Feeling pushed out

Sunny874

My spouse was recently diagnosed with stage 3 cancer. It has been an emotional rollercoaster, because the diagnosis was so unexpected. He went to the ER for breathing troubles, and we thought he might have pneumonia but it turned out to be much more serious. He had already been to several doctors who ignored his concerns and tried to tell him it was allergies or a bad cold... A simple XRay at the ER confirmed he had a large mass that was later confirmed to be Lymphoma.

 

Countless people have reached out to him for support, and he has a pretty good circle of people around him which I am very thankful for. That being said, with everyone else being so present, I sometimes feel left out... every time I try to do something for him, there is someone else right next to me ready to do it for him already. I find this frustrating because I sometimes feel like I am not even needed and that it doesn't matter if I am there at all... we haven't been alone since the diagnosis, and I really just want everyone to leave so we can get our house back. I know people are just trying to be helpful, but I feel so smothered and just want some space to cry for 5 minutes without having his mother yell up the stairs for me to come down. 

 

Aside from that, I am sad that literally nobody besides my own mother has reached out to me to ask how I am coping with this, or even just to offer condolences. When people stop by, it is like I am completely invisible unless they need me to get something for them. 

 

Has anyone else ever felt this way? I am new to this, and hoping it will pass. I feel very selfish for not wanting his family to stay with us anymore, I know they just want to support him, but I really wish that I could be the one to take care of him.

 

 

 

GingerMay

Feeling ignored and invisible

Hi Sunny - My situation as caregiver to my husband is not exactly like yours but it is similar in that I feel invisible. When your spouse gets a cancer diagnosis, it impacts you too. Actually your whole world changes and nobody seems to notice. I know we feel selfish thinking of ourselves when it is our loved one going through this, but you do matter too.    

It is alright to want 5 minutes to yourself to deal with your own grief, cry or just sit. You need that. What does your husband seem to want in regard to others being around? He may not be able to express it in words, but how does he react? I think it is important to have a home environment that support him and you physically, emotionally and mentally and is a place for healing.  Perhpas think about what boundaries you feel would be best to provide that. Telling family or friends to visit between certain hours because you both need rest in the other hours is perfectly alright. If they want to help, that is great but maybe give them specific things they can do so they feel useful. If they ask, perhaps suggest something that will take a task off your schedule such as having a meal delivered one night or stopping by to walk the dog. Some things like that are more helpful to you than decending on your home. They mean well, and it is a blessing to have people who care, but perhaps guiding them to specific things within your boundaries may give you both some peace. 

a_oaklee

Hi Sunny.  I dont think I can

Hi Sunny.  I dont think I can add much to Gingermays response, except to say I am another person who feels I am in the shadows.  You arent alone in having the feelings like you are invisible and dont matter anymore.

The most memorable example I can share is when I go see our family doctor for my own appointment.  He asks all about my husband and then starts to leave the room.  I have had to say "wait, im here for me".    

I know your husbands diagnosis is recent, but you do need to assess if he wants everyone to go home.  Maybe he doesnt know how to speak up with all of them, and you will have to do it.

Ive read where other caregiver spouses post on some private website updates, in order to limit phone calls.  They also set up visiting hours.  I think we all change when dealing with a shock like this, but you may need to be more bold with all the lovely well wishers.

Ive been handling being invisible for 8 years now.  Over time, I have found that Ive wanted to make new friends who know nothing of my husbands health.  It works for me because I sometimes need my own space.    In time, you can gently tell your immediate family what you feel and need from them.

I hope you come back to this post and keep sharing.  Honestly, us caregiver spouses need to support eachother.