The journey to know “What is going on”

June 2020 – August 2021

Doctor Google, I have researched on many pages; under many headings and keyword searches. I have dug deep and not just read the top three positions or just the sponsored links. I have come aware with a gut feeling I know what we are dealing with. I still do feel confused, what should I take on board, what do I believe, what do I take away, how do I collate what I have read and best document what we are seeing and experiencing with Wendy?

I am gravitating toward something, even though I am trying to discount it but it seems like the only probable cause but I still wonder. I’m not in denial; there is something going on but I don’t want Wendy to be misdiagnosed.

Will knowing what I think it is change anything? Will knowing, put me back on the path to address more deeply the five, six or even seven key issues I see as singluar things? Or are three or four of those issues really just under one umbrella together and the others are still singular problems to solve?

I’m driving people close to me crazy with diverting conversations to be about Wendy. I’m sorry family and friends, I was after some clarity and perspective. You are a safe place to voice my concerns; to hear them and feel them; to try to understand what I was seeing by retelling it. For some of you I have shared videos and audios of how Wendy is at home. Which is different to what you see. I needed you to see and hear the the proof.

The internal dialogue was driving me crazy, was I looking for things to match what I was reading, making them up, attention seeking, looking but not seeing the obvious? And there are so many variants of Dementia! All similar symptoms but it is the timing of each and how it presents that determines which one someone has. But when I had been calling each symptom its own problem it was difficult to determine what had started first.

I write this article because as time has gone on through researching and listening to parents and siblings in my situation; we all sound the same. We are confused by what we are living with.

Through my research the reocurring content I have seen has been of siblings like myself who have experienced dementia with parents first; when initially Dementia is experienced with moments of memory loss, then comes all the odd behaviours and personality changes.

Simply you are not ready to be confronted with a very different way for the same disease to present itself in your sibling and you make excuses and reasons for the behaviour changes being witnessed.

Downs are known for having quirky behaviours and we are used to them coming and going; mostly a new behaviour creeps into our lives, we give it some air time before challenging for change. Now though we are not being able to persuade change; any pressure upon our loved one to change a behaviour incites anxiety, anger, tears and drama. The very behaviours that are often foreign to us, as most DS people are loving, caring, gentle and generally are all out to please. So we are all confused and feeling challenged.

My conclusion; based on what is best for Wendy, me and everyone I was talking to; was to find out. Once you know you know; good or bad. Once you know you get a part of your head back to deal with the next thing with more clarity, simply by having the right glasses on.

So I rolled up my sleeves to get started on the jouney for a dementia diagnosis. Where do you start? It felt a bit like a chicken and an egg sort of situation. There is no clear path, everyone presents differently so the way to diagnosis is far from defined and is varied and even less information on Downs than the masses.

Getting Started.

Wendys doctor had retired at the end of 2019 and with COVID we had been lucky to not to need to have a face to face consult with anyone and I didn’t have a relationship with any other doctor in that clinic or have another of my own. So I started asking around for a GP who had experience with Downs Syndrome and Alzheimers locally I concluded that a doctor with some experience has to be better than one with none.

Wendy has a lovely NDIS support co-ordinator who I touch base with regularly. So I started with her to enquire if there was any known GP through her disability support networks.

I called a friend of mums who has two daughters with Downs and asked if she knew anyone. I called mums nursing home as I did know they’d had a couple of Downs residents. The nursing manager did give me a name of one GP who she said was a lovely person and was GP to one of the Downs ladies she’d had in her care on the dementia wing.

I called Dementia Australia; although good listeners and have great PDFs and supports they don’t give recommendations of doctors in any niche – a pity as it would be a valuable resource, as a carer one doesn’t have time to test every doctor locally.

I spoke to Downs Syndrome Australia and Victoria lovely people but not really much help in this instance. Out of the calls though I connected with local down syndrome facebook group – Very nice but wrong demographic for our situation as all the downs are younger there and from asking there was an awareness of two people with potential signs of Alzhiemers but not yet diagnosed; just changes being noticed. One of the admins of this group was very supportive and gave me the details of a Downs Syndrome researcher in the UK who herself had a Downs Daughter with Alzheimers.

With the awareness of the local facebook groups existence I then went on to search within Facebook for “Downs Syndrome and Alzheimers” then came across a group – Down Syndrome and Alzheimer’s/Down Syndrome Regression Support. Wow I felt I had found “my people”. So many stories of sibling carers like myself, so many parents too doing the difficult work in their old age.

Through the posts I saw too, that many parents – Mums mainly, that either have passed as a result of or have alzheimers themselves. Many posts outline the end in detail which makes for difficult reading. The awareness is invaluable though.

I highly recommend anyone reading this who is caring for a DS and thinks they are regressing get approved to be on this page. So much support and love.

I had to start somewhere so I made a phone appointment with the GP recommended by mums nursing home. I chose to speak with her first before she met Wendy as I didn’t want Wendy to sit through all I had to say. She had only had that one patient and she was concerned she wasn’t as experienced as I wanted but as I pointed out you’ve followed one person all the way we are just at the beginning so she is more experienced than any other option I have.

An appointment was made for her to next meet Wendy and assess her as she saw nessessary with little input from me.

At the appointment she chatted to Wendy about pets and did blood pressure, had Wendy get up and walk across the room. After Wendy sat down again the GP said to me that she “would like to see Wendy again in 6 weeks to get to know her a little better before doing any referrals to Geriatrician or Memory clinic” Which was the outcome I was hopeful for to move forward for a diagnosis but not so fast Julie.

I did leave the medical clinic a little annoyed; as 6 weeks more seemed a long way off. With a positive attitude I thought ok I have to present a case that shows the progress I am seeing as what can anyone see in a 15 minute doctor consult. If I saw Wendy only for 15 minutes every day it would be unlikely I would have noticed much change at all either.

At this point I pushed my sleeves up further and really got to work. I obsessively document everything and I’ll outline in more detail in the next post.