggling and most importantly be patient and open minded with everyone.
Some people will see me and pops in the street and we might look odd, I might hold his hand to reassure him that he is safe and that he won’t get lost, he might forget to pay for things in the local shop, he may lose inhibitions and dance in the supermarket, he will struggle crossing the road and he might not recognise you. That’s okay. Still smile at us. We will smile at you. We are happy, we are just fighting a few difficulties and we may have fought a few this morning. Pops may have struggled to dress and tried wearing two pairs of trousers or may have struggled to make a coffee. We are happy to be out the house and we are making memories that I will remember for pops.
There are times, where I worry and I cry. I worry whether pops will walk me down the aisle one day, I worry whether he will ever meet his grandchildren and I worry he will forget me. Our roles have changed and now we both look after each other but we love each other and will always love each other. He may get angry at me but remember, aggression is not a symptom of dementia, it is a symptom of their needs not being met.
So I’ve finished my rants and rambles and will leave you all with this final thought.
With love everything is possible and in every day there is a reason to smile.
Love Annie xo