Problems in getting help

Edward and May Smith are both 85, married for 59 years. Six years ago, May had a serious stroke and was in hospital for several weeks. She was extremely confused, lost the use of her left side and became blind in her left eye. During May’s

rehabilitation Edward’s total focus was on his wife’s recovery. This marked for him the beginning of a depressive illness/anxiety state, which was diagnosed three years later as the early signs of Alzheimer’s disease.

At this time, no assessment was offered to either Edward or May by hospital staff. No referral to social services was made. They took it for granted that Edward would cope with his wife at home. Although May made a good recovery from the stroke, she was left with permanent blindness in her left eye and some degree of memory loss; spondylitis was also developing in her spine, making walking difficult. She needed support with dressing and washing, which Edward gladly provided.

Family members started to explore the possibility of help with housework. The local social services department stated emphatically that it did not ‘do housework’ and suggested contacting Age Concern. Edward and May were not convinced that they needed this help. They felt insulted by the insinuations that their house was ‘dirty’ and saw this as an admission of not coping and feared the deterioration that this signalled. They were unhappy about paying the prices charged by Age Concern (then £8 an hour).

The Community Mental Health Team’s (CMHT’s) occupational therapist (OT) then became involved with Edward, who had been referred by the GP, and embarked on stress management techniques. Her focus was on medical treatment and little was given in the way of other practical support.

At this point Edward and May conceded that they did indeed need help with

housework and approached a neighbour’s home help who agreed to work for three hours a week. They had also organised a gardener.

As time went on, both Edward and May became increasingly physically frail and experienced a number of falls that were medically treated as individual episodes.

Then, last year, May also started to experience a series of nose bleeds that failed to stop and on one such occasion was admitted to hospital.

One of their daughters, a social services manager in another authority, travelled to see her parents and to ascertain what help was needed.

Hospital staff seemed totally unaware that Edward had his own problems or of any of the home circumstances.

The daughter argued for a community care assessment both as individuals in their own right and as carers for each other.

The OT from the CMHT, apparently, was unable to undertake this assessment.

The social work department in the hospital refused to take a referral from the daughter – they could accept a referral only from the ward.

Hospital staff queried the purpose of the assessment and May minimised the difficulties at home in order to be discharged to be reunited with Edward.

She was discharged that day with no assessment but readmitted late that night following another massive nose bleed.

She was admitted to intensive care following surgery.

Meanwhile the daughter returned home to her father who, having become

increasingly frail, required support with personal care including bathing. A phone call to CMHT evoked an emergency assessment by the social worker and a care

package that consisted of home care twice a day to help with washing/showering, supervision of medication and meals on wheels was established to support Edward. May, again, was discharged without the hospital staff checking that adequate support was in place. There followed a number of events in which problems of two

individuals were compounded in interaction with each other.

The daughter tried to negotiate some support, explaining her mother’s reluctance to have any help, which remained the position when social services staff

contacted her.

The daughter arranged a care alarm.

The care package for Edward supported May, as basic tasks were undertaken.

Both Edward and May became focused on their medical conditions, and had depressive thoughts.

May had day surgery for cataracts.

Edward was admitted to hospital, having become very weak. He stayed there for six weeks before moving to intermediate care.

May lost the home care services, as they had been scheduled for Edward – a problem compounded by the illness for several weeks of her private cleaner.

Edward was discharged home. No arrangements were made for a suitable chair – his daughter arranged this; he was no longer continent and wore pads; he fell frequently; he was admitted to a care home when May went into hospital

following a stroke; he returned home when she came home from hospital, but had to go back to the care home the following day after another fall.

May was struggling to manage with no care package and could not be bothered to cook. A different social worker did try to ensure that May’s needs as an individual were taken into account, leading to day care and a visit from a befriender.

While this story says a lot about current services, and stories such as these may explain why the older people we talked to had generally low expectations, we focus on what it reveals about the importance of not seeing people as having low-level or high-level needs. Many of this couple’s needs were low level, in the way that that term has been used. Many of the matters that really taxed the family were these ‘low-level needs’. May, for example, had many ‘low-level’ needs, as well as those for personal and home care:

finances (inability to handle money, write cheques, pay bills, deal with bank account, file papers)

home maintenance (repairs, painting)

daily living (putting out the dustbin, changing light bulbs, buying and repairing clothes)

The list of household tasks to be considered is, seemingly, endless. Other low-level support serves several functions; transport is needed not only to maintain

relationships but also to get to the dentist or chiropodist.

Some of the tasks can be undertaken by existing support services. The local Care and Repair agency had been asked to assess the damp walls in the bedroom and the uneven path that could lead so easily to another fall. Others do not have any presenting solution apart from the capacity of relatives to undertake them.

Eventually both Edward and May received their full benefits entitlements – no mean feat given the complexity of government departments. Edward no longer has the capacity to be interested and May does not have regular support to help her to spend it.