06/09/2023 - 'How did we get here? Part IV / the paperwork' by Alice

Diagnosis Day 17/07/2023 - we are called into the doctor’s office promptly and as we go in, we are introduced to ‘Clare’.  Now I have been a qualified nurse long enough and seen enough medical programs on TV to know that it is never a good sign if you go into an appointment to hear some news and you are introduced to another person sitting the corner with a clipboard.  I didn’t dare ask her job title but we now know her as the MND co-ordinator for our area and she will be sorting out all of David’s care in the future.  The consultant tells us that based on David’s presentation and history, clinical examination and EMG test, there can be no doubt of the diagnosis – spinal onset ALS (a form of MND).  Our dreams of retirement to an Isle of Wight cottage for walks on the beach have turned into deterioration and disability in the space of that one sentence.  There are actually only a few tears as despite knowing this was coming, disbelief and shock still seemed to be the main emotion running between us.  Even though we knew this was likely, it still seems impossible.

We ask if David will still be able to walk his daughter down the aisle for her wedding in April and he assures us that based on David’s progression so far, he should still have another year of decent mobility.  Of course, MND is different for everyone and progression is variable so there are no accurate timeframes that can be predicted but we cling to this one.  I try to focus on any positive phrases I hear – ‘seems slow, excellent baseline fitness, early stages’.  The EMG, which was the most damning piece of evidence in the diagnosis puzzle, did actually yield one good thing.  Although it was in every muscle tested, the disease has not yet found David’s mouth, throat or tongue.  This means for now, his speech and swallow are unaffected.  The stats for losing voice are stacked against us – 80% of people will be unable to speak and will need tube feeding but we can hope this is much further down the line.

The consultant prescribes David some medication to buy him three extra months, discusses genetic testing and then asks if he would like to be referred for a research trial in London, which of course piques our interest.  He also says a few more things that I struggle to remember now and then leaves us to get acquainted with Clare.  She has a chat with us but as she can see the shellshock, helpfully arranges to visit us at home when the dust has settled and we have had proper time to absorb the news.  We walk home in the rain and we barely speak.  I am rushing as I don’t want to get wet but David is dawdling as he wants to enjoy the sensation of the showers on his face.  I can only reiterate to David what I have always said – that he is not alone in this, we will face it together and that I will look after him.  We now have some very hard conversations ahead of us with family and friends and we spend the next few days visiting the island and making difficult phone calls.  David has a large and loving family and a huge network of friends so the responses are overwhelming.  So overwhelming in fact, David has to have a social media break as he can’t keep up with it all.  People are so kind, I had lots of messages checking in on me too and that has been a huge comfort. 

Clare comes out to visit the house and briefs us on all the referrals she is going to make and the list is extensive!  David will be referred to physio, community nurses, dieticians, wheelchair services, occupational therapy, speech and language therapy, community rehab services and the hospice to name just a few.  Although that last one sounds scary, the palliative care team can actually help with pain control at home and respite care.  We have a lovely hospice in Southampton – the Countess Mountbatten and they are linked to the Island’s hospice, the Earl Mountbatten.  She spends time getting to know us and our wishes and as she leaves the house, we feel very reassured there is lots of care and support out there for the both of us.  The local branch of the MNDA have meetings, just down the road from us once a month and I am keen to network with other carers.  David was not so sure he wanted to meet other people further into their journeys as it might be upsetting to see what will happen but I think this was a knee-jerk reaction and he has now agreed he’d like to go.  Clare tells us there are only around 60 people living in Southampton with MND and David is definitely one of the younger ones, with most people being in their 60-70s.  Once again it raises the question we constantly ask ourselves – ‘why David?’  But we know we can’t dwell on this as it does us no good.  Life is unfair but we can’t change it.  Facing it head on with planning and positivity is all we have. 

One thing they don’t tell you about receiving a terminal diagnosis is the paperwork involved!  You can’t just go home and get used to the news, instead you have a thousand things to sort out.  Neither of us have ever been good at organising money or dealing with companies so this has been a real challenge for the both of us.  David doesn’t even know how to log into our online banking!  We started by having to tell the DVLA and our car insurance company so David can keep driving.  This wasn’t straightforward as making a phone call as although David can and is still allowed to drive, he has to have a form signed by his doctor to say this.  This involves paperwork giving permission to release his medical records and another form to send off to his consultant so the DVLA can be reassured he is safe.  Then we have to start collating our finances, think about making wills (as neither of us have one), phoning his pension providers (of which he has 3) to get projections and again, this involves medical release forms.  We have to register with the MNDA local branch, register for the research trial, look at benefits, research and register for voice banking, think about power of attorney and advanced directives – the list really does go on.  Suzy, our lovely MNDA visitor also tells us about all the grants and funding we can receive later down the line to help with practical adaptations and aids, quality of life and cost of living etc but of course, that is all more paperwork I don’t want to think about.  I need to keep reminding myself that not everything needs to be done right now and to just focus on one thing at a time.  However, our biggest and most pressing practical challenge we are facing at the moment is finding somewhere to live, and that really can’t wait.

We currently live in a rented house with no downstairs toilet so it is completely unsuitable for David in the long term.  We are blessed to have two carpenters in our family so we know doorframes can be widened and bathrooms can be adapted as needed but finding somewhere in the right area that fits the bill is proving challenging.  I had attended an online support group for carers and saw one family’s set up and they have a lot of equipment that takes up a lot of space – wheelchairs, specialised beds, hoists and other moving equipment, not to mention the boxes of feed supplies and all the accessories that go along with that.  That was a bit of a wake-up call I have to admit and I am still wondering how people in smaller properties cope – but of course, they just have to and will find a way of making it work. 

The one house we did go and see that we loved and was ideal, we lost out on due to a higher offer.  The stress and pent-up anticipation of it all meant that finding this out had me crying in the toilets at work for a full 20 minutes.  It was hard to shake that one off and I was in a slump for a few days.  We both agreed karma owes us a favour so we can only hope we lost out because there is something better out there for us.  So for now, the search  for the perfect house continues….