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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 09/04/12

Recently, my husband was diagnosed with stage IV cancer.  He is in treatment and may even be completely healed, but it still is frightening. There is plenty of opportunity for learning to embrace "UNCERTAINTY." We have both always been the strong, available people who readily lend a hand to anyone and have listened to many woes of all sorts.  Now, when we are in the shock mode and need help with what my husband used to take care of, where are all those we listened to and lent a hand to? It is a new thing for us to ask for help and interesting to find when we do ask, we get the "avoidance" response. There are plenty of support groups for those living with cancer, but the spouse is basically ignored. No one asks, "How are you holding up?" or says, "Can I offer you a hug?" Anyone out there have the same experience? How do I connect with someone who has similar holistic beliefs on wellness and healing, who isn't all about God and Prayer, and yet believes in a collective divinity of responsibility?

Barbara

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Name: Ann Phaneuf
Location: Georgia
Date: 09/14/2012
Time: 01:49 PM

Comments

It's a hard road and I commend you for asking for help. I was a caregiver to my niece after her husband walked out on her when he found out she had ALS. My niece thought she was blessed to live out her last days with me and my late husband. But, we were the ones who were blessed to take care of her. Otherwise, we would have never known how to reach out to others with love and compassion. Please know that you are loved and even though I can not give you physical help, I know what you are going through. God sees our tears and He weeps with us and will provide.


Name: Gail
Location: Wisconsin
Date: 09/11/2012
Time: 07:34 PM

Comments

Hi Barbara: Oh yes, I can relate to you big time. My husband also 4 stage lung cancer (terminal) and 2 strokes too. Funny, we were also strong people and everyone we knew has suddenly disapeared or no longer wants to hear whats going on health wise here. Who would have thought huh! Everything you read how to "ask for help", kind of a joke since they arent interested whatsoever. I do go to a couple caregiver group meets and they are ok, actually no one there just like me. Its been 5 years thru all this and I am barely coping, husband has lots of other deficits too. Not really the person I once knew. I wish you the best you are both able to do! Thanks for writing in! Gail


Name:
Location:
Date: 09/11/2012
Time: 11:03 AM

Comments

I feel ya. My husband has dementia and I am his sole caregiver, and I feel as if friends and family have all but abandoned us. We were always there to help out, lend a hand, lend an ear, lend $$$ when needed and now they say to let them know if they can do anything (just a normal response but I don't think genuine) BUT when I have asked (very few times) I have gotten some help but NEVER does anyone just OFFER. I have found that the support groups do help but I would rather find help & strength though friends & family but that isn't happening


Name: Eve Schindler
Location: Iowa
Date: 09/10/2012
Time: 12:58 PM

Comments

I hear you, Barbara! Maybe your friends are also in shock, and just haven't figured out what to say or how to help yet. When I was diagnosed,I e-mailed friends who had fought similar battles with cancer, and asked them to write me. Their replies gave me more support that I ever could have expected. And pretty soon, visits and caring gifts began to arrive. Some people (like you)always know how to help others. But most of us need some suggestions on how to help. Your friends will appreciate the guidance.


Name: Teresa Shimkus
Location: Palm Beach County Florida
Date: 09/10/2012
Time: 08:27 AM

Comments

My husband was diagnosed with stage IV colorectal and liver cancer a year ago. 2 different chemo treatments and just last week results of 2nd go-round of chemo treatment has done nothing and tumors in both areas have grown. I am looking for some kind of support as to those who have gone through this "type" - colorectal - with the rectal tumor continuing to grow. Where will this lead to and how, if another chemo does not help? What am I to expect? I'm in tears imagining the worst for my husband. Any similar experiences that would help? I am open to holistic treatments, but to convince my husband of such is so very hard except for what I try on my own as his full-time caregiver - messaging him, trying to change his diet without him fusing too much,keeping positive atmosphere and only positive friends/family around etc.


Name: Rita
Location: Denver Colorado, 80214
Date: 09/09/2012
Time: 05:22 PM

Comments

My husband of forty years died seven months ago of "one of the most gruesome deaths you can endure" according to our oncologist. He died of a skin cancer in his temple.He died with home hospice and me. It took seven months. I almost went down with him. Nobody asked how I was. NOBODY. My daughter, only child, died of leukemia nineteen years ago with home hospice. She bled to death. Hosice assigned me a grief counseler for a year. Not this time. I am writing a book about the forgotten caregiver. If I can help anybody please contact me. Rita Stout


Name:
Location:
Date: 09/09/2012
Time: 09:48 AM

Comments

Dear Barbara, I also recommend the Well Spouse Association. It is the only organization which focuses on the needs of the spousal caregiver which, as you know, are often overlooked. I think you will find it to be a useful component of your coping strategy. Best wishes. Dorothy


Name: Hedy
Location: Mass.
Date: 09/09/2012
Time: 08:33 AM

Comments

Read the book Uncertain inheritance for support A must read Cancer institutes often have some support for caregivers through book discussion or social workers I know Dana Farber does in Boston I am so sorry for your angst and stay strong... You can endure


Name: Gary
Location: California
Date: 09/09/2012
Time: 07:44 AM

Comments

One terrific resource for caregivers is Wellspouse.org. There you will find fellow caregiving spouses who will identify and empathize with your plight.


