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...
May 20, 2014
May 20 - Scary Day
HARSH shape today. Last night Gary was up late enjoying an ice cream
sandwich and chatting. This morning, extremely severe rigidity and can't
respond at all, and can hardly open his eyes, though we know he's
awake. I think he's paying for 2 10-12 hour days of awareness in a row,
but his respirations have dropped. Pulse and BP seem to be hanging in.
Again, nearly 70 lb. weight loss since November, completely bedridden.
Up til 2 days ago, sleeping 20-23 hours a day, then the 2 day surge, and
now this, and we're not able to get him to even try to swallow any
medication at all today. No
medication changes caused this. I am firm on that. He is home with Hospice assistance, with
me, our adult daughters and one excellent regular caregiver who we
consider part of our family now.Can never tell...so devastated this morning,
but he seems stable for the moment. Just never know what to think and
the uncertainty is terrifying!
May 9, 2014
Advocate Strongly for Hospice Coverage of Diagnosis-Related Medications
I first saw news of new Medicare Guidelines (click here) on Twitter on May 1, and it will affect many Medicare patients on Hospice. Time to plan ahead before your next refills for your non-Hospice covered medications.
To get Gary's medications secured, I contacted our Social Worker and Case Manager challenging them to explain why his 13.3mg Exelon Patch and Namenda XR haven't been covered under Hospice (other than the high cost to them). When they didn't respond with help or any answers, I wrote an email directly to the CEO of our non-profit Hospice, included below. Two days later, I have my answer--they will be covered, and should have been from Day 1 of this Hospice round because they are related to his terminal diagnosis. Hospice will be reimbursing me for 5 months of co-pays ($90 per month), because of their error.
No one should have to jump through these hoops to get answers, and have access to critical medications.
This was my e-mail to her:
"I need to get these two hospice diagnosis-related medications covered by you ASAP, before Medicare forces me into private pay for them and puts a huge, undue, additional financial burden on me, his primary caregiver, who is also juggling a full time job through losing my husband of 27 years. I understand it is "standard practice" in Hospice to discontinue cognitive meds such as Namenda XR and 13.3mg Exelon Patch in favor of anti-psychotics for dementia patients, but this can't be done for Gary. With Lewy Body Dementia, and in Gary in particular, antipsychotics cause bad reactions. Gary is in a very fragile state and doesn't need to be put through the trial of discontinuing medications that will make him completely unresponsive. We have small windows of time where he is very cognitively aware, and last night I was able to capture 5 minutes of video that prove these medications are helping him dramatically, even if only for brief windows of time, where he can still communicate with us, and actually still has some incredible hand-eye coordination. I've witnessed him several times since diagnosis when doctors have taken these medications away...and he becomes a complete, unresponsive vegetable...and that was when he was in much better condition. He and we have been through enough in the past 2.5 years with his decline and we want to keep the opportunity to communicate with him and have him continue to participate in our lives at home as much as possible until the end. He is already completely bedridden and sleeps most of his days, but every few days, we are blessed with a wonderful couple hours as I was able to record briefly last night. He then took a nap and was out again, as your nurses and doctors seem him most often. We would not get those moments without these medications. Gary's story and struggle are very profound as he has survived a previous round of Hospice last spring/summer after a pelvic/hip fracture that should have killed him. His 1/year anniversary of that fall was just at the end of March and he is still here on borrowed time.
Please help me with this. No one else has dealt with it, and it is so very, very important for the comfort of Gary's final weeks with us, with Medicare closing yet another door on terminal patients. He continues to lose weight and have multiple other complications, including recent, undiagnosed, random fevers. Please help us to keep him emotionally and cognitively comfortable.
Thank you very much for your assistance, and again, I apologize for coming directly to you. but I wouldn't do so if I didn't feel it was warranted. I'm not trying to get anyone in trouble, just trying to continue to advocate for my husband's care and make sure he has the best end-of-life quality of care possible, without it breaking my family."
To get Gary's medications secured, I contacted our Social Worker and Case Manager challenging them to explain why his 13.3mg Exelon Patch and Namenda XR haven't been covered under Hospice (other than the high cost to them). When they didn't respond with help or any answers, I wrote an email directly to the CEO of our non-profit Hospice, included below. Two days later, I have my answer--they will be covered, and should have been from Day 1 of this Hospice round because they are related to his terminal diagnosis. Hospice will be reimbursing me for 5 months of co-pays ($90 per month), because of their error.
No one should have to jump through these hoops to get answers, and have access to critical medications.
