Life as we know it

There was sad news from our West London branch of the MND association. News of the death of John Walker, one of our members who had been living with MND. His wife, Anna, attended a number of the Carer Support meetings and I met her there and at various Open Branch meetings with John.  John’s is the most recent death, but there have been others in the last few months.

I understand that he was in hospital, and had double pneumonia and also that he did not have his eye-gaze technology with him, so could not communicate at the end. I know that this is a frequent occurrence for MND patients and wonder if it has to be so? I don’t know all the facts, so I will not comment further, but I hope to return to this issue in future posts.

I was saddened by the news of John’s death. Anna and John have been much in my thoughts.  I had not known he was so ill. I was also aware that the news of his death came as a shock to my – what? Complacency? It made me ask myself some questions.

Questions like “Am I being too complacent?” “Am I failing to face the reality of Roch’s condition?” “Do I take things for granted?”

I cannot comment on John and Anna’s situation or how the disease progressed in his case and in any event, would not presume to do so.

But the truth is that the progression of Roch’s ALS has been so slow to date that we have been granted the gift of time. Time to adjust to changes and time to learn to cope with new challenges. Each change then simply becomes ‘Life as we know it.’

Because life for many people living with MND and for their families is different from our own experience – so far, at least. Yes, Roch is almost completely wheelchair bound – but can still take a few steps with ‘Roly’ (rollator), stand in his favourite corner in the kitchen by the Nespresso machine and make himself a coffee. He can get himself out of the wheelchair and enjoy a cigar at the back door although more and more now, he stays in the wheelchair to do this. He can still speak,  swallow and breathe unaided.  On June 16^th, it will be four years since diagnosis. This is slow progression.

Yes, he is losing muscle mass. His arms and legs are much thinner. He is beginning to have a problem with transfers. His voice sometimes gets tired (but this is not due to bulbar symptoms). He also finds it tiring to feed himself and will only occasionally consent to assistance – but he can still swallow his food and enjoy his drink.  He has a strong constitution (how many of you have heard the FCA (Irish Territorial Army – Forsa Cosanta Aitiuil - speech? Trained killer, crawling through cow pats and sheep shit in all kinds of weather, cold showers (after crawling through cow pats?!!) etc.) Well, he has a point, it did make him hardy and before he was diagnosed with MND, he often went to the gym three times a week. It makes him sad to think of losing that now. But I think his hardiness will stand to him in the days ahead.

I have been at support meetings where fellow carers have spoken of the dreadful problems and acute distress caused by the rapid appearance of symptom after symptom, leaving little time to prepare, adjust or arrange the necessary equipment/support/treatment. We are not in that situation and there have been moments when I have felt like a bit of a fraud in their company, having left Roch at home, comfortable in his chair, having eaten a hearty meal, Prosecco within reach and loudly declaiming some football manager or referee as he watches a match on TV with Tom.  At those times also, I am conscious of a feeling of panic as I am granted a glimpse into a future I would rather not even think about. But it hasn’t happened yet and in fact, we don’t know what will happen. I recently remarked to our branch contact, Mandy, that I feel like a fraud sometimes. Not a fraud, she said – Roch is lucky.  Yes, she’s right. We are lucky.

And we are also lucky in the support we receive from all the professionals. Yesterday, we had a visit from our Community Matron, Jo. She was here to do a ‘Continuing Care’ assessment for Roch, as we have requested more hours from the Local Authority on the Direct Payments Scheme. They needed to establish that Roch had not progressed to the point where his care should be transferred to the NHS. This would also save the Local Authority some money! Anyway, she established with us that he doesn’t need this yet.

We had a long chat with her and brought her up to date. Her visit left us feeling very reassured on many points. We can talk to Jo about our fears for the future. We know that when there is a problem, we can call her. In fact, we have a list of people we can call on for different problems and we know that they will move heaven and earth on our behalf. Jo, Donna, Jenny, Amber, Shelley – are just some of the professionals we can rely on who work with us from home.

So maybe life as we know it makes me complacent sometimes and maybe I do take things for granted. But sometimes lucky people do, don’t they?