Over the last few months, I felt overwhelmed by the thought of death. I hadn’t processed what that meant. I feared it, yes but had I looked at what it meant, at how losing mum after looking after her for almost 10 years would feel?
Mum has Alzheimer’s, a life-limiting progressive disease, and spinal cord damage, which means she’s unable to walk now and is in a wheelchair. Most people will die from the impact of Alzheimer’s on the brain as it deteriorates and causes complications as their quality of life declines.
So the question that keeps coming up is ‘Am I Prepared for Mum’s Death?’
Once I knew she had Alzheimer’s, I did all the research to determine what it meant and how it would develop.
And let’s be honest, once you hear dementia, you have all these stereotypical assumptions about it, including that she will die.
I did that work initially, researched like mad because of the bad experience we had at the memory clinic & the family’s opposition to accepting that we needed to know what was wrong.
Instead, the cultural norm was to deal with this in house, not speak about it and not face the reality of the care she would now need.
But that wasn’t my way of coping, I pushed for the expert review and learnt as much as possible about what Alzheimer’s is and how it would develop so that I could be there and ready to support mum through every stage.
Physical & Practical Impacts of Dying
I honestly thought I was prepared. I read everything I could on the end of life planning for mum, all the practical, admin stuff that would be needed. I didn’t get all the practical aspects done before her Alzheimer’s progressed, but we managed the majority.
If you haven’t looked at the end of life planning, check out the My future Handbook, which helps you through the practical process for your loved one and planning for yourself!
But I’ve realised that I’ve only focused on the practical stuff of mortality, and I hadn’t thought of the emotional impacts.
The community I inhabit on social media is talking to other caregivers looking after their loved ones or reading about the lives of those with dementia.
I know mum will die because I’d prepared for that in my head. Still, the recent loss of a fellow caregiver’s mum was very sudden after a short infection, brought it to the forefront of my mind and the reality that I’m not emotionally prepared to lose mum at all.
In my mind, without sounding too morbid, I had imagined a long slow death. Alzheimer’s Society estimates the life expectancy of those with the disease at
“around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years”
Each case is different, but time seems to have moved very quickly for us as I realise that we’re now at the latter end of that average estimate. Mum is slower, tires more quickly, and weaker. But when she’s engaged, she’s herself, entirely in conversations, eating well, drinking and handling the indignity of having others do her personal care (relatively well, ok sometimes, she does express words that I can’t repeat).
Maybe I’m blind to it. I still see mum as she was. She’s forgetful, repetitive, and she’s become needier, but that’s the most of what I see of Alzheimer’s in her. The sleep disturbances have subsided. I don’t know anymore because COVID has made life so much more complicated, and to me, this is the biggest reason for her changes rather than her dementia.
I know you’re thinking, come on, you know we all die eventually, and I agree with you. All I know is that I’m not as prepared as I believed I was.
Something has changed. It’s the suddenness of it.
The possibility of losing mum quickly.
The reality is that I’m not emotionally prepared to lose mum. I haven’t processed it.
I don’t think you can ever be. All the work I have done has always been practical and physical preparation. I haven’t done anything to prepare myself mentally for the possibility of losing mum quickly and suddenly.
And now, I keep thinking that a minor infection, mini-stroke or hernia strangulating will inevitably lead to me losing her and that it will happen quickly. Especially with these horrible continuous UTIs that she can’t get rid of and meds that are no longer working against them.
How do you prepare?
I don’t know how you prepare yourself emotionally for death. Grief affects everyone differently, and there are no shortcuts, but I want to be as prepared as possible. To learn more about the end of life emotional care. I want to understand what her last moments will be like, and how I can make sure that she is comforted throughout and my emotions do not overtake me so I’m present. So that her wishes are not overridden by medical teams or other family members.
I need to have that armour prepared, and for me, that goes into research by reading books like Kathryn Mannix, Atul Gawande, Sherwin Nuland etc. The best way I protect myself is by being prepared, so I’ll be watching videos, reading blogs, and talking to my therapist about the best way to prepare emotionally for this.
Don’t get me wrong. When the time comes, I know this will probably all go up in smoke or that it will be nothing like I imagined.
I suppose you need to do what feels right for you, and this is what feels right to me at the moment.
Living in the moment
A caveat to this is that I need to balance this anxiety that I have with living in the moment, ensuring that the life we have now doesn’t pass me by until I get to the stage where I become less anxious and feel more emotionally prepared.
It has been and will be a delicate balance. But I know once I’ve done what I can, it will stay there in the back of my mind. It won’t be ever-present. It’s just there tucked away to pull out when I need it.
I hope this blog isn’t too morbid for you. I was hesitant to write it, but this is what’s in my mind now, and I can’t be the only person to feel this lack of emotional preparedness given our situation of caring for a loved one who will die at some point from their illness.
I’ll keep you updated on what I learn and the steps I take to prepare emotionally for end of life emotional care. Maybe it will help you too.