‘For whatever time we have before I don’t know you, let’s enjoy every moment’ – mum with Alzheimer’s shares emotional letter to her sons
A mum-of-two who was diagnosed with early onset Alzheimer’s at the age of 53 has shared an emotional letter she wrote to her sons about her disease.
Ahead of Alzheimer’s Tea Day tomorrow, Kathy Ryan (55) joined RTE Radio One’s Ray D’Arcy Show to discuss how her life has changed in the two years since she was diagnosed.
She said she had experienced difficulties with short-term memory and cognition for a few years before she was diagnosed in 2014, and had developed a series of coping mechanisms.
“I suppose it was like safety methods, a monthly list like checking oil in the car on the first of the month and taking medication.
“I was losing words, I could hold up a mug and I just wouldn’t have the word for mug, it was just a blank. I could be talking to you and I would get distracted and have no recollection of what I was talking about.
“I would try and park my car in the same car park and do things in a routine manner so there wasn’t the stress,” she said.
Kathy has two teenage sons, Andrew and Matthew, and said she would frequently ask the same questions: “I would ask the guys nine million times, you have a match on when? You have hurling on when?”
After a series of assessments, she met with a team of doctors in January 2014, where she was told she had “mild cognitive impairment”.
She later learned she had early onset Alzheimer’s disease, but didn’t want to tell her children.
“I didn’t want either of the boys involved and watching over their shoulder and watching me,” she said.
At the time, her son Andrew was repeating his Leaving Certificate and was, she said, “in a tough place”.
“I felt it wasn’t fair to tell him, or to tell one son without telling the other, so I chose to keep it to myself until he’d finished the Leaving.
“That was a really tough six months, because they would talk about things in the future that I didn’t know if I would be there for,” she said.
She added: “It’s not just a diagnosis for the person, it’s a diagnosis for the family.”
When she was diagnosed, she was told the average life expectancy was eight to 12 years.
“Although I was diagnosed in January 2014, I could go back two or three years to me probably having it, so did that mean I only had another five years with the guys?”
Kathy added that she believed her disease was “harder on the boys than it is on me”.
“There’ll be a lot of years when I won’t recognise Andrew or Matthew, and I’ll still be there as a constant reminder,” she said.
On the programme, Kathy also read out a letter she had written to raise awareness on World Alzheimer’s Day last year, September 21.
“I love you guys more than life itself, and I’m so very, very sorry that I’m the one whose going to bring such hardship and sadness into your lives.
“Our life has been far from easy, and I’ve always tried to be there for you, and now, not only won’t I be there, but I will be causing it.
“The greatest curse of Alzheimer’s for me is how it’s going to impact you both,” she said.
She continued: “I’ve tried to plan things so that you can get on with your life and that’s what I want more than anything.
“Please don’t let Alzheimer’s take away any more than it absolutely has to. I want for you both to take wings and fly.”
In the letter, she advised her sons to “get up each morning thanking God for being alive” and to “do and be your best in everything that you do that day – sport, college, relationships, chilling out, work or whatever”.
“At night, look back over the day and thank God for all you’ve experienced and the graces he has given you. If someone has hurt you, forgive and let go. If you have hurt someone, make amends and let go. If you have not done your best in some area, commit to do better tomorrow.
“Your day is soon to become your yesterday so don’t let it drag into tomorrow. If you do this each day, you won’t have any regrets, carry anger or leave a trail of hurt people behind you.
“I wish for you love, happiness, joy and peace, wives who will love you as you deserve, and children who will challenge you and work that you enjoy,” she said.
As she reached the touching conclusion to the letter, her voice began to break.
“I love you both all around the world and back, and for whatever time we have before I don’t know you - let’s enjoy each and every moment.”