It was my mother who gave me the note many years ago after she got it from a trusted confidante. Speaking about the difficulties she had looking after my father who was in the early stages of dementia she was told: “You are his voice.” It was figurative and almost literal as my father’s ability to convey what he was feeling or thinking declined rapidly. We all deferred to her as we saw her as his voice, knowing she instinctively understood what was best for her husband because she knew him inside out. It was a voice that never faltered, nor took him on a wrong turn right up until the end of his life.
When I began my first steps in advocacy I carried that note with me telling carers: “You are their voice.” There are so many pearls of wisdom you can pass along to a new carer to help them see it all in a different light, although to be honest, I don’t know if it makes it easier. During my father’s illness, I saw myself as a backing singer to my mother, chiming in when it was appropriate. For four years I have felt I am a voice on my own, one worth listening to on the subject of caring and dementia. Initially, I welcomed this and the platforms it gave me to speak about my experience of living and helping to care for someone with dementia. I spent the initial years of my father’s illness almost silent on the subject having been deemed a liar, or told that I was exaggerating or over-reacting. I cried in a lot of bathrooms for the first year because I was afraid of what people would say to me for having feelings so I learned to become silent.
This year that voice has had a chance to sing thanks to the opportunities the Dementia Carers Campaign Network has afforded me. I have given quotes for a press release, an interview with the Irish Times and participated in a website project in conjunction with UCD. Looking at my father’s name in his favourite paper he bought long after he stopped being able to read I had a sad little smile that six years after his death his story is still sadly relevant because so little has changed.
I thought after 13 years of dementia there was nothing that could silence me. Then this week happened.
This week I made a phone call from the department I recently called out in an interview in the Irish Times which you can read here. My mother had visited this department to find someone who used to look after my father just to see if they were still based there, to seek advice on someone she cares for now who I will just refer to as “the/this person”. Once again, my mother has found herself as someone’s voice, albeit with many new challenges. The staff member my mother was looking for was no longer based there but before anyone could tell my mother another staff member – we’ll call her Elaine – who had already spoken to my mother on the phone that morning came rushing out. My mother emphatically denies she had any wish to speak with Elaine, but Elaine wanted to speak with her. These are just a few things Elaine said:
“This is not a dementia unit.”
It basically is but they don’t advertise; they do look after people with dementia who present with psychiatric issues. My mother is acutely aware with the department does as she attended many meetings there with me. Elaine also repeated this to me, I unfortunately never got to recall my genuine but over the top collapse into my mother’s arms after learning my father would never walk again in that same “unit”. Or the hours I spent there going over the last few years of my father’s life with one of the doctors after obtaining the right to view his files under the Freedom of Information Act.
“Ye are getting 12 hours anyway.”
That refers to the outside care we as a family get for the person we care for. That is 12 hours over 7 days (or, according to Siri 168 hours), and by right every family looking after someone with dementia deserves more than that. It’s implied that Elaine possibly thinks this is enough support.
“They are just medicated here anyway.”
Oh God Elaine. Elaine Elaine Elaine. No, they do not just medicate people in your department. The balance of medication with anyone with dementia is very delicate and it takes a long time to get it right. More often than not a person is just getting used to their medication and the dosage and there is a cognitive decline. The doctors meet with the patients and the families to discuss the decline, the adjustment of medication and any behavioural issues that are presenting. I also think it’s a bad look to depict your place of work as a dementia/psychiatric drug den.
Elaine continued to speak over my mother who at this point was unable to hide her emotions and began to cry. She’d walked the hallway she and Elaine were standing on so many times and the image of the door at the end of it was all too familiar. She saw herself on the other side of it with her husband eight years ago when he was finally given an appointment because he was lashing out in his nursing home and was close to being ejected. The meeting that day was for 4PM; she arrived at ten to. She pressed the buzzer again and again, but no one answered. She had no choice but to turn around and bring her husband back to the nursing home. That is what she saw as Elaine continued to patronise her.
“It’s history repeating itself,” she said as she walked through the door. She turned to see Elaine close it in her face.
