Caring for someone with Alzheimer’s disease is very distressing and tiring. FLexercise teacher Lucinda Rowles has given us a small insight into how she coped through her mother Jean’s illness.
Lucinda became worried about her mum’s increasing forgetfulness because of the family history. She knew that Jean’s mother and brother had both been diagnosed with Alzheimer’s. So, when Jean used hand-cream for toothpaste and squeezed ketchup on cereal, an appointment with a GP was made.
Initially, the doctor wasn’t too concerned when he met 78-year-old Jean until he asked her what she’d had for breakfast and Jean told him: ‘Oh that stuff that comes in cardboard boxes. What’s it called Lucinda?’
Lucinda, 55, of Chipping Norton, said: ‘From diagnosis, the progress of her Alzheimer’s was pretty fast, stressful and heart-breaking. Within a year mum fell and broke her arm and shortly afterwards, her hip and became too frail to cope alone.
‘From going to a day centre three days-week she went into a specialist unit. Of course, I tried to make it as homely as possible with her own duvet covers and photographs but it was so sad. I gave up my main, full-time job in order to travel the six-hour round trip to visit mum in Lincolnshire several times-a-week.’
‘I regarded it as my payback time,’ she said. ‘Mum had done so much for me, my brother and sister that I wanted to help her. Mum was really one of the lucky ones. She did not get aggressive; instead, she regressed and become like an anxious two-year-old, who wanted constant reassurance, her hand held and to be kissed. Sometimes it was very hard to leave her, she’d tell my husband he could go and cling on to my hand. You couldn’t argue with her, you just learned to let things drop and agreed because it was so much easier.’
‘Mum had always done FLexercise (or ‘League’ as it was known then). She was the one who’d inspired me to become a teacher. Often when I went to the care home I’d put on some music and mum would want to exercise. I’d just do little easy movements with her and other residents joined in.’
In between visits Lucinda was always waiting at the end of a phone in case of an emergency until her mum died four years after diagnosis.
Lucinda, like many carers, found it increasingly hard to switch off and while she knew the value of exercise, the long-term strain of long-distance caring took its toll.
‘I put on weight because I was so busy,’ she explained, ‘and I simply didn’t have time to look after myself. I found it difficult to sleep at night and took the phone into our bedroom to be ready to get up and go at a moment’s notice. If we went on holiday it was the same. I never felt I could relax and switch off. My wonderful husband, Nigel, was incredibly supportive and totally understood because his grandfather had Alzheimer’s.
It was exercise, talking with Nigel, family and friends that proved vital to coping. As a FLexercise teacher, she knew its value for helping with relaxation, breathing and not thinking while the class is on.
‘It stimulates brain and coordination,’ Lucinda added, ‘plus help with posture, stance and core muscle strength. Plus there’s the social side – friendship, group motivation and positivity. A lot of our clients are slightly older and all of this is so beneficial, especially for those in the early stages of dementia.
‘And for carers, it’s an opportunity to set aside what has to be done and ease physical and mental tensions. When you are caring for Alzheimer patients, you often find they suddenly mentally depart and less and less frequently come back. That gets more and more difficult. If you care for someone else you need to prioritise care for yourself because you require a tremendous amount of patience and resilience.’
Alzheimer’s Facts and Figures
- Named after 19th Century German scientist Dr Alois Alzheimer who discovered how protein built up in the brain to form sticky plaques that form ‘tangle’ which cause a loss of nerve connectivity. Eventually, nerve cells die and brain damage ensues. There is no cure.
- In early days memory lapses, disorientation and struggles to concentrate and communicate. Sufferers can feel anxious, irritable and aggressive. Later, there may be delusions, hallucinations and severe agitation.
- There are an estimated 850,000 people in the UK with some form of dementia. By 2025 that figure will likely rise to 1 million and double by 2051.
- Every three minutes someone is diagnosed with some form of dementia. Over 12 months that’s around a quarter of a million people.
- 1 in 6 people over 80 will be affected and the time from diagnosis to death can be 8 -to-10 years
- There are twice as many women as men over the age of 65 affected by dementia.
Key ways to help yourself as a carer:
- Exercise – one of the greatest stress busters. It’s good for heart, body and soul as it massively reduces your sense of isolation, increases self-confidence and self-esteem.
- Do not be too hard on yourself. Carers often feel mentally and physically exhausted, guilty, stressed and depressed and that’s if we love the person we are looking after.
- Prioritise – Know your limits, especially if you have other people to look after. No matter what, carve some time out for yourself, particularly if you are feeling snappy, burnt out and frustrated.
- Share your troubles, particularly with someone who is a good listener and even better, makes you laugh and your load feel a little lighter.
- Ask for help. No, shout for it. You are only human with one pair of hands. Consider counselling and joining online forums for around-the-clock support.
- Age UK – ageuk.org.uk
- Carers Trust – carers.org
- Carers UK carersuk.org