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10 Things To Remember If Your Loved One Has ALS

10 Things To Remember If Your Loved One Has ALS

The ALS ice bucket challenge has done a lot to raise awareness and funds for this disease.

If a family member or a loved one has ALS (Amyotrophic lateral sclerosis), you are probably well aware of the symptoms and treatment available. For those readers who are not so sure, the disease is a neurodegenerative one in which the motor neurons controlling the muscles no longer work or are severely impaired. The result is that the muscles start to waste away and this leads to progressive paralysis. The ALS Association is committing $99 million to research which you can check out on their site.

The only FDA approved drug which can help to slow the progression of symptoms is Rilutek (riluzole). Research is ongoing but there is a long way to go.

But this post is really about how you can support a loved one who has ALS. It will try and help you to understand what a person who has ALS is going through and the best possible ways you can help and love them even more.

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1. Get help and support

The first thing is to make sure that you are connected with an ALS charity or foundation in your country or area. They will give you lots of information and provide you with the support you will need. You can find your local chapter if you are living in the USA here .

2. Decide what type of care you can be committed to

Much depends on the stage of the disease. In the early days you may be able to take care of your loved one at home. Many ALS sufferers are able to go on working for a time. There will be things to consider such as getting the home help you need and also the financial implications. It will become a 24/7 job with the need for a respirator and other equipment. This is why you may have to consider a critical care center because you may be unable to cope.

Most caregivers will go through various stages of anger, fear and isolation, not to mention the financial worries. Exhaustion sets in and it is important to have shifts so that you can rest and relax at times. But life goes on and it can be a great opportunity to strengthen ties with loved ones and still find joy in spite of the monstrous difficulties. The main aim will be to search for a quality of life for the patient which is acceptable.

3. Acceptance and reaction to ALS

Both the patient and the caregivers have to come to terms with an enormous burden and one which will have life-changing consequences. Everybody reacts differently and social, cultural and religious upbringing will all come into play. There may be anger and denial or acceptance and determination to make the best of it and several other mixed reactions in between. Time may also help or hinder the process of acceptance. Each stage of the disease involves decisions about care and mobility. Patients may hate having to use a wheelchair. They may agree to use it on certain occasions or for some outings until they fully accept it as the only means of mobility they may have.

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4. Learn and empathize

Learning about the disease is a great way to understand what is going on in the sufferer’s mind. If you are not empathetic enough to realize what they are going through, try the following:

  • Imagine your mouth is full of marshmallows – try speaking
  • The fork you need to lift the food to your mouth weighs ten pounds
  • Try sitting in a chair and do absolutely nothing for ten minutes. You cannot move any limb in your body but you are able to move your eyes and see. Look around you for all this time and see how you get on.
  • Try lying in bed without moving for twenty minutes. No, you cannot turn over or move your legs or arms or even scratch your nose.
  • Walk up the stairs with heavy weights attached to your ankles.

5. Understand their needs and behavior

The ALS sufferer has to come to terms with a very uncertain future. Nobody knows how fast the disease will develop. They will worry about being a burden on their families while seeking to be independent and maintain a decent quality of life.

6. Watch out for abuse

If you are not the main caregiver, you may have to look out for signs of abuse. It sometimes happens that caregivers react to the stress by being sarcastic, complaining and swearing. It can also happen that they resort to physical abuse such as attacking the sufferer and deliberately roughing them up. There have been cases where the caregivers refuse to give medicines and also give them tranquilizers so that they are not overly disturbed by their requests.

The ALS sufferers sometimes become abusive towards their own loved ones and caregivers. This is one way they have of directing their anger, grief and isolation to whoever happens to be around. There may be cases of refusing to collaborate, complaining all the time and never thanking the loved one for their support. This can be very painful for those trying to give love, help, and tender care.

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7. Keep the relationship the same as before

Don’t let ALS change your relationship status with your loved one. Both parties should be aware that they are not going to use the disease to gain advantage or power over the other partner. Depending on a loved one should never be an excuse for bad behavior or wallowing in self pity. The care questions and decisions should never be mixed with ones concerning your relationship.

8. Don’t make decisions on your own

If you have to make decisions about any changes for mobility, diet and hygiene, make sure that the patient is fully consulted (as far as the disease will allow). Joint decisions should be taken on the following:

  • Wheelchairs
  • Walking aids
  • Diet
  • PEG tube
  • Adapted car/van

9. Help the patient be active

Even if it is just making sure that bills are paid online or making a shopping list, these can help the patient feel more useful and that she or he is helping in little ways. It also means that they feel less dependent and can still have a role to play.

