A Lone Carer
20 July 2007 | Patrick Rice, individual contributorShortly I’ll be 76 and my wife 73. She’s been afflicted with Alzheimer’s for about 12 years.
For the first seven years I cared for her at our home in the countryside. Our nightmare began on 1 October 2001. She’d entered the stage of losing special awareness, which results in falls. That morning she had a fall and was rushed to A&E with a broken arm and dislocated shoulder; she was also doubly incontinent. By 8 o’clock that evening she was settled in a ward. She was then transferred to a second hospital, where she was drugged up on Temazepan (without my knowledge) and then returned home to me in a wheelchair with most of her speech gone. She was then moved six times in six weeks, until she was placed in a nursing home.
The move to a nursing home was bad for both of us. Though I spent more than eight hours a day at the home helping to change her pads and feed her she became bedridden. Reduced to less than six stone, she developed very bad pressure sores and rigidity set in. Each day I visited, I felt she had given up the will to live. The long daily drives to the home and seeing her condition worsen took its toll on my health.
Placing her in the nursing home was like putting her in prison, the only difference being that in prison food and lodging are free, and one day you walk out.
The bad experiences led me to think I could do better by going it alone. I sold our house and moved to a more suitable house to care for her.
During the first six months at home she was admitted to hospital several times where she was put on a drip and oxygen mask. When I was told there was no hope I insisted on having her home to die. One evening, when she was drifting in and out of consciousness, I called her GP, who advised me not to sit holding her hand overnight as ‘they tend to pass away if you go to the toilet or for a drink’.
At Christmas in 2003, I decided to dress her and lift her into a wheelchair I’d bought; my hands were shaking with excitement as I wrapped her up and took her for a walk.
Four years after leaving the nursing home, she weighs around eight and a half stone and is healthy, though she can’t move or speak. This doesn’t stop me taking her out, by strapping her feet and body into the wheelchair then lifting her into the car I take her shopping twice a week.
My life might be compared to the life of a single parent only my baby’s a bit bigger and can’t move or make a noise. These past four years of caring for her totally alone has proved wonderfully rewarding. We’re still together and, God willing, we’ll make 24 September, to reach our 52nd wedding anniversary.
When asked by a Psychologist why I’d removed Jean from the NH my explanation was, placing her there was like putting her in prison, the only difference, in prison food and lodging was free and one day you walk out. Appalled, asked what I considered was the alternative? Answer: for loved ones to be cared for in their home where possible. Otherwise small units within their own communities, where there’s a high number of older people. She considered it to be a too expensive venture. When one considers the cost of running these homes way out in the countryside, my alternative is favourable. Presently there’s the transport of, food, services, staff plus the stressful round trips of relatives. Many workdays are lost by working relatives due stress and depression, not to mention their medication.
The cost to me having Jean in a NH was more than the present allowances paid for her care at home. Our contribution was in excess of half my service pension, her pension of almost £60 a week, only while in the home it was made up with income support. The remaining amount was paid by the taxpayer. Many people caring for loved ones, who’re less disabled than Jean receive the higher rate of mobility allowance, because she’s over 65, though diagnosed at 63yrs old. In colder weather to keep the heating on all day like in NHs, is not viable. Extra washing, ironing, TV to entertain her while I do chores and charging the hoist’s batteries add to electricity costs.
I’m happy with my lot except it would be nice to find preventive medicine was practised which would be very cost effective, such as both of us having a check-up, even once a year. The last one was in Nov. 05, just a blood pressure and urine test!
July 22nd, 2007 at 7:22 pm
As a dementia care `specialist and past home manager I entirely agree with you that people with dementia are nearly always better off in their own home with people they love caring for them. I am sure that it is possible to develop a model of community care, to provide suport for home carers, based on small geographical areas served by round the clock ‘patch’ teams. Too much money is currently being spent on hotel style residential homes which are not home-like. These need very expensive teams to manage them, which is part of the reason for the escalating costs of care for older people.
July 25th, 2007 at 10:07 pm
I agree that care in most nursing homes is not as individualised or as effective as that provided by a caring relative at home. sometimes the care at home is done for the wrong reasons but very rarely, not as often as poor care is delivered in care homes.
now that we have closed most NHS and council care and rehabilitation homes it is the private sector that provides this care. their primary remit is profit, and as the NHS leads the way to show, the bigger a home the lower the cost per person and the more chance of making a profit. we cant blame the private sector for this, we ask the same from our pension funds and shares. if we want state provision we will have to pay. it takes a long time to turn round the NHS and social services and at present they are being pushed by our government to use the private sector.
there are no easy answers.
July 28th, 2007 at 11:03 am
I have two comments.
If we all agree that people are better off in their own homes, then what help can the state offer to enable them to stay there? How does the cost of round the clock live in care compare with the cost of a care home? In my experience it is comparable, but my experience is not very wide, and of course there remains the cost of keeping the home going, on top of the cost of care. Nonetheless, it would seem essential that the state provides some regular relief for the carer and at least shares the 24 hours a day 7 days a week work involved.
My second point is about medical care. The person I care for has a lot of medical attention, and her GP is exccellent, but it is all about bits of her – her hearing, her eyes, her digestive system, her legs etc etc etc. We schlep around from appointment to appointment, exhausting for her and time consuming for everybody. It is up to us to make an appointment if something seems to be wrong. There must be a way of doing this better and in a more co-ordinated fashion. I wonder if there is a need for someone like a specialist nurse to have a proactive role in monitoring the health of those older people who have multiple conditions.
September 24th, 2007 at 5:57 pm
The way the NHS is working (around here, anyway) suggests that no consideration is given to the effect on carers and carees of having to travel hither and yon to get any sort of service.
So long as their time is not taken, it seems unimportant that e.g. I have to allow a half-hour each way for a journey of only 2 miles, because Dad has to go in a wheelchair taxi.
Also, every organisation seems to be trying to shift their costs to someone else. The NHS has been shifting costs of caring for elderly people onto Social Services or families whenever they can. As a minor example, for the last two years the District Nurse has visited to give Dad and I our flu jabs. Not this year – we have to spend half an hour each way and a £15 taxi fare to go to the surgery. Only those being regularly visited by District Nurses or in Nursing Homes will not be expected to go to the surgery. There must be many people who just will not get their flu jab – what will be the cost in ill-health/treatment for the proportion who will get flu? We have also lost the guarantee that patients over 75 would get at least one home visit from a doctor every year – having not seen a doctor for at least 2 years, I had to take Dad (disabled and diabetic) to the surgery to have his medication reviewed properly instead of by a phone call.
The proliferation of firms selling wheelchairs and other equipment which was hitherto provided by the NHS is another area of costs being shifted.
How are we to care for disabled people of any age at home, if the health services are cutting the support they give us?