How to be Supportive

[Colleens_Husband]

Dear Friends:

To open up this new forum, I think it would be appropriate to ask the most important question for a caregiver; How can you be supportive? I would love to have any thoughts or ideas. Even from our brave warriors, what did you find supportive and what did we do that just annoyed you?

My hope is that this thread will be helpful to the spouses of the newly diagnosed and that each spouse doesn't have to start from scratch, and instead can learn from the experience of those who went before you.

Thanks for participating,

Lee

[SoCalGal]

The things I appreciate the most (from my man):

Being willing to listen to me obsess over almost every issue concerning my treatment and survival.

Making me feel like a woman despite an interesting arrangement of my parts.

Telling me I'm going to be okay no matter how grim the news or how many times I ask him that question.

~Flori

[Gerri]

My husband:

Shaved my head for me when I was losing my hair and then told me how much he loved my new GI Jane haircut.

Went to every chemo appointment with me and always went out, bought me lunch and brought it back to me.

Ordered me to the couch every Sunday for a nap. I always protested, but was sound asleep within minutes.

Realizes that cancer has changed me forever, and he loves me even more because of it.

[Colleens_Husband]

To me the number one thing about being supportive is to be with her for every single appointment. Share the good news and the bad news together. Make sure she knows she is not going to face anything alone.

The one exception is the radiology appointments, since you can't be in the room with her anyways and there are 35 of those, you can be excused from missing those. You should be at the first one though and meet with the radiology oncologist.

[sheismyhero]

I am open to any suggestions on how I can be more supportive. I sometimes get the feeling that I am trying to do to much and am overstepping the boundaries. I am open to any and all suggestions.

[Jackie07]

From my husband: Whenever you have a chance to watch something on TV that is relaxing to you or whenever you have a chance to go somewhere to do something that you enjoy (such as hitting golf balls for 30 minutes or taking morning coffee at the donut shop...), do it.

He also mention some quotes of Paul from the Bible. And he thinks that a person who is stressed out would not be good in taking care of the patient (I can attest to that :). Whenever you can, read books that give you the power of positive thinking. Always try to remember what previlege it is to be together and don't dwell on small (or big) things that are really not important.

This is a young man (now 51) who was going back to college to get his degree when his bride of 2 years had to undergo a 25-hour brain surgery, 10-day semi-comatose, and 30-day rehabilitation including speech therapy, physical therapy, and occupational therapy. Had to quit his graduate study when his wife got her first breast cancer. And had to juggle in between his Mother's Alzheimer's Disease and his Father's two hip surgeries in addition to his wife's recurrent breast cancer.

Yes, he did end up have to start taking anti-depressant about two years ago. And he takes way more pills than I do every day because of his heart disease. (two stents in his heart in 2002/)

In conclusion, take good care of yourself, caregivers. We love you and we need you. Please put yourself first.

[Bill]

Sheismyhero, you have come to the right place for answers and advice. This site is rich with information, from both caregivers and care-recipients. Please feel free to ask any questions and "open up". You will be treated as family here. (sometimes we squabble, though, as all large families do) You stated that you feel like you are trying to do too much and overstepping your boundaries. How so? If you feel like being a little more specific, I think we might be able to help more. Please keep in touch

[sheismyhero]

Bill, Thanks for the warm welcome.

When she was first diagnosed with breast cancer, I felt I must educate myself on the subject. I found many great web sites and picked up several books.

I try to attend all appointments with her. However there are times when my attendance is just not possible. I do harbor some guilt for not going with her. Thankfully we have a very good friend is willing to attend in my abscents.

One of the bits of information I found on the internet was "shut up and listen". This is where I am afraid I will overstep my boundaries. When to bite my tongue and when not. I only offer input when I feel she has left something out or when I feel that a question has not been explained to its fullest.

When it comes to doing for her, she says "I'm not helpless" and that I don't have to do all the work around the house. Our opinions differ on that subject. I feel there is much more that I can do. I tend to want to take as much of the stress out of her life as I can. I recently ask her if she should take off work and then it dawned on me that that is her descision to make not mine. Lesson learned.

I appreciate having a place to come and express my feelings, gain knowledge and support.