Exercising together when and where possible is a great way to bond. Usually walking, swimming are recommended as they are low impact. The patient will also be given physical therapy as the disease progresses which will help with cramps and numbness. Speech therapy often helps when speaking becomes more difficult.

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10. Encourage patients to live for the moment

Depending on how serious the illness may be, there will be many opportunities for the person with ALS and their caregivers to savor life and nature. There may be more chances to use:

  • Prayer
  • Meditation
  • Mindfulness
  • Music
  • Reading (page turners, online books and audio books are all available)

As we have seen, there are many ways of supporting and caring for ALS patients. Empathy, bonding and support for caregivers and family members will be key factors in helping to maintain quality of life.

More by this author

Robert Locke

Author of Ziger the Tiger Stories, a health enthusiast specializing in relationships, life improvement and mental health.

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Last Updated on April 9, 2020

How to Think Positive Thoughts When Feeling Negative

How to Think Positive Thoughts When Feeling Negative

Positive thinking can lead to a lot of positive change in your life. Developing an optimistic outlook can be good for both your physical and mental health.

But sometimes, certain situations arise in life that makes it hard to keep a positive outlook. Take steps to make positive thinking become more like your second nature and you’ll reap the biggest benefits.

Here are 10 ways to make thinking positive thoughts easy:

1. Spend Time with Positive People

If you surround yourself with constant complainers, their negativity is likely to rub off on you.

Spend time with positive friends and family members to increase the likelihood that their positive thinking habits will become yours too. It’s hard to be negative when everyone around you is so positive.

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Learn How to Surround Yourself With Positive People.

2. Take Responsibility for Your Behavior

When you encounter problems and difficulties in life, don’t play the role of the victim. Acknowledge your role in the situation and take responsibility for your behavior.

Accepting responsibility can help you learn from mistakes and prevent you from blaming others unfairly.

3. Contribute to the Community

One of the best ways to feel good about what you have, is to focus on what you have to give.

Volunteer in some manner and give back to the community. Helping others can give you a new outlook on the world and can assist you with positive thinking.

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4. Read Positive and Inspirational Materials

Spend time each day reading something that encourages positive thinking. Read the Bible, spiritual material, or inspirational quotes to help you focus on what’s important to you in life. It can be a great way to start and end your day.

Some recommendations for you:

5. Recognize and Replace Negative Thoughts

You won’t be successful at positive thinking if you’re still plagued by frequent negative thoughts. Learn to recognize and replace thoughts that are overly negative. Often, thoughts that include words like “always” and “never” signal that they aren’t true.

If you find yourself thinking something such as, “I always mess everything up,” replace it with something more realistic such as, “Sometimes I make mistakes but I learn from them.”

There’s no need to make your thoughts unrealistically positive, but instead, make them more realistic.

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6. Establish and Work Toward Goals

It’s easier to be positive about problems and setbacks when you have goals that you’re working toward. Goals will give you motivation to overcome those obstacles when you encounter problems along the way. Without clear goals, it’s harder to make decisions and gauge your progress.

Learn to set SMART goals to help you achieve more.

7. Consider the Consequences of Negativity

Spend some time thinking about the consequences of negative thinking. Often, it can become a self-fulfilling prophecy.

For example, a person who thinks, “I probably won’t get this job interview,” may put less effort into the interview. As a result, he may decrease his chances of getting the job.

Create a list of all the ways negative thinking impacts your life. It likely influences your behavior, your relationships, and your feelings. Then, create a list of the ways in which positive thinking could be beneficial.

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8. Offer Compliments to Others

Look for reasons to compliment others. Be genuine in your praise and compliments, but offer it frequently. This will help you look for the good in other people.

9. Create a Daily Gratitude List

If you start keeping a daily gratitude list, you’ll start noticing exactly how much you have to be thankful for. This can help you focus on the positive in your life instead of thinking about all the bad things that have happened in the day.

Getting in the habit of showing an attitude of gratitude makes positive thinking more of a habit. Here’re 40 Simple Ways To Practice Gratitude.

10. Practice Self-Care

Take good care of yourself and you’ll be more equipped to think positively.

Get plenty of rest and exercise and practice managing your stress well. Taking care of your physical and mental health will provide you with more energy to focus on positive thinking.

Learn about these 30 Self-Care Habits for a Strong and Healthy Mind, Body and Spirit.

More Tips for Staying Positive

Featured photo credit: DESIGNECOLOGIST via unsplash.com

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