Today's meeting was about Gary's decline. It was all business, all non-empathetic, and all about cutting back on Gary's tried and true cognitive medication regimen that it took us 2 years to balance. Now that he's in a facility, he's become the victim of Medicare's regulations for "gradual dose reductions". He is in full decline and likely won't outlive the completion of these experiments. Hospice has been my ally in keeping him on these meds so far, for his cognitive comfort and stability. This Nurse Practitioner is now going to mix it all up and play god with Gary's cognition. Gary is on Namenda XR 28mg, and 13.3mg Exelon patches. They are starting with his Namenda XR down to Namenda IR 20mg (10mg 2x/day) for two weeks. That change was going to have to occur anyway, because the manufacturer has his Namenda XR on backorder right now. He will be taken down to 10mg (5mg 2x/day) for two weeks, then completely off for two weeks.
I'm hoping to find a way to leave his Exelon alone. He's already had that dose dropped in the past, and it turns him into a vegetable. We have a potential 6 weeks before the Exelon reduction would have to begin...it buys me time to find a way to convince them to keep him steady and let him pass away comfortably. I also know I've read, and need to find, the clinical studies that show when you drop the Exelon, if you find the reaction to be adverse and you re-start it, most times the patient never returns to their previous level of cognition. Gary isn't strong enough to get through that at this late-stage, and he is SO very sensitive to medication changes!
I feel it is no coincidence that just yesterday, the nurses were having difficulty figuring out his CADD pump to dose him with a boost of Fentanyl, and he clearly stated to me and my girls, "No Experimentation". He has obviously overheard this Nurse Practitioner, the Nurse Manager, Director of Nursing, and potentially his Hospice Nurse, discussing the dose potential dose reductions. He hated having his medications changed.
He's declining because of the dementia! There have been no medication changes except for pain management increases during his entire decline. LEAVE HIM ALONE!
Aug 25, 2014
Aug 24, 2014
How CMS Regulations May Cause Needless Suffering
I'm going to get on my soapbox here, saying I'm going to be actively involved in Lewy Body support groups online, and also become an advocate and volunteer for Lewy Body Dementia Association after my husband passes. I am driven...
There is so much to be done out there...including advocating for changes in Medicare's blanket CMS regulations for facility and Hospice end-of-life dementia "gradual dose reductions" that have the potential to put patients on needless rollercoasters of medication changes at their most fragile time, even though that medication has been proven to work for them on an individual basis. I firmly believe in cognitive comfort care in addition to physical comfort.
As my end-stage husband said in his first lucid moment in 7 days today, "No experimentation." As if he had a premonition that this week the facility will be forced to disregard any lucid moments and potentially take them away through dose reductions of his cognitive meds, though they are working. He's not even on any antipsychotics! I say, leave him alone and let him continue his dying process peacefully without the looming rollercoaster stress the medication reductions are going to cause him. We worked and have been very successful at having him stable, but the regulations treat people like a number, and not on a case-by-case basis, so it causes needless cognitive suffering. AND, Sometimes the regulations actually cause overmedication, when you have to give your loved one a drug at their anxious time of day to prevent them from sliding out of bed undetected because bed pads and clip alarms are against the rules, regardless of the fact that your loved one can't call out for help or press a call button.
The whole system is completely disjointed and over-regulated because of bad facilities and the poor judgment of bad doctors and nurses--not taking good facilities and staff, or the needs of the individual into account. Also, I feel a good preventative effort to this issue would be to better education doctors about how Hospice works, to build awareness of how medications they prescribe that aren't "designed" for Lewy Body can ultimately end up backfiring at end of life for their patients when they have to be ripped away due to the rules.
There is so much to be done out there...including advocating for changes in Medicare's blanket CMS regulations for facility and Hospice end-of-life dementia "gradual dose reductions" that have the potential to put patients on needless rollercoasters of medication changes at their most fragile time, even though that medication has been proven to work for them on an individual basis. I firmly believe in cognitive comfort care in addition to physical comfort.
