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Special Information
WHAT KIND OF A DISEASE IS ALS?

Amyotrophic Lateral Sclerosis (ALS) is also known as Motor Neuron Disease. The disease is caused by the loss of motor cells (neurons) in the section of central nervous system called spinal cord and brain stem. The loss of such cells causes loss of strength and mass of the muscles. Mental function and memory remains unharmed.

The weakness in muscles can start in the hands or legs, mouth, pharynx section or tongue and spreads by advancing continuously. Since this spreading can affect the muscles related to swallowing and breathing, it may cause difficulties in talking and swallowing. In the advanced stages it may also cause respiratory inadequacy. It is observed more frequently in adult ages (40’s-50’s) and at a higher rate in men rather than women. It may occur in younger and older ages and mostly in thin people.

 Importance of Home Caring of ALS Patients.

Meeting the physical, social and spiritual needs of individuals diagnosed with ALS is crucial. Particularly, the disturbance of daily living activities and the restriction of physical activities are the situations that bother those patients the most. All individuals diagnosed with a chronic disease or their relatives incur personal or emotional losses due to emotions such as the loss of trust and respect, intra-family status and independence, rejection and hopelessness. Since the individuals diagnosed with ALS are dependent on different rates in their daily living activities, they require long-term follow-up, control and care. Since that follow-up and caring is not possible to be provided in the hospital environment on a constant basis, it must be carried on at home.

Home health care is a wide and integrated part of the health care delivery system that provides healthcare services in the own residential areas of the individuals within their lifecycle. The objective of home caring is providing, improving, maintaining recovery as much as possible, minimizing the potential complications, and as a result, providing a comfortable end of life that will be experienced by every single individual.

 The people who provide home care to the ALS patients are usually family members, friends and neighbors. Particularly, the female family members are being considered as the natural caregivers and their self-sacrifice is taken naturally.

 ALS disease brings many problems in its wake. Some of the problems that may be caused by ALS and the suggestions for the patient and the relatives to overcome such problems are listed below.

 

  1. Nutrition Problems:

What must be taken into consideration in nutrition?

  • Provide your patient to eat on regular basis
  • Give time to your patient for eating
  • Feed lighter foods in frequent intervals
  • Help them to eat when necessary
  • Allow your patients to choose their meals
  • Observe whether they have difficulties in swallowing.
  • Avoid feeding hot foods to the patients.
  • Divide the solid foods such as meat into small pieces
  • Prepare soft meals for your patients who have difficulties in swallowing and help them to eat

 

  1. Respiratory Problems.

What can be done regarding this problem?

  • Respiratory insufficiency may develop in your patient due to muscle weakness and being bedridden. When the respiratory insufficiency and the side effects linked to that symptom are avoided or treated, ALS alone does not cause death.
  • Monitor the respiration of your patient and inform your physician if there are any differences (not being able to take deep breaths, a weak coughing or low tone of voice particularly when lying flat)
  • If your patients are bedridden, change the position of your patient at least once in every two hours during the day.
  • Provide them to breathe deeply and to cough at each time you change their position. Get this procedure done 5 to 10 times at each change of position
  • Provide them to have fluids at least 10-15 glasses of water per day if possible

 

  1. Hygiene and Personal Care Problems

What can be done to assist hygiene and personal care?

  • Provide the hygiene needs that cannot be covered by your patients (bath, hair washing, skin care and oral care)
  • Help your patients to have bath or shower when required
  • Notice the needs such as nail, hair and oral care and help them to meet such needs
  • Encourage them to be independent as much as possible and to get dressed themselves.
  • Give plenty of time to your patient during the self-caring activities.
  • Getting dressed or not being able to get dressed may often be challenging for the patients whose movements are limited. Therefore, choose the clothes that are easy to wear by your patients. Make sure there are no zips, buttons or ties on the clothes.
  • In general, getting dressed must not restrict the joint movements. Lightweight or loosely weaved fabrics must be used.
  • Help your patients to have bath/shower. Provide safety in the bathroom (for example; non-skid mats, handles/hand grips, etc.)
  • Do not leave your patients alone if your patients have difficulties in going to the toilet alone.
  • Be cautious against falling down when they are going/being taken to the toilet.

