I would really appreciate some advice from people who look after elderly parents, because I am finding my situation incredibly stressful and I don't really know where I stand anymore.
I live with my elderly mother, and I have around five years of observations of changes in her behaviour. I have become increasingly concerned that something isn't right, although there is still no diagnosis and I am not a medical professional.
The things I notice aren't primarily straightforward memory problems. They are more things like poor comprehension, poor judgement, difficulty planning or organising things, extreme rigidity, difficulty adapting when something doesn't go according to plan, disproportionate anxiety or anger, suspiciousness, and some very unusual behaviours around the house.
There have been many individual incidents over the years. Some of them sound small when taken on their own, but there are so many of them now that I find it very difficult to dismiss them as simply being "quirky" or getting older.
I also find that making plans with her can be incredibly difficult. Something can be discussed quite clearly, but then she seems to have understood something completely different.
For example, on Friday I was telling her that I was working late and that it would probably be 10 or 11 o'clock before I got home. She somehow thought I was talking about a bus on Saturday morning. I wasn't talking about a bus at all.
A few weeks ago she travelled into town by bus on her own. She stayed there for most of the day, for around 7 or 8 hours, and didn't really stop for a proper lunch or tea. On the way home she became travel sick.
Since then she has become apprehensive about travelling into town on her own and has wanted me to accompany her.
Until today, I had put myself in the position of being willing to go into town with her. I don't drive, I have my own work and responsibilities, and I don't have much free time, but I thought perhaps this was something I would have to start helping with.
Today really brought home to me how stressful that could become.
We had planned to go into Galway city. This morning she was rushing around and wanting to leave approximately 50 minutes before we actually needed to leave, despite the bus stop being about a 15-minute walk away.
Then there were difficulties around having lunch and trying to make a straightforward plan for the day.
On the way home, our bus was due at 4pm. At about 3:45pm, a bus displaying the name of our destination and the correct route came past. It appeared to be out of service. My mother immediately became extremely anxious and tried to get onto the bus. The driver was actually beckoning her not to board it.
She seemed to think that our bus was leaving early. I was trying to explain that it wasn't our bus and that we simply needed to continue to the bus stop and wait for the 4pm bus.
It became incredibly stressful.
Then there are things like today when she was wearing sunglasses on the bus despite it being a very dull, overcast and drizzly day. I know that in isolation that means absolutely nothing, but when you are living with someone and seeing years of unusual behaviours, you notice these things.
The problem is that I don't know what I am supposed to do with any of this.
She can still do some familiar things. She can manage certain routines and can appear perfectly okay to other people. But I am the person who is there when something unexpected happens, when a plan has to be made, when something needs to be interpreted, when there is a practical problem or when she becomes confused about what has actually been said.
And I am finding myself increasingly having to support, explain, redirect, reassure and adapt around her.
I don't want to take away her independence. I don't want to treat her like a child. I don't want to assume she has dementia when I don't have a diagnosis.
But I also can't pretend that I am not seeing what I am seeing.
I feel as though I am gradually being pushed into a caring/support role without anyone actually acknowledging that this is happening. There are no clear supports in place for her, and there is no support for me either.
Today has left me completely exhausted and honestly quite upset.
Has anyone else found themselves in this position, where an elderly parent can still manage familiar things but becomes increasingly difficult?
I suspect the possibility of dementia but nobody is listening to me.. There is also dishibititions from her. I can't leave a bag in the same room as her and go to the toilet or I will come back and she has her head and hands in my bag just snooping. She is like a kleptomatic toddler. There is just so much happening where I suspect dementia nobody will listen to me. She can cope somewhat ok ish sometimes but then other times she can be so so so very odd.
To make it worse I was chatting on a local group anon and someone explained medical professionals are useless. They want someone to be proactive and on board with their own health but if someone has dementia sometimes they have no awareness into it and it's the last thing thst they do and often this kind of stuff goes on for years until theirs a crisis point and only then is a diagnosis happen.