“CAN you imagine sitting there with a brain that works when nothing else does?”
Angela Carson asks the question — but does not expect many people to be able to answer it.
Such a horror is beyond the scope of most people’s powers of empathy.
Yet her husband Mick need not delve deep into his imagination — it is his living nightmare every day.
He cannot eat, breathe, cough, talk, move, scratch an itch or go to the toilet — his house is more like a hospital ward than a family home.
Seven years ago Mick, aged 54, was diagnosed with motor neurone disease (MND) and his loving, long-suffering family know he is living on borrowed time.
The disease usually kills sufferers within three to five years.
His son, Peter, said the family are “over the tears” now, but some things still hit them hard.
They now want to make people aware of the debilitating impact MND has on the sufferer — and their family.
Angela cares for her husband of 32 years round-the-clock in their modified home in Wesley Street, Westhoughton.
Carers come in during the day, but at night Angela is on her own, attending to Mick’s needs.
Sometimes she can go a whole week with only four or five hours sleep.
When the carers do take the strain for two nights a week, giving Angela, aged 51, “a break”, she has to sleep on a mattress on the floor in a spare room, as Mick’s medical equipment and modified bed have taken over their bedroom.
Both Angela and Peter, aged 30, said they have been shocked by how difficult it has been to care for Mick, not only physically but also emotionally as well.
Angela said: “There will come a point where the machines can’t keep him breathing.
“He has said to me a couple of times, ‘switch it off’, but I would never do that.
“He has tried to throw himself out of his chair more than once. There is no pain, it is just mental frustration.”
Mick, a former machine engineer, worked until he was physically incapable. He was diagnosed in December, 2008, but first developed symptoms in 2007.
After a routine hernia operation he developed a limp on one side.
He was referred to a neurologist and after all other possibilities had been ruled out, he received the dire prognosis.
Now he breathes only through a tube and each day is fed 1,000 calories of a protein liquid intravenously as he cannot eat through his mouth.
Angela and the carers must also connect Mick to a cough-assist machine, which sucks phlegm off his chest as his diaphragm cannot perform the task. This can happen almost constantly for hours on end, through the night.
To use the toilet, Mick is hoisted on to a commode by Angela or the carers, and their bathroom has been fitted with a walk-in shower for him to use.
Each morning, Mick is showered, dressed and taken downstairs using a through-the-floor lift which has been installed thanks to funding from the Motor Neurone Disease Assocation.
Once downstairs, he sits under a blanket, whatever the weather, as his failing body cannot retain heat.
Angela said that only on the warmest of summer days do they consider taking Mick out of the house.
His most recent loss is his speech, which Peter said has been the bitterest pill to swallow.
His son said: “He is a very independent person and I think his speech has been the hardest one to bear, because he has no control.
“It is so frustrating. It was a bit slurred for a bit, and now he can barely talk.
“In his head he thinks in full sentences, but we only get the odd word.
“He’ll say ‘please can you...’ and no important word comes through, before he is struggling to breathe again.”
Mick now relies on Angela or Peter patiently holding up a colour wordchart for him to painstakingly spell out basic words.
Even basic needs, not immediately obvious to outsiders, take up a lot of Angela’s time, such as wiping Mick’s mouth or scratching an itch.
Angela said: “I saw a programme once where someone said try to sit on your hands while you have got an itch — I lasted less than a minute.”
Mick takes anti-depressants for anxiety and Angela has now started on them as well. She somehow still works 30 hours a week from home for Electricity North West – work she needs in order to stay afloat.
MND is a rare condition although Angela said doctors have noticed a recent spike in Bolton, with about 20 cases currently being tackled in the town.
The neurodegenerative condition quickly causes muscle weakness and atrophy. Mick has been left paralysed, but one thing he has retained is his smile, and his family insist his devilish sense of humour remains intact.
On the future, Angela said: “It is fatal; he might live a few more years, or a few more days, we just don’t know. We have just taken each day as it comes for a while now and will appreciate him while he is still here.”
But for Angela and Peter, Mick may not have survived this long, and neither are they ready to let him go yet.
There is a steely glint in both pairs of eyes as they say in unison: “We are one another’s rock.”
- Peter and his girlfriend, Vikki Hodkinson have run marathons and completed a skydive among other things to raise money for MND Association. To donate go online to justgiving.com/peteandvikki.