Harsh Realities of our LBD Journey and End of Life

I am cutting to the chase with our reality here. My husband was 15 months of unexplained weight loss that started immediately after a 6-day hospital stay for bronchitis/pre-pneumonia and a UTI. He stopped walking, became bedbound and completely dependent for feeding and his randomly incontinent days within 30 days of that bout. His swallowing was intermittently good/bad and he needed a lot of cueing to keep him safe in that arena. He instinctively used methods his speech therapists had taught him prior to that last hospital stay. Hospice provided his hospital bed with alternating pressure mattress to help prevent bedsores.

As his body slowly stopped absorbing nutrients, he slowly dropped from 186lbs on a 6'2" frame to under 120 at last weigh-in, then ultimately, cardio-respiratory failure. We are fairly certain by the end he was well under 100lbs.

In his last 12 days, his consciousness shut down first, going unresponsive. Within 24 hours of that, his lungs started to fill and hospice used comfort measures. 11 days later, he passed peacefully and pain-free with hospice's help. He was on a subcutaneous fentanyl pain pump for his last 12 months due to chronic pain syndrome (related to an earlier pelvic/hip fracture, cervical spine deterioration and a prior vertebrae fracture in his upper back that were exacerbated by his bedbound state, plus his neurological pain from deterioration).

His death certificate states cardio-respiratory failure due to or caused by Lewy Body Dementia, so I am very thankful his diagnosis is now a part of the statistical record for LBD.

He really did still communicate and have several lucid hours throughout the course of those last 15 months. Up and down on the roller coaster of batches of unresponsive days/hours to very communicative days. The horrifying downside to that is, occasionally his lucidity was at a high enough level that he would actually comprehend his decline and be fully aware of it. When that happened, it was heartbreaking, and completely surreal to us to hear and see the old Gary in his frail, deteriorated body, and yet it was also so wonderful to have him back and aware for those brief moments, before he fell asleep/and or then went back into the full grips of Lewy. The varying lucidity seemed to begin and end with a nap or overnight.

Overall, the hallucinations were less in end stage than early or mid.

Taking all of our story into consideration: When the Cleveland Clinic Neurologist told us his PET scan showed Lewy, and that his whole brain was affected and he would forget how to do everything...we never thought his consciousness would go first. We were thinking his heart would just stop, or his breathing, his swallowing...or some other autonomic function. Instead, it was ultimately his consciousness that went first. The hospice doctor said his body was too young and just didn't know enough to stoop...was continuing along, despite his brain deterioration. He was only 71.

The end was distressing, yet very expected, considering we'd been through so many false alarms over his past 2 years. The hospice nurses and staff kept telling us the signs in his last 2 weeks, but we'd experienced the same signs several times in his last 2 years...so the only way this time was different was after 3-4 days of unresponsiveness, he wasn't even reacting subconsciously to assist us or the staff with his movements. That was our true sign. Took until day 10 for his extremities to begin discoloration due to lack of circulation. To us, it was almost until that discoloration occurred that we ultimately understood this was truly his imminent end of life. unsure emoticon

It's a bittersweet New Year's Eve for our family, saying goodbye to 2015. Though 2016 is a fresh start, we're also leaving a big chapter of our lives behind.

We also lost Gary's good, long-time friend just this month. There would have been no Chris & Gary without Cathyand Larry.

Here's to stepping into new lives and new adventures in 2016; yet continuing to carry forward the love ❤and fond memories of those we've lost.

Thankful for Good Friends Posting Helpful Research - Nov 19

