It’s been a while since I just talked about Mum, how her condition is progressing, and how she’s doing. In part that’s because you can read it in her own words, on her blog. In part it’s because I want to respect her privacy, and of course, not to upset her.
I also know a lot of people care, as seen by the fantastic early response to our new fundraising efforts, and by the responses we’ve received when we share problems and concerns online.
Take this week, for example. On Monday we received the news that Mum’s condition hasn’t progressed far enough for us to be entitled to free social care. This came as a bit of a shock to us. We’re naturally pleased that she is progressing slowly and still has much independence, but daily life is definitely more of a struggle, and we did not expect to be told she wasn’t disabled enough.
Mum’s ability to walk has changed significantly. She wears a tight ankle support on her left leg in order to be able to stand up, and uses a zimmer frame to get around the house. Numerous falls haven’t left her injured, thankfully, but have definitely knocked her confidence, so she chooses to remain in her wheelchair for the vast majority of the day. To make mobility even more of a struggle, the weakness in her left arm has got worse, and the bathroom floor in her ‘adapted’ flat isn’t non-slip, meaning she cannot walk into that room at all. This is why we thought we had a case for social care.
Communication is a consistent problem, as it was the first symptom we noticed. I can’t say I’ve noticed it getting worse because I simply can’t understand most of what she tries to say. Signing, writing and typing out her words are more efficient, but sometimes her pen or phone aren’t to hand, and I’m the only person who can understand her limited use of sign language.
Problems with swallowing were another of the early indication of MND in Mum’s case. Last week she made the decision to stop eating pureed meals every day – it’s hard work for her, and the food usually has to be reheated halfway through her meal, just so she can eat it. She still has some available, and will eat them when she feels strong enough.
Mum’s husband acts as her carer 24 hours a day, which has been particularly difficult over the past few weeks, as she has battled illness. What manifested itself in me as a bad cold became for Mum a real difficulty. Her inability to clear her throat left her with difficulties breathing at all and the occasional choking, which at one point saw an emergency doctor out at 2am. Overall, Mum’s ability to breathe is still excellent, but this illness left her with low energy, low motivation, and deep unhappiness. Thankfully she’s on the mend now.
Her condition alone, disregarding all the other challenges we continue to face, such as her husband’s partial blindness, led us to look into social care, just to help us get through the day. We decided on requested help with showering and getting dressed in the morning – just an hour a day to make life easier.
It took a lot for Mum to agree to have outside help. She had to accept that she needed that help, and so did we, which is especially difficult when it involves having a stranger (yes, a trained carer, but still a stranger) looking at your weakened body naked. This was a huge decision for her, and it had to be her decision. We’re proud that she made it, and saddened that in this case that hurdle won’t lead to anything getting better for now.
Our MND nurse told us on Monday that her condition has not progressed far enough to qualify for free care at this stage. We can pay for someone to do it – but at £14.90 an hour (approximately £417.20 per month), it’s simply not something we can afford.
We are immensely lucky to have the NHS. They have supported us through every stage of this illness – from free wheelchairs, iPads and a variety of other equipment to the considerable cost of her regular hospital appointments. There’s no way we could do this without them. The NHS allows Mum to have a better quality of life and cope with MND better than she otherwise would.
In this case, though, we do feel let down. It feels as though we hit a hurdle with every stage we reach. Each time we stumble, fall and have to pick ourselves back up as quickly as possible. All we want is the best for Mum, and we usually have to fight or negotiate to get there.
Moving forward, we are contacting the MNDA’s benefits service to see if there’s any provision there, and we will be contacting the Regional Care Development Advisor (thank you to my friends on Twitter who offered this advice). We will speak with our occupational therapist and district nurse and anyone else we can think of. Don’t get me wrong – we wholeheartedly trust our MND nurse; she’s been amazing from Day One. We just need to ensure we have the full picture, and have an idea of what stage she needs to be when the time comes that help can be provided.
We’re doing a Dog Jog! My sister and I are forcing our ten year old pug to run 5K for his mum, all to raise money for the Motor Neurone Disease Association. Any support you can give us would be hugely appreciated. To read more or to donate, please visit https://www.justgiving.com/fundraising/victoria-brown95