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I hate it when people stare at my wife!

Tubbs
Posts: 51
Joined: Jul 2009

Went to an outdoor food fest today with my wife. She really wanted to go despite the fact that her brain tumor(s) make it hard for her to walk and that it has been very hot out lately.

She held on to me for support as we walked, but after about 20 minutes and several breaks, she really had trouble walking. Some people stared at her, probably thinking she was drunk. You'd think the wig and the gaunt look in her face would clue them in that maybe there was something medically wrong with her.

We had to park a couple blocks from the street fair, and I wasn't about to have her walk with me back to the car. She needed to sit. So I found a bench and lowered her down to sit. A woman working a booth just stared and stared. My wife waved at her as if to say, 'Yeah, I know I'm a mess. Are you having fun watching me?'""

I wanted so badly to go over to the lady and tell her my wife has brain cancer and has lost the ability to walk like most everyone else and no, she's not drunk.

Since my wife was getting agitated, I moved her to an area closer to the a church parking lot. An old man had a couple chairs set up under some shade. I told him that my wife has medical condition, so could she sit in the shade in one of the spare chairs? He couldn't have been nicer. He helped prop her up while I ran like crazy to bring the car around. The only thing that keeps me from breaking down and crying in these situations is the immediacy of taking care of my wife.

Babbling a bit here, but I keep thinking of that lady who stared at my wife. Of all the things today, that bothered me the most. I shouldn't let it, but it just does. STOP STARING!

barbn
Posts: 33
Joined: Jan 2012

There are are kinds of people in this world. My husband also has a brain tumor and can't walk for distances at all. A few feet. People will stare, some out of curiosity, I don't think most people do it to be cruel but they see something different going on and can't look away.
Be proud and smile at them. Show them you are proud of how far your wife made it today. They may not know why your smiling..... but you do and it is an accomplishment for both of you.
I had a rough time taking my husband places to eat cause his left side doesn't co-operate to well. People would stare and it bothered me cause he would make a mess or food would land off his plate. He loved to go out and eat. I found this place where they went out of their way for (handicap) people. They went the extra mile for you.
Since your wife likes going to outdoor fests etc... maybe get a wheel chair for when she gets tired out.
You can still enjoy what is going on and it won't tire her out as much.. There are organizations around they will give them to you for free to use.
My husband is declining but we still like those walks in the wheelchair to get fresh air. We don't go out to eat much more cause it takes so much out of him. It is the small things that matter. Don't worry about people around you... They should count there blessings they do not have to be going through something like this... There are a lot of good people out there... who are willing to listen and give a hand.
Thinking and praying for you and your wife.
My caringbridge site is
wwww.caringbridge.org/visit/jessenowak
barb

grandmafay's picture
grandmafay
Posts: 1622
Joined: Aug 2009

I agree that most people don't stare to be cruel. They are just curious. Some are even concerned and wonder if you need help. In my husband's last few weeks, we did use a wheelchair for anything that required very much walking. It was easier for both of us, and generally people were very kind, holding open doors, etc. I remember one neighbor commenting that she thought it was very brave of us to still go out to lunch which we did most days even though he didn't eat much. He loved talking to the waitresses at our favorite places. One even paid for our lunch when she heard he had gone on hospice. We didn't consider it brave. We considered it living our lives while he was still here. It had never occurred to Doug not to go out. In many ways, I think we educated those around us. We often explained that Doug had cancer, but we didn't let it prevent us from going places when he felt up to. Some people are going to stare, but keep doing the things you enjoy whenever you can. Fay

Noellesmom
Posts: 1312
Joined: Aug 2010

I often find myself resisting the strong urge to go help someone who is obviously struggling with a medical issue. Most times I end up going to help and have yet to be rebuffed but always try to anticipate that possibility.

My husband, Jim, is in remission from throat cancer but, fortunately, never lost his ability to enjoy eating. He dropped to 119 pounds at 6 foot tall and I'm sure the marks on his army from the blood thinners and other medication looked awful to other people but we went everywhere together after I got off work in the evening and on the weekends because I knew he was tired of being home. I don't know how many meals it took us much longer than would be expected for him to eat because the painkillers made him much slower at eating than normal. Patient waitresses refilled our tea glasses and those familiar with us as patrons left us alone to take our time.

I did not care what they thought but I'm sure had they said anything out of line that raging wife inside of me would have taken them apart and put them back together in a much different configuration.

now_what
Posts: 3
Joined: Sep 2012

I am the type that often offers to help too, and I could be one of those ones that is staring...not out of curiosity but more out of deep thought about whether or not to offer help, how to help, etc. I find this especially true now that I've been down this road with my mom and know how hard it is to get around and how much extra work it is to help her do simple things like go to the store.

