I have wanted to sit down and write this so many times but each time I started to think about doing so, an enormous well of trauma would build up and make it impossible to put words on the page. In fact, although I have started typing this, there is no guarantee that I will get to the end…or will be able to compose the words in a way that conveys the horror of what I need to say.
My mother has dementia.
My beautiful, fun-loving, intelligent, independent, hard-working, determined, incredible mother has dementia.
My mother is severely brain-damaged.
My mother is slowly dying from a terminal disease for which there is no cure.
My mother has dementia, is severely brain-damaged and is slowly dying from a terminal disease for which there is no cure and the world has turned its back on all of us; leaving us to drown in quicksand.
Right now I am in the quicksand up to my mouth, finding it hard to breathe as it fills my airway, choking me every time I cry out for help.
The thing about having a relative with dementia – and it’s important you know this because the chances are that at some point you will encounter dementia in your life – is that it appears that no one really cares.
Dementia is not heroic in the way that cancer is. There is absolutely no hope of recovery and because the sufferer is so severely damaged in every way there is also no dignity.
The agencies who would normally appear on white steeds heading up the troops who administer help never appear. When you beg on knees so raw because you have been crawling in the dirt month after month, year after year, they demand you clear the blood from the floor beneath you. That’s if those agencies are not too busy stepping over your prone carcass that is literally beneath them in every which way.
Everyone in this country knows how appalling the lack of care and funding for care, and treatment is because it is publicised every day. If it doesn’t yet affect you, you no doubt turn away from the information and move on to something more appealing in the mistaken belief that it will never touch you. The reality is that it most likely will.
Mum hit the jackpot of factors that lead to dementia:
- Thyroid issues
- Depression/Mental health
- Dentures (Mum had dental implants which fell out over time)
- Irregular sleeping habits
I didn’t know much about dementia until the horror of it landed with a gut-wrenching howl into our lives in 2010. Mum was diagnosed on her 66th birthday. The shock for us all was immense and physically painful. It was terrifying and kept me awake for months with a grief so excruciating that I thought I was losing my mind.
Mum ended up hospitalised, almost catatonic with clinical anxiety, for almost 6 months after receiving the death sentence, which arrived in a bland bulk bought envelope that gave no clue as to the information contained therein.
There are no MacMillan nurses for dementia; nor are there beautifully decorated and peace-filled hospices with specialised nurses who understand the severity of the situation and act accordingly with both the patient and their family. Instead, there are care homes – the subject of which is too emotive for me to broach right now – and not in a good way.
It’s not even as if those care homes are provided for the patients; oftentimes homes have to be sold and savings have to be plundered to pay for the care that has already been paid for through a lifetime of taxes. In this past week, we have heard that the people of this country who are already on their knees will be taxed more, this time for social care when those in prisons have their room, board, education and entertainment provided for free.
Mum’s cognitive score eleven years after diagnosis is probably around 2 or 3 out of 30. Mum doesn’t always know who I am by name but she knows that I am important to her. On a good day, Mum is clear that I am her daughter and knows my name. On a bad day, Mum says that she is Toula and that she can see her daughter walking down the street ‘over there,’ despite the fact that I am holding her hand, disintegrating from the weight of the guilt and pain I carry in every cell, knowing that there is absolutely nothing I can do to change the fact that the Grim Reaper is walking beside her. I can sense him getting ever closer. Mum is now oblivious to his presence. Thank God. Despite this being a living nightmare for her, Mum still wants to live.
Mum is only 76. This journey for her started in her 50s. I won’t go into details but I believe that she was misdiagnosed and mistreated by mental health specialists for years. Mum has had a traumatic and difficult life that has culminated in this. She is no longer aware of that fact but I am and it physically hurts me that this is how it will all end for her.
Mum knows her name.
Mum sometimes (with a mini prompt) knows her date of birth. She doesn’t know the same information if I ask her when her birthday is.
Mum sometimes remembers her Latin verbs but not very often. When she does we all whoop with joy!
Mum has no idea how old she is, nor the jobs she has done, the people she has known, the places she has visited, the things she has done. Mum cannot remember any of the details that make up her life.
Mum doesn’t know that she lives in a care home. Each time we bring her back after a wonderful day out, Mum is terrified that we are abandoning her and leaving her in a strange place with people she doesn’t know. She tries to leave with us, so I invariably have to make up a lie and then sneak away. The pain and guilt never leave me, settling like the heaviest black void of immense doom in the pit of my stomach. It’s constant and has been there getting heavier since 2010.
Mum’s expression is changing. Her eyes were only full of laughter and confidence and now are frequently full of confusion and fear, too.
There are so many other symptoms that affect her but in order to maintain her dignity and the dignity of other sufferers, I shall refrain from listing them.
Loss of memory is the main symptom that everyone focuses on but every system and function controlled by the brain is affected. Memory is also integral to doing anything – from making a cup of tea (which apparently has over 30 steps to remember), to cutting and picking up food from your plate and putting it into your mouth, to using the loo.
Family members who are innocent bystanders in this situation are suddenly expected by the local authorities, GPs, dentists, opticians, care homes and everyone in the world that you encounter with your demented relative to suddenly be experts.
We are not Mum’s official carers but so much of our time is spent caring, doing, organising, advocating, form-filling, sorting admin…despairing and crying. It’s impossible to work and do what we do for Mum, and because we are not ‘official’ carers the time we dedicate to making Mum’s life work is given freely.
There’s no way that we can know ahead of time that we will have to spend a day at A&E because of a life-threatening bacterial infection that has made her foot swell up. Or, that Mum will have two different medical appointments in different locations in a week. Or, that she has put on weight and needs clothes to be provided in the next size up. Or, that she has developed blisters all over her feet and needs appropriate footwear to be bought for her immediately. It is literally never-ending.
‘Phone calls and emails from the care home literally suck heartbeats from my life quota, shortening my life. Whatever the contact is about, it’s not going to be good: Mum has fallen, Mum is ill, Mum has been sent to A&E, Mum needs….and on it goes. One day it will be the news we are dreading.
There are the days we spend actually taking Mum out making sure that we ‘walk’ her to keep her physically fit and strong, that we ‘entertain’ her by taking her to places that she recognises to stimulate her memory, and also taking her to places that she has never been before that we think she will enjoy.
Those days, despite the special times we share with Mum, are also traumatic. Being with someone who is so unwell but in a way that doesn’t invoke sympathy or understanding is exhausting and frustrating. Being the daughter of a mother who is now like a toddler feels like…well, it feels exactly like you think it would feel. I wouldn’t wish it on anyone.
Mum has visited more places in the past few years than she ever did in the previous 70 years. I wanted to create happy times for all of us and happy memories for me. I want to change Mum’s karma so that if the Universe brings her back for another go around her life will be better. I have resigned myself to the fact that this time around my purpose appears to be to look after and protect her to the best of my ability.
I would have said ‘look after and protect,’ but there are so many obstacles put in our way. Decisions made by those wielding the power and the funding that I have had to fight to change in my mother’s ‘best interests,’ decisions that still wake me up in the middle of the night when I relive the horrors inflicted on my mother that she thankfully has no recollection of. I have to live with those memories. Thinking of those things inflicted on her by the local authority and some of her ‘carers’ trigger severe PTSD.
In fact, I think it is almost impossible if you are a family member who is involved in the life of a dementia sufferer, for you to not develop PTSD.
This situation is extremely traumatic and it is ongoing.
Our lives and any meaningful income are currently on hold. We are unable to make any life decisions whilst we are literally waiting for my mother to die. We really don’t want Mum to die, or at least not yet. When her suffering outweighs her quality of life, I will be praying for a swift end to all of her suffering. How long that will be, I do not know, nor can I guess. We have been told the average lifespan of dementia sufferers after diagnosis is around 8 years. Mum has already far exceeded that. She is relatively young and physically strong. Perhaps she will outlive me. If stress is a factor, it is entirely possible.
My mother has dementia, is severely brain-damaged and is slowly dying from a terminal disease for which there is no cure and the world has turned its back on all of us; leaving us to drown in quicksand. Please send help!
©Toula Mavridou-Messer 2021
Further reading: trigger warning (childhood sexual abuse) https://toulamavridoumesser.wordpress.com/2016/02/29/only-dead-on-the-inside/