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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 October 22, 2019

How to Get “I Can’t Do It” Out of Your Vocabulary

How to Get “I Can’t Do It” Out of Your Vocabulary

When someone says, “I can’t do it” . . . I say to myself, “What do you mean you can’t do it?” Maybe you don’t want to do it, but saying you “can’t” do it is a completely different story.

With the right mindset, positive attitude, and a clear vision of what you want to accomplish, the only thing that is holding you back is yourself.

Can’t is a terrible word and it has to be taken out of your vocabulary.

By saying you can’t do something, you’re already doubting yourself, submitting to defeat, and you’re making that barrier around your life tighter.

So today, right now, we are going to remove this word for good.

From now on there is nothing we can’t do.

“Attitude is Tattoo”

Your attitude is everything; it’s your reason, your why and how, your facial expression, emotions, body language, and potentially the end result. How you approach an opportunity, and the result of it, is solely based on you — not your boss or your co-worker or friend.

If you enter a business meeting with a sour attitude, that negative energy can spread like wildfire. People can also feel it — maybe even taste it. This is not an impression you want to leave.

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Now imagine you enter a business meeting with a positive attitude, that whatever happens in here is going to be your result, in your control, not someone else’s. Of course, we can’t always win, but even if the outcome is negative, your attitude and perception can turn it into a positive. The question is: can you do it?

Of course you can, because there is nothing in this world you can’t do.

It’s much better to be known for your positive attitude — your poise, your energy, the reason why things go so well because you are able to maintain such character. A negative attitude is easy. It’s easy to complain, it’s easy to be mad, and it’s even easier to do nothing to change it.

When I say your “attitude is tattoo”, it sounds permanent. Tattoos can be removed, but that’s not the point. Your attitude is like a tattoo because you wear it. People can see it and sometimes, they will judge you on it. If you maintain a negative attitude, then it is permanent until you change it.

Change your attitude and I guarantee the results change as well.

Believe You Can Do It

Do you know why most people say “can’t” and doubt themselves before trying anything?

It’s our lack of self-confidence and fear on many different levels. The one thing we have to purge from ourselves is fear — fear of bad results, fear of change, fear of denial, fear of loss, the fear that makes us worry and lose sleep. Worrying is the same as going outside with an umbrella, waiting for rain to hit it. Stop worrying and move on.

Confidence is fragile: It builds up slowly, but can shatter like glass. Project your confidence and energy into believing in yourself. This is a very important and groundbreaking step — one that is usually the hardest to take. Start telling yourself you can do something, anything, and you will do it the best to your ability. Remove doubt, remove fear, and stick with positive energy.

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Embrace Failure

Do not fear failure. Do not run away from it. Face it, learn from it, grow, and take action. Just remember: You will never know success if you have never failed.

Your confidence will bolster after embracing these facts. You will be immune to demoralizing results, and instead you will find ways to fix it, improve upon it, and make it better than before. You will learn to never say “can’t,” and will realize how many more opportunities you can create by removing that one word.

Don’t let one simple and ugly word plague your confidence. You’re better and stronger than that.

Start Making the Change

But to actually start the process of change is very challenging.

Why is that?

Fear? Time? Don’t know how — or where — to start?

It’s hard because what we’re doing is unlearning what we know. We are used to doing things a certain way, and chances are we’ve been doing them for years.

So here are some ways that I avoid using the word “can’t”, and actually take the steps to put forth the change that I wish to see. I hope you can incorporate these methods into your life.

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Write down What You Want to Change

Write it on post-its, notecards, whatever makes you comfortable — something you will always see. I usually write mine on post-its and put them all over the wall behind my monitor so I always see them.

Tell a Friend and Talk About It

Discussing your goals, what you want to change, is very effective when you say it out loud and tell another person other than yourself. It’s almost like saying, hey, I bet I can do it — watch me.

When you fulfill that goal and tell your friend, it feels rewarding and will motivate you to do it again in a different aspect. Who knows? Maybe your friend adopts the same mindset as you.

Stop Yourself from Saying the Forbidden Word

Sometimes,I can’t control myself in public when I’m with friends, so I have to be careful with the words I use so I don’t embarrass or insult anyone.

Treat the word “can’t” as the worst word you can possibly use. Stop yourself from saying it, mid-sentence if you must, and turn your whole perspective around — you can do it, you will do it, and nothing is impossible!

Repetition, Repetition, Repetition

You think this change will be overnight? No way. This is a practice. Something you’re going to be doing for the rest of your life from now until forever.

As I said earlier, you are unlearning what you know. You know how easy it is to say you can’t do something, so by unlearning this easy practice, you’re self-disciplining yourself to live without boundaries.

Practice this everyday, a little at a time, and before you know it, the word can’t will not be part of your language.

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Do Anything That Can Relieve Your Uncertainty

When I catch myself saying I can’t do something or I don’t know something, looking up information on that action or subject, doing research, educating yourself, relieves that uncertainty.

Sometimes, we think we can’t do something because the whole idea of it seems too large. We skip the small steps in our head and only focus on the end.

Before you say you can’t do something, rewind and slow down a little bit. Focus on what the first step is, then the next. Take it a step at a time, and before you know it you will have done something you previously thought you couldn’t do.

Final Thoughts

You know what you must do. The first step is right now. Once you begin this habit, and really start noticing some change, you’ll realize the door to opportunity is everywhere.

The funny thing is: Those doors have always been there. The evil word that we no longer use put a veil over our eyes because that’s how powerful that word is.

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Featured photo credit: Cata via unsplash.com

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