Thanks for listening...Bob

[Bill]

Hey, Bob, it's good to have you here, and thanks for giving us a little more info. I can already tell that you are a good man and I'm sure that others will agree. You have done your homework and the mere fact that you are here on this site speaks volumes. It's great that you try to be with her for all appointments, but, let's face it, in this day and age, that's almost impossible. I'm sure it means so much to her that when you can be there, you are, and when you can't, you have a good friend that can. You shouldn't feel guilty. And when neither of you can be there with her, make sure that you call as soon as you can and check how it went. If you haven't done so already, start a journal/notebook where you can jot down questions and thoughts. Always have it with you. The advice that you got from the internet "shut up and listen", that is valid for when your wife/girlfriend/partner is speaking, but when the doc is speaking, and you have a question, pipe up immediately. In my opinion, as those concerns and questions arise with the doc., they need to be addressed right then and there, as opposed to trying to back-track. Bob, I know that you want to do as much as you can for her, but like you said, lesson learned. Here on this site, we like to know where people live, so that we may be able to offer more help and support. Where do you guys live? (I promise I won't try to sneak into your garage and borrow stuff)

[PinkGirl]

Hi Bob
Have you asked your wife how you can be more supportive?
My husband was extemely helpful and supportive during my
chemo treatments and he has continued to be so three years
later. But there were times when I wished he could read my
mind. Don't forget ... men are from mars and women are from
venus.

[sheismyhero]

Bill, Here is some history on us. Both my wife and I have lived all of our lives in Southern Illinois. Together we have two children which are both grown and have moved away from this area.

In late 2005 my wife was diagnosed with squamous cell carcinoma in her jaw bone. She underwent extensive surgery (14 hours) to remove the left side of her jawbone. Then reconstructive surgery to replace the jawbone. After the operation she spent 7 days in intensive care. Then came the recuperation from the intense surgery. Although she did not experience the chemo treatments, the radiation treatments she had to take were about as much as one person could stand. As a result of the radiation treatments, she developed blisters in her mouth. She endured a great deal of pain and suffering as a result of the caner.

On June 20th my wife and I took our son to the airport in St. Louis. He was in the military and had to return to Germany. Needless to say it was a very depressing day for both of us. While doing yard work the next day, we stopped for a rest. At that time was when she told me of the lump in her breast. My inital response to her was "you are a very strong will person, you can beat this". I vaguely remember riding across the yard on the mower and could no see where I was going because of the tears in my eyes. We were both devistated to say the least. Her diagnosis was er- pr- her2+ stage 2.

This is why SHE IS MY HERO...Thanks

[Colleens_Husband]

Hey Bob:

I just want to let you know that if your heart is in the right place, then you aren't going to do anything that is so wrong emotionally that it can't be fixed. And it is pretty obvious that your heart is in the right place.

There is a fine line between being super supportive and suffocating. That line changes day by day and hour by hour. If you are doing it right, you will be crossing that line quite a bit in the early stages and less so as you and your wife learn how those boundaries can change. If you communicate with your wife, things will work out eventually. Sometimes communicating means not saying anything.

As for me, I had just as much anxiety as Colleen did with this cancer. When I was feeling insecure, then I tended to talk too much about it. Sometimes Colleen just wanted me to be near her and to try to be as normal as possible. Unfortunately, cancer is like an elephant in the room, a big scary elephant at that. Something I learned to do was that when I had too much anxiety, I would start planning normal things like a vacation or what the next big home improvement project was going to be. It got everyone looking past the cancer.

Hey Bob, I am glad you found this site. I think you are doing a good job with all of this. You and your family will be in or thoughts and prayers.

Lee

[sheismyhero]

Pink Girl, Thank you very much for the feed back and support. My wife and I have been married for almost 32 years. Prior to the cancer, I never had to ask if there was something I could do for her, It just came naturally. The situation now is far from the norm. I guess that fortunatly for me, my wife is not a hard person to please. I do ask her if there is anything I can and should do for her. I tell her that I love her, buy her flowers and on occasion if given the chance will tickle her feet. I do know that I the situation were to be reversed, she would do what every she could to help me. Thanks for your encouraging words.

[sheismyhero]

Lee, Thanks for your encouragment. There are times I get anxious. Mostly due to the time span between the diagnosis and the beginning of the treatments. The fear of matastisizing is overwhelming. I can only immagine what is going on in her mind. Then there was the time we drove to St. Louis (2 hours) for a doctors appointment to be told that we did not have an appointment. She had received a notice of the appointment in the mail but that did not seem to matter. I could very well have let my anger get the best of me but my thought was what effect my causing a scene would have on my wife. After a few minutes of discussion we were able to speak with the nurse and was told we could wait two hours to see the doctor. Its ws hard to put the thought of the situation behind us but in order for us to look focus on the future we have to forget and forgive. Looking back on the first time my wife had surgery for cancer, the 16 hours I spent in the waiting room taught me a great deal about patients. I guess the moral of the story is that being a caregiver goes much farther than material needs. Lee thanks for the feedback and encouragment.