As my end-stage husband said in his first lucid moment in 7 days today, "No experimentation." As if he had a premonition that this week the facility will be forced to disregard any lucid moments and potentially take them away through dose reductions of his cognitive meds, though they are working. He's not even on any antipsychotics! I say, leave him alone and let him continue his dying process peacefully without the looming rollercoaster stress the medication reductions are going to cause him. We worked and have been very successful at having him stable, but the regulations treat people like a number, and not on a case-by-case basis, so it causes needless cognitive suffering. AND, Sometimes the regulations actually cause overmedication, when you have to give your loved one a drug at their anxious time of day to prevent them from sliding out of bed undetected because bed pads and clip alarms are against the rules, regardless of the fact that your loved one can't call out for help or press a call button.
The whole system is completely disjointed and over-regulated because of bad facilities and the poor judgment of bad doctors and nurses--not taking good facilities and staff, or the needs of the individual into account. Also, I feel a good preventative effort to this issue would be to better education doctors about how Hospice works, to build awareness of how medications they prescribe that aren't "designed" for Lewy Body can ultimately end up backfiring at end of life for their patients when they have to be ripped away due to the rules.
Aug 22, 2014
Facility/Hospice Frustrations
I'm really feeling vulnerable today and I'm so frustrated. For many reasons: emotions of seeing daily end-stage deterioration, caregiver stress-relief, the previous time management burden of running a mini-skilled nursing facility at home with my daughters...we moved my husband to a nursing facility on June 30 after 9 months of caring for him at home in a fully bedridden state. Since he's been in the facility, pain management that should be so simple and just empathetically understood, has become a battle of wills and philosophies buried under rules and regulations, rather than about Gary's comfort.
The longer he is there, the more I get the impression I am perceived as the emotionally compromised wife, instead of a caring advocate. I am spoken to condescendingly when I ask for boluses on his subcutaneous CADD pump, or ask to keep the pump out of his bed where he could reach and compromise it--looked at like I'm being unreasonable that the pump shouldn't be in bed with him, and that his partial bed rails should be kept up for safety.
Today I'm being asked to participate in a team meeting, in 3 days, in the Administrator's office, and I have no idea what it's about. I've been waiting on a call from my Hospice nurse since yesterday, which would even give me some clue about why the meeting has been called so I can plan to be absent from my full-time job to attend.
This may not be the case, but there are many times I can't help but feel the facility staff and Hospice providers might be whispering about what I may not understand behind my back. What they fail to understand is that we've been dealing with this disease and decline for over 2.5 years, through multiple facilities and settings, so have a complete understanding. We aren't rookies, and they just don't give us credit for having a full understanding of all the cards on the table. The aggravation of all this gives me knots in my stomach and heartburn sometimes!
The longer he is there, the more I get the impression I am perceived as the emotionally compromised wife, instead of a caring advocate. I am spoken to condescendingly when I ask for boluses on his subcutaneous CADD pump, or ask to keep the pump out of his bed where he could reach and compromise it--looked at like I'm being unreasonable that the pump shouldn't be in bed with him, and that his partial bed rails should be kept up for safety.
Today I'm being asked to participate in a team meeting, in 3 days, in the Administrator's office, and I have no idea what it's about. I've been waiting on a call from my Hospice nurse since yesterday, which would even give me some clue about why the meeting has been called so I can plan to be absent from my full-time job to attend.
This may not be the case, but there are many times I can't help but feel the facility staff and Hospice providers might be whispering about what I may not understand behind my back. What they fail to understand is that we've been dealing with this disease and decline for over 2.5 years, through multiple facilities and settings, so have a complete understanding. We aren't rookies, and they just don't give us credit for having a full understanding of all the cards on the table. The aggravation of all this gives me knots in my stomach and heartburn sometimes!
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