10 Things I Learned When My Mum Died

For context for those who don’t know - My mum died 15/04/23 at the age of 60.

She had been in a nursing home for 6 months and unwell for 18months with a dementia type illness. She had been diagnosed first with Alzheimer's then Fronto-Temporal Dementia then finally Motor Neurone Disease; and clinically presenting as none of the above. She was forgetful, she didn’t know who I was, she was calculating, hallucinated, was verbally and physically abusive to me and my dad and nice as pie to everyone else. She couldn’t use her left arm, could barely swallow, her voice changed in quality and she self-neglected.

So with Mental Health Awareness week being just before her funeral - here are my reflections.

1. We don’t know what goes on behind closed doors - I first had an inkling of this when I finally disclosed that I was a survivor of Domestic Violence and was met with shocked comments like ‘you would never know from talking to you, you seem so normal’. Yes - because I hid it so well at the time and hid the after effects for so long that for most of my career in the NHS the only person who knew was the Domestic Violence Specialist Nurse that did our safeguarding training.. Now with Mum; Dad and I tried to cope on our own, we tried to get her help, we cared for her, we tried to reduce risks to herself and others, we didn’t talk of how we were being treated and we didn’t admit how much we were struggling. When we got to breaking point and finally got her a place at a care home - people were shocked that it was so bad. Now that she’s died people are shocked that it was so serious, so unpleasant, so rapidly progressive and even that she was that unwell.
2. We say we understand far too quickly - think to when you’ve said the words ‘I understand’ - did you? Not just in understanding what someone is asking of you but in understanding what they are going through. When I did reach out I was often told ‘I understand because..’ and the reasons were almost always unrelatable - it was their grandparent, uncle’s wife’s father, some relative many times removed, the neighbours cat. Not a parent. Not behaving the same way. By saying they understood it was a means of stopping me talking, minimised my experience and it made their subsequent silence all the more painful because clearly they didn’t.
3. Silence is not golden - on hearing my news some people simply didn’t respond or they did and then ‘disappeared’. When I expressed my hurt at this to other friends they suggested that maybe the people who were silent didn’t know what to say or had their own stuff to deal with. This may be fair but in a situation that hurts so much and is already incredibly isolating, being ‘ghosted’ just makes it worse.
4. It’s okay to say ‘I don’t know what to say’ - sometimes we just don’t know what to say or how to support someone. Silence makes it worse as does brushing it off - so where is the middle ground? The biggest support I had was from the people who were honest and said ‘I just don’t know what to say’ or ‘I don’t know what I can do to help’ - the reason this helped? I don’t know how I feel or what I need so how can I expect you to know what to say or do!
5. Listen - and I mean really listen. If you don’t know what to say or do then just be that person to listen. Let me rant, let me talk utter rubbish, let me just sit with it. I don’t need solutions because there isn’t one. Just be there for me.?And if I do talk, then listen. It helps me to process and I don’t feel alone.
6. Check in - often I find myself stuck in autopilot. I’ve been trudging through my day, doing jobs, trying to work, looking after my Dad and my Son and my Grandmother. I’m feeling quite numb but that’s often mistaken as coping so I appear to be the strong one and people forget to ask me how I feel. Some have forgotten it is my loss too. I can’t explain the overwhelming feeling when I get a message saying ‘just checking in with you’ or ‘thinking of you’ - it says I’m not alone.
7. Show up - the funeral is a tricky one. We invite everyone who knew the person that died. But really, the funeral is for the people left behind. Of course people who knew mum wanted to come, but the ones that mean the most are the ones who never knew her but want to be there to support me or Dad. Every one of those, from my uni friends to Dad’s school colleagues, has reduced us to sobbing wrecks because we didn’t expect it and the love shows.
8. It doesn’t end - surviving Domestic Violence showed me this - the trauma continues. For Domestic Violence it was/is flashbacks, nightmares, triggers, trust issues and even not being able to visit Sheffield. With loss - it continues. The person doesn’t come back. There will be Mother’s day, her birthday, Christmas. The funeral is not the end. Also for us, the lead up to her death was so traumatic, the deterioration, the abuse - once the funeral is over we have to process that, as well as all the legal things.
