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
American Cancer Society - Caregivers Section
ACS has launched a new section on cancer.org specifically for caregivers. It addresses issues like giving care at home, coping emotionally, and discussing cancer with others.
Medicare - Special Section for Caregivers
Help with Billing - Is it Covered? Read Notices, File Claims
Navigating Medicare - Basics, Compare Plans, In-home services
Get Help - Financial, Local Support, Stay Healthy, Exchange Info
Care Options - Who takes Medicare, Nursing Home Alternatives
Over 4 years have been spent trying to compile a complete list of senior care resources after
having a hard time finding reliable information for my dad. I have now posted 70,000 caregiver resources at: www.SeniorLiving.Org
The site includes EVERY senior care option from independent living to skilled nursing. There now are over 8,000 images of care facilities, over 10,000 links to senior care organizations and thousands of reviews of care services. The site is not sponsored or paid by any service providers and it is totally free to list a service so the site provides unbiased information with no strings attached.
I believe that this is the level of information that caregivers and seniors need to make an educated decision about senior housing. No other resource has anything like this.
An excellent series of articles dealing with all of the primary treatments, a great overview for patients and caregivers alike!
"Welcome to the Eldercare Locator, a public service of the U.S. Administration on Aging. The Eldercare Locator is your first step for finding local agencies, in every U.S. community, that can help older persons and their families access home and community-based services like transportation, meals, home care, and caregiver support services."
Their phone number is 1-800-677-1116. It is a nationwide number that could be of use to many of our members.
MySeniorCare’s mission is to support families and their aging loved ones as they search for information, resources and providers of senior care. They provide a wide range of support and credible information: 500+ articles reviewed by industry experts, a member community featuring message boards, user and expert authored blogs and a section called 'Ask the Experts'.
You may compare and directly contact prescreened home care, senior housing and hospice providers in your local area with a tool allowing search by the specific type of care and the payment methods. Users can also read user reviews of each provider and call toll-free numbers to schedule a free consultation.
Good source for locating senior housing communities.
Cleaning For A Reason
Cleaning For A Reason is committed to providing the gift of a clean home, while you are undergoing treatment for any type of cancer. Our goal is to focus on your home, so you can focus on your health.
The foundation was officially formed in May 2006 as a Texas non-profit corporation. We recruit maid services that voluntarily clean your home free of charge.
Patient Application Process:
Caregiver-Oriented Web Sites
New Lifestyles Online is the oldest and largest resource for Seniors,
offering listings of Assisted Living, Nursing Home, CCRC, and
Alzheimer's Care facilities. NLO has been offering free printed
directories for over 15 years. They have a Forum with Message Boards, and the information on each state.
Articles, News, Resources for Caregivers
Today's Caregiver's Magazine
Better Information, Better Health, Newsletters, Messages Boards. Sections on Diseases and treatments.
How can families plan for and choose care options to help their aging or disabled loved ones today? A Directory.
This growing directory includes a free listing for any assisted living facility. The goal of this site has been to make online advertising accessible to all assisted living facilities, large and small, to list their information. Many facilities are advertising using photos and videos. They have just added a google mapping capability to the Assisted Living pages! Please check out your area.
Assisted living has emerged as a popular senior living option for those elderly people seeking a place to reside that offers medical monitoring and minor medical care while still offering personal privacy and freedom.
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
Something I found to be very helpful in keeping family and friends updated to my condition during and after surgery is a free website, CarePages. This allows the patient and the patient's immediate family to update the patients status without all the phone calls and individual emails.
Hope you can pass this on.
Recommended by Aaron Futterman
Look for the special Caregiving Board
The following are some sources of caregivers training. There may be local resources in your area as well.
Alison - Diploma in Caregiving Course
The free online course Diploma in Caregiving is designed to provide you with the knowledge and skills necessary to provide effective care to any clients or family members that you may find in your care.
Arizona Caregiver Coalition - http://azcaregiver.org/
Mostly free online tools and educational courses to help you care for your loved one. Use available training, education, support groups, respite and access to supportive resources so you can thrive as a caregiver, not just survive!
American Caregiver Association - Caregiver Certification
The American Caregiver Association (ACA) has been around since 1985. We are the most recognizable name in the caregiver industry and we are the National Standard for caregiver and assisted living manager (ALM) certification in the United States.
Sunrise Services - Online Courses
Caregiver training courses for maintaining your annual CE credits.
Regis College - Online Geriatric Program
With Regis’ online Adult Geriatric Nurse Practitioner-focused Master of Science in Nursing program, you can join this in-demand specialization and help elderly patients maintain healthy and comfortable lives.
Maryville University - Online Adult-Gerontology Program
Each of Maryville’s Adult-Gerontology Primary Care Nurse Practitioner programs are designed to help experienced nurses provide first-rate care for adults of varying ages.
When Atos sent the address of a video relating to the use of an electrolarynx, I went to the site and watched a well done video explaining using an oral adapter on the electrolarynx. Then I noticed there were 60 of these videos. You can put them on autoplay or just have them in numerical order and chose the one you wish to see. They are varying lengths from 1 minute to double digits. Some are made for clinicians, instructional videos with professionals demonstrating how they solve problems. Many others, titled "Life as a Laryngectomy" simply tell who they are and a bit of their story. All are interesting and informative.
