June 11, 2015

Never Lose Hope

Back in February, when Frank and I returned from Mexico, I learned that my mom signed up for hospice while we were gone. I was completely caught off guard. I knew the day would come, I figured we'd take time to meet with hospices and find the one that was the best fit. I never expected it to be a done deal. I had concerns, but I knew my mom needed more help. After talking with the hospice nurse, and gaining a better understanding many of my concerns were alleviated. My mom could opt out at any time, but in the meantime a nurse would attend to her once a week, she'd receive help from a CNA and her drugs would be covered. It could be a real blessing, I felt it was best we try it out and see how it went.

When hospice is mentioned most people associate it with death. It does provide end of life care, but they also do much more. It is a service that is underutilized and misunderstood. Most wish they would've sought it out sooner. Thankfully, my mom's primary physician recognized the need and initiated it. You do need a diagnoses of a terminal illness to qualify. My mom had real difficulty with "six months to live" in black and white. Who wouldn't? The service provides palliative care for those who are no longer seeking treatment for their disease. The focus is to maintain the best quality of life. In my mom's case, this meant allowing her to live alone and be independent as long as possible. These are her wishes, and I will stand by them. In addition to hospice home care, there is an inpatient facility, which also provides respite care, and there is continuous care during a crisis.

Home care provides my mom with all the medical equipment she needs, oxygen, breathing machine, walker, wheelchair, etc. With hospice we've been able to get more than one O2 concentrator when requests were previously denied. Which is a huge deal! They are awkward and too heavy to be lugging from room to room, not to mention between my house in Vegas and hers in Pahrump. All medicines directly related to her lung cancer and lung disease (COPD) are covered and delivered directly to her home. This is a huge convenience since the nearest pharmacy is miles from her home. She has a nurse that visits with her once a week. She can obtain medical assistance 24/7. This was huge for me. Living in Pahrump, your access to care is very limited. Urgent care keeps banker's hours, doctor's take months to see and the hospital does not provide specialty care. They often transport patients to Las Vegas by air or ambulance for necessary attention. It takes an hour for me to get to my mom, and another hour to get her to a Vegas hospital. Those two hours make me extremely nervous, so anytime she wasn't doing well, I'd make her stay in Vegas so we were close to the hospital and her team of doctors. This would keep her from her three dogs and the comforts of home, which would only add to her stress. Having help a phone call away was a huge relief. It's not perfect, we do get the "can it wait til morning? Because no one in Pahrump is on call" excuse. Pharmacy deliveries only happen in the afternoon so if the order is wrong, a day is lost before she gets the medicines she needs. But it's better than nothing.

My mom did really well the first few months on hospice, she was getting the medicines she needed and she was feeling significantly better. When Amy and the kids came to visit in April, she was more active, but the lack of rest took a toll on her. Combined with spring winds and poor air quality, her health declined over the month of April. She was up all night and sleeping during the day, her pill schedule was out of whack and it seemed she was under/over medicating. To make matters worse her blood sugar has been out of control and she's been fighting a slew of side effects from the Prednisone. Which culminated into a really rough weekend for my brother while I was in Texas. Thank goodness, he was there for her, though. Mother's Day she was completely out of it, howling in pain, etc. Today, she's able to recall very little from that day. It was scary. Monday, hospice arranged for her to be admitted into inpatient care. They will provide transportation, but it would have taken hours so my brother drove her to the facility. This mishap was disappointing, because when she started hospice I was told if there was ever an issue she would be immediately transported and I could meet them at the facility which is in Las Vegas, about ten minutes from my home. At least, we were testing the water before it was a crisis.

The inpatient facility is meant to feel like home. You can bring in food and drink. Even Tuco, my brother's dog came for visits. My mom could have even had her shepards visit. My mom spent five days in their care, while they tweaked her medicines. She was doing exceptionally better when she left. All the staff is wonderful. They allow patients to rest, they are not constantly poking and prodding like in a typical hospital setting. They don't keep a tight schedule for vitals and such, so it took a little adjusting to learn their way of doing things. My mom preferred it greatly over her hospital stays. She went back home with her new medicines and she's done better the past three weeks. However, she since found a growth in her groin. It's the same place that was biopsied twice, but we never got answers due to a poor sample. Given her recent decline and symptoms, she decided to have another PET scan. She had to stop hospice to proceed with the test and meet with her oncologist.

Tuesday, she had the scan and yesterday we met with her doctor. My mom was a wreck while we waited for results. She anticipated the worst, I expected little change since January, but to both of our surprise she got the most amazing news - THERE IS NO EVIDENCE OF METASTATIC DISEASE - Against all odds, her lung cancer is in remission. It took hours for it to sink in. But once my mom finally believed it to be true, it was such a relief. My hope is that my mom will be able to resume hospice and continue the care she needs. So, she is able to best enjoy whatever time she has left, whether it is two months, two years or two decades.

Cancer has taken so much from our family, but it's also gifted us with important lessons. Life is simply too short; so live with a forgiving heart, never lose hope and always love like there is no tomorrow. I know what a gift this is, my heartaches for those who aren't so lucky. I would never wish these challenges on anyone, but when you are faced with such struggles there are people and services to lend a hand. You are never alone.


Dan.. said...

I read your Blog once in a while, and enjoy what you have to say, Hurray for the good news about your mom, hopefully you have many more years, and she continues to gain strength..

Kellee said...

I appreciate the kind words, Dan. Thanks for reading.