9. We all grieve differently - I began my grief journey well before my mum died, both that and the stage I'm at now feel all wrong. She had simply ceased to be my mum - she didn't know me and I didn't recognise her. I was grieving before my Dad had accepted the path we were going down. I had accepted fairly quickly what was going on. I couldn't bargain with it, I could only mark the time and each stage as it came. I was and am angry, at mum as well as the situation - her behaviour didn't help this. I have struggled to see the fairness in the battle we've had, in her actions towards my Dad, my Son and myself, the hurt both mental and physical and in facing this now. "God will not let you be tested beyond your strength" (1 Corinthians) - but have I not proven that I'm strong enough yet? Please don't test me any more!
10. You have to look after yourself (and I'm really bad at it) - I've said this often enough in my career, mainly to carers. 'If you don't look after yourself who will look after them'. I didn't take my own advice, again and again. After Domestic Violence I put my career first, until I had an incident at work and developed severe anxiety. I didn't get help quickly enough and the trauma marinaded until it became a real problem. Even then I didn't tell people what I was struggling with, I turned up, I smiled, I worked hard - thinking I wouldn't ever need to tell. Then it broke my marriage. With my marriage breaking in front of me I still put my career first, I turned up, I smiled through tears, I worked hard - work would get me through this. The marriage breakdown made me homeless. My marriage in tatters, sofa surfing, I still put my career first, I turned up, I tried to smile, I tried to just work - it was the one good thing left right? I burned out. I broke at work, I still tried to put my career first, I turned up but I couldn't smile, I couldn't work, it didn't get me through and work was not good. I realised that for all my hard work I was just a number and ultimately I meant nothing. I left, I completed my divorce, I got a house and I got myself back. I decided I wasn't going to let anyone hurt me like that again. I wasn't going to lose myself again - it had taken 12 years to find me again. I decided the next year would be a good year - *spoiler* it wasn't. My Dad was diagnosed with cancer, my Grandmother was diagnosed with cancer and my Mother was lost. I became everyone's carer. I put them first, my career second and I don't think I made the list. I was trying to protect my Son from my Mother, support my Dad with his illness and my Mother, and support my Grandmother. I was trying to build my own business; caring for others. I wasn't looking after myself. I continued to experience burn out, my Mental Health worsened - but I was the only one holding everything together so I didn't have time to self-care. I turned up, I smiled, I worked hard. My Dad achieved a cure, my Grandmother had major surgery but is doing ok, my Mother was diagnosed first with Alzheimer's, then Fronto-Temporal Dementia, then Motor Neurone Disease and now the diagnosis is currently unknown. I watched her change from the person she was to someone I didn't know. I let her hurt me emotionally and physically. I supported her, changed her clothes, tried to feed her, gave oral care, talked to her and then I watched her die. I turned up, I tried to smile through tears, I worked hard. I lost myself again. I forgot to look after myself first so I could care for others. I'm burned out, exhausted. I held everything together for so long now that I can't remember how to let go. I still turn up, I try to smile through tears and I work hard. Because who else will do it?

Each of these points is so valid and so real. They may not be structured well but I hope I get the point across.

It's still early days and I am still working through this. I still turn up. I still try to smile. I still work hard. I continue to be a carer. I continue to be a Healthcare Professional running my own business treating those with Respiratory Conditions and Long COVID. I continue to support my Dad while we navigate this.

I still battle to put myself on the list and look after me - I fight the fact it isn't in my nature to put myself first. I know how important that is - and I really ought to do as I say!

I will find myself again. I will not be treated badly again because I know my worth. I will be me again.

#mentalhealthawareness #mentalhealth #mentalhealthawarenessweek #alzheimers #dementia #motorneuronedisease #loss #griefandloss #lessonslearned #selfcare #supportingeachother #support #anxiety #burnout #domesticviolence #trauma #traumainformedcare #counselling #cancer #survivor #abuse #death