What do you say to someone with ALS?
A friend or family member is diagnosed with ALS. That news hits like a bombshell, knocking the ground out from under you. What do you say to someone who has received an ALS diagnosis? What do you do? There is no set playbook for how to deal with people who have received a terminal diagnosis. And every relationship is different. Below, we offer some human advice to help point you in the right direction.
Be honest: let them know that you don't know what to say.
Because it is hard to know the right thing to say or do, an awkward silence often follows. Fortunately, it doesn’t have to be that way. The best approach to breaking the ice is simply to be honest. Just say, "I’m not really sure what to say," or "I find it difficult to find the right words." You will see a sense of connection and understanding emerge. The conversation will flow naturally, and any tension will disappear. After all, you are only human.
How can I help?
Let me help you cook dinner. Let me help you walk the dog. Let me help you change the bed linen. I have time on Mondays and Tuesdays to pick your children up from school. Would you like to invite friends over for lunch sometime? Let me handle everything.
Bied hulp waar je kunt. Probeer zo specifiek mogelijk te zijn in hoe je iemand kunt helpen. Zo hoeven ze daarover niet zelf na te denken, en alleen met ‘ja’ te antwoorden
Say: "I am here for you"
Living with ALS means living in a state of absolute uncertainty—and absolute certainty. You can find out all about what lies ahead on various websites, yet you do not know when—or how—your condition will deteriorate. You do not know how much longer you will remain mobile, or when a stairlift and an electric wheelchair will inevitably become necessary. It is all terrifying. You know for certain that you will die, but you do not know when. In such times, nothing is more supportive than having loved ones you can turn to. Whether to shed tears, vent your frustrations, share a hug, or simply be together. A tip for you: stay by the patient's side as they navigate their medical journey. Say, "I am here for you." Mean it, and offer your support through thick and thin.
The book Vertroostingen (Consolations) by Belgian psychotherapist Dirk de Wachter poignantly describes the value of "the small good," as he calls it.
Which day would be convenient for a visit?
Humans are social beings. We thrive on personal interactions, especially with those with whom we feel at ease. During difficult and emotional times, offering support and visiting regularly, even if only briefly, is incredibly valuable. However, always try to be mindful of the patient’s energy levels and any scheduled visits from healthcare professionals providing home care. In short: coordinate closely with the family and visit at suitable times.
Do you really not know what to say to someone with ALS? Send a card!
Do you still find it difficult to strike up a conversation with someone diagnosed with ALS, even after reading the tips above? Don’t feel bad about that; it’s perfectly understandable. An easy, low-pressure way to show your support is by sending a card. We know from experience just how incredibly heartwarming it feels when a card drops through the letterbox. Knowing that someone is thinking of you is truly touching. It is a small gesture, yet it has an immense impact. And it’s so simple to do! Via our website easily send a card to someone who could use one.
How Stamps can be of help
en Als je ziek bent of in rouw, komt er veel op je af. Met Stamps hoef je niet steeds opnieuw hetzelfde verhaal te delen. Onze gebruiksvriendelijke en kosteloze app maakt het eenvoudig om je gezondheid updates te delen met familie en vrienden.
Get started today with the Stamps app. Ga niet alleen door een moeilijke tijd. Met Stamps blijf je verbonden met vrienden en familie, en kun je vverzoekjes plannen. Wie brengt me naar het ziekenhuis? Wie wil koken? etc.