Having said that, it doesn't negate your feelings or make them any less valid. I've posted one post of my own on this board, and I can't tell you how much it helped just to hear that my feelings were ok and normal. I'm not going to lie and say that just because I'm probably one of those people that sometimes stares (out of concern and desire to help) that I don't occasionally feel defensive and protective of Mom when someone stares at her. She has a colostomy bag now, and her stoma "talks" (as she puts it) when and where it wants to talk. I hate to see people give her a dirty look as if she has poor manners for passing gas in the middle of a store or a restaurant, which by the way she would never do if she could help it.

Have you talked to your wife's oncologist about signing off on the paperwork to get a hangtag/plates for handicapped parking? My mom fought this move for about a year and a half, but it has really made a huge difference for us and for her to have one. With the closer parking, she doesn't have to walk as far to get out of the elements and to a motorized cart if we are somewhere that she will be using one. I highly recommend looking into it if you haven't yet. I'm not sure how much it would have helped at a big festival like you describe, but in normal day-to-day activities, it has been a huge blessing for us.

mpd0353
Posts: 8
Joined: Feb 2012

I never expected that I would post tonight. I have only posted twice before and tonight I just was looking at the caregivers sight because I am feeling overwhelmed with sadness tonight watching my husband suffer through his third round of six chemo treatment for a recurrence of Malignant Peripheral Nerve Sheath Tumore.

I also struggle with how people stare at my husband. We travel to Boston every 21 days so he can receive 7 hours a day of infusion and due to a "pilot program" at the Infusion Center they send us back to a hotel every night for three days instead of keeping him inpatient. So every day we walk the two and half to and from Mass General so my husband can receive his treatments. Not only does he have the hair loss and significant weight loss that most chemo patients have he also had his sciatic nerve removed during his surgery to remove his tumor and has a permanent disability and has difficulty walking so now he needs a cane. On the busy streets of Boston you would think that people would be in a hurry to get to their jobs or wherever else they are going but it seems to me that people actually slow down to look at him. They look him up and down and look at me and back to him and it isn't just one person it is almost every person. It drives me crazy. I am already so protective of him but this just makes my blood boil. I don't know why it bothers me so. I have even tried to tell myself that in the big picture it shouldn't matter, but it does. He notices it, not just me. It makes him feel so self conscious. He has enough to deal with and he shouldn't have to deal with rude people. It isn't like it isn't obvious that he is sick. Why do they do? Some people even have a look of disgust! What is disgusting about a human being in the fight of their life? He should be look at with admiration. That is how I look at him.

I will never understand it. I want to scream at them. I want to tell them to walk a mile in his shoes. That this man is still as beautiful as he ever was, if not more beautiful.

I have yet to say anything to someone who is staring at him but I cannot promise that one of these days I won't just lose it and ask someone exactly what they are looking at.

I ranted to and I am sorry but I want you to know you are not alone and I am glad to know that I am not alone in my feelings. Sometimes I feel like I am the most alone person on the planet but then I come here and I read and I realize I am not alone.

Just keep on doing what your doing and take care of your wife. You sound like you are a blessing in her life and I am sure she knows that. I have found through these past three years that people for the most part are very good. They are caring and supportive. I hold on to that and I hold on to the fact that this man that they are all staring at is still here walking beside me for people to stare at and if we have to endure people rudeness then so be it. I am the lucky one, I am the one with this beautiful gift walking beside me and will cherish all the time we get to walk side by side.

Thanks for listening. Prayers to you and your wife.

and STOP STARING! IT'S RUDE!

Sandra B in Oregon
Posts: 1
Joined: Jul 2012

My mom is 70 years old and she's recovering from a neck dissection (July 18th, 2012) with a free flap. The free flap was created out of tissue harvested from her left forearm and her left forearm was patched up with a skin graft from her left thigh.
Needless to say, she has a lot of scars (they had to break her lower jaw (mandible) bone in half to get to her cancer)).

When we are in public I escort her, with the crook of my arm out. She gently grasps hold of my outstretched arm, so I steady her, if need be, but I also shield her from any gawkers. I will stare them down before there is a problem.
Meaning I try and engage eye contact with people before they have a chance to look at my mom, and I try and hold their gaze.
It's a little Alpha-dog type behavior, but I don't care; it works ;)
Hope this helps.
sb

Noellesmom
Posts: 1312
Joined: Aug 2010

I find this behavior also helps with stubborn hospital staff, arrogant doctors and nurses and other folks who simply don't care.

Couchie
Posts: 24
Joined: Nov 2010

I do the same thing. My partner had no hair, had to use a walker and wear a mask over their face. They wanted to go for a walk in the park. People would stare, children would point, some parents grabbed their children and moved them to the other side of the park. When people would stare, I'd tilt my head to the side and stare right through them until they got uncomfortable enough to look away. We can laugh about it now, but most of the time the trips to the park would be cut short by sobbing.

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