For amyotrophic lateral sclerosis caregivers advice

Upload time:2016-12-12 Browse:

Author: Professor Li Xiaoguang
This article reprinted from the WeChat public number: nerve Xiaoguang, Neuroxgli. Copyright belongs to the original author, please indicate the source.
ALS refers to ALS patients with family caregivers, mainly to complete the nursing work of relatives. With the progress of the ALS, patients gradually lose their ability to live independently, more and more daily life activities need more help. Caregivers need to put into the care of patients with ALS more and more time. Dealing with personal and social, psychological and emotional burden on limited caregivers. Caregivers should often collect information about ALS, including from the time of diagnosis to the late decision, and end of life care, and actively participate in the communication between doctors and patients with ALS. Some of the symptoms of ALS will bring obvious difficulties to the nursing work, such as when patients lose the ability to communicate effectively, and it is difficult to their emotions and ideas. The use of assistive tools can help improve communication skills. There are several studies have shown that when patients receiving mechanical ventilation, the burden on caregivers will increase the quality of life also decreased, and the ventilator care burden increased significantly, nursing costs also increased significantly. For most of the ALS patients and caregivers of couples, sexual life may be another difficult problem to solve. The problems include decreased libido, sexual partners or their caregivers lack of initiative. The most common cause of this phenomenon is the decline in physical strength and body image caused by ALS.
A group of British and German reports show that half of ALS patients die at home. Prospective patients may increase the imminent death of caregiver distress and anxiety. However, there are reports that the majority of patients with ALS died without pain, if a good palliative treatment, the patient will not die of suffocation.
Some families have been suffering from grief when they were informed of the diagnosis. For the future will be the loss of loved ones and the loss of loved ones in the same process as the families of patients suffering, leading to psychological barriers. Lifestyle changes and economic pressure will tend to make caregivers feel the future lack of hope.
Recommendation:
1, caregivers should recognize their dual role in disease care in the process. They were on the most important, and patient care in the process, they are under pressure, when the patient's own problems, should take the initiative to share and seek help.
2, the best caregivers from the time of diagnosis, patients and self-care ability, will participate in the nursing process.
3, should consider the health needs of their caregivers. Seek physical, psychological and spiritual help when needed.
4, maintain between patients and caregivers communication is very important.
5, patients and caregivers / family members should know, before there are some ways to let patients without pain leave.