The pain of leaving home

An 84-year-old woman faces having to leave her care home – a move that could lead to her death. Our panel – Leeds older people’s team- discusses the case.   

Situation: Betty Thompson is 84 and has in the past year moved into residential care in the North East after the death of her husband, Roger, also 84, in a traffic accident. Roger was her main carer while their two children have moved to London. The loss of her husband and the drastic upheaval of moving out of her home of the past 56 years has had a troubling effect on Betty’s physical and mental health – she has long bouts of memory loss. On admission to the home she weighed barely four stone. Her doctor believed the move into care nearly killed her. 

Problem:  Betty is almost settled into the home but is still physically weak. Betty’s GP, her only local contact outside the home, has been in touch with her daughters to express concern about potential developments at the home. The home owner wishes to de-register as a care home and have all “residents” on tenancy agreements. He says this is to provide greater independence and choice for the people living in the home. The doctor suspects that it is a mere ruse to avoid meeting the new national care standards. The doctor fears that Betty might not have capacity to agree to a tenancy and thinks a move to another 24-hour care home would be best. However, he also strongly feels that yet another move for Betty may result in her death. The daughters cannot agree what is best for their mother.

Panel responses

Mick Ryan, principal case worker

In many ways this is a no-win situation for Betty. The homeowner clearly wishes to de-register and presumably continue providing a service but without the need to meet the new care standards.

He may not find this easy as the National Care Standards Commission may only agree to such a move if it can be shown that the current residents have minimal care needs. This is not the case with Betty given her described level of need.

The home can only de-register if it proves that this is a move towards independence for the residents involved – although it is difficult to see how this applies to Betty. It may also be that the homeowner’s plan faces stiff opposition or downright refusal with regard to all residents depending on their needs. If the home is typical, one may expect that most of the residents would have significant needs which could only be properly met in a registered care home.

If the owner continues with his plans, this will mean a move for Betty with the associated upheaval and further risk to her health. This represents a massive dilemma because, although Betty should be in a care home, the very systems intended to keep her safe may have to unsettle her to the point where she is moved and, as the doctor fears, dies.

It is not uncommon for residents who face unexpected moves as a result of home closures to die. It is therefore important that a thorough multi-disciplinary assessment of Betty’s care needs is carried out. This should focus on her mental health, in particular the memory loss and her physical frailty, and would need to call upon the expertise of professionals from health and social care.

Sensitive discussion would need to take place with Betty and her daughters. I also feel that the involvement of an advocate would be crucial given the conflicts in this situation.

Hopefully, timescales for any status change at the home would allow for this assessment and for a rigorous treatment plan to be put in place. This would better prepare Betty for the move if the homeowner proceeds with his plans.

Jackie Dawson, district nurse

Working with the social worker, the district nurse would be aiming to ensure that Betty’s health needs were met. This would be crucial to make sure that any further deterioration is avoided. Alongside addressing Betty’s social circumstances, the nurse would wish to explore Betty’s physical and mental problems.

First, the nurse would assess Betty’s nutritional status; she has already lost a lot of weight. Malnutrition in older people can have grave consequences if not addressed swiftly. The nurse would seek out what Betty enjoyed or disliked to eat, how meals were prepared and indeed the environment where this took place. Should the home move to a tenancy from a care home, Betty may be unable to carry out independent tasks, such as make her own meals or do her own shopping.

The nurse would examine Betty’s mouth for signs of loose dentures. Ill-fitting dentures can cause pain and discomfort on eating. A referral to the community dental team could sort the matter out.

Other conditions that can cause problems with eating include fungal infections such as thrush in the mouth. The nurse would prescribe an appropriate treatment and monitor its effectiveness. It would be essential to secure the involvement from the community dietician to ensure all aspects of Betty’s nutritional needs were met.

Once the nurse had determined the onset of the weight loss and other medical history, this information would be discussed with the GP. Further investigations such as acquiring blood samples for laboratory testing and specimen collection may be needed.

A referral to the psychiatrist would be integral in assessing Betty’s mental health. Options such as the memory loss clinic and the services of the day hospital would provide information and management of these issues. Betty’s bereavement might have caused her weight loss and deterioration. The nurse would promote an atmosphere of support at each visit to enable Betty to discuss her feelings regarding Roger’s death. It may be that the services of voluntary organisations such as Cruse bereavement care are needed to provide counselling to Betty. However, all the referrals would only be undertaken with full consent from Betty and her family.

User view

We would like to know how Betty and Roger’s circumstances were managed or supported before his untimely death, write members of Knowsley Older People’s Voice. It is not clear whether help was provided for Roger to care for Betty. This could have come in the form of care workers whom Betty would have got to know had she stayed at home after Roger died. It is not clear whether options were examined to enable Betty to be cared for at home or for a more careful and steady easing into residential care.  

The situation may not have arisen if there had been a partnership approach to managing care and support for Betty and Roger. One recommendation would be to appoint a care officer or team who are able to see through each step of Betty’s care. This becomes particularly important in the situation Betty faces in deciding whether to stay in her present care home or to move to another 24-hour care home. The appointed person or team could monitor, represent and advocate on Betty’s behalf to ensure continuity of care. 

It is apparent that Betty requires 24-hour care. The overriding concern is to do what is best for her. We would feel that the last thing she would want is to be confronted with a multitude of decisions and documents. So perhaps it would help for someone to have power of attorney to make decisions for her. If 24-hour care can be provided in the present home, this should be done to allow Betty to stay in a home where she is settling. If that care cannot be provided and Betty needs to move to where she can receive 24 hour care, so be it. 

As to the care home owner, all should respect his right to change the status of his business, whatever concerns there may be about his motives. 

As older people we strongly recommend: forward planning by local social services regarding cases like this; the opportunity for the remaining partner to go into 24-hour care; an opportunity for family members to give their relatives 24-hour care by giving them the proper financial backing – that is, the same amount of money the government would give a private care home owner. The government should supply to older people the proper opportunity to go into 24-hour care homes which are run on a not-for-profit basis instead of closing homes and pushing older people into debt.  Representing the Knowsley Older People’s Voice: Sheila Bersin MBE, Derek McEgan, Arthur Page, Cathy Ericksen, Hannah Melton and Frank Reppion