I have already written and spoken about what it has been like to see my mother facing a carer’s nightmare. It’s heart-breaking and it’s frightening to see the toughest nut in the family crack. She has made me promise repeatedly not to get involved in situations as I am not known for being able to keep my temper. There was absolutely no talking to me after she recounted this story. When one voice is silenced, there is another who is able to speak. I called Elaine.
Elaine told me how she knew I was going through a very difficult time and experience, which I’m glad she did because I didn’t know what I was going through until she kindly pointed it out. Once again, she said her department was not a dementia unit. That the department had discharged the person my mother and I were helping to care for because she was fine. She told me of the family members she had spoken to and some of what she said to them.
I never asked her any of this. I simply asked her what transpired between her and my mother. I never got an answer. So I pulled a classic McMahon move and asked for the name of her superior. It has never failed us.
Caring for someone with dementia does things to you that you’ll be talking about in therapy 20 years later. It changes how you see the world and everyone in it. It breaks your heart harder than you could have imagined and every day is not just a day, it’s a test of your endurance. When you hit a crisis situation you start to wonder when you will inevitably crack. You know that after its gone, that after the person it inhabits dies that what is left of you will have to figure out how to keep going and form some life that until now had been on hold because of dementia. So, when you resume the role of caring for someone else, you don’t need people like the Elaines of this world. Unfortunately, they exist. They are the silencers of voices. They think that they can shut you down and often they do. Elaine was a test to the voices and the voices somehow prevailed. But that tale is for another day. Elaine isn’t a problem anymore. You are.
I like to think I’m finally being listened to with the opportunities I have been given. I know that my voice has been valued because it has been used in campaigns, interviews and press releases. It’s when I reach out on my own platform that I feel I’m not heard. So, my voice gets louder and louder. The last seven days I’ve been shouting and for the person we are caring for it has been somewhat effective. On the general disgrace of how the services figuratively and literally close doors on people and drown them out I’ve had a tepid response. Which is more disheartening than a door closed in my face.
It’s not that long ago the media were heralding a new Ireland after more than two million people voted to repeal the Eighth Amendment. The op-eds accompanied by emotional images hailed us as progressive. I cringed, even at the ones that were well written. We’re not new, nor are we progressive – we’re playing catch up and we’re still behind. I have had to deal with a system that has hardly changed since 2005 where somewhere along the way I’ve had to deal with an Elaine. I keep saying it and the people that pay attention are the people that know me and know what I experienced or people that are familiar with the intimate details of this situation and the person we are caring for.
We are up in arms because of the housing crisis, the cervical check scandal, the Gardai at the protest in North Frederick Street. Panti Bliss declared: “This is not my Ireland.” These are all valid things to be angry about, to take to social media to decry and to opine and to take to the streets. I just cannot fathom how this country isn’t mad about how we treat people with dementia – some of the most vulnerable members of our society – and the people that care for them; people who save the country over 800 million a year. People who are mentally and physically worn down by caring for loved ones. I wrote about how two wards were shut down in a local nursing hospital – one ward my father stayed on during respite – because there were “too many resources.” I would love to reject this Ireland but unfortunately, this *is* my Ireland.
I’m hoping the lack of response to that post is because people didn’t see it. If you live in Limerick and care about general social injustice and scrolled by, I applaud how you can pick and choose what you fight for and what you get to lend your voice to. I never have, whether it’s been dementia, homelessness or mental health; they are issues I have personal experience with where I’ve had to battle the obstacles that have faced me. My voice is starting to go and my belief that the injustices carers face will be picked up on by the public is faltering.
While my voice is no more important than any other carer or person with dementia it has merit and I know what I need to say every time. We need sign-posting from diagnosis to dying; we need clear lines of communication between healthcare professionals and carers, we need to build a support network, we need to stop looking at dementia as an old-age disease, we need more funding from the government for resources and supports, the fundamental need of carers and people with dementia is to be heard. I’ve said this so much I wrote that barely thinking of what I needed to write. I have no problem yelling until I grow hoarse, but I wonder what the point is if the response is almost complete silence.
That's Miss Mac To You 