Questions about speech and swallow limitations

[GmaPajama]

We have a cruise coming up next month. Due to recent cancer surgeries, DH has severe speech and swallow limitations. The cruise was booked before the surgeries, and we feel unprepared for this complication. I've talked with Ship Services, and they are able to meet his dietary needs - though we've decided to dine in our stateroom so as to not be a detraction for others. That solves the swallow problem.

 

The speech is another thing, and I've been unable to find where it's been addressed in this forum - though I could easily have missed it. I know there are other folks who have trouble communicating, but it's new to DH and he's nervous about how he'll manage. Here at home we are always together, and he counts on me to speak for him. On the ship we may not always be together, as he likes to lie in the sunshine for hours upon end - and I do not. He can carry a little card to show the waiters what he wants to drink, but he says he's worried about how to respond when other sun lovers try to start a conversation ... as they always seem to do. If he opens his mouth to speak, there's a pretty good chance he'll "leak". If he simply nods his head, he's afraid others will think he's rude.

 

His stress about this is slowly overtaking the anticipated joy of the cruise. Does anyone here have experience with this, or some words of wisdom for us? I want him to enjoy the cruise, with his mind at ease. We do have a balcony cabin - and I'm afraid he's going to decide to stay there the entire 10 days. It would break my heart to see him avoid the aft deck where he's always enjoyed the sunshine. It's been a long and difficult year - we both need this vacation, but I dread the thought of it being an uneasy one.

 

Any advice, or ideas, you can offer will be very much appreciated.

[Schoifmom]

We have a cruise coming up next month. Due to recent cancer surgeries, DH has severe speech and swallow limitations. The cruise was booked before the surgeries, and we feel unprepared for this complication. I've talked with Ship Services, and they are able to meet his dietary needs - though we've decided to dine in our stateroom so as to not be a detraction for others. That solves the swallow problem.

 

The speech is another thing, and I've been unable to find where it's been addressed in this forum - though I could easily have missed it. I know there are other folks who have trouble communicating, but it's new to DH and he's nervous about how he'll manage. Here at home we are always together, and he counts on me to speak for him. On the ship we may not always be together, as he likes to lie in the sunshine for hours upon end - and I do not. He can carry a little card to show the waiters what he wants to drink, but he says he's worried about how to respond when other sun lovers try to start a conversation ... as they always seem to do. If he opens his mouth to speak, there's a pretty good chance he'll "leak". If he simply nods his head, he's afraid others will think he's rude.

 

His stress about this is slowly overtaking the anticipated joy of the cruise. Does anyone here have experience with this, or some words of wisdom for us? I want him to enjoy the cruise, with his mind at ease. We do have a balcony cabin - and I'm afraid he's going to decide to stay there the entire 10 days. It would break my heart to see him avoid the aft deck where he's always enjoyed the sunshine. It's been a long and difficult year - we both need this vacation, but I dread the thought of it being an uneasy one.

 

Any advice, or ideas, you can offer will be very much appreciated.

 

I hope that you have a WONDERFUL cruise. It sounds as though you need it :)

 

Have you considered making a card for him to show others who try to converse with him? I have met many deaf persons who do the same. This may put his mind at ease regarding being considered "rude."

[Host Walt]

Has your (his) physician discussed the communications situation and the desirability of visiting with a speech therapist?

 

While a speech therapist may not be able to directly help your husband, he/she can suggest ways your husband can interact with others. Your husband seems to have a social personality who likely is and will be frustrated by his inability to communicate. The problem you both will face is that his sense of hearing is probably unimpaired so that casual contacts with others on board may be awkward unless he has an alternative way of responding to normal verbal interaction. (I'm thinking, for example, a small chalkboard or a pad of writing paper.)

 

A speech therapist may have other suggestions including some reassurance that his condition isn't unique.

 

Just a thought.

[blondietink]

My son has an electronic communication device to communicate with others, but it very expensive. However, it is my understanding that there are several APPS that you can get for a smart phone or tablet that are similar that will help with communication. There are also some text to speech programs available.

