Stories from Caregivers: Christine from PENNSYLVANIA
PA
Christine
FROM PENNSYLVANIA
Noticed a change in my mother's voice Thanksgiving 2013. After much pressuring, took her to a doctor and found it was laryngeal cancer. First doctor advised voice box removal or call Dr K and gave her 3-6 months. I took her for several other opinions- to oncologists, ENTs (ear, nose, throat), pulmonologists, radiologists---no medical advocate except for me bouncing around like a medical pinball hoping to find the right combination to help her. She had a biopsy, the tumor on her vocal cord was debulked and a tracheotomy. She experienced hospital psychosis and didn't know me for a few weeks. I visited her at the hospital every day after work and weekends. It was heartbreaking when she asked if I knew her and did I know her daughter. Did I know if her daughter would come to visit her soon? I would bring pictures every day of us together, family, friends, even my dachshund, Molly. She knew Molly ! She started to "come back" to be herself again in rehab. She had two quad shots of Palliative radiation but wouldn't go further. The radiologist said it would give us more time together but it was not a cure. She's been living with me since summer of 2014...yes, she's still with us. I hired nurses since Medicare doesn't offer skilled care for trach patients (she would need suctioning, the cannula changed daily and trach changed monthly). From July to December 23, the nursing cost was over $16,000 but they were worth every penny- supportive, professional and gave care not just to mom but made sure my husband and I were ok handing the situation. I took family leave from my job for the 12 weeks allowed- January through March. That was tough since your employer holds your job open for your return but no salary while you're out. I took over the nursing here at home. Her cancer has been "quiet" but dementia has begun. Our conversations are repetitious like "who's on first" (Abbot & Costello). At the end of March this year, I resigned from my job to care for her. I don't know how long she has but she's defied the odds so far and I want to be with her for as long as we can. I'm grateful for the ACT caucus and hope that there might be more help for families that need both financial and emotional support. Blogs from other caregivers helped me because no one knows what to expect or what they can handle ...until you do. You take it a day at a time---talk to friends---take time out for yourself and ask God for patience and strength to do the best you can. I'm grateful for everything & everyone in my life!
