Ed McMullan
March 2014
Introduction
I found myself thinking a lot about a small group of people who didn’t know each other, came from all sorts of different backgrounds, had different life experiences but had one very definite thing in common - they were all tired.
We all get tired. Sometimes it’s a satisfied tiredness gained from having achieved, sometimes it’s a weary tiredness gained from pushing ourselves too hard, but most of us get an opportunity to recover and rest.
The small group of people that this study centres on don’t get such an opportunity. I don’t know how they do it - they are simply marvellous. And they have found the time and energy to help me with this. They have my sincere thanks and admiration.
Foreword
Early hours 24th January 2014
Being woken every night is (apart from making me feel sick at that time) having a negative effect on my life.
I try to carry on as normal but every few days I find myself feeling ill (dizzy, drunk, woozy etc) and I end up sleeping in the day to try and catch up. This means less time to do daytime stuff which adds to the frustration in my life
(which is already very restricted).
My energy levels are lower, my bones often ache, my mood is depressed, I pick at food to try to keep going, my relationship with my husband (the one I care for) is negatively affected.
NB. I am writing this at 5 am having been woken at just after 2 am and not slept since.
Tonight I was already feeling ill before going to bed and my temper snapped when he woke me. I found myself screeching horrible things at him. All this broken sleep is making me ill. It tips the balance from coping to not coping.
It also strikes me that it is since this sleep disturbance started I no longer have time to pursue my hobby and hardly ever socialise. Perhaps it just coincides with increased daytime caring as well? Who knows? I would just like some life back.
Mary
A Good Night
A
little under two years ago I started work for Crossroads as a ‘CSW - Carer Support
.worker’. I enjoy the role of supporting carers, which is sometimes challenging, occasionally frustrating but always rewarding.
I have at the moment six clients, two of whom I see twice a week and the other four one morning or afternoon call each. They are a very diverse group, two suffering from
Parkinson’s Disease, one with MS, one is the victim of a stroke, one living with dementia and a man with learning disabilities.
One of my clients lives alone but the rest have partners who are their main carers. None of these carers suffer from MS, Parkinsons, Learning Difficulties, dementia or recovering from a stroke, but they are all suffering. Also they share very similar symptoms, fatigue, depressed mood, loss of appetite; they are tired.
What happens if I don't sleep?
Everyone’s experienced the fatigue, short temper and lack of focus that often follow a poor night’s sleep.
An occasional night without sleep makes you feel tired and irritable the next day, but it won’t harm your health.
After several sleepless nights, the mental effects become more serious. Your brain will fog, making it difficult to concentrate and make decisions. You’ll start to feel down, and may drop off during the day.
Your risk of injury and accidents at home, work and on the road increases.
Find out how to tell if you’re too tired to drive.
If it continues, lack of sleep can affect your overall health and make you prone to serious medical conditions such as obesity, heart disease, high blood pressure and diabetes.
Caring for their partners is a 24 hour operation. Some days they get help and respite. My role when I call is to give them a break from the hands on care, so that they can go out and shop for groceries, occasionally meet a friend or sometimes it’s the only opportunity for them to have a bath or shower. Two of my clients attend day care sessions once or twice a week.
One of