[GmaPajama]

Thanks for the responses here. I love that I can come to Cruise Critic and always get good insight. We do have a speech therapist, but since the last (and most dibilitating) surgery was just in November, her focus has been on the swallow. I guess no one likes a feeding tube, and DH didn't either. Ready or not, he insisted on removal after just 10 days - so right now the ability to maintain his weight is the priority. We do see her often, and I'll ask for communication tips at the next visit. For some reason, I didn't even think of her for this - perhaps we are just too focused on getting the nutrition down.

 

Truth be told, I'm a little surprised his doctors ok'd this trip. They did, in fact, encourage it - and told us there is no more risk to DH than there is to any other person. They say his health is stable, and unless he gets run over by a bus in a port, he should be just fine.

 

I like the idea of a "device" for communication. It's quick and easy to type up a little note on the iPad and show it to someone - or to carry a small notepad and pen in his pocket. I think we'll plan on that unless our speech therapist has a better idea. I still can't imagine why I didn't think to ask her in the first place.

 

In my heart, I know he'll be just fine. But I'm a worrier - so that's what I do. Part of it is probably just admitting we have to find a way to live with new disabilities. Thanks again for the input. I actually feel better already.

[sherilyn70]

As a cancer patient (for the last 3 years now) life is always changing and full of surprises that I need to adapt to.

 

My first question is how comfortable is he worth his diagnosis? Is he open about it or does he try to hide it? That will change how the situation should be dealt with.

 

In my case in very open and direct with others I meet. I show them that life does go on with cancer and the goal if it can not be cured is to live with it and still make the best out of every day and moment you are given. Life is a gift so many take for granted. So I would prepare by making a quick card to show others to explain the situation. If he wants to communicate then he can express that as well and take a pad of paper and pen with him to write what he's thinking. Otherwise some basic write cards with general answers (yes, no, I could use some assistance, thank you) could come in handy.

[GmaPajama]

Thanks for your input, Sherilyn. The cancer is not new, as diagnosis was 4 years ago. Radiation and one surgery were near the beginning. Because of time passed, he's mostly comfortable with the cancer itself. It's the latest surgery, with the new disability, that's so difficult. Perhaps I'm worrying about this more than he is. He actually said he'd like to go to the CC gathering onboard - I was so surprised! But that's good because it will put my mind at ease about how he can communicate. Good or bad, he sounds like he plans to deal with it.

 

I think I need to back off on my "mothering"!

[sherilyn70]

Sounds like he's a fighter like me. :) we can't let it destroy and take over our lives. We're upping or vacation schedules at this point since we know I'm nearing a point in progression that is not good. It's harder for us to do this though since we're only in our early/mid 40s.

 

I hope he recovers well from the surgeries and lives many more happy years. It sounds like you're a wonderful wife and caretaker. My husband is always worrying on my behalf a well. It just reminds us we're loved.

Edited January 11, 2016 by sherilyn70

[spookwife]

 

Truth be told, I'm a little surprised his doctors ok'd this trip. They did, in fact, encourage it - and told us there is no more risk to DH than there is to any other person. They say his health is stable, and unless he gets run over by a bus in a port, then DO NOT rent any scooter at any port visit. trust me. at least one person gets into a traffic accident every day from the ships he should be just fine.

 

 

 

he'll probably not need to worry too much about making small talk in a lounge. Hot tubs, maybe. I have noticed that most people in a lounge are busy reading, snoring or otherwise keeping to themselves.

[kitty9]

After working with disabled for many years, and being disabled myself, I find that most people are very understanding of disabilities. I like the idea of having a pad and pen or something to type into a smartphone for anyone who attempts to communicate with your husband when you're not there. I'm going to do a little research to see if there's a app where the phone could speak for your husband when he types in words. Give me a day or so to look around.

[kitty9]

Didn't take long. There are apps for both iPhones/iPads and for Android phones. The Android apps seem a lot better, and cost a lot less, than the iPhone apps. The ones I'm going to suggest are easy to use and let the user touch a photo and it then turns that into speech.

 

JAB TALK is free and is recommended by speech therapists

 

Tap to Talk is free and is for anyone with speech difficulties and is easy to use. Just tap a picture and it's converted to speech

 

AAC Speech Communicator is another tap to speech App.

 

The Apple apps are insanely expensive and they just don't seem to be at all similar to the Android apps. But if you have an iPad or iPhone, you can go to the App Store and check out Special Assistance Communication Apps.

[GmaPajama]

Wow! Thanks for all that research, Kitty. We'll look through some of those options together and fine the one that works best for him. I really appreciate the time you put into this for us!

[sail57]

my husband has swallowing issues from radiation treatment

He does have a PEG tube,we bring the liquid on board for the trip

My husband always eats in the stateroom,I have breakfast and lunch in the dinning areas and my husband joins me for dinner and he will have something to drink

Sometimes we have dinner served in the room

He has cruised twice with the PEG tube and we have TSA pre check ,helps with bringing the liquid on board the plane

you may e-mail if you have any questions

bdenap at msn dot com

[cello56]

How about getting him a Boogie Board writing tablet? He could easily answer or ask questions with this.

 

http://www.amazon.com/Boogie-Board-Original-eWriter-PT01085CYAA0002/dp/B00AFPR68E/ref=sr_1_1?ie=UTF8&qid=1453129194&sr=8-1&keywords=boogie+boards+writing+tablet

[GeezerCouple]

Thanks for the responses here. I love that I can come to Cruise Critic and always get good insight. We do have a speech therapist, but since the last (and most dibilitating) surgery was just in November, her focus has been on the swallow. I guess no one likes a feeding tube, and DH didn't either. Ready or not, he insisted on removal after just 10 days - so right now the ability to maintain his weight is the priority. We do see her often, and I'll ask for communication tips at the next visit. For some reason, I didn't even think of her for this - perhaps we are just too focused on getting the nutrition down.

 

Truth be told, I'm a little surprised his doctors ok'd this trip. They did, in fact, encourage it - and told us there is no more risk to DH than there is to any other person. They say his health is stable, and unless he gets run over by a bus in a port, he should be just fine.

 

I like the idea of a "device" for communication. It's quick and easy to type up a little note on the iPad and show it to someone - or to carry a small notepad and pen in his pocket. I think we'll plan on that unless our speech therapist has a better idea. I still can't imagine why I didn't think to ask her in the first place.

 

In my heart, I know he'll be just fine. But I'm a worrier - so that's what I do. Part of it is probably just admitting we have to find a way to live with new disabilities. Thanks again for the input. I actually feel better already.

 

It's wonderful that he's got the "A-OK" from the physician.

Sometimes something special/different like this can be a really enormous emotional boost for someone going through such difficult times. That includes you, by the way. :)

And it's great that you are planning ahead.

 

One little suggestion I'd add to the notepad or automated device is to get a bunch of printed cards, like business cards, that he can always *quickly* hand to someone, to explain the situation (e.g., that he is unable to speak, but he can hear just fine, and he's got a notepad/etc., that he'll be getting out so he can respond, etc.- and perhaps thanking the other person for their patience).

 

Your therapist may have ideas for wording this, as briefly as possible.

The entire point would be to give someone *fast* the information that it's "worthwhile" to hang around and not give up and walk away almost immediately, possibly wondering what was going on, etc.

 

And with the less-rushed cruise lifestyle (compared to regular office life or rushing to carpool, etc.), there's more time for someone to glance at the card.

 

I'm just doing the written version of "thinking out loud" here, but perhaps some sort of small upbeat picture?

Maybe some version of the regular name tag, "Hi, I'm Rumplestiltskin" as well?

 

IF this works, they might also be useful as he continues with his therapy and progress and goes out and around more.

 

Does this make any sense to anyone who may have first hand experience with something like this in their family?

 

It might also make sense to have another version (kept separate) with some fast emergency info added, such as your cell number, or for a cruise, which cabin you are in, or your full name.

Or maybe this could be in smaller print on the reverse side of all of them?

I think I'd worry (but I'm a worrier!) about feeling vulnerable just in case we got separated, or if he decides that he feels okay about sitting in the sunshine alone, as you mentioned.

 

This part isn't much different than what we have for our cell phone displays (even when locked), which is a variation of "ICE: [in Case of Emergency] call husband at XXX.YYY.ABCD"

 

Good luck to both of you, and we hope you have a very special time!

[sherilyn70]

Speaking of ICE. I recommend that for any phone. On my android I have an application called ICE that runs along with another application called widget locker. This allows anyone that sees my phone to immediately access important information (my husband, oncologist, diagnosis and meds etc) without having to unlock my phone. It allows calls to pass through the security to those people as well. I highly recommend it for everyone with am android phone.