It is quite hard to believe that Mum’s diagnosis came nine months ago this week. It feels like a world apart, that day we received the devastating news. So much has changed, and every preconception about what was going to happen has been challenged.
It was so easy to write that first blog post. Everything was raw and emotions ran high. It felt like I was lost in a quagmire, fighting to find the escape, battling against the panic and fear and confusion. Nine months on, and with slightly more clarity, I wanted to talk through some of the things I was worried about then, and how I now think about them.
When you are told that someone you love has a terminal illness, it is often the first thing you jump to. How long is left?
Progressive Bulbar Palsy has an average life expectancy of 6 months to 3 years, which was a horrendous blow when we found out a few days after the diagnosis. We had been despairing at the average for MND, 2 to 5 years. Then as we researched PBP and saw that average, and it felt like the last spark of hope had been extinguished.
I remember holding onto my mother’s hand and telling her that averages don’t matter, that nobody could tell her how long she would have left, and that we would take each day as it comes. I stick by that mind set, even though in my heart I was fearful. She seemed to be progressing so quickly, and I felt like hope was gone.
We’ve now had nine months of taking each day as it comes, and I honestly don’t think about that average anymore. I think once we’d passed the six months stage, the fear left and it was easier not to think about time draining away. Because Mum’s time isn’t finite. There isn’t a predetermined day that she won’t be here anymore.
I’m sure the fear will return as the MND progresses, but it won’t be dictated by any time frame imposed from above. This is her fight, and it will happen at her own pace.
In the first few weeks, Mum’s progression was faster than has been for a while now. When you’re trying to come to terms with it, every slight decline feels significant, until it gets worse and you realise it wasn’t. It felt like we were chasing the condition, trying to catch up and believing we never would.
However, my preconceptions about how the disease would progress have been constantly challenged as my mum continues to live with it.
Firstly, I thought the decline would continue. I read that the pace could change, that it could stabilise, but I just seemed to be watching Mum get worse and worse and worse. I didn’t believe that she could stabilise, that the progression could slow.
Then it did. By August, I realised that I wasn’t noticing decline every fortnight when I visited Mum. There was a slow progression, but it didn’t seem so stark. Even now, I notice things from time to time, but it’s rarely as glaringly obvious as it was then. Is that because the initial fear and stress heightened me towards spotting symptoms? Perhaps. Either way, it makes it easier to manage.
Secondly, how the disease progresses isn’t what I expected. You learn of the five parts affected by MND – speech, swallowing, arms, legs, chest – and think of it as being like a checklist.
One doesn’t follow the other, but they don’t happen all at the same time either. Of course it’s more complicated than that.
Mum has weaknesses in four of those five areas. Her speech and swallowing are severely affected, and her arms and legs are getting worse, but thankfully there is no sign of weakness in her chest. I didn’t expect that to be the case after nine months.
Even more surprising to me is that the weaknesses in her arms and legs have been largely confined to her left side. I don’t know why, but I had supposed that when her arms and legs would become weak it would be both sides at the same time, but that’s not been the case. In a way it’s lucky; she is right-handed, and the controls for her wheelchair are on the right side, and she can still manage perfectly well. I just didn’t expect that to happen.
- Quality of Life
If your first thought when someone you love is diagnosed with a terminal illness isn’t ‘how long do they have left’, then it may be ‘what will their quality of life be?’
I can’t deny that things have changed, and that most aspects of normal life are more difficult now. I’d expected that she would become more withdrawn, that everything would be just too dark and difficult for life to be enjoyed.
My preconceptions have been defied not by circumstance, but by a concerted effort on the part of my sister, Mum’s husband and myself. She isn’t allowed to wallow when we give her so much to look forward to. Trips around the country, theatre visit, seeing family and friends – anything for her to focus on is welcome.
To quote Sweeney Todd, ‘life is for the alive, my dear, so let’s keep living it’ (and just skip over the subsequent murder…)
My mum has struggled with mental health issues, as have I, and I just didn’t know how we’d get by.
I thought mum would succumb to depression, especially when she had to come off her antidepressants for the first time in ten years. She does have her moments when she will cry, and that’s painful to watch, but it’s normal. It’s a horrible thing that is happening to her, and she can’t pretend it isn’t happening. But she has withdrawn into herself, despite the normal way of expressing yourself (speech) is no longer an option. Instead, she manages to find a way to keep laughing, keep smiling.
Somehow, I cope to. We all do. Even when it’s hard, I am so grateful that she’s still here, and that we have this life together. Of course, I’m not on the frontline of her care, and I don’t have to deal with the everyday challenges that my sister and Mum’s husband do. I struggle being so far away, and I battle feelings of worry and guilt. But I also look forward to seeing her, no matter what the challenges are. We’ve made it through the past nine months, and we will carry on doing so.
I feel lucky to have had this time coming to terms with the condition, and getting used to it as part of our lives. I still hate it with a passion, and wish I could stop it, make it disappear, reverse the last year and pretend it never happened. But I also know that time is a blessing that many people in my condition – loving someone with MND – don’t get.
I don’t know what the future holds, and I will learn and grow as we fight this as a family. But I have also learned a lot in the last nine months, about myself, my family and the impact MND can have.
Like everything else with the blog, these are our experiences, and won’t necessarily be yours. Remember that support is out there. Talk to me, or call MND Connect, your health professionals or your family and friends. Sometimes the different perspective that comes with time or distance can help you see through the panic and fear.