The names of the service users mentioned in this article have been changed.
Situation: Sarah Devlin is 72 and lives with her husband, Chris, 75, who is her main carer. Two years ago Sarah suffered a stroke, which left her with a left-sided weakness. She also suffers from diabetes mellitus, and since her stroke needs regular insulin injections. She has a problem with her weight and her mobility is limited to walking around the house. A stair lift has been installed in the home to access the bathroom and bedroom. Chris Devlin takes Sarah out in the car as regularly as he can, but has health problems of his own. Although the local authority home care service has been providing daily assistance with personal care needs, Sarah and Chris manage with support of their close family.
Problem: A referral came in from Sarah’s GP. Sarah, whose health had been deteriorating slowly and surely, has now suffered another stroke, but this time affecting her right side. This has put greater strain on the situation. Sarah’s mobility has been even more restricted and she is now confined to bed. The extra pressure and demands this has put on her husband now means he is struggling to cope, even with the support and assistance of family and home care. Indeed, the physical and emotional stress he is enduring is causing his health to noticeably deteriorate.
A GP referral to our intermediate care team would trigger an assessment and provision of care for Sarah, within her own home, until she had improved sufficiently to cope again with her husband’s help. If, following assessment, it was felt that Sarah could not be supported at home a community intermediate care bed would be considered. Following this initial multi-disciplinary assessment the level of care required to maintain Sarah at home would be determined.
This could be up to four visits daily to assist with personal care and toileting until recovery began. If necessary, a night sitter would be offered to assist with her care during the night as Sarah is unable to get in and out of bed without maximum assistance. Arrangements would also be made for the night sitter to contact the district nurse night sister should any problems occur.
A moving and handling risk assessment would be undertaken to determine if any handling equipment would be required to minimise the risk of injury to both staff and Sarah. Daily physiotherapy and occupational therapy would be started and progressed to encourage Sarah to assist staff with her personal care and to improve her mobility. Assessment and treatment of both upper and lower limbs would be included. Visits would be gradually reduced until one visit daily was required to assist with personal care. This would be referred back to home care for long-term provision.
Outdoor walking and the negotiation of steps outside her home would also be undertaken to enable Sarah to continue her outings with Chris. Another problem which could arise is with her diabetes. Poor mobility and a poor diet and fluid intake, due to the stroke, could result in this becoming unstable. A nurse would monitor Sarah’s blood sugars and diet and fluid intake regularly, alongside Chris, and advise on the appropriate dosages of insulin to be given.The staff of the intermediate care team would work with Sarah and Chris to reach the point where the team were confident that both of them could manage between themselves and their family. Throughout the programme, Sarah’s GP would be informed of her progress and would visit when necessary. All care would be agreed with Sarah and Chris.
A referral to the district nursing team from the GP would lead to an urgent assessment for Sarah. The district nurse would assess whether Sarah could remain in her own home, or whether Chris felt he needed more support. The district nurse would also look to establish, by discussing with the GP, if Sarah’s condition was clinically stable enough to remain at home. In light of the information provided and with her deteriorating health needs, she may need to be admitted to hospital.
If it has been agreed to keep Sarah at home, the district nurse would explore a variety of options with both Sarah and Chris. The district nurse would refer to the intermediate care team or joint care management team to discuss the situation in the first instance, and would seek to work along side them. It may be decided that the district nurses support Sarah with taking her insulin, complementing the work towards rehabilitation following the stroke.
If Sarah’s dexterity has deteriorated she may find it difficult taking her own insulin. Chris may feel this is another strain upon him. The district nursing team would be able to provide teaching and guidance around administering insulin, blood glucose monitoring and dietary information.
As Sarah is being nursed in bed, the district nurse would look to prevent sores developing on the sacrum (a triangular bone in the lower back which forms part of the pelvis) and other associated sores. Being diabetic could be more problematic for Sarah should sores develop. Equipment designed for relieving pressure sores would be needed and its use regularly monitored. Following a further stroke, Sarah may encounter problems with incontinence. The district nurse would need to address this in a sensitive manner, providing advice or referral to specialist continence nurses as needed.
Long term, once the intermediate care team’s programme has been completed, the district nurses would seek, with Sarah and Chris’s consent, social work input to explore options such as regular respite or daytime sitting services to help out Chris with his caring duties. The district nurse would maintain regular contact with both Sarah and Chris to ensure they were managing at home and linking in with any statutory or voluntary agencies should the need arise.
Sarah and Chris Devlin need and rely on each other a great deal, writes Pauline Digby. As you get older you become even more dependent on each other. Your family may do their best to help out, but as they often move away and have their own families and own lives and different demands on their time, so their help can only be occasional. The problem is that as your dependence on each other increases, your age and health mean that your ability to physically care decreases. Sometimes it’s too hard but you don’t do it very well and this angers and upsets both of you: the one who can’t do it and the other who resents that you can’t do it.
If you have a stroke it can change your life. A big part of Sarah and Chris’s relationship is being able to get around together – lovely as home can be, you don’t want to spend all your time there. Trouble is, poor Sarah is now confined to bed. She needs help from social services and doctors and nurses and others to see what can be done to get her more mobile. Chris has got to be made to feel comfortable with receiving help with Sarah (and so should Sarah come to that) and must be re-assured that none of this is his fault.
Professional workers need to take this pressure from Chris’s shoulders – to take the pressure off Chris and Sarah’s relationship. Sarah needs Chris to be well and with all that is going on he is beginning to become quite unwell. Indeed, it must be in social services and health services’ best interests to keep Chris well. He must have saved them a fortune over the years.
It might also be time to think about moving to a more suitable house, such as bungalow. Stair lifts are cumbersome and awkward – and a normal lift would be too expensive, I imagine. Moving can be one of the most stressful things you do, and perhaps Sarah and Chris do not need any more stress in their lives. However, it could change their life for the better.
Being in bed all day must be frustrating for Sarah. She could get bed sores and this can be very painful. I’m sure she will be getting medical supervision at all times. However, while looking after her body is important, it is equally important to look after her state of mind. Keeping her mind occupied and working healthily will go some way to making things more bearable than they currently seem to be.
Pauline Digby uses a day service for older people. She prefers not to use her real name.