It sounds horrible, doesn't it? Hoping your loved one will continue to
qualify for hospice, when you should be hoping for recovery or some type
of improvement? But the honest truth is hospice care and the 24/7
availability of doctors is what allows us to care for Gary at home, and it's what's keeping him comfortable with well-managed pain, and alive. He requires a medical transport to be moved to care, unless it can be provided at home. He's too fragile and has lost too much weight to withstand
transfers in and out of our Jeep SUV or a normal car. Their care is what
allows us to manage Gary's daily changes, manage his pain, and they
provide his hospital bed, air mattress for bed sore prevention, oxygen
machine with humidifier, all his medications and incontinence supplies. Last summer when he was kicked off hospice, we had to fight for just oxygen and a hospital bed, and that was before he was 100% bedridden and had lost almost 1/2 his body weight. Without those key elements being covered, we would be forced to institutionalize him again, and his condition would decline because Nevada skilled nursing facilities don't provide air mattresses to prevent bed sores. He was nearly killed by a nursing home in April 2013 by their medication errors, lack of knowledge with his Lewy Body medication sensitivity, and their incompetence with his bladder complications. I can't relive that again, and he wouldn't be likely to survive that again.
Our appointment is at 3 today to meet the Nurse Practitioner, Rose, who will recertify Gary for his 3rd Medicare benefit period on this, his second round of hospice. I have a huge fear (irrational, yet logic-driven) of him being kicked off hospice by Medicare because he's become too stable. This is a reality, no matter how bedridden he is, because our healthcare system has no room for stable patients. You can be in decline and be on hospice, or you can be improving and have home health assistance and care, but you cannot be stable. In stability, you have no support from Medicare. Our Social Worker didn't help my worries at all, this past Saturday, when she told me dementia patients are more and more challenging to recertify for hospice because it is such a gray and slow-progressing disease in comparison to other terminal conditions.
Rose is the one who recertified Gary last time, so she is at least familiar with Gary's previous condition at the beginning of his current benefit period in April. It has been 60 days since she last saw him, so I walk in to meet her after a partial day at work, hopeful she will see as much decline as we believe we have experienced. I came home armed for bear with a list of changes. She had her own list, but she did tell me my list made it easier for her to write up and justify to Medicare. We've seen more weight loss...total tally down about 75 pounds since December 4. His swallowing is getting worse, he is more agitated and harder to reason with in the late afternoon, sometimes picking apart his diaper and incontinence pad as well as stripping the sheets off the bed around him. He's hallucinating more, eating less, drinking less. His teeth are moving. His left side is shrinking faster than his right. He runs random fevers, only on his core. His forehead, temples, arms and legs will all be cool at 97 or 98 and his core will be at nearly 103. She had NONE of this in her notes. She had only documented his weight loss and his left arm as of the time I walked in the door, and she'd been with him for at least 20 minutes.
We passed. He has been recertified with my advocacy. Rose was very helpful, very understanding. She discussed all the changes I presented her, and let me know they helped her tremendously. Told me to continue to document everything I notice so we can help them to help us keep him certified. I will definitely do that. I will not stop. He can't afford to be without their valuable assistance, and neither can I. The supplies alone would run us over $300 a month, not even counting medications. Not having hospice help right now is unimaginable.
The fact that I have to even think about this and live in fear, is inexcusable. Shame on our healthcare system for how we treat our seniors without advocates. He wouldn't be alive if he didn't have me to advocate to save his necessary care and keep it in place, or if he had stayed in that awful facility over a year ago. What do other seniors do? Many lose their hospice care or never even get on it because they don't have a younger spouse who can understand and advocate their way through the system to protect them when they can't defend themselves. For the record, both times we've obtained hospice it has been because I recognized the need and requested evaluations. So very sad and so much extra pressure on me and my family.
But thank goodness we're good for another 60 days...
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