MS - Mental Health - Family
Here’s some more over sharing for your reading pleasure.As per usual. I write about my own experiences. From my own perspective. Inevitably, there will always be issues around ‘unreliable narration’. I am also very mindful of stories that are mine to tell and stories that are not mine to tell. It is worth bearing in mind that I am only ever telling my own lived experience, my own version of a story. Another participant’s version of the same story will be different to mine. And still true. And still accurate. To them.
Right, now that’s out of the way.
When the kids’ dad and I met he had been newly diagnosed with MS.This meant nothing to me. I was a complete ignoramus about MS. I lean towards flippancy and pragmatism in most situations in life. IE if you don’t get MS you’ll probably get something else so crack on with it, life goes on, etc, etc...
Fast forward 5 years and he was no longer able to work and was wheelchair reliant. It’s important that I do not gloss over the enormity of this psychologically. R had lost his identity. He had gone from being a research scientist with a PhD, riding a motor bike, drinking, partying, scuba diving to a bloke in a wheelchair.
Fortunately, he is reflective, a life long learner and has no ego at all. His absence of ego is one of the qualities I liked about him when we first met.He coped incredibly well with me being the sole earner and with the indignity of navigating a punitive benefits system. Oh, and putting up with strangers asking incredibly personal questions because they simply couldn’t get their heads around why a relatively young man was a wheelchair user.
The daily challenges were enormous and often not very pretty. Any how, onwards and upwards. I was determined that life goes on. Because evidentially it does. If you fall into a pit of despair the world does not stop and wait for you to climb back out. It continues without you.
In this gung ho spirit I thought we should crack on and have a pile of kids. R was very worried about what kind of parent he would be able to be. In my very opinionated opinion, not enough parents worry about what kind of parent they will be. Nothing is ever straight forward. It will not surprise you, dear reader, to learn that once we decided we were going to ‘start a family’ it took five years before anyone joined us. We had investigations, miscarriages, missed miscarriages - fun times.
Ever since R’s diagnosis he had consistently worked hard on his mental health. He adored, and still does adore, our daughter. However, his mental health continued to take a considerable battering. When our daughter was little R’s mental health was very poor. His behaviour would be extremely volatile and unpredictable, verbally. He would show his frustrations on objects - not people. He would frequently talk about ending his life. I used to ensure our daughter and I were out of the house for long periods so that she wasn’t exposed to a parent whose behaviour was unpredictable. Form a mental health point of view this didn’t help R’s feelings of isolation much. When we returned home I always used to make sure I entered the house before our daughter just in case R had ended his life while we were out.
During all of this period, R was still doing copious talking therapies, CBT, group therapy and prescribed citalopram. Because we just talk about everything, our daughter used to call the ‘Time to Talk’ group that R went to, ‘Angry Club’. She’d ask him, ‘have you been to Angry Club today, daddy?’He’d been thoroughly fobbed off by the MS nurse, neurologist and GP - ‘it’s very common for people who have MS to have depression because the illness is depressing’. I get that mental health is not an exact science but the whole attitude during this time was dismissive, disrespectful and unsafe.
On a couple of occasions, R was so completely off his head (yes, this is a medical term) that I thought I’d have to call the police to deal with him.
I didn’t call the police for the following reasons:
It’s stigmatising. If I were poorly, in mental health crisis, I would feel like a criminal. I always associate the police with arresting ‘baddies’. I am an adult woman, educated to university level and I always forget all the other roles the police have.
They would struggle to remove him for lack of wheelchair accessible police vehicles. Although, on reflection I expect they would summon an ambulance.
On one of these occasions our daughter slept through.
On other occasions I was not able to shield her nearly as effectively as I would have liked.
My personal favourite was the time he was suicidal, phoned the crisis team and got an answer machine.
By now our daughter was about three or four years old. One day she said to me, ‘I don’t want to live with daddy any more’. We found somewhere else to live.
I broke the news to R and told him what our daughter had said. He was devastated. It finally dawned on him that his mental heath was poor. Previously, every time I had raised the possibility his response had been explosive. ‘It’s not me, it’s you. You’re mad. You’re too sensitive’.
I think my words were along the lines of, ‘you’re either a complete bastard or very poorly and there is only one of those that I’m willing to support you with’.He made an appointment to see the Community Mental Health Nurse based in our GP surgery. He asked me to go with him for moral support. I agreed but on condition that I wasn’t promising I’d be silent.
Again, we learned that ‘it’s very common for people who have MS to have depression’. We were also told that, ‘people in your situation self manage’. I did manage to keep quite during R’s appointment. By the time we got home I was furious. He had been completely fobbed off. Again. Worse than fobbing R off, our daughter had been fobbed off.
I wasn’t able to locate an email address for the Community Mental Health Nurse so I emailed the NHS trust and marked my email for her attention. I might have used expressions like ‘irresponsible practice’ and explained the financial implications of the state providing care for R in the event that his mental health is too poor for him to be able to continue living with his family.