These links take you to information relating to Hands Free: They are part of the 60 videos.
Life as a laryngectomee - family members Tim and Jenny Noe
Life as a laryngectomee - Bobby and Betty Noe
Life as a laryngectomee - Howard and Mrs Defibaugh
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.
Emotional Byproducts of Cancer
by Pat Sanders
Any major change in your life may create a shift in your relationships that cause far reaching adjustments. Cancer is a very major change and prolonged treatments seriously change everything in your life. Those who come through this kind of crisis will sometimes find they do not feel the same as they did toward their partner. The dependency balance may change. One of you may love the other even more, or maybe less. Likes and dislikes can change and the behavior of one may make the other respect them more for what they are capable of or less because their behavior under stress is not what was expected. Let’s look at a married man (it works both ways) who has to have a laryngectomy and ask some questions that are tough to answer about both sides of the relationship. You and your mate are the only ones who can answer these questions.
Seeing a professional for marriage or relationship stress might allow each person to define problems that they cannot bring themselves to discuss with each other no matter how close they are or how much they love each other. It can be fear of taking that open a step or the inability to speak of a problem because of the deep hurt it will cause the other person. In some cases the person feels that it has been said so many times and in so many ways that repeating it is useless....and, if that is the case, they feel they are screaming in the wind and their words are blown away.
My comments are not directed toward any one person’s situation and I hope it is far removed from what you have experienced but it might help some to understand a little of what could be going on with your own lives and partners. You and your caregiver might have had one or more of these problems. Let’s look at what changes have been necessary in everyday life since cancer joined the family?
FINANCIAL STRESS - Is he still the wage earner? Is he trying to go back to work before he is ready because he has to? Did he have to change the type of work and take a lesser position? Is he now home permanently? Was he able to obtain disability income? Did she work and has being off work, to be with her husband, damaged her job dependability and earning ability? Has this cut their income so both are worried about finances? Did she have to go to work after not working and did she have to have job training to even be hired again? Did any of this change the financial balance of your lives?
EXTREME FATIGUE - Is he exhausted from the physical and emotional stress of the surgeries, radiation or chemo, not sleeping, the coughing, pain, and discomfort? Is she exhausted from the effort to listen and watch him, to be there when he needs something, to understand and help him while she still tries to keep up with the everyday chores?
CHANGING ATTITUDES - Is he resentful and angry that this happened to him or is she resentful and angry that this happened to her? Does he refuse to eat what she prepares, pay no attention to what the doctor says to do, or resists learning to talk again? Does she ignore him or does she feel it is her responsibility to get him well and is she overbearing in trying to do too much and force him to do the same? Does all of this surround and take over their lives? Do they love each other but each find the other unbelievably irritating?
SOCIAL - Are they staying at home and avoiding old friends? Are they able to eat out in public anymore? Do they watch mindless TV so they don’t have to try to communicate? Do they no longer go to their religious services or have people over for dinner or to visit? Does he refuse to go out and is she afraid to leave him? Are they lonely together?
ANGER – Do they take out anger on each other? Are things left unsaid or is too much said? Do they lay blame because of smoking, drinking or waiting too late to go to the doctor? Are they angry at the professionals because they were not saved from this or because they feel there had been a misdiagnosis? Is either of them bitter at life?
While any one of the above may or may not cause a loving relationship to dissolve, they can cause changes in the way one of them feels toward the other, their union, and their lives. One or both may be thinking, “I don’t want to live like this the rest of my life.” Or “What happened to the person I married?”
It is natural to have some depression when you have the loss of your health (even for a short period of time) and it is natural for this to affect both so one person can’t fix it alone. If these are problems that affect both of you, tackle them together, one problem at a time, before they grow insurmountable. Get some help from a professional counselor if you feel this would help. That person may not be able to fix your job situation, but may be able to help you each deal with anger, hurt, frustration and confusion. You can make one step in the right direction by treating your partner with respect and caring. Start now. Even the best of marriages or relationships can be damaged if you don’t deal with these emotional byproducts of cancer.
LISTENING AND TALKING ABOUT DEATH
When anyone gets informed that hope in this life is gone, - sympathy, empathy, compassion and understanding is needed. Someone to listen. It is so hard for the family to cope and it is too hard to talk to those closest when it may just end in tears. This leaves the person in somewhat of a vacuum.
Open your door so they know you will be there if they wish to talk and that is the best thing you can do. It is important to prepare yourself not to get overly emotionally involved with a friend, neighbor or club member. Remember, that person will die whether or not you try to make their last time a better quality of life than would have been had you not been there.
I was told years ago, that it is selfish to be unselfish. Sounds silly until you think about it. If you wear yourself out worrying and trying to help where you can't, you wont be able to help anyone else, including yourself. About 25 years ago, I was talking to a lass who had just lost her first baby. It was a small town so she knew I would be aware, and we talked for a while when she surprised me by saying that friends could not handle discussing it, even crossed the street to avoid her! Isn't that sad! Being a young mum at the time, I could never imagine how they coped.
