What follows is important information for the home nursing service which gives care to people with neurodegenerative conditions who keep living at home. We’ll talk about the role of the home nurse and about the returning needs and problems you get confronted with.
What is the role of the home nurse? Our goal is to offer a holistic nursing approach to support our patients and their families. This embodies a couple of tasks like the care for hygiene like showering, the controlling of symptoms, and in the terminal stage: good palliative care, but also psychological, emotional, social and mental support. How can you offer these services? You pay visits on a regular basis – whether this is once a week, three times, monthly or every six months is dependent of the individual needs of the patient. By paying regular visits, you can make an emotional connection between the client and the medical staff, you can follow up the development of the illness, you can constantly anticipate on new needs and adapt the effectiveness and relevance of the nursing service to constantly changing circumstances, while at the same time you try to write out a schedule that fullfils future needs.
It’s best if you stay flexible by not determining the length of your visit beforehand. At a certain day you’ll have to be able to adapt your time schedule to pay an unexpected visit; this happens pretty often. A big part of the caregiving should be spreading and sharing information, giving feedback and reinforcing the mutual caregiving. When we say this, we’re thinking about members of the team, neurologists, family doctors, other involved professionals in health care, family members, external caregiving persons and of course most importantly the patient.
Home nursing is best planned through a mutual approach. Formulating a nursing program that’s at the same time adapted to the context of the person in question, demands bringing together information of everyone who’s involved in giving care. Home nurses are always an instrument in approaching other therapeutic or specialized services so that the interventions will be there at the right time, are specialized and support the control of symptoms.
The nurses often refer to and use the expertise of our colleagues, and the help of the ALS union, general practitioners, community services and other home nursing services. Open communication channels and multidisciplinary teamwork are of the outmost importance for the succes of a home nursing plan and the offering of specialized help at home is indeed bound to the environment and to the individual.
Paying attention to the psychological, social, mental and emotional needs of each client is an important part of an holistic approach. The need to this aspect of the care giving is being evaluated to a certain extent with the needs of every patient and every family who have to deal with ALS. Because this illness is continually progressing and making the patient more and more dependant, a lot of emotional and psychological questions, tears and fears may rise in certain families. Sometimes these are more outspoken and a need exists to share this all. Certain fears can be taken away, others can be only be shared, but even then sharing can help diminish the great feeling of anxiety for both the caretaker and the patient.
Home nursing plays a big role in this apart from the other professional care givers, to give emotional and mental support. Our home nursing service can also offer other services like a social worker, a music therapist or a pastoral worker so help with a personal, practical and spiritual character is provided. Nurses who are part of the multidisciplinary team live with the patient and his family, pay attention to the physical comfort and the emotional support and are sometimes confronted with unique and sometimes difficult experiences. They have to process this in their own way. It’s important they find peace of mind and a certain degree of existential meaning.
Some of the more clinical problems you’ll get regularly confonted with are blatter- and colonproblems. Most often this is constipation. Constipation can be a result of different scenarios like a change in the nourishment pattern, changed mobility, diminished intake of fluids, medication or weakening of muscles. Constipation has to be handled with great care and an understanding of the physical restrictions, the progressive character of the illness and thinking ahead are needed. With a careful individual approach while taking into account all environmental factors and other possible influential factors, the nurse can often offer an acceptable solution from a number of strategies.
The best thing to do is to plan ahead colon problems instead of waiting until the problem occurs. A whole range of solutions exists for blatter problems as well, but the eventual solution is based on an individual approach. Nurses are responsible for the introduction, the selection and the implementation of specialized tools and for the instruction of the patients and their families, as for other external caregivers, so that home nursing is facilitated.
Changes in the skin can usually be attributed to longer periods of uninterrupted pressure which is casued by immobility and by diseases that are related to ailing hygiene. All of these problems have a solution and are even preventable by the use of some simple strategies. First we’ll talk about hygiene.
Sorbolene is often used, or products based on bathing oil like Hamilton’s – no soap because this dries te skin and causes an itch. To prevent further drying of the skin it’s best you also use Sorbolene after showering or even a few times a day when the skin is dry. We also recommend to make sure you dry off all little corners en sides, like between the toes, in the groin area, and that you sometimes use cornflour in those little corner and sides to catch transpiration en to diminish skininfection or flaking.
Anti-funguscreams and powders are available for the treatment of fungusinfection and the prevention of it; fungus usually develops in a warm and moist environment, and that’s why it’s so important to keep all little corners and sides rubbed dry and to take the necessary measures to diminish transpiration. Clothing can play a role in this as well; cotton is known to improve air circulation, to counter transpiration and to avoid the development of warm moist environments in which these inconveniences occur. Regular skin investigation of places that are most susceptible to irritation linke ankles, hips, heels, sacrum and ears are important for all people who are involved with care giving. Making these people conscious of possible problems is one of the first tasks of the nurse and the family doctors. They can also refer to a an ergo therapist for interventions that reduce the pressure on some places.
Anxiety attacks significantly occur more when there is a shortage of breath, when there’s general anxiety, when there’s pain and when there’s mental tension. They play a key role in the vicious circle of these symptoms when the causes aren’t taken away or when one can’t learn to control these symptoms. It’s the task of the home nurse to take away stress and the anxiety component and to get control over the situation for the well being of the patient and the care givers. One tries to do this by giving additional support like an extra visit, a phone call, a referral to a professional care giver, the family doctor or even an intake in a hospital if this is what the patient and his environment want.
Another goal should be to teach the patient a better position for his comfort and to be able to get more air when he’s in a period of breath shortage. Try to solve this by proven methods. Sometimes a bit of medication can be attributed, for instance small doses of benzodiazepines like Clonazepan which are drops administered under the tongue to reduce anxiety attacks. Morphine can be administered as wel in small doses, orally or through injections. Morphine helps speeding down breathing and this way you stop the anxiety attack which results in better comfort. After talking to and getting the permission of the family doctor, small doses of this medication can be kept in the house, to use in such cases. Family members could learn how to adminster this medication.
A footnote considering palliative care. We advise to approach this care as an active, complete care for people with an incurable illness, with the goal to keep their general health as optimal as possible and to try to achieve an as high as possible quality of life while he stays as independent as possible.
Home nurses can organize the care for someone who chooses to stay at home until the end, surrounded by family, optimally. For this the necessary requirements are giving good palliative care, good symptom treatment and support of the family that’s tuned on the wishes of the patient and his family. At any time this is something you have to be sufficiently conscious of, from the beginning of the cooperation with your client.