Hello all, I am needing some guidance and support in trying to care for my mom, age 63, who lives in FL. First a little background...
This past June/July my mom was diagnosed with Stage 4 SCC and had a total glossectomy, pectoral chest muscle flap replacement of the tongue, lymph node removal in several spots on the right side of the neck and had a PEG tube placed. It was an extensive 7 weeks that she spent in the hospital and the in-hospital rehab facility. I live in Maryland and flew down to be with her for the surgery and the 1st month post-surgery. We went through a lot in that time and had some very dark days. I thought the rehab facility was really a blessing with its care and attention to everything she had going on. (My mother's insurance does not cover a lot as we are finding out now that she is home and I feel lucky to have had that opportunity for her.) Since mid-August, I have been at home with my 2 young kids and doing all that I can virtually to help her. My husband's job makes him travel a lot so I am trying to do the best via Skype, text messages, emails, and phone calls but I know it's not the same as being there with her. I wish that I could have her move here but she has state funded insurance and moving would take her away from what resources she does have and all of her doctors. All of our family is spread out across the eastern seaboard. There is no family nearby and my mom doesn't have many friends. She lives with my stepdad but their relationship is less than ideal to put it nicely.
My mom has told me several times that if she knew what her life would be like now...she would have chosen differently. The inability to talk and have people understand her really takes its toll on her. The fact that she has a PEG tube and doesn't eat like she used to also sends her into some dark moments. We have laughed, cried, yelled and discussed so many things yet in her core she isn't able to accept what has happened to her much less make strides to heal. She also tells me she doesn't remember anything from the hospital so the time I was down there is very blurry to her.
My mom used to deal with life by drinking. And she did so right up to the morning of her surgery. Without the alcohol, she is now so much more aware and present in her life but....there is so much she never saw because she was under the influence so long. She now wants to change so many things about her life but doesn't feel like she has any power or control. She is so angry at my stepdad because he doesn't understand her affected speech. She is bothered by EVERYTHING that he does and he is the only person that is there to assist.
I have called her doctors and insurance company to ensure that her health questions & concerns are addressed, I have helped in dealing with issues as they come up, helped her create a list of questions for her doctors appointments, sat with her on the phone and Skype for countless hours during daily tasks, hygiene etc. I am trying to do everything I can to support her but at the end of the day...it doesn't feel like it enough. She gets disappointed if I have to get off Skype or do something with the kids. We are spending 4-6 hours some days on Skype and I am trying to do all that I can for her yet my family here too.
What am I missing? What could I be doing better? What do I continue to say? What shouldn't I say?
I have come from the 'we are lucky to be alive', 'I feel so blessed that you are here', 'some people can't talk at all so I am thankful you have some communication', 'it's ok to feel angry', 'you have an army behind you'. I have even tried to get her to post on this site so that she could hear others' stories. If someone's story isn't exactly like hers, she cries. She is alone and angry and feels like there is no one there for her.
When it comes down to it, I am lost on how to get help her arrive to any level of acceptance.
