I don’t regret our experience, good or bad, as it ensured mum was diagnosed, which started our journey of learning, the challenges & realities of living with dementia. Crucially it gave us back control. We knew the enemy, and that reduced the fear of the unknown. This is our story from a caregiver’s perspective.
I wish I had pushed harder to get that diagnosis earlier in hindsight. Now, I know that an early diagnosis of dementia can mean that you have more options, interventions and drug treatments that can slow the progression of the disease. Who knew the process of getting a diagnosis would be so hard?
It is easy to see why some people are diagnosed much later with over 100 lesser-known types of dementia with more symptoms than memory loss. It’s easy to dismiss these small changes, especially with memory to just getting older, but it’s not.
In our case, mum started to exhibit memory loss, and it developed pretty gradually. It became more evident as her repetition increased, that she’d get confused more quickly, and now when I look back, her increased frequency of falls should’ve been another warning sign.
At the time, mum always saw the same GP. Mum allowed me to accompany her, and after a while, I tried to get her to open up about her memory issues. But she refused to speak to the GP about it.
I had spoken privately with the doctor about my concerns, but there was nothing she could do unless mum herself raised the issue.
That began a long, drawn-out process of my trying to convince mum to talk to the doctor, and the doctor trying to ask questions, but mum pushed back and always said some variation of:
‘there’s nothing wrong with me. I came here to talk about my chest, not my memory, that’s fine,”
I didn’t push mum as much as I should’ve as I didn’t want to alienate her or lose her trust and just continued to attend appointments with her. The doctor got mum to submit samples of everything to test and rule out other causes.
Months passed with no diagnosis.
One day, something clicked, and mum agreed to do a mini-assessment. The doctor was great; whilst she chatted about general things, she dropped in questions about time and date, where she was and asked her to remember and repeat certain words and identify everyday objects.
Based on her assessment, we agreed that she would refer mum to the memory clinic for further testing and a scan. It took months for the referral to come through.
Every week, I would prep mum with the idea of going to the memory clinic that our appointment was approaching. At this point, I wasn’t sure if it was dementia. I was looking to rule out that it wasn’t some other brain condition or tumour. Funny when I look back on this and how I internalised it.
I had talked with my family as they had seen these changes in mum and explained the process of getting a diagnosis. They agreed on getting a further assessment. I felt great that they would support me by accompanying us to the appointment. Based on what I read online, it suggested at least two family members, one to help mum and one to handle any administration during the evaluation.
In our African culture, we don’t have a word for dementia. The word we have literally translates to someone being crazy
Typically families deal with it quietly in-house, and it isn’t discussed as an illness. It’s just they’ve become a little bit crazy. I don’t think I was aware of any other family member that had dementia before mum.
I thought all was ok with my family, that they were supporting us but instead, we hit a new obstacle.
The day before the appointment, an intervention occurred that I didn’t see coming. I had prepped mum; she was ready to go to the memory clinic. A family member was going to accompany us and drive us there. But instead, a family intervention occurred.
They came to mum’s to stop her from going to the appointment.
What was the point they argued? She’s not ill. It’s her age, and even if it is, what are they going to do?
I tried to explain that we needed to know what the problem was, it could be a brain tumour, so I wasn’t going to let this go without mum getting a scan.
Of course, the idea of a scan was used against me as mum was scared of them and didn’t want one. Mum and I historically had not been close, so it came as a surprise to learn that she’d been sharing her fears with them, describing the questions asked by the doctor as babyish and embarrassing.
Nobody had bothered to educate themselves on the possibility of dementia or what an assessment entailed. Instead, mum’s mini-assessment was used as another weapon to argue against going for a complete evaluation.
I learned that the family hadn’t looked at the address of the memory clinic until the day before and realised that it would be at the mental health hospital.
The memory clinic had been moved from the main town hospital (which we live opposite) to one on the other side of town and is locally known as the mental asylum. Historically it was a mental asylum but changed its name to Adult Mental Health Services.
So it wasn’t any surprise that once my family learned that the memory clinic had moved there. It brought up all these cultural ideas of being crazy, especially if she was going to a mental asylum. I tried to correct them, even telling them that the memory clinic was located in a separate building from the main mental health hospital.
As we argued, the worst words in the world got thrown out,
“mum, you’re going to the crazy hospital”
I knew I lost the battle right there, as mum wouldn’t go there now!
I was adamant, so family members left, vowing not to be part of this. No one would support me, and no one would come with me to the appointment to help support mum. And now mum was terrified.
I was left with my head in my hands.
After years of trying to get mum to the stage where she might finally be assessed, all of it was ruined in minutes by my family’s baggage and fears of mental health services.
I didn’t know what we do now as mum was utterly freaked. I regret there was a lot of shouting and arguing in front of mum.
Now, she had this picture in her head of going to a mental asylum rather than visiting a memory clinic. I could only hope that mum would still trust me and go with me in the morning and we finally get to the next stage – Dementia Diagnosis – The Appointment