Support after laryngectomy
September 15, 2015 8:47 AM Subscribe
Our friend has just had a laryngectomy for cancer. We have read a self-help book for laryngectomees but there isn't a lot in there for how friends and family can help. If you have had experience with this, we would appreciate any tips and suggestions for how we can best support him. He is a very sociable person and the lack of communication until he learns to speak again is a particular concern.
Just want to quickly share the best free AAC app I found when looking for adult resources on Android. It's Speech Assistant AAC and there is an upgrade (for me, £3.44) to boost the number of categories and add a few more features. All the text is fully customisable, and it will also speak typed text. A cheap smartphone or tablet would run it, if he doesn't have an Android device already.
posted by lokta at 4:52 PM on September 15, 2015 [1 favorite]
posted by lokta at 4:52 PM on September 15, 2015 [1 favorite]
There are lots of tools and technology that he can utilize to improve his communication (e.g. AAC devices, proficiency with an electrolarynx, possibly a TEP down the road) but since your question specifically addresses what *you* can do, here are a few suggestions.
1. Be patient :-) Communicating as a Laryngectomee can be very frustrating. Unless he is very proficient and adept at using an electrolarynx or has a TEP, his communication is likely slower than it was before the surgery. Ask him how he wants to be supported (e.g. does he want help when he's having trouble or does he want his communication partner to just sit back and wait?). Ask him if he needs people to "practice" on (e.g. when using an AAC device, it's often helpful to practice with people that are patient and understanding of his deficits).
2. Give him time. Although laryngectomy surgeries are actually quite uneventful as far as surgeries go, the healing process takes MUCH more time than people realize. He will be in a lot of pain. He has a new stoma that looks and feels very odd to him. He may be very self-conscious. He has to learn a new way of doing a lot of things (e.g. communicating, breathing, coughing, swallowing, keeping his stoma clean). He has to become really familiar with blood and mucous.
3. If he wants help making an emergency kit, help him make one! Laryngectomees should always carry around a small bag, purse, or kit with emergency supplies that they may need - saline, forceps, tweezers, a mirror, heat and moisture exchange supplies. A Speech Pathologist or Otolaryngologist, if he is working with one, should also help him learn how to use these products and develop what he needs.
4. Help him seek out Laryngectomy groups if he's willing to attend - they are great support systems and you can learn SO much from people who have already gone through the surgery and are living successfully without a larynx. I can't emphasize enough him getting involved with other Laryngectomees, even just one to talk through what he's going through.
5. There is lots of online resources (and possibly community resources, depending on where he lives). This is an old website but webwhispers.org has a lot of GREAT information.
Hope that helps! This is a patient population dear to my heart.
posted by canda at 5:26 AM on September 16, 2015 [1 favorite]
1. Be patient :-) Communicating as a Laryngectomee can be very frustrating. Unless he is very proficient and adept at using an electrolarynx or has a TEP, his communication is likely slower than it was before the surgery. Ask him how he wants to be supported (e.g. does he want help when he's having trouble or does he want his communication partner to just sit back and wait?). Ask him if he needs people to "practice" on (e.g. when using an AAC device, it's often helpful to practice with people that are patient and understanding of his deficits).
2. Give him time. Although laryngectomy surgeries are actually quite uneventful as far as surgeries go, the healing process takes MUCH more time than people realize. He will be in a lot of pain. He has a new stoma that looks and feels very odd to him. He may be very self-conscious. He has to learn a new way of doing a lot of things (e.g. communicating, breathing, coughing, swallowing, keeping his stoma clean). He has to become really familiar with blood and mucous.
3. If he wants help making an emergency kit, help him make one! Laryngectomees should always carry around a small bag, purse, or kit with emergency supplies that they may need - saline, forceps, tweezers, a mirror, heat and moisture exchange supplies. A Speech Pathologist or Otolaryngologist, if he is working with one, should also help him learn how to use these products and develop what he needs.
4. Help him seek out Laryngectomy groups if he's willing to attend - they are great support systems and you can learn SO much from people who have already gone through the surgery and are living successfully without a larynx. I can't emphasize enough him getting involved with other Laryngectomees, even just one to talk through what he's going through.
5. There is lots of online resources (and possibly community resources, depending on where he lives). This is an old website but webwhispers.org has a lot of GREAT information.
Hope that helps! This is a patient population dear to my heart.
posted by canda at 5:26 AM on September 16, 2015 [1 favorite]
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posted by Lyn Never at 9:09 AM on September 15, 2015 [2 favorites]