Today is cupcake day with the Alzheimer’s Society! Today is also the day I talk about my experience of Alzheimer’s disease.
It isn’t something that I talk about very often because it isn’t a straightforward story. It’s a tale of how one disease can change the dynamics of a whole family, without anyone even realising it is happening at the time. I don’t think you can fully understand it until you have seen it first hand. My experience will be different to everyone else’s, but I want to share it to help anyone who has a family member going through the same. I want to tell you what I saw and what I learned.
We all have elderly relatives who have become more forgetful or confused but Alzheimer’s is more than just getting old. It can completely take your loved ones away from you right in front of your eyes. I remember when my Grandma started to show signs of Alzheimer’s I was in College at the time.
Just to set the scene my Grandma was one of those old school, independent women who took no messing about from anyone. She had a home remedy for everything, very strong opinions and hundreds of interesting stories from the second world war and life over the years.
I came home from College one day and she was at our house, it was a normal afternoon. Cue stage one of the disease, the repetitive phase.
We had a big discussion about me applying for Medicine at University, wanting to become a doctor and how proud she would be. Two minutes later though, we had the whole exact same conversation again! On the third time round, I pulled her up on it. She apologised, she had no idea that she had already had the conversation with me. We laughed it off, she must have been tired that’s all.
This continued over the next few weeks, lots of asking the time, where people are, the day, whats for dinner, asking for tea when she had just finished a cup, all five or six times in a row. Sometimes she caught herself and would look upset or worried. She would apologise saying, Have I already asked you? Am I annoying you? Clearly seeing our exasperation too. It’s honestly quite hard to answer naturally by the fifth time.
Next came stage two, I call it the obsessive phase. I don’t know whether its unresolved issues or totally random, but people with dementia seem to focus on one thing from the past. For some reason for my Grandma it was her ‘young children’. She was always trying to find them and totally confused as to how many children she actually had. 3pm every day she wanted to go to school and pick them up. 5pm everyday she wanted to go out and find them as they hadn’t come home for tea. This turned into wandering at all hours looking for the children that she couldn’t even name. And my goodness, was she an over protective mother to these invisible children!
We had lots of conversations and telling her offs, like, name your children, name your grandchildren… so who else are you looking for?! ‘My other children’ she would say.
But what do you do when you love someone and can see they are not well? You try to help them, you want to fix them. You keep trying to remind them and reteach them things they are forgetting.
Noone explains to you at the beginning of all of this, that it is a constant downhill progression . Noone tells you to grasp every moment you have because it will only get worse. So you do your best to keep trying to ‘help’ them and correct them.
Unfortunately our approach probably brought on stage three quicker than maybe it should have been. Stage three was the angry phase and stage three was much fun indeed.
To someone who didn’t know her she just seemed like a pushy, old lady. To us she was becoming a stranger. It was her against the world and none of us were going to get in the way. She didn’t want anyone to tell her she was wrong. We were no match for her, she was like an escape artist always slipping past us. My grandad was not the best watchman to employ, I’m sure he would give her a headstart before alerting us. Just the quick phone call saying, ‘Hiya shes gone again!’. It became normal, we would all get our coats on and get out looking.
Her personality was such that she had taxi drivers and bus drivers on demand. They had no choice but to take her where she wanted to go and she would be going for free or else! So she could get quite far, quite quickly.
All this anger and frustration built up inside her. She retraced her younger years , trying to make sense of her world as it changed in her mind. One night she made it back to her old house in another town. She demanded the young lady who lived there now, gave back her children. Luckily we found her and apologised to the traumatised woman, as my dad pulled her away down the street looking like he was abducting her.
The local police knew her well too, for all the times she disappeared out of our sight. I’ll never forget though, one day she rang our house, our number she had memorised very well, she had demanded someone use a payphone for her. She spoke to me and sounded so confused. She had had a moment of clarity, she told me where she was, she said she was scared because she didn’t know how she got there or how to get home and had no money. Most of the time though that fear and confusion came out in anger and that anger gave her a strength we didn’t know she possessed.
We all got a swing of the handbag at some point, which seemed to have everything in it but the kitchen sink. She was so determined to power on. We even had to alert all our local taxi bases to call us first and stall her if she turned up.
My Grandad couldn’t understand it at all, he took it personally a lot of the time. He was the first person she started to forget. She even kicked him out of the house a few times thinking he was a burglar. We were all tired by the constant night time dramas, it was upsetting but also there were times when you just had to laugh. She hit a policeman with that handbag once and did not apologise for it. We had some real comical situations looking back but it didn’t feel like it at the time.
It was hard as a teenager in a smallish town though, the last thing you want is to be with the ‘crazy lady’. I didn’t know what was normal, what dementia should look like, or how to make it better. None of us did we were making it up as we went along….
Read Part two for the rest of the story, stages four, five and my tips on living with someone who has dementia.