Diagnosis day - Receiving an official Alzheimer's diagnosis.
- LJM
- Oct 6
- 3 min read
On 21 November, 2020, the phone line was unclear. All I heard was, ‘Are you OK with receiving your Mum's results over the phone, or would you prefer to wait until you're home?’.
Distracted by the noise of a busy supermarket, I responded, ‘No, it’s fine, you can tell me now, and I can share the details with Mum, once we’re home.’
We assumed she might have had a stroke at most. The next sentence was a shock: ‘Right!... She has what we call “Alzheimer’s in dementia.” Mum often joked about ‘going a bit funny.’ How was I supposed to tell her? I was already acquainted with dementia since my Nan had lived with it for two years before she passed away.
I recall my Mum giving me an intense gaze as I took the call… ‘Well, what is it then? What's going on?’ she demanded, and I replied, ‘I'm so sorry, Mum, but you have been diagnosed with Alzheimer’s.’ ‘SO?!?!?’ she retorted, ‘I'm fine.’ She kept repeating this. Deep down, I felt she already knew. I hurriedly finished the shopping, rushed through the checkouts, and quickly walked to the car, holding back tears. Once in the car, I felt cold and slightly numb, trying hard to be strong for Mum, as I couldn’t imagine how she felt. I instantly felt guilty for delivering such an awful piece of information to her so publicly, something I will live with for the rest of my life, shock took over that day. We burst into tears, and I reassured her, ‘Everything will be OK, we will figure things out.’
Driving back home, I didn't let go of her hand, a million things started to whirl around in my head. Once we arrived home, I informed my immediate family without giving us time to process the news, and then the calls demanding ‘tell us everything’ started. My advice after receiving a diagnosis is to give yourself time first, or you’ll be caught up in answering everyone else's questions, and neglecting your own.
I took a day or two to process things, and wrote down any questions for her follow-up appointment, to ensure Mum got all the answers she needed. I've lost count of all the calls to various people, emails to doctors and specialists, appointment letters, texts from family asking how she was coping, more appointments, reviews, scans—I’ve lost count! But here we are now, 5 years later, and she remains at home with us, her family, in the familiar surroundings of her home of over 40 years.
There’s no right or wrong way to receive such a devastating diagnosis. How do you process a life-changing sentence? You don’t! You must continue living each day as it comes, talk with your loved one as much as possible, to ensure they have their say in their ever-changing future, even the tough parts no one wants to discuss. Ensure their will is current, arrange POAs while they are still able, and put everything in place to maximize their security. Give yourself time to process things before you contact family members.
A part of me truly died with her that day. It was so difficult seeing the immediate change in some of my family members. I became the information source, and she faded into the background. She noticed this and it hurt her feelings, ‘Why don’t they ask ME?' 'Why aren’t people asking ME if I am okay?’ she asked.
Something that has stuck in my mind, in the midst of high emotions, Mum turned to me and said 'Why haven't YOU got it? Why am I the one to have it? I'm a good person'.
Whilst this is something I never would have expected to come out of her mouth, I had to understand this was said through fear, she wasn't thinking straight and was starting to panic. I assured her as upsetting as it was, dementia can come for anybody, it doesn't matter if your a good or bad person. We all needed to process this news, and allow time to adapt to a new way of living. She admitted she had spent many nights crying herself to sleep, knowing that what she had couldn't be cured, and in ways now knowing her fate was dominating her thoughts.
Her first and only request going forward was 'Please do not put me in one of those places (a care home), kill me!'. She was clearly devastated, I had no real words of comfort other than, 'everything, will be ok, you'll never go through this alone, we're all here for you'. She found some comfort in this, but sadly it wouldn't last for very long. I recall it took nearly a year for things to calm down.
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