 

  1. Disorder in Social and Verbal Interaction.

What can be done regarding this problem?

  • Assist your patients to define new behaviors that improve the effective social interaction of your patients.
  • Try expressing your emotions to your patients at ease. Also provide an environment in which your patients feel free to express their emotions to you.
  • Make plans to spend joyful time with your patients and other family members as well as with close friends and family friends.
  • Spare time to your patients when they wish to talk and listen to them patiently until they finish what they want to tell.
  • Evaluate your patients’ former spare time activities and define which activities can be carried on by talking to them and allow them to get involved with such activities.
  • Make sure whether they have hearing or sight problems. If there are such problems, provide your patients to use glasses or hearing aids by considering your physician’s advice.
  • Talk to your patients with an understandable tone of voice by speaking the words one by one.
  • Lessen the environmental stimulants during the conversation.
  • Communicate by means of writing if necessary.
  • Plan activities with your patients such as short walks or short car rides.
  • Show your patients that you listen to them and try to understand what they tell.
  • Even if your patients are having difficulties, encourage them to keep on expressing their thoughts and give them time.
  • Try not to interrupt your patients while they are talking.
  • Use positive and friendly mimics while you are talking to them.
  • Ask one question at a time and give them sufficient time to answer your questions.

 

  1. Depression.

What can be done regarding this problem?

  • Allow your patients to express their emotions.
  • Spare time to your patients when they wish to talk to you, listen to them patiently until they finish what they want to tell you
  • If it is hard to understand their speeches, find a way to communicate in the fastest and most reliable manner. (For example, using voice amplifiers, writing devices, computers, etc.)
  • Provide them to focus on their abilities rather than inabilities.

Suggestions for assisting your patients in terms of complying with inabilities:

  • Maintain an effective communication method.
  • Provide them to focus on their abilities rather than inabilities.
  • Provide them to accept their limitedness and to set realistic and admissible targets.
  • Assist them to have the control of making their decisions about their lives and caring.
  • Encourage them to maintain their regular relationships with other people regardless of their problems with movements.
  • Plan joyful activities.
  • Assist them to maintain positive body consciousness. Being dressed every day and looking as good as possible may help people to overcome a negative body consciousness.
  • Allow other people to help your patients.
  • Encourage them to maintain religious practices if required. Believing in God, reading religious books and praying may enable your patients to rest easy against distress and nuisance and give hope for the future.
  • Provide your patients to focus on activities they may do every day and cannot wait to do. This kind of a motive can keep their minds busy.
  • Provide them to handle the control of their lives and to make the important decisions themselves.
  • Seek for professional assistance in order to overcome the symptoms of depression, if required.

 

  1. Fatigue

What can be done regarding this problem?

  • Check whether your patients have signs of fatigue.
  • Keep in mind that you can raise the quality of your patient’s life by reducing fatigue.
  • Encourage your patients to participate in the chores and self-care activities.
  • Allow them to choose the facilitating methods. Assist them to use auxiliary devices when required.
  • Help them to use a wheelchair if they have difficulties in walking.
  • Optimize the home environment for the performance of their daily activities.
  • Assist them to use their energies efficiently, to move mildly and easily. Emphasize the fact that it is important to take frequent breaks and to breathe before starting again.
  • Assist them to perform the activities by themselves and emphasize that they need to do the heavier tasks in the morning hours during which their energy level is high and encourage your patients.
  • Maintain the required diet by consulting with a specialist in order to provide adequate nutrition of your patients. Lack of nutrition will cause loss of muscle and weakness.
  • Provide your patients who have swallowing problems to be fed soft foods.
  • Provide them to drink adequate amount of water.
  • Since extreme heat and cold will increase the level of fatigue, tell them to avoid those factors.
  • Monitor the respiration of your patients and tell them that they need to make use of respiratory equipment if required to provide adequate respiration and consult you’re your physician regarding this matter.

The objective here is switching the focusing on what has been lost in the past with the focusing on what we have to enjoy life in the future.

 

Asst. Prof. NAİLE ALANKAYA

İzmir University, Nursing Department of Health College

UZMANINA SOR
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