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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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Published on May 4, 2021

How To Spot Fake People (And Ways To Deal With Them)

How To Spot Fake People (And Ways To Deal With Them)

They say we are the average of the five persons we spend the most time with. For a minute, consider the people around you. Are they truly who your “tribe” should be or who you aspire to become in the future? Are they really genuine people who want to see you succeed? Or are they fake people who don’t really want to see you happy?

In this article, I’ll review why it is important to surround yourself with genuine individuals—the ones who care, bring something to our table, and first and foremost, who leave all fakeness behind.

How to Spot Fake People?

When you’ve been working in the helping professions for a while, spotting fake people gets a bit easier. There are some very clear signs that the person you are looking at is hiding something, acting somehow, or simply wanting to get somewhere. Most often, there is a secondary gain—perhaps attention, sympathy, or even a promotion.

Whatever it is, you’re better off working their true agenda and staying the hell away. Here are some things you should look out for to help spot fake people.

1. Full of Themselves

Fake people like to show off. They love looking at themselves in the mirror. They collect photos and videos of every single achievement they had and every part of their body and claim to be the “best at what they do.”

Most of these people are actually not that good in real life. But they act like they are and ensure that they appear better than the next person. The issue for you is that you may find yourself always feeling “beneath” them and irritated at their constant need to be in the spotlight.

2. Murky in Expressing Their Emotions

Have you ever tried having a deep and meaningful conversation with a fake person? It’s almost impossible. It’s because they have limited emotional intelligence and don’t know how they truly feel deep down—and partly because they don’t want to have their true emotions exposed, no matter how normal these might be.

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It’s much harder to say “I’m the best at what I do” while simultaneously sharing “average” emotions with “equal” people.

3. Zero Self-Reflection

To grow, we must accept feedback from others. We must be open to our strengths and to our weaknesses. We must accept that we all come in different shapes and can always improve.

Self-reflection requires us to think, forgive, admit fault, and learn from our mistakes. But to do that, we have to be able to adopt a level of genuineness and depth that fake people don’t routinely have. A fake person generally never apologizes, but when they do, it is often followed with a “but” in the next breath.

4. Unrealistic Perceptions

Fake people most often have an unrealistic perception of the world—things that they want to portray to others (pseudo achievements, materialistic gains, or a made-up sense of happiness) or simply how they genuinely regard life outside themselves.

A lot of fake people hide pain, shame, and other underlying reasons in their behavior. This could explain why they can’t be authentic and/or have difficulties seeing their environment for the way it objectively is (both good and bad).

5. Love Attention

As I mentioned earlier, the biggest sign that something isn’t quite right with someone’s behavior can be established by how much they love attention. Are you being interrupted every time you speak by someone who wants to make sure that the spotlight gets reverted back to them? Is the focus always on them, no matter the topic? If yes, you’re probably dealing with a fake person.

6. People Pleaser

Appreciation feels nice but having everyone like you is even better. While it is completely unrealistic for most people to please everyone all the time, fake people seem to always say yes in pursuit of constant approval.

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Now, this is a problem for two reasons. Firstly, these people are simply saying yes to things for their own satisfaction. Secondly, they often end up changing their minds or retracting their offer for one reason or another (“I would have loved to, but my grandmother suddenly fell ill.”), leaving you in the lurch for the 100th time this year.

7. Sarcasm and Cynicism

Behind the chronic pasted smile, fake people are well known for brewing resentment, jealousy, or anger. This is because, behind the postcard life, they are often unhappy. Sarcasm and cynicism are well known to act as a defense mechanism, sometimes even a diversion—anything so they can remain feeling on top of the world, whether it is through boosting themselves or bringing people down.

8. Crappy friend

Fake people are bad friends. They don’t listen to you, your feelings, and whatever news you might have to share. In fact, you might find yourself migrating away from them when you have exciting or bad news to share, knowing that it will always end up one way—their way. In addition, you might find that they’re not available when you truly need them or worse, cancel plans at the last minute.

It’s not unusual to hear that a fake person talks constantly behind people’s backs. Let’s be honest, if they do it to others, they’re doing it to you too. If your “friend” makes you feel bad constantly, trust me, they’re not achieving their purpose, and they’re simply not a good person to have around.

The sooner you learn to spot these fake people, the sooner you can meet meaningful individuals again.

How to Cope With Fake People Moving Forward?

It is important to remind yourself that you deserve more than what you’re getting. You are worthy, valuable, precious, and just as important as the next person.

There are many ways to manage fake people. Here are some tips on how to deal with them.

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1. Boundaries

Keep your boundaries very clear. As explained in the book Unlock Your Resilience, boundaries are what keep you sane when the world tries to suffocate you. When fake people become emotional vampires, make sure to keep your distances, limit contact, and simply replace them with more valuable interactions.

2. Don’t Take Their Behavior Personally

Sadly, they most likely have behaved this way before they knew you and will continue much longer after you have moved on. It isn’t about you. It is about their inner need to meet a void that you are not responsible for. And in all honesty, unless you are a trained professional, you are unlikely to improve it anyway.

3. Be Upfront and Honest About How You Feel

If your “friend” has been hurtful or engaged in behaviors you struggle with, let them know—nicely, firmly, however you want, but let them know that they are affecting you. If it works, great. If it doesn’t, you’ll feel better and when you’re ready to move on, you’ll know you tried to reach out. Your conscience is clear.

4. Ask for Advice

If you’re unsure about what you’re seeing or feeling, ask for advice. Perhaps a relative, a good friend, or a colleague might have some input as to whether you are overreacting or seeing some genuine concerns.

Now, don’t confuse asking for advice with gossiping behind the fake person’s back because, in the end, you don’t want to stoop down to their level. However, a little reminder as to how to stay on your own wellness track can never hurt.

5. Dig Deeper

Now, this one, I offer with caution. If you are emotionally strong, up to it, guaranteed you won’t get sucked into it, and have the skills to manage, perhaps you could dig into the reasons a fake person is acting the way they do.

Have they suffered recent trauma? Have they been rejected all their lives? Is their self-esteem so low that they must resort to making themselves feel good in any way they can? Sometimes, having an understanding of a person’s behavior can help in processing it.

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6. Practice Self-Care!

Clearly, putting some distance between the fake person and yourself is probably the way to go. However, sometimes, it takes time to get there. In the meantime, make sure to practice self-care, be gentle with yourself, and compensate with lots of positives!

Self-care can be as simple as taking a hot shower after talking to them or declining an invitation when you’re not feeling up to the challenge.

Spotting fake people isn’t too hard. They generally glow with wanna-be vibes. However, most often, there are reasons as to why they are like this. Calling their behavior might be the first step. Providing them with support might be the second. But if these don’t work, it’s time to stay away and surround yourself with the positivity that you deserve.

Final Thoughts

Remember that life is a rollercoaster. It has good moments, tough moments, and moments you wouldn’t change for the world. So, look around and make sure that you take the time to choose the right people to share it all with.

We are the average of the five people we spend the most time with, so take a good look around and choose wisely!

More Tips on Dealing With Fake People

Featured photo credit: Priscilla Du Preez via unsplash.com

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