Why do we avoid talking about the only sure thing in life! That is why we need to listen - there is no right or wrong thing to say. It is ok for the dying person to cry, but we need to maintain our composure while listening. Also, what is said is in confidence, passing thoughts, which is the way to process past issues we all have in life. All these circumstances take a lot of time, can be emotionally draining, so, if you take it on, be prepared!
I have always tried to be a good listener, as I have never found one when I needed one! However, my tolerance level has been stretched the last few years - not quite sure if I qualify at the moment! My motto is - the most precious gift you can give is your time.
May God Bless You All. Thanks for being here.
Just my two cents worth,
PALLIATIVE VS. HOSPICE
Palliative Care was known as comfort care but there is more to the difference.
You can get palliative care while still receiving other treatments, like chemo.
This article will give you the information you need to start your search.
The difference between Hospice and Palliative care is explaiined at the following link:
You should also ask your doctor about palliative vs hospice care. It needs to be prescribed either way.
There is a caregivers guide you can download from this web site that can help:
Personal experiences are so different because the needs are different. Please do a lot of reading and thinking about this choice.
You will need to select a care provider in your area that meets you needs. Do the research and learn more, so you can make the right choices.
I think you can also start with one kind of care and then go to the other.
Transitions- thoughts from a laryngectomee widow
Below are some thoughts from a laryngectomee widow, Avis Kaeselau, which she wrote and titled "Transition" after losing her husband to "our disease". It is offered here as another example of a way to deal with and recover from grief.
His clothes still hung, on their hangers, in our closet, neatly and untouched. Everything was in its usual place. How could I even think of getting rid of them? It would only leave another big void in my life. My husband had died a year ago and it was unthinkable to part with anything that was once the very essence of him.
He was a hard working, loving man, providing for his family, and his clothes, being modest and humble, portrayed this aspect of his life. I could picture him in every shirt that he wore on different occasions .......his favorites and not so favorite ones. Each piece had a story to tell. Deep down I fantasized that maybe this was all a dream and I would soon wake up to find him lying next to me again. So I shouldn't clear away his things, because he may need them! But this just hasn't happened and who was I kidding, but myself.
I reasoned that it seemed so insensitive, to throw his clothes into a Salvation Army bin , where they would get mixed up with everyone else's castaways, or to donate them to a thrift shop for people to scrutinize and pick over...then, to perhaps witness someone in our town wearing my husband's shirt! Maybe I could just leave them in our closet forever? That would be easy, but my life has changed dramatically since his death and I am still here, realizing that I must move on and keep living. Nothing stays the same, even though I wish it would.
Dads flannel shirts and winter sweaters were dispersed among our four children and myself, but our son and sons in law were all too big and tall to fit into his pants and cotton shirts. What could I do with them? I agonized over making the right decision. What action could I take that my conscience would allow me to live with, while gaining space in our once shared closet, soon to become solely mine? Would giving them away or tossing them out make me selfish or irreverent to his memory?
About 3am, early one morning, an answer popped into my head. Due to my belief about death, I had come up with the perfect solution. I would make a quilt from the material in the clothing......in fact, five quilts, one for each of our children and one for myself! My belief is that, when you die.....you don't ! You just change form (from body to spirit) and so it would be with his clothes. They would simply change form and be with us in a different way. This was the answer! I felt good about this idea and couldn't wait to begin the transformation!
That same day I started, carefully cutting up his shirts and pants into the same size squares. No fancy patterns, because he was not fancy or frivolous. Each sleeve and pant leg was tenderly opened to enable me to cut the flat pieces that I needed, without a seam. I was especially careful to keep his shirt pocket in tact in one of the squares, where I would eventually tuck a laminated, heart shaped photo of each child with their dad, which also had a message on the back that stated, "I'll always be with you". This would be attached to the" pocket square" with a gold cord, pinned to the inside, so it couldn't drop out, and from each article of clothing, I collected every button for my button box, which I inherited from my grandmother ( a beautiful frugal women ) and my children would someday inherit from me.
The colors and patterns were artfully coordinated into harmonizing groups and were sewn together with much thoughtful concern. Then, they were backed with a super soft fleece material and lightly stuffed with batting. Lastly, they were quilted with floss of a complimentary color and each priceless photo was placed in its respective pocket square. They were striking, simple and honest... an array of irreplaceable memories, with the added sense of touch!
When the quilts were finished, the children came to the house to get them. We sat around, each one eager to try out his special blanket, as we deeply pondered every square, recalling it's happier past. Within a few minutes, we began to notice something unusual....an "extreme" warmth that oozed from them. They seemed to exude a heat that was intensely soothing to the soul, yet so much hotter than we would have imagined any quilt could possibly produce. We immediately knew that it was dads "energy" and the warmth of his love, that we felt, then, and every time since, that we've used them..
I don't mind the emptiness in the closet, as I thought I might, knowing that when I need to be hugged and comforted, I can snuggle under my precious quilt to feel cozy, safe and loved, because his clothes haven't really vanished, they are still here with me......... like him, they've just changed form.
81 Elizabeth lane
So Dennis MA 02660
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