Caregivers
In the event that you are ever involved in "caring for" a laryngectomee, either professionally or personally, you might be interested in reading or contributing to this page.
links & reading material
General Information
IAL's FAQ page - Advice to the Spouse
Some GREAT advice to caregivers, although primarily directed to spouses.
MayoClinic - Understanding Cancer Treatment
An excellent series of articles dealing with all of the primary treatments ... a great overview for patients and caregivers alike!
An article written by one of the readers of this page may be of interest and value to you. The article is entitled "The Care and Safekeeping of the Patient with a Laryngectomy" written by Mary Ann Boucher, RN, MS.
Caregiver-Oriented Web Sites
Tools to Help You Help
A site created for you, the caregiver. Our tools can help make your life a bit easier. Learn to manage the difficulties of caring for a loved one with cancer while taking care of yourself.
Articles, News, Resources for Caregivers
Today's Caregiver's Magazine
Better Information, Better Health, Newsletters, Messages Boards. Sections on Diseases and treatments.
Senior Care & Home Care Directory
How can families plan for and choose care options to help their aging or disabled loved ones today? A Directory.
Here is a great website where friends and family can keep up with your postings of progress or just leave a note to say hello. It can be an emotional lifesaver for the patient and loved ones. CaringBridge has an easy set up for this Free website which is available for anyone who is having health problems.
Recommended by BJ Elmore
Message Boards
Comments
Suggestions for Caregivers from
WebWhispers Caregiver Members
(We have used 'he' in many cases to simplify the bulky 'he or she' phrasing. No offense intended to our many lady larys.)
1] Any patient needs help when he first comes home after any major surgery.. The caregiver role for a laryngectomee is the same initially - tending to his needs until he gets his strength back, and seeing that he has the medical supplies he needs. Perhaps the biggest help is making sure a pen and pad are at his side so he can "talk"immediately. A lost voice and no way to communicate is the trigger for depression. If you are frustrated trying to understand him, think how much worse it is for him.
2] Learning to take care of his stoma, if he is physically able, is his job, not yours. He will know when it needs attention and should not have to rely on someone else. The more independent he feels, the sooner his life is going to get back to normal.
3] I think caregivers need a place to 'talk' to others who are experiencing the same thing. They need a place to share positive comments as well as a place to share fears and frustration without being judged or made to feel that they are being selfish. I joined WW before my husband's surgery and tried to find support for caregivers with no luck. I have always hesitated to post anything on WW about ME and how I am was dealing with all this for fear that I would offend the very loved ones we are caring for. (See the WebWhispers Forum for 'members only' . There are private Chat Rooms available in addition to the new category we have set up for our Message Boards under Caregivers.)
4] Until his new voice is in place, make phone calls for him. Anticipate or offer to do this rather than wait until he asks. Routine things like calling for a service man, ordering items by phone, checking on a bill. If he did these things before, take over this job until he is comfortable with his new voice. Ask him to make a list of what he would really like to do himself, that you could do for him on a temporary basis. With your encouragement the list will get shorter as his voice improves.
5] Encourage him to practice speaking, but don't nag. Leave him time alone to work on this himself until he feels comfortable with his words. Then offer to listen.
6] If you feel he is depressed, tell the doctor and find out why. It could be a thyroid problem or something else medical rather than just adjusting to being a neck breather.
7] Drive him, or accompany him, to the many doctor visits and tests he will encounter after his surgery. Having someone at your side is a blessing, both in the waiting room and in the doctor's office. Go right in with him so you will both understand the progress or problems and solutions. You ask questions that he might not think of. Establish yourself with the doctor so if it is necessary for you to call him, yourself, he will know who you are. He will be dependent on his medical team for a long time to come. Don't be afraid to ask for their help with him when necessary.
8] Talk, talk talk. Keep him in the loop with what's going on with you, and let him know how you feel. It is OK for you to be scared and get frustrated, too.
9] Don't worry about what others say and how strangers look at him. People are curious about an unusual voice. Feel free to explain why he speaks the way he does but keep it simple.
10] Take care of YOURSELF! Not only for your own sake, but for his.
Suggestions for Caregivers from
WebWhispers Laryngectomee Members
1] From the day I was discharged from the hospital she demonstrated her unending love for me with her "tough love" approach. At no time was she anything but a loving wife and companion. Likewise, at no time did she allow me to become dependent on her for my personal care of my stoma and/or personal needs.
2] I remember begging my caregivers to let me know when they could not understand me when I began to use laryngeal speech--although they thought they were being supportive, I needed to be able to work on my communication when they could 'not' understand me!
3] Please don't always sit looking expectantly, interested, in what the lary might be about to say, to show you care. Presumably we know you do or you wouldn't be there. But when I am the sole center of your attention --I feel obliged to start a bright conversation in case you feel bored. And when we do say something ,please don't drop what you are doing as if they are words written in stone. We want to be treated casually. Ignored sometimes. And if you can understand us perfectly but we keep apologizing , as we do too much with the outside world, maybe, just say politely that if you don't get it, you will tell us.
4] Equally if we are reading or watching the box, interrupt us as you would anyone else. We don't want saints.
5] One of the things I refer to a lot is a list of frequent phone numbers and I take it with me wherever I go in case of emergencies. As a caregiver, you should do this, too.
For suggestions, contributions or questions about this section, please contact:
Ed Chapman, VP Web Site Information