I had my lovely cousin who is more like a sister staying with us earlier inthe year. She asked me a great question “how did you know this was happening toyou”?
The first thing I was aware of noticing was that I became clumsy and wasdropping things regularly. I’m usually about as graceful as a hippo but thiswas next level. Then I started losing things and I knew something wasup.
For those of you who know me well you know that I am a card-carrying memberof the neat and tidy society and I keep things clean but more than that I keepthem organised. Because I have such an orderly world losing things happensrarely. If I noticed I have lost something I only had to rethink my steps andhey presto the missing item was unearthed.
I was trying to describe this to a friend yesterday and the only way I canexplain it is to imagine there are two Rachel’s. One Rachel takes note of whatshe has in her hands or handbag and looks after them as per usual. The otherRachel picks up things, puts them down and wanders off – she is a problem! Ihave a few things that I have been losing on a daily basis and Greg has been soincredibly kind and helps when he can to look for lost items.
When this started happening, I would get quite upset because it’s like yourown brain is hiding objects from you like a really badly behaved play friend.I’m learning with time to just lean into it and accept that this is a part ofmy new normal.
Over the weekend I lost a diamond earing that was given to me by someone Ilove and was handmade specially for me. I did the usual stuff of trying toremember when I last had the earring in my hands and nothing came.
I stood on the front lawn and realised I had two choices. I could get angry,beat myself up and feel sick with regret or I could just say “that’s OK I stillhave one left and if the other one turns up down the track that will be abonus.” I’m making that sound easy and it wasn’t but I do hope that thosemoments get easier with time. I really love and care about that Rachel thatloses things, she is a part of me and she really is doing her best. That is allwe can ask of each other.
Around December 2021 I had gathered enough data and realised that I neededto go get some help. I gave myself the holiday break and decided to tackle thiswhatever was happening to me in the new year. I asked family and friends ifthey had noticed a difference, some had and others had not.
I think we underestimate how talented we all are at putting on a brave faceand getting on with life. We are taught when we are children to reply to thequestion “How are you?” with the answer “I am fine” and there is this unwrittenrule book that says something like – don’t let people see what’s reallyhappening in our home, it’s nobody’s business. They are both OK things tobelieve but they come unstuck when you need to go further afield and ask forhelp.
The other lesson I learned during this time was that unless you really backyourself it’s easy to go along with others’ opinions. When I initially went tosee my GP, I could see that he thought I was being a bit of a drama queen andwas reading too much into too little. I could easily have gone along with thatreasoning for some time and I am really proud of myself for sticking to myguns.
I knew something was happening to me and everything I had read on thesubject up to that point told me that getting a diagnosis as early as possiblewould help. To be honest it doesn’t actually help me at all but I can see ithelps others – they have more time to share with the person they are losing.
I pushed hard and was given two cognitive tests which I failed spectacularlyand then I had an appointment to see a specialist at Masterton Hospital and Ihad a date to have a PET scan. I picked up a copy of the PET scan report frommy GP this week and the conclusion at the bottom of the report reads “Theseappearances above suggest early onset Alzheimer’s disease”
There was a part of me that needed to hold that piece of paper and to readthat line above in order to truly believe this is in fact happening to me.Never underestimate denial and how far we will go to believe the lie over thetruth.
On the day I got the official results over the phone I asked Greg how hefelt about them and again my husband was able to voice my thoughts and feelingsinto one sentence.
He said “I would have been genially shocked if the test results said youwere fine, we would have had to start all over again to work out what’shappening to you.”