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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 December 10, 2019

5 Smart Reasons to Start Journal Writing Today

5 Smart Reasons to Start Journal Writing Today

Here’s the truth: your effectiveness at life is not what it could be. You’re missing out.

Each day passes by and you have nothing to prove that it even happened. Did you achieve something? Go on a date? Have an emotional breakthrough? Who knows?

But what you do know is that you don’t want to make the same mistakes that you’ve made in the past.

Our lives are full of hidden gems of knowledge and insight, and the most recent events in our lives contain the most useful gems of all. Do you know why? It’s simple, those hidden lessons are the most up to date, meaning they have the largest impact on what we’re doing right now.

But the question is, how do you get those lessons? There’s a simple way to do it, and it doesn’t involve time machines:

Journal writing.

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Improved mental clarity, the ability to see our lives in the big picture, as well as serving as a piece of evidence cataloguing every success we’ve ever had; we are provided all of the above and more by doing some journal writing.

Journal writing is a useful and flexible tool to help shed light on achieving your goals.

Here’s 5 smart reasons why you should do journal writing:

1. Journals Help You Have a Better Connection with Your Values, Emotions, and Goals

By journaling about what you believe in, why you believe it, how you feel, and what your goals are, you understand your relationships with these things better. This is because you must sort through the mental clutter and provide details on why you do what you do and feel what you feel.

Consider this:

Perhaps you’ve spent the last year or so working at a job you don’t like. It would be easy to just suck it up and keep working with your head down, going on as if it’s supposed to be normal to not like your job. Nobody else is complaining, so why should you, right?

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But a little journal writing will set things straight for you. You don’t like your job. You feel like it’s robbing you of happiness and satisfaction, and you don’t see yourself better there in the future.

The other workers? Maybe they don’t know, maybe they don’t care. But you do, you know and care enough to do something about it. And you’re capable of fixing this problem because your journal writing allows you to finally be honest with yourself about it.

2. Journals Improve Mental Clarity and Help Improve Your Focus

If there’s one thing journal writing is good for, it’s clearing the mental clutter.

How does it work? Simply, whenever you have a problem and write about it in a journal, you transfer the problem from your head to the paper. This empties the mind, allowing allocation of precious resources to problem-solving rather than problem-storing.

Let’s say you’ve been juggling several tasks at work. You’ve got data entry, testing, e-mails, problems with the boss, and so on—enough to overwhelm you—but as you start journal writing, things become clearer and easier to understand: Data entry can actually wait till Thursday; Bill kindly offered earlier to do my testing; For e-mails, I can check them now; the boss is just upset because Becky called in sick, etc.

You become better able to focus and reason your tasks out, and this is an indispensable and useful skill to have.

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3. Journals Improve Insight and Understanding

As a positive consequence of improving your mental clarity, you become more open to insights you may have missed before. As you write your notes out, you’re essentially having a dialogue with yourself. This draws out insights that you would have missed otherwise; it’s almost as if two people are working together to better understand each other. This kind of insight is only available to the person who has taken the time to connect with and understand themselves in the form of writing.

Once you’ve gotten a few entries written down, new insights can be gleaned from reading over them. What themes do you see in your life? Do you keep switching goals halfway through? Are you constantly dating the same type of people who aren’t good for you? Have you slowly but surely pushed people out of your life for fear of being hurt?

All of these questions can be answered by simply self-reflecting, but you can only discover the answers if you’ve captured them in writing. These questions are going to be tough to answer without a journal of your actions and experiences.

4. Journals Track Your Overall Development

Life happens, and it can happen fast. Sometimes we don’t take the time to stop and look around at what’s happening to us at each moment. We don’t get to see the step-by-step progress that we’re making in our own lives. So what happens? One day it’s the future, and you have no idea how you’ve gotten there.

Journal writing allows you to see how you’ve changed over time, so you can see where you did things right, and you can see where you took a misstep and fell.

The great thing about journals is that you’ll know what that misstep was, and you can make sure it doesn’t happen again—all because you made sure to log it, allowing yourself to learn from your mistakes.

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5. Journals Facilitate Personal Growth

The best thing about journal writing is that no matter what you end up writing about, it’s hard to not grow from it. You can’t just look at a past entry in which you acted shamefully and say “that was dumb, anyway!” No, we say “I will never make a dumb choice like that again!”

It’s impossible not to grow when it comes to journal writing. That’s what makes journal writing such a powerful tool, whether it’s about achieving goals, becoming a better person, or just general personal-development. No matter what you use it for, you’ll eventually see yourself growing as a person.

Kickstart Journaling

How can journaling best be of use to you? To vent your emotions? To help achieve your goals? To help clear your mind? What do you think makes journaling such a useful life skill?

Know the answer? Then it’s about time you reap the benefits of journal writing and start putting pen to paper.

Here’s what you can do to start journaling:

Featured photo credit: Jealous Weekends via unsplash.com

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