such incontinence has on the quality of Thomas’s life.
Following this initial assessment, the resultant nursing care plan may include the following:
Monitoring of the side-effects of any medicines that Thomas may be taking. All medicines have side-effects and some of these may affect his levels of urinary and fecal continence;
Ensuring that any continence aids that Thomas normally uses at his care home continue to be used whilst on the hospital ward. This ensures continuity of care;
Ensuring that any continence aids such as pads are used appropriately and correctly, are fit for purpose, fit Thomas comfortably, do not leak, are changed regularly and are not visible underneath his clothing;
If appropriate and possible, encouraging Thomas to use ‘ordinary’ toilet facilities, bearing in mind that his mobility is decreased;
Ensuring that Thomas’s abilities and needs are reviewed regularly.
Washing and dressing
Thomas requires assistance with all aspects of personal hygiene, oral hygiene and dressing. This involves the choosing of cleaning and personal and oral hygiene products, the choosing and purchasing of clothing and choosing which items of clothing to wear on any given day. Thomas, being doubly incontinent, is likely to require extra assistance to maintain optimum personal hygiene. Such assistance must be offered gently, sensitively and with the utmost care and attention to detail, including privacy.
Controlling temperature
As Thomas is unable to tell you whether he is hot, cold or feels ‘just right’, let alone to control his own temperature, Sally will need to be aware of any subtle changes in his behaviour (whether, for example, he appears more agitated or aggressive or less engaged than usual), in facial expression and body language. Sally will also need to report and record these subtle changes as they form most of Thomas’s communication repertoire, and then act upon them.
Such actions may involve:
Offering to decrease or increase the amount of clothing that Thomas wears
Increasing or decreasing the amount of bed covering (blankets) that Thomas has
Increasing or decreasing the ‘ambient’ temperature through the use of small fans or portable heaters, if appropriate and safe.
The effects, if any, on Thomas’s behaviour and how he communicates need to be monitored, reported and recorded.
Mobilisation
Thomas has profound mobility problems and is unable to walk. However, he is able to weight bear for very short periods of time and to stretch out his arms; these abilities must be encouraged and may be useful in helping Thomas to get dressed and undressed. The advice and support of Thomas’s care home staff, the physiotherapist and the occupational therapist are likely to be essential to maximise Thomas’s mobility capacity. Although unable to walk, Thomas does own and use a purpose-built wheelchair and this wheelchair must be maintained and utilised whilst he is on Sally’s ward.
The physiotherapist would also be able to advise on a number of simple physical exercises that could prevent muscle and joint pain and keep his joints and limbs working and mobile.
Working and playing
It is unlikely that those with a PMLD are able to work in the same way and on the same basis that Sally is able to. It will be unrealistic for those with a PMLD to obtain and hold down a paid job in a shop, an office, a factory or on a hospital ward as an HCA or nurse. However, without being patronising or condescending, those with a PMLD are capable of engaging in a number of ‘work-related’ activities around the house and at any day care facilities that they may attend. Thomas, for example, enjoys assisting with the housework and the preparation of meals and cooking where he lives. This he does through holding the vacuum cleaner’s hose pipe and pushing it across the floor, holding a duster and wiping the table tops and mixing food (such as a cake mixture) in a bowl or helping to make sandwiches. Thomas may need assistance to understand why he cannot engage in these activities whilst on Sally’s hospital ward.
Thomas does enjoy going out shopping and for coffee, and accessing the countryside near where he lives. It may be appropriate for Thomas to be assisted to visit the hospital café or restaurant whilst he is in hospital.
Expressing sexuality
Of all the twelve ADLs, this is likely to be one of the two most contentious and difficult for nursing and other care staff to work with. Yet human sexuality is a crucial aspect of the human identity and what it means to be human. Thomas, despite having a PMLD, has the same sexual drives and needs as anyone else. However, expressing sexuality involves more than just the physical act of sex, as it also encompasses such diverse elements as clothing styles, use of cosmetics, hair styles, use of language, social and employment activities and even the music one listens to.
Sally’s role is to:
Understand how all these elements impact upon the person who is Thomas
Be aware of and understand how Thomas expresses his sexuality
Safeguard and promote his individual choices
Ensure that his right to privacy is recognised, safeguarded and promoted.
Sleeping
Thomas experiences occasional problems in sleeping at night due, in part, to his tendency to sleep during the day because of under-stimulation and boredom, and his need to be turned regularly at night in order to prevent tissue breakdown. A number of issues need to be addressed here:
Thomas’s sleep pattern needs to be monitored. This must involve an assessment of both quantity and quality of sleep as well as Thomas’s comfort (noise levels, whether he is too hot or cold and the suitability of the bed and mattress) and the actual timing of his sleep patterns
Thomas needs to be kept fully engaged in social activities during the day
Disruption to Thomas’s night-time sleep pattern must be kept to a minimum
Thomas’s medication may need to be reviewed as insomnia may feature as a side-effect of some pre-existing medication and the introduction of ‘night-time sedation’ may need to be considered (although this is likely to be a last resort measure).
Death and dying
As with sexuality, death and dying is one of the two most contentious ADLs. Whilst Thomas shares this ultimate destiny with all of humanity and, indeed, with all living things, this is not to say that Thomas will die or is likely to, whilst in Sally’s care. Nonetheless, the possibility of Thomas’s death must be acknowledged and accepted.
Sally’s roles are to reassure Thomas and explain to him what is happening in ways that he can understand and to liaise and work with other members of the hospital care team, including the hospital chaplaincy team if appropriate, Thomas’s family and Thomas’s care home staff, in relation to end of life care (whether these needs are perceived or actual).
CONCLUSION
As can be seen from the above, PMLD affects Thomas in virtually every aspect of his life. It is likely that, at some
