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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 11, 2019

How to Improve Communication Skills for Workplace Success

How to Improve Communication Skills for Workplace Success

Possessing strong communication skills will help you in every phase of your life. This is especially true in the workplace.

I have personally worked with several leaders who were masters of communication. A few were wonderful speakers who could tell a great story and get everyone in the room engaged. Those of us in attendance would walk away feeling inspired and eager to help with what came next. Others were very skilled at sharing a clear direction and job expectations.

I knew exactly what was expected of me and how to achieve my goals. This was the foundation of an energized and vibrant role I was in. What I have found is strong communication skills are incredibly helpful and sometimes critical in how well we perform at work.

Here we will take a look at how to improve communication skills for workplace success.

How Communication Skills Help Your Success

Strong communication skills pave the way for success in many ways. Let’s look at a few of the big ones.

Create a Positive Experience

Here are two examples of how well developed communication skills helps create a positive experience:

When I first moved to the city I now live in, I began a job search. Prior to my first live interview, I was told an address to go to. Upon arriving at the address provided, I drove around and around attempting to find the location. After 15 minutes of circling and looking for the address, I finally grabbed a parking spot and set out on foot.

What I discovered was the address was actually down an alley and only had the number over the door. No sign for the actual company. The person that gave me those very unclear directions provided a bad experience for me.

Had they communicated the directions to get there in a clear manner, my experience would have been much better. Instead the entire experience started off poorly and colored the entire meeting.

As a recruiter, I frequently provide potential candidates with information about a job I’m speaking to them about. In order to do this, I also provide a picture of the overall company, the group they might be joining, and how their role fits in and impacts the entire company.

Time and time again I have been told by candidates that I have provided the clearest picture of a company and role they have ever heard. They have a positive experience when I clearly communicate to them. Even when the position does not work out for them, often times they will want to stay in touch with me due to the open communication and beneficial experience they had during the interviewing process.

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Strong communication skills will provide a positive experience in virtually any interaction you have with someone.

Help Leadership Skills

It’s certainly a skill all its own to be able to lead others.

Being a mentor and guiding others towards success is a major hallmark of great leaders. Another characteristic of effective leaders is the ability to communicate clearly.

As I referenced above, having a leader who can plainly articulate the company’s mission and direction goes a really long way towards being the Captain of the boat that others want to follow. It’s like saying “here’s our destination and this is how we are going to get there” in a way that everyone can get on board with.

Another critical component of everyone helping to sail the boat in the right direction is knowing what your portion is all about. How are you helping the boat move towards its destination in the manner than is consistent with the leaders’ vision?

If you have a boss or a manager that can show you what it takes for not only you to be successful, but also how your performance helps the company’s success then you’ve got a winner. A boss with superior communication skills.

Build Better Teams

Most of us work in teams of some sort or another. During the course of my career, I have led teams up to 80 and also been an individual contributor.

In my individual contributor roles, I have been part of a larger team. Even if you are in business for yourself, you have to interact with others in one manner or another.

If you have strong communication skills, it helps to build better teams. This is true whether you are in an IT department with 100 other fellow programmers or if you own your own business and have customers or vendors you communicate with.

When you showcase your robust ability to communicate well with others while interacting with them, you are building a better team.

Now let’s jump in to how to improve communication skills to help you pave the way for your workplace success.

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How to Improve Communication Skills for Workplace Success

There are many tips, tricks, and techniques to improve communication skills. I don’t want to overwhelm you with too much information, so let’s focus on the things that will provide the biggest return on your time investment.

Most of these tips will be fairly easy to become aware of but will take time and effort to implement. So let’s go!

1. Listen

Ever heard the saying you have two ears and one mouth for a reason? If you haven’t, then here’s the reason:

Being a good listener is half the equation to being a good communicator.

People who have the ability to really listen to someone can then actually answer questions in a meaningful way. If you don’t make the effort to actively listen, then you are really doing yourself and the other person a disservice in the communication department.

Know that person who is chomping at the bit to open his or her mouth the second you stop talking? Don’t be that person. They haven’t listened to at least 1/2 of what you’ve said. Therefore the words that spill out of their mouth are going to be about 1/2 relevant to what you just said.

Listen to someone completely and be comfortable with short periods of silence. Work on your listening skills first and foremost.

2. Know Your Audience

Knowing your audience is another critical component to having strong communication skills. The way you interact with your manager should be different than how you interact with your kids. This isn’t to say you need to be a different person with everyone you interact with. Far from it.

Here is a good way to think about it:

Imagine using your the same choice of words and body language you use with your spouse while interacting with your boss. That puts things in a graphic light!

You want to ensure you are using the type of communication most relevant to your audience.

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3. Minimize

I have lunch with a business associate about 3 times a year. We’ve been talking for several years now about putting a business deal together.

He is one of those people that simply overwhelms others with a lot of words. Sometimes when I ask him a question, I get buried beneath such an avalanche of words that I’m more confused than when I asked the question. Needless to say this is most likely a large portion of why we never put the deal together.

Don’t be like my lunch business associate. The goal of talking to or communicating with someone is to share actual information. The goal is not to confuse someone, it’s to provide clarity in many cases.

State what needs to be stated as succinctly as possible. That doesn’t mean you can’t have some pleasant conversation about the weather too.

The point is to not create such an onslaught of words and information that the other person walks away more confused than when they started.

4. Over Communicate

So this probably sounds completely counter intuitive to what I just wrote about minimizing your communication. It seems like it might be but it’s not.

What I mean by over communicating is ensuring that the other person understands the important parts of what you are sharing with them. This can be done simply yet effectively. Here’s a good example:

Most companies have open enrollment for benefits for the employees in the fall. The company I work for has open enrollment from November 1 to 15. The benefits department will send out a communication to all employees around October 1st, letting them know open enrollment is right around the corner and any major changes that year. There’s also a phone number and email for people to contact them with any questions.

Two weeks later, we all get a follow up email with basically the same information. We get a 3rd communication the week before open enrollment and another one 1 day before it starts.

Finally we get 2 emails during enrollment reminding us when open enrollment ends.

There’s minimal information, it’s more of a reminder. This is effective over communication.

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5. Body Language

The final critical component to how to improve communication skills for workplace success is body language. This is something most of us have heard about before but, a reminder is probably a good idea.

When I am in a meeting with someone I am comfortable with, I tend to kind of slouch down in my chair and cross my arms. When I catch myself doing this, I sit up straight and uncross my arms. I remember that crossing arms can many times be interpreted as a sign of disagreement or conflict.

In general, the best rule of thumb is to work towards having open body language whenever possible at work. This means relaxing your posture, not crossing your arms, and looking people in the eye when speaking with them.

When you are speaking in front of others, stand up straight and speak in a clear voice. This will convey confidence in your words.

Conclusion

Possessing strong communication skills will help you in many facets of your life and most certainly in the workplace.

Good communication helps create better teams, positive experiences with those we interact with, and are critical for leadership.

There are numerous tactics and techniques to be used to improve communication skills. Here we’ve reviewed how to improve communication skills for workplace success.

Now go communicate your way to success.

More Resources About Effective Communication

Featured photo credit: HIVAN ARVIZU via unsplash.com

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