Name: A Christian
Location: Colorado
Date: 09/09/2012
Time: 06:39 AM

Comments

It is funny how that works. My hubby and I are like you and yours. We are givers. To get support when in trouble you need to find givers. We pray and listen to all those around us in trouble. However, when times are not so good for us we do not get much support. When you are a giver you must not give up! Even though you seem to be shying away from prayer, I can tell it works when all other doors are not opening. Just knock, seek and ask and it will be given. We need givers like you to help those who do not give. Christian


Name:
Location:
Date: 09/09/2012
Time: 06:12 AM

Comments

Barbara, I also have a husband with ALS and had to learn to be a gracious receiver. I resisted asking anyone for anything! I have learned that there are alot of people that want to help. Start with Northwestern Eolia Center. It helps for you to sit down and make a list of everything you need (lawn service, snow shoveling, meals, transport, day shift or night shift relief, equipment). My friend suggested a website that you can write these needs down for others to sign up for. Good luck!


Name: Joy
Location: Ft Lauderdale
Date: 09/09/2012
Time: 05:14 AM

Comments

Barbara, I don't know where you live but if in my area, I am available to help in any way I can. I can cook, clean, just anything you need. It always amazes me how life expects us to simply accept and go on and sometimes there just is no place for our pain, fear and grief. We all know that we must go on even when the fear is so big we can barely take the next step. But love can light the way. I am on Facebook at "The Joy of Organics"...


Name: Jessica
Location: Virginia
Date: 09/05/2012
Time: 10:06 AM

Comments

Through Caregiver.com I found the Wellspouse organization (www.wellspouse.org). The support group in my area has helped me.


Name: Renee
Location: SD
Date: 09/04/2012
Time: 03:32 PM

Comments

I am the main caregiver for my parents. Both with dementia and dad with Parkinson's . I still work as a teacher, have one teen at home and work volunteer with youth. I have found when I need help I make calls. I have a list of friends who I can count on. I have tried posting on FB when I need help, but found calling specific people better with a specific task in mind helps. I have also found that those people I have spent time helping are not always the ones who help me. I don't know why. I have a close friend whose husband is stage 4 cancer too. I would sit with him during chemo treatments and her and I trained for a half marathon together this summer. We used it as therapy. Can't say they have really helped us out. I just felt called out of love to help them, even with my own caregiving going on. Between those who help me and those we,ve helped, the common denominator is our love for God and wanting to seve others. Get plugged into a church that really loves on the people, not just a bunch of zombies who go out of duty each Sunday.


Name: Lisa
Location: Wilmington,Ohio
Date: 09/04/2012
Time: 03:30 PM

Comments

Hi Barbara, The Cancer Support Community,formerly the Wellness Community is AWESOME,has branches all over the country,and online.I had cancer,and treatment seven years ago,and wanted to have this groups support,but lived too far away and without a computer.My sister,however lived real close to a physical location and was very upset at my diagnosis.Thankfully I had heard about them and encouraged her to go.I was greatly relieved to know that they were there for her,while being firm with her that I couldn't help her with her pain. I learned that ALL the cancer organizations "want to be there for you from the moment of diagnosis",so treat it like a smorgasborg and ask each one what help is available.Ask your family and friends and people you don't know that well.They may know things that your closest circle do not.I got a large financial donation to my living expenses when my family got tapped out.I got help from a variety of sources.alot of dead ends,and pleasant suprises!It was a roller coaster,but you don't have to do any of it alone. How fortunate your husband is to have you there to help him.How wonderful that he will probably fully recover,as did I.After the treatment was over I felt very emotional,and it suprisingly perhaps the most hard for me.I learned that this was normal.


Name: Diane E.
Location: Fredonia, NY
Date: 09/04/2012
Time: 05:19 AM

Comments

Dear Barbara, Please look for an on-line support group if you can't find a live one. I have joined the ALS Forums on-line to help bear the difficulties of coping with taking care of my husband, who has Lou Gehrig's Disease. They have been incredibly helpful and supportive. We don't all have the same beliefs, but we respect one another's and always manage to find someone who shares our own. There are many on-line caregiver sites. Also, consider starting a webpage like the "Lotsa Helping Hands" site sponsored by the Muscular Dystrophy Association. It's not just for people with neuromuscular diseases. You can use it as a way to keep friends updated on your husband's condition and post photos. But most importantly, you can create a calendar of "needs" that asks for help with chores, doctor's appointments, you-name-it. Your friends sign up to help right on the site and you get an email informing you, so it avoids endless phone calls. Good luck!


 







 

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