Caregivers of people with MS are involved in a range of assistance and support activities throughout the course of the disease. The result is that often caregivers evolve and learn skills in their caring role. For many, this means a gradual change to adapt to MS care needs rather than the sudden and urgent care needs that are more common in other situations, for example following a head or spinal cord injury.
When a person with MS experiences difficulty such as weakness, spasticity, or other functional loss in the upper or lower limbs, he or she may require assistance with the activities of daily living (often referred to a ADL). These include any daily activity a person performs for self-care (feeding, grooming, bathing, dressing), work, homemaking, and leisure. Depending on the specific needs of the individual, a carer may provide assistance with activities of daily living at different times during the day and night.
The personal and sometimes intimate nature of assistance with activities of daily living requires mutual trust and respect between the person providing care and assistance and the person with MS. In order for carers to be as effective as possible, it is helpful for them to be knowledgeable about safe transferring techniques, personal hygiene techniques, basic motion exercises that can be performed at home, and some of the professionals who may be involved in the support and care of people with MS.
Transferring
Transferring refers to an action that moves a person from one place to another, for example, from a wheelchair to a bed, toilet or car.
Many people with MS are completely independent in performing safe transfers within their own homes and in other environments. Others require assistance in transferring. Unsafe transferring techniques can be harmful for both for the person with MS and for their caregiver, resulting in falls and stress on the back and other parts of the body. The caregiver and person with MS can learn safe transfer techniques from a physiotherapist.
For people who experience spasticity (particularly upon waking in the morning) and require assistance moving from a bed to a standing position, wheelchair, or other type of chair, the transfer can be made less uncomfortable with the help of the caregiver.Moving the legs, hips and knees using light stretching exercises, done in a slow and rhythmical manner, can help to ease spasticity and can also help to conserve energy for when the transfer is carried out.
Important issues regarding transfers:- The caregiver should be sure to prepare everything necessary prior to beginning the transfer technique, for example positioning the wheelchair correctly.
- It is important that the caregiver communicates with the person with MS throughout the transfer the actions or movements he or she is planning on performing, so the person with MS knows exactly what to expect as the transfer is occurring.
- When transferring from a sitting to standing position, the feet of the person with MS should always be in firm contact with the ground.
- The caregiver assisting the transfer should keep his or her feet apart, providing a wide and stable base.
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Personal hygiene and motion exercises
It is important to discuss personal hygiene techniques with a MS nurse or other health care professional. It is also important to get professional advice from a physiotherapist with regard to motion exercises, as these vary for different individuals.
Working with the physiotherapist and occupational therapist
Involvement of the caregiver in assessments and visits with the physiotherapist and occupational therapist is essential. While the
| person with MS is ultimately responsible for accepting or rejecting suggestions for therapy, adaptations and assistive technology, the caregiver’s involvement in this process will increase adherence to suggestions made by professionals, particularly within the home environment. This is especially true when suggestions require the assistance of, or input from, the caregiver. Examples include a home exercise programme or installation of equipment, such as a lift.
Further, an occupational therapist or other professional may evaluate the home environment and give suggestions for eliminating architectural barriers, adding accommodations, and may make recommendations for improving caregiving techniques. These all require active participation from the person with MS and their caregiver, who may both be able to enrich the evaluation of the professional by providing important information regarding the home setting, use of home appliances, and the caregiving routine.
Home accommodations
Making accommodations to the home can help ensure that care and assistance are efficient and safe. These accommodations can include, among many others, strategically placed hand or grab rails in the bathroom, kitchen and hallways, shower and bathtub chairs, electric lifts, ramps, widened doorways and adjustable beds.
Assistive technology
Assistive technology includes any item, piece of equipment or product system, whether acquired commercially from a retailer or customised, that is used to maintain or improve functional capabilities of disabled people. There are many different types of assistive technology that can make providing care to the person with MS safer and more efficient. Please refer to Issue 7 of MS in focus on rehabilitation for further information.
There are many factors that can influence whether or not devices are used, such as taking the user’s opinion into account when selecting assistive technology, changes in the needs of the person with MS, training and an opportunity to test equipment. Involvement of the person with MS and his or her caregiver throughout the process of evaluating and choosing assistive technology also helps to assure proper, safe use.
Further, due to the changing nature of MS, assistive devices may not be long-term solutions, and invariably some types of devices become obsolete. The preferences and lifestyle of the person with MS may also change. For these reasons, regular assessment for assistive technology needs is important.
When particular attention is needed For people with MS who experience a loss of sensation, attention to certain caregiving activities is very important. Loss of sensation can result in an inaccurate or lack of perception to temperature, pressure and pain. If not adequately identified and considered, loss of feeling can result in skin breakdown, scalding from hot bathwater, and other complications.
Regarding insensitivity to pressure, the buttocks, heels and elbows are particularly at risk. For people with MS who require assistance in positioning while lying down or sitting, continual turning and re-positioning by the caregiver is often necessary so that skin breakdown does not occur. This task can be particularly trying for both people, especially during the night. The physiotherapist can provide advice on pressure mattresses, the positioning of pillows and a re-positioning schedule.
Conclusion
Effective caregiving can be achieved with the use of skills and tools that are acquired through collaboration with the physiotherapist and occupational therapist. These professionals have an important role in evaluating the caregiving situation and in making recommendations for optimising caregiving activities, as well as in supporting caregivers through information, training and encouragement.
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