This was my e-mail to her:
"I need to get these two hospice diagnosis-related medications covered by you ASAP, before Medicare forces me into private pay for them and puts a huge, undue, additional financial burden on me, his primary caregiver, who is also juggling a full time job through losing my husband of 27 years. I understand it is "standard practice" in Hospice to discontinue cognitive meds such as Namenda XR and 13.3mg Exelon Patch in favor of anti-psychotics for dementia patients, but this can't be done for Gary. With Lewy Body Dementia, and in Gary in particular, antipsychotics cause bad reactions. Gary is in a very fragile state and doesn't need to be put through the trial of discontinuing medications that will make him completely unresponsive. We have small windows of time where he is very cognitively aware, and last night I was able to capture 5 minutes of video that prove these medications are helping him dramatically, even if only for brief windows of time, where he can still communicate with us, and actually still has some incredible hand-eye coordination. I've witnessed him several times since diagnosis when doctors have taken these medications away...and he becomes a complete, unresponsive vegetable...and that was when he was in much better condition. He and we have been through enough in the past 2.5 years with his decline and we want to keep the opportunity to communicate with him and have him continue to participate in our lives at home as much as possible until the end. He is already completely bedridden and sleeps most of his days, but every few days, we are blessed with a wonderful couple hours as I was able to record briefly last night. He then took a nap and was out again, as your nurses and doctors seem him most often. We would not get those moments without these medications. Gary's story and struggle are very profound as he has survived a previous round of Hospice last spring/summer after a pelvic/hip fracture that should have killed him. His 1/year anniversary of that fall was just at the end of March and he is still here on borrowed time.
Please help me with this. No one else has dealt with it, and it is so very, very important for the comfort of Gary's final weeks with us, with Medicare closing yet another door on terminal patients. He continues to lose weight and have multiple other complications, including recent, undiagnosed, random fevers. Please help us to keep him emotionally and cognitively comfortable.
Thank you very much for your assistance, and again, I apologize for coming directly to you. but I wouldn't do so if I didn't feel it was warranted. I'm not trying to get anyone in trouble, just trying to continue to advocate for my husband's care and make sure he has the best end-of-life quality of care possible, without it breaking my family."
May 3, 2014
May 3 - Feverish/Confused Day
Gary is running another mystery fever today. Still isn't presenting on his forehead and barely on his temple. With his poor circulation and extreme weight loss from his decline, no part of him is the same temperature simultaneously anymore. He's not hungry, though I did get a nutritional drink into him, along with applesauce for his meds, plus his prune juice cocktail and some cranberry water.
He's staring a lot today and having a hard time responding. Picks at his sheets a lot and has repeated this morning, again, that he needs to "get up and get out of here", though he hasn't walked, even with assistance, since mid-November.
Gary continued to be quiet and in a fitful sleep for the rest of the day. It is so frightening to see such a strong man look and behave so weak and be in such a fragile state.
He's staring a lot today and having a hard time responding. Picks at his sheets a lot and has repeated this morning, again, that he needs to "get up and get out of here", though he hasn't walked, even with assistance, since mid-November.
Gary continued to be quiet and in a fitful sleep for the rest of the day. It is so frightening to see such a strong man look and behave so weak and be in such a fragile state.
May 2, 2014
May 2 - Pain Management
About 3 months ago Gary was put on a Fentanyl patch at 25 mcg, with liquid morphine available for breakthrough pain. When he needed the morphine often, Hospice then moved him to a subcutaneous Fentanyl pump, which allowed much better absorption with his weight loss, and also allowed for better dose management. They actually started him at 50mcg and it had the effect of lethargy and unresponsiveness, knocking him down each time the pump dosed him. They dropped it to 37.5mcg which worked well for the past couple months, then in the last 3 weeks Gary's pain his increased tremendously with the deterioration of his left arm and leg, so it's been stepped up to 47.5, then 60mcg. The pump also allows for "bolus" doses for breakthrough pain at 20mcg every 15 minutes as needed.
Medication adjustments, including pain meds, have put Gary through episodes of unresponsiveness and for the most part, he has returned from them, though not always up to his previous level. Any medication changes can cause drastic differences in mood, lucidity and appetite for Gary. Today, Hospice wanted to increase Gary from his 60mcg dose to 90. I pushed back for 75, so we can see how he responds to less, then step it up, rather than knock him down too hard too fast. In addition, the bolus doses were increased to 30mcg every 15 minutes.
Medication adjustments, including pain meds, have put Gary through episodes of unresponsiveness and for the most part, he has returned from them, though not always up to his previous level. Any medication changes can cause drastic differences in mood, lucidity and appetite for Gary. Today, Hospice wanted to increase Gary from his 60mcg dose to 90. I pushed back for 75, so we can see how he responds to less, then step it up, rather than knock him down too hard too fast. In addition, the bolus doses were increased to 30mcg every 15 minutes.
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