Three hours after I’d hit send I had a phone call from the Community Mental Health Nurse informing me that she had made an urgent referral for R to have a psychiatric assessment.
He was seen a fortnight later. The psychiatrist was awesome. He explained that R didn’t have depression and had been on the incorrect medication for years. He explained that it’s not an exact science and is very much a process of trial and error to identify the correct medication at the correct dose.
The psychiatrist was being unduly modest because R hit the jackpot first time. He was given a drug, off license, to sit alongside the citalopram. The psychiatrist explained that to stop taking the citalopram would be unpleasant in the extreme. After a fortnight on the new drug the difference for R was incredible. Difficulties that had been attributed to the endless and nebulous list of MS symptoms disappeared. The most notable was the famous MS ‘brain fog’ this is a lovely catch all that includes memory and cognition issues.
During this time I explained to our daughter that daddy was taking some new medicine and if the medicine worked we would still live with daddy. And if the medicine didn’t work or if she still wanted to we would not live with daddy any more.
My retelling is all very bish, bash, bosh. There was a lot more to it than just this. I had found a house for our daughter and I to rent. It seemed a shame to boot R out of the house we had spent a small fortune adapting. I was beyond grateful that R’s new drugs were so successful. Forget the benefits to R of his improved mental health and getting to continue living with his family, here are my completely selfish reasons to be grateful:
I can’t afford to run two households. Did I mention that my income is our principle income.
Inevitably, for financial reasons, either R or our daughter and I would end up living somewhere shit - this is an estate agent term.
If R were to live somewhere shit, this would likely cause his mental health to deteriorate. The bottom line is that it would be of no benefit to our daughter to visit her dad in a shit hole with his mental health in a terrible state. Therefore, in this scenario, the benefit to our daughter would be zero. Did I also mention that all our /my decisions are about the daughter - more recently the son too.
So, as a family, we traversed that extremely challenging period. Onwards and upwards. We/I had never wanted our daughter to be an only child. This is just personal preference. This is not a judgement. I don’t doubt that, for many, being an only child is great.
My view was shaped, partially by R’s dad’s death a few years earlier. He also had MS - psychological minefield much? I was conscious of how lonely it was for R as an only child. Since then I lost my mum and my brother behaved like an absolute arsehole. I have been forced to revise my ‘only child’ theory.
Onwards and upwards looked like becoming foster carers. I’d worked in child protection for a number of years and was only too aware of children needing families. This process, whilst not for the faint hearted, was absolutely transformative for R. He loved the learning and training and the new identity it gave him. He was no longer just a disabled bloke. He was a dad and now a foster carer too. A wonderful young man joined our family. There’s a blog or three about that.
As a family, despite the challenges, we were and we are enjoying considerable success. As a couple - not so much.
Along the way, the physical progression of R’s MS marched on at a brisk pace. He increasingly required, and requires, support with personal care.
This is entirely personal to me and is not a reflection on R’s attractiveness. I stopped loving him when his mental health was so poor that he was verbally, emotionally and psychologically abusive. In case this wasn’t enough to cause a relationship to end I have cleaned up more poo and pee than I had ever believed possible. Obviously, this is horribly undignified physically and psychologically for R. Because I am an incredibly shallow person, unlike the poo and pee - they’re not shallow, I cannot muster any romantic feelings after cleaning up that quantity of poo and pee. I am not cut out for care work or nursing. Although to be fair it would be a bit unprofessional for care workers or nurses to go round having romantic feelings for the pooing peeing people in their care.
We, and I absolutely include R in this statement, have worked so hard to make family life work for the kids. We have managed to salvage a very positive, respectful and supportive friendship. He is a committed and skilled parent.
As our daughter has become aware of the family arrangements of her peers she has commented that we’re ‘weird’ because so and so’s parents aren’t together ‘and they hate each other’. Other times she’s commented that she’s glad that we all live together because she’d hate having to choose and she’d worry about her dad if she didn’t live with him.
Our family is unusual, unconventional and it works. Friends, particularly new friends, are often agog when I explain our set up. Precisely because we don’t hate each other. I have been asked if it would be awkward of we met new people. So far we both lack the opportunity or enthusiasm to find out how awkward it would or wouldn’t be.
There are a few things that interest me about our journey. How did I know R was ill and not simply abusive. There will be people far better qualified than me but my simple take was that he was consistently nuts/vile around everyone. There was no being vile around me and nice around other people. And he had a pre existing diagnosis of a degenerative neurological condition. My incredibly simplistic understanding of MS is that it causes physical and chemical brain changes. It’s a head injury in slow motion. If R had acquired a traumatic head injury and his mental health nose dived or his personality changed it might be more obvious to professionals than the MS trajectory.
And I suppose the point of this blog is to shine a light on diversity and to say that if you are a member of a family that doesn’t look like a family on TV but your family works for you. Great job. Well done. Keep on keeping on.