It’s also a day for people to tell their stories about the disease and how it has affected their lives and the lives of their friends and families.
20 year-old Dubliner Laura Byrne is one such affected person. Her grandmother, Julia Carmel Byrne, has had Alzheimer’s for 11 years and is now unable to feed herself, speak or walk. Julia turned 80 last week and it was a very emotional time for her family, whom she no longer recognises.
Coming up to her grandmother’s birthday, Laura decided to write an open letter, giving heartbreaking insight into what it is like to care for someone with the condition. She posted the letter online, where it has since been shared over 4,000 times.
Speaking to RTÉ LifeStyle, Laura explained why she wrote the letter.
“I wanted to raise awareness of Alzheimer's because it is something that affects so many people. It's something most people know of, but yet we don't talk about it often,” she said.
“The majority of people don't realise how bad it can get. How bad the deterioration can be, how far it can go, the different stages, and ultimately how your loved one fades away to nothing before your eyes. There is no known cause, and there is no known cure. This needs to change.”
Laura said she wanted people affected by the disease to know they are not alone, that other people are going through the same struggle and there are services out there that can help (for example, the Alzheimer’s Society of Ireland http://www.alzheimer.ie/Home.aspx).
You can read Laura’s honest and touching letter below.
My Nana is 80 today.
She doesn’t know that because she has Alzheimer’s. She has not recognized us since the age of 72. She has not been able to speak since the age of 76.
She has not been able to feed herself since the age of 77, and she has not been able to walk since the age of 78. All of these things, she now forgets how to do.
Born in the year 1935, she had a tough life. She raised 6 children in a tough part of inner city Dublin, as well as running her own business. All the hardship aside, there wasn’t a person more positive or uplifting.
She took care of us when we were little. She took care of us when we were sick. She took care of us when our parents were sick. She taught me how to tie my shoelaces.
Unfortunately, Alzheimer’s is not just forgetting someone’s name, mixing up which grandchild is which, or forgetting your own age. It is much more than that, as we have experienced over the past 11 years.
Her husband passed away 6 years ago. Due to her condition, she could not even attend the funeral. We told her he was gone. She did not understand. She no longer knew his name, or who he was after 50 years of marriage.
It is heartbreaking to see her son embrace her, and to see nothing register on her face. She does not remember how to return a hug. She cannot say hello, and the man sitting beside her is now a stranger, no longer her child to her.
I cannot fathom how it must be to not be able to voice your thoughts or feelings. When you are ill, who is going to know? How long before anyone realizes?
No longer vibrant or active, my Nana is now confined to a padded wheelchair and sometimes a padded bed with railings. She no longer has the power to keep her own head upright, and stares at the floor or ceiling on a daily basis.
With Alzheimer’s patients, there is often an aggressive stage they go through. My Nana was no different.
On one visit, I was greeted with screams and shouts as she shook in her bed. She pushed me away, all the while cursing me. I had been rejected. I was 16. I left the room teary eyed and red faced. I am her granddaughter but she does not know that. I took a few moments outside her room to catch my breath and compose myself.
Then I returned to her bedside, kissed her on the cheek, stroked her hair and held her hand. This time, I was greeted with a small faraway smile. It was like I was a completely different person to a few minutes beforehand. Because, to her, I was.
Now in these past few years, she has become a lot more relaxed and subdued. But again, with time, comes rapid deterioration. On visits, we are lucky to receive any eye contact, let alone a smile. There are good days, when we get a few seconds of eye contact every so often. She may smile, and we may even get a little giggle out of her.
Those are the great days, and the days that make it worthwhile and balance the rest. Then there are the not so good days, when for an entire hour she will make no eye contact or reaction. It's like you have become invisible and are not there.
I like to sing, and I like to think I got that from my nana. For as long as I can remember, she always sang; in church choirs, around the house, and she had a beautiful voice. I have fond memories of being sung to sleep by her, so sometimes when I sit with her now, I sing. Not too loud so as to startle her, but lightly. For some reason, this sometimes creates eye contact. She may look up and look around for the source, and when she finds me, she locks eyes.
Other times I sing, and nothing happens. I sing to what feels like an empty room, and my voice resonates off the walls back to me, a horrible tin echo. But it is worth it for the times she hears me. She does not recognize us, and we struggle to get any reaction out of her on every visit, but it is not her fault. She does not know what she is doing or what is going on around her.
Every single day, I try to remember her the way she was. I do not want Alzheimer’s to define her. She is a person separate from the disease, even if we do not see that person anymore. Alzheimer’s is a terrible disease I wish there was a cure for, and I will never stop hoping that one is found.
Every family that goes through this, I feel deeply for. It is crushing to look at someone who cared for me when I was young and vulnerable, and see how vulnerable she has become.
There is no stopping this disease. There isn’t even a way of slowing it down for her anymore. It is too advanced and has too much control.
When someone dies, we cope by grieving. It is a loss. What do you do when you've lost someone, not physically, but they are no longer really there?
Today is her birthday but she does not know. I am her granddaughter but she does not know.