The pre-diagnosis years
In this blog, I want to reflect on three signs, that in hindsight, make it clear that my mother had been silently grappling with dementia long before her diagnosis.
Letters? In this day and age?
A year or two before diagnosis, we started to receive letters from Mum, not really saying very much other than her cats are fine, she misses us and that she would love to see us soon. No alarm bells there. But letters, in this day and age? Up until then, we always used to share messages and photos on email.
Like most of us, Mum spent much of her working life relying on a computer. She was a renowned zoologist and spent many fulfilling years at the Open University, a pioneer in online distance learning. My sister recently pointed out to me that the letters were probably a sign that mum had stopped being able to operate her laptop as she struggled with her memory.
Turn on the laptop: It doesn't turn on. Why? It's not charged. Where's the charger? Okay, found it. Plug it in.
Boot up: Log in details. What's my password? Found it in my notebook (don't tell anyone I've written it down).
Compose and send an email: Open the browser. Click on the Gmail bookmark. Log in details. What's my password? It's not in my notebook.
Now what? Give up. Where's a pen and paper?
The modern 'Digital' experience isn't designed with people facing memory problems in mind. I know that some people with dementia have found smart speakers and tablets to be useful alternatives, but this typically requires adopting them before experiencing dementia symptoms. The voice interface provides access to online searches, music, reminders, and communication with friends and family.
All that being said, there's nothing wrong with receiving a good old letter. Receiving a letter from your loved one doesn’t necessarily mean they have dementia! However, when combined with the following signs...
Travel anxiety
Mum loves to travel. She’s been to some incredible places in her time. She often fondly recounts her visit to the Galapagos, which was a dream come true for a zoologist like her.
However, her last solo trip abroad raised concerns. She had travelled to southern Spain to join a walking holiday. A few days into the trip, my sister received a call from the guide. The guide reported that Mum seemed confused, anxious, and incoherent. I called her to check in. The guide was right - Mum wasn’t making much sense. I did my best to calm her, but it was clear she was still upset when I hung up.
Mum has always been an anxious traveller (I know, it contradicts the 'loves to travel' statement, but I believe she felt the allure of nature was worth the discomfort). At first, I dismissed this experience as a mere bout of anxiety. However, it soon became evident that it was a more significant event. It highlighted her unease with unfamiliar surroundings. Dealing with unfamiliar people and places likely contributed to heightened confusion and anxiety.
Safety first
Mum returned home safely from Spain, but not long after, my sister received a call informing her that Mum was being taken to the hospital. Mum had visited her GP surgery in a state of confusion, and the staff had evidently decided that the safest course of action was to send her to the hospital rather than allowing her to make her way home. Mum, naturally, couldn't comprehend why she was being sent to the hospital when she felt physically fine.
When I visited, my sister explained that Mum was on a waiting list for a 'scan.' She had already been there for nearly a week, and she was upset and simply wanted to return home. Eventually, she underwent the scan, and I was able to check her out and take her home. However, I never received any information about the scan results. Getting any information without lasting power of attorney is difficult. It was only many months later, after we had established enduring power of attorney and built a relationship with her GP, that the results were finally revealed. They were 'clear', as I recall…
Following this, Mum became highly suspicious of visiting the doctor, making it challenging to persuade her to attend check-ups. All in all, it was a highly damaging experience to her mental health, and my family gained little insight into her condition. I gather that this is not an uncommon occurrence. From my conversations with people living with dementia, I've learned that in the early stages, prior to an official diagnosis, it's exceedingly difficult to get clarity on what’s happening and what support is available. Your loved one may be unable to explain their situation, and without lasting power of attorney, you can be left in the dark regarding their healthcare record.
To anyone out there going through this challenge, I recommend requesting your loved one is assigned to an individual GP for continuity of care if they haven’t been already. This enables your family to build a relationship with your loved one's GP. If you have concerns about a loved one, it is also a good idea to start thinking about making a lasting power of attorney as soon as possible.
Also, Alzheimer's Society have some good resources on the subjects discussed in this blog:
Anxiety and Dementia
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/anxiety-dementia
Lasting power of attorney
https://www.alzheimers.org.uk/get-support/legal-financial/lasting-power-attorney
