WOW! You certainly have your hands full. Thank you for taking the time to explain everything in such detail. It may not seem important but when asking questions we need to know the whole story to be able to provide effective replies.

From an outsiders view, I see many problems going on. First, you are stuck in the middle and your mother has come to depend on you. Ive seen many children tend to their parents affairs when the parent becomes seriously ill. Unless the parent has ongoing serious medical issues, usually the child takes care of the parents business for only a couple weeks, maybe months but not forever. Her husband should be the one picking up the slack and taking care of all these things. In my opinion, since he lives there he should be her caregiver which includes all the billing and insurance tasks as well.

I think your mother needs a therapist or other mental health professional. Its nothing to be ashamed of! Many cancer patients need a professional to help them get past whats happened to them. Many facilities offer a special person to help cancer patients. She would also benefit from interacting with other cancer patients in a support group. I kinda expect to hear your mother will refuse due to her speech. That is NOT a reason to isolate yourself from society!!!. Its just like the stages of grief, dealing with a cancer diagnosis and all it entails takes its toll and eventually the patient will find they can accept whats happened. Depression is quite common with OC patients and their caregivers too. Its sounds like your mother is depressed and very lonely which can be a terrible thing for the elderly. Many patients get angry and lash out at the closest person. Their anger is really at themselves for getting sick which usually isnt anything anyone has done purposely, people just get sick. Its unfair to you for her to get disappointed when you must attend to your own life and children. There's only so much of you to go around. Since your mother can Skype then she should be able to use an app called Speak It. She can type and it will say whatever she types. This can be used to make phone calls. I had a close friend who used it successfully for years and loved it. I knew her so well often I knew what she was going to say before she finished typing and clicked for the app to say the words. Im sure your mother could easily use this to start doing more of her own business. It would also help her to communicate better with her husband. Sometimes people need to step up and make difficult decisions. If your mother is really that miserable where she is then maybe she would be happier making alternative life choices. Somehow she needs to stand on her own two feet and stop trying to guilt you into doing more and more for her. As an adult with your own family its unfair to expect so much of your time every day. Ive always thought... everyone needs a reason to get up in the morning. Maybe its time for you to not be quite so available and let your mother rediscover what makes her happy and whats her reason to get up in the morning.

Feeling sorry for yourself can be debilitating and make patients miserable. Its completely normal for patients to focus on all the things that are now different and things that make her life harder. This can easily be a source of negativity that spreads and can bring even the sunniest person down. Im sure your mother has many things she can still do very well. Eating is a big social event in most peoples lives. But, not everyone is able to eat normally. I know many OC survivors who live dependent upon a feeding tube for all of their intake. This is a huge hurdle to overcome. It takes lots of time and patients must always pay attention to how much they take in. Patients also often have different issues with their feeding tubes. Many clog or cause nausea which are things that can usually be easily fixed. This is another reason why its so important for her to meet other patients, especially people who have feeding tubes. That could be something they can bond over. I hope that one day your mother will be able to figure out something positive she can do to discover a new routine.

Over the years Ive had plenty of my own struggles. I use a feeding tube for the majority of my daily intake so I know partly how your mother feels about not being able to eat like she used to. One thing Ive learned that has helped me tremendously... by helping others it also helps me. I never would have believed it if I hadnt experienced it myself. The Oral Cancer Foundation's founder Brian Hill did something for me that at the time I didnt quite understand. Years later, I can see by Brian asking me to help him monitor this online support forum, he actually was giving me my life back. When I got sick for the third time in 3 years and required a life altering surgery to remove half of my jaw, my chances of survival were slim. I credit Brian and the kind members of this forum in helping me to see I couldnt just quit until I had at least attempted to survive. I went thru a heck of a hard time and suffered more than I thought anyone could endure. It took me a very long time to get back on my feet. I was no longer able to do my former profession, I wasnt physically able to do much of anything I had done before. I lost my reason to get up in the morning. But one thing I still did every single day... I always checked the forum and said hello to new members. After being home alone for almost a year recovering, I didnt go out much anymore. Being disfigured from having my jaw removed, complications from the surgery, and many after effects including mobility issues kept me close to home. Plus everywhere I went people stared and whispered behind my back. Brian showed me such kindness and compassion by asking me for a favor, to help him with this forum. After helping thousands of people for years, Brian knew all too well that by helping others it also helped him to mentally better manage his side effects. If your mother is well enough maybe she could volunteer to help other cancer patients. Im also a volunteer driver for the American Cancer Society (when I have time) driving cancer patients to their appointments. Thats a great way to help her get back in touch with others. To me, its always a good feeling when I know Ive helped someone who needed a hand, provided info, or let someone in despair lean on me.

I hope some of these ideas can help your mom to adjust to her "new normal".



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile