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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 August 12, 2019

13 Things Mentally Strong People Don’t Do

13 Things Mentally Strong People Don’t Do

Mentally strong people have healthy habits. They manage their emotions, thoughts, and behaviors in ways that set them up for success in life.

Take a look at these 13 things that mentally strong people don’t do so that you too can become mentally stronger.

1. They Don’t Waste Time Feeling Sorry for Themselves

Mentally strong people don’t sit around feeling sorry about their circumstances or how others have treated them. Instead, they take responsibility for their role in life and understand that life isn’t always easy or fair.

2. They Don’t Give Away Their Power

They don’t allow others to control them, and they don’t give someone else power over them. They don’t say things like, “My boss makes me feel bad,” because they understand that they are in control over their own emotions and they have a choice in how they respond.

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3. They Don’t Shy Away from Change

Mentally strong people don’t try to avoid change. Instead, they welcome positive change and are willing to be flexible. They understand that change is inevitable and believe in their abilities to adapt.

4. They Don’t Waste Energy on Things They Can’t Control

You won’t hear a mentally strong person complaining over lost luggage or traffic jams. Instead, they focus on what they can control in their lives. They recognize that sometimes, the only thing they can control is their attitude.

5. They Don’t Worry About Pleasing Everyone

Mentally strong people recognize that they don’t need to please everyone all the time. They’re not afraid to say no or speak up when necessary. They strive to be kind and fair, but can handle other people being upset if they didn’t make them happy.

6. They Don’t Fear Taking Calculated Risks

They don’t take reckless or foolish risks, but don’t mind taking calculated risks. Mentally strong people spend time weighing the risks and benefits before making a big decision, and they’re fully informed of the potential downsides before they take action.

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7. They Don’t Dwell on the Past

Mentally strong people don’t waste time dwelling on the past and wishing things could be different. They acknowledge their past and can say what they’ve learned from it.

However, they don’t constantly relive bad experiences or fantasize about the glory days. Instead, they live for the present and plan for the future.

8. They Don’t Make the Same Mistakes Over and Over

Mentally strong people accept responsibility for their behavior and learn from their past mistakes. As a result, they don’t keep repeating those mistakes over and over. Instead, they move on and make better decisions in the future.

9. They Don’t Resent Other People’s Success

Mentally strong people can appreciate and celebrate other people’s success in life. They don’t grow jealous or feel cheated when others surpass them. Instead, they recognize that success comes with hard work, and they are willing to work hard for their own chance at success.

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10. They Don’t Give Up After the First Failure

Mentally strong people don’t view failure as a reason to give up. Instead, they use failure as an opportunity to grow and improve. They are willing to keep trying until they get it right.

11. They Don’t Fear Alone Time

Mentally strong people can tolerate being alone and they don’t fear silence. They aren’t afraid to be alone with their thoughts and they can use downtime to be productive.

They enjoy their own company and aren’t dependent on others for companionship and entertainment all the time but instead can be happy alone.

12. They Don’t Feel the World Owes Them Anything

Mentally strong people don’t feel entitled to things in life. They weren’t born with a mentality that others would take care of them or that the world must give them something. Instead, they look for opportunities based on their own merits.

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13. They Don’t Expect Immediate Results

Whether they are working on improving their health or getting a new business off the ground, mentally strong people don’t expect immediate results. Instead, they apply their skills and time to the best of their ability and understand that real change takes time.

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Featured photo credit: Candice Picard via unsplash.com

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