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Looking for caregiving advice!

Looking for caregiving advice!

Posted by carlyt942 on Sep 13, 2020 7:40 pm

My Dad was just diagnosed with throat cancer a few months ago, and just underwent surgery for a tracheostomy. Because the mass was so big, (from the base of his skull to his shoulder) they didn’t end up putting in a prosthetic voicebox. So, right now he cannot speak at all. With COVID, he’s only allowed one visitor during his stay, and that’s me. Does anybody have any tips on how to communicate with him better and how to comfort him during this learning curve? He’s a very stubborn man and he’s getting tired of having to use a pen and paper and trying to get me to read his lips. 

Re: Looking for caregiving advice!

Posted by ashcon on Sep 13, 2020 8:01 pm

carlyt942‍ 
I'm sorry for your father's diagnosis.  How was his cancer found?
Losing one's freedoms and normal abilities are one of the highly underestimated casualties of cancer treatments. 
Perhaps the information in this link about speech problems will be helpful or at least a starting point.
https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/rehabilitation/speech-problems/?region=on

Also, the folks on the Cancer Information Helpline (1 888 939 3333) are a wealth of credible knowledge and resources .

Do you know if your father will be getting a prosthetic voice box at some point in the future?
---- "Nothing ever becomes real till it is experienced." ----

Re: Looking for caregiving advice!

Posted by Brighty on Sep 13, 2020 8:29 pm

Welcome carlyt942‍ .  I'm so sorry for your dad's diagnoses of throat cancer.    My fiance  had esophgeal  cancer  and his voice box was cut by the surgeon during his surgery  and for a good while he could not talk, only whisper.    He was fed up too with paper and pen.     There are actually  a few things you can do but they must be set up by an occupational therapist.   You can use an iPad  and put different  pictures  in it with a voice recorded and he can click on the picture  he wants.   There is also a divise  called a 'vantage ' which is amazing.   It can print out the sentences he wants  to say and can print out tbe answers to any question.     There are pictures of everything  on it and a voice recording that  can say what ever he wants to say.  His oncologist  or family  doctor  can refer him to the hospital  occupational  therapist  and you will be amazed  at the communication  devises they can set up for him!         You are already  comforting just by being there for him.    You can bring some books,  old photo albums or puzzles to the hospital  and maybe do thst with him.     His favourite  music perhaps?  Hospitals sometimes have dvd players with selections of movies .   My fiance  and I used to just snuggle in his hospital  bed and watch movies together.     Just different  things you can do with him during your visits.   How are you coping?  Do you have anyone  to support you? 
Help is out there. All you have to do is reach out.

Re: Looking for caregiving advice!

Posted by ashcon on Sep 13, 2020 9:12 pm

carlyt942‍ 
To add to Brighty‍ 's suggestions....

1/ Communication Boards. You can buy them, but many people make up their own.  You just need the text or images laid out on a board (or boards) for words or commonly used pre-fab phrases.  "Say it With Symbols" has some good ideas for boards.
2/ Does your father have a cell phone at his disposal? There are some text to speech apps such as Speech Assistant AAC or Google Text-to-Speech. Or Proloquo4text (Apple, costs $$).
---- "Nothing ever becomes real till it is experienced." ----

Re: Looking for caregiving advice!

Posted by Cynthia Mac on Sep 14, 2020 9:37 am

carlyt942‍ , I see you’ve got some great responses, and I have to admit, when I read your post, my first thought was that a nice, big sketch pad from the art section of a department store with some coloured pens/ markers/ pencils might be good for him.

While writing can be boring after a while, it might help him “doodle” or sketch some of his feelings out, too. And, you could play Pictionary!

Another thought is that the two of you could learn ASL together. (American Sign Language) The hospital might even have a program for it.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Looking for caregiving advice!

Posted by Cynthia Mac on Sep 14, 2020 12:16 pm

PS to my last post: you could also check to see if there’s a local chapter of CHHA (Canadian Hard of Hearing Association) in your area.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Looking for caregiving advice!

Posted by law on Sep 14, 2020 4:44 pm

carlyt942‍ 
HiCarly and your Dad as well,
I cannot add any advice to the excellent ideas already coming your way....but I feel for you and your father. It sucks big time.
I am fortunate to have fought my way through tongue cancer....and still have the ability to speak, in spite of the hoarseness recently caused by this awful smoke/ fire situation.
The idea of pictures sounds like it could be more interesting than lip reading at this time.... even playing charades would be a corny, but useful idea.
I guess it is trite to write, "Hang in there"...but I am thinking of you and the family.
law