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Husbands tell of guilt and exhaustion of 24-hour job
ELDERLY people struggling to care for their spouses in Fordingbridge have spoken of their feelings of guilt, exhaustion and distress to try to highlight the issues faced by hundreds of couples in the area.
Volunteers Sara Winteridge and Elaine Rouse have just set up a carer’s hub, supported by Fordingbridge Surgery and Patient Participation Group, to encourage carers to register so they can get them local support.
They spoke to some of the husbands and wives to get their perspective on caring for their partners 24 hours a day.
Mrs Winteridge said: “Husbands who are also carers are doing a remarkable job, exhibiting resilience, love and determination to do the best, often without much, if any, state support.
“The carers and their families we spoke to do not want to tell a sob story but to highlight the reality of caring.
“The Fordingbridge Carer Hub meets every two months at Avonway Community Centre.
“As a volunteer it is already a full-time job, so we hope our success at a local level, and the possibility of expanding the model to other GPs and communities, will attract financial support to secure the project.
“There is support out there for carers but establishing what is available where you live and identifying gaps in services and securing people to fill them is essential.
“I have worked both as a senior social worker and in the voluntary sector and understand the financial pressures on organisations. So a local, community support hub is the most effective and best value way to offer carers support.”
Sometimes it gets too much
KEN and Pamela Wiggins, from Fordingbridge, have been married for 57 years.
Mr Wiggins, 84, has also been his wife’s carer for 40 years after she was diagnosed with cere-bellar ataxia, which affected her balance and co-ordination.
But while years ago his care just meant offering an arm when out walking and taking on more of the chores, the deterioration of Mrs Wiggins’ health following frequent falls, osteoporosis, frequent fractures and then dementia, means she is now completely dependent him.
The couple have gone from looking after a family and holidays to being frequent visitors to A&E with a broken fibula, tibia (twice), femur,|patella (knee bone), cracked ribs and hip and replacement joints.
Her osteoporosis was treated and, although the falls continued, the fractures reduced. But recently Mrs Wiggins was diagnosed with dementia.
She now relies on her husband to help her with everything – washing, dressing, incontinence, helping her to stand and walk and feeding her – Mrs Wiggins needs encouragement to eat and drink and often needs feeding to maintain her six stone weight.
Mr Wiggins says his wife no longer knits, reads or watches TV. Instead she asks: “What have I got to do?” Her question is repeated hundreds of times over several hours.
Mr Wiggins said: “Reassurance that there is nothing she needs to do and suggestions for activities are forgotten almost instantly and if her question is ignored, or if I am out of the room, her anxiety escalates and leads to her pleading ‘Please help me, I am not well’.”
Mr Wiggins says being unable to say or do anything that alleviates his wife’s anxiety for more than a few|minutes is very distressing.
Sometimes by evening, if it has been a bad day, he says he is mentally exhausted and sometimes loses his temper and shouts. Feelings of guilt and depression, shame and embarrassment follow, made worse by his wife promising to “do better tomorrow”.
Following Mrs Wiggins’ diagnosis the couple used to receive regular visits from a community psychiatric nurse who could offer advice and help monitor the effect of medication.
But after a change in staffing that seems to have disappeared. Now, on two days a week, Mrs Wiggins goes to the Age Concern Day Centre in Fordingbridge, giving a short break for her husband to do laundry, plan their meals, do housework, office work and gardening.
Mr Wiggins says he can cope with the physical demands, but struggles with the mental demands.
His wife’s Attendance Allowance contributes to day care and a sitting service. He has also registered as a carer with his GP and says he is thankful to a range of people who have eased the burden, including Kate Stone from the Princess Royal Trust for Carers, who holds a monthly carer clinic at Fordingbridge Surgery for advice, support and information.
At the Fordingbridge Carer Hub he met the Alzheimer’s Society dementia advisor Judy Wallis, who gave him reassuring information on repetitive behaviour.
The couple have also attended the Alzheimer’s Society monthly singing group, a carer’s café and singing group run by Carers Together and the New Forest Carer Forum at Fordingbridge Unitarian Church.
He now has someone once a week to keep his wife occupied while he goes shopping, and is contacting a specialist NHS dementia team, to advise him on techniques or medi-cation to minimise Mrs Wiggins’ anxiety.
And their family have been very supportive – granddaughter Collette had Mrs Wiggins to stay while her grandfather had a hip replacement.
Bill, 94: Caring for Doreen, 98, is eating up their savings
FOR Bill Pope, military training and forward planning are still important at 94.
Mr Pope cares for his wife Doreen, 98, who is now bedridden, 24 hours a day, but sees his caring role as part of the commitment you enter into with marriage.
Looking back, Mr Pope says his wife’s health began deteriorating ten years ago.
Over time her memory was fading; her handbag was always “lost”. Their two daughters became increasingly concerned about their parents’ wellbeing.
In recent years Mrs Pope has had a fall, injuring her ankle and has spent time both in hospital and in a nursing home trying to regain her mobility and being treated for a urinary infection.
But Mr Pope says her care did not always provide her with the level of personal attention she needed. Drinks and food were sometimes left out of reach, or went cold, and his wife needed encour agement and help to eat, and to drink.
He says he was exhausted travelling to provide this care daily and they both missed each other so much they decided she should be at home.
When Mrs Pope left hospital she was seen for six weeks by NHS district nurses, physios and an occupational therapist.
“Mislaying a drinking straw when you no longer have the strength to search high and low for it can feel disastrous.”
Bill Pope But they have had to find and pay for a live-in carer because they are not eligible for any help from Social Services towards the cost.
Mr Pope says that having saved all through their married life, it is “very distressing” to see their life savings rapidly disappearing. While Mrs Pope was in the nursing home she did receive a small allowance reflecting the component of nursing care she needed, but this is not paid to her at home.
He says his greatest wish is to be able to continue to care for his wife at home, but this has meant losing privacy by sharing their home with rotating carers. Coping involves establishing a routine and a system and knowing where everything is and having to share this with a paid carer, however good, is a challenge.
He said: “Mislaying a drinking straw when you no longer have the strength to search high and low for it can feel disastrous.”
Mr Pope was given a voucher for the Take a Break Scheme by Social Services but says the daily challenges of caring make it difficult to even think about arranging and taking a break. His own health is deteriorating, his legs are painful and he can’t stand or walk for very long. Every journey he makes has to be planned, even to turn the lights on, has to have “added value” and involve doing several jobs along the way.
Mr Pope added: “Gradually, without realising it, you find yourself a full-time carer.
“Find out all you can about what the future may hold and what help is available.”
Mr Pope is meeting MP Desmond Swayne tomorrow to talk about why there is no funding at home, however small, for the nursing component of care – if his wife was in a nursing home it would be almost automatic. He says he will be getting in a couple of bottles of Ringwood Best for the occasion.
The new hub: How you can help and be helped
THE Fordingbridge Carer Hub was set up recently with the support of Fordingbridge Surgery and its Patient Participation Group to help identify patients who are also informal carers and to get them advice and support.
Mrs Winteridge said: “Hub staff recognise that informal carers are always first and foremost something else - a spouse, a partner, a son or daughter, a neighbour or friend, who has a secondary role as a carer because of their relationship to someone who depends on them.
“Sometimes a couple may have individual needs for which they rely on the other - they may both be considered carers.”
If you look after someone who needs your help because of their illness, frailty, disability or addiction then you are a carer.
Carers provide regular help and support that others depend on from an hour to over 50 hours a week.
If you provide substantial support you are entitled to a carer assessment by Social Services (0845 603 5630 ) but a lot of advice, information and support is available with or without this and dropping in to the carer hub is a good place to start.
Mrs Winteridge added: “Don't assume your GP or other professionals are aware that you are a carer or what this involves on a day to day basis.
“In Fordingbridge and most GP practices you can let them know by completing a simple carer registration form you can pick up from reception.
“Registering as a carer does not place you under any obligation. You can ask the person you care for to complete a consent to share form if they want you to be able to discuss their health details.
"But you can register as a carer without the knowledge of the person you care for and they do not have to be a patient at your surgery.”
The Fordingbridge Carer Hub meets every two months at Avonway with representatives from The Princess Royal Trust for Carers Hampshire, the Alzheimer's Society, New Forest Carer Forum, the British Red Cross and other supporters and we invite you to drop in for a cup of tea and a chat.
Private appointments can be made to see Kate Stone at the monthly carer clinic at the surgery.The model of the hub, of working with a range of carer support groups to create a regular one-stop-shop for carers, has already resulted it being chosen as a national Quest Leader promoting carer awareness in the upcoming Carers Week in June. The next meeting is in National Carers Week on Tuesday, June 10 from 9am until 4pm at Avonway Community Centre.
If you need help with transport 2 Bridges Neighbour Care group will try to help on 0845 838 5902. You can bring the person you care for but if you need a sitting service, or any further information on the hub, call Sara on 01425 654426 or Elaine on 01980 259142.
Anyone who has time they can offer the hub can contact the above numbers, or email firstname.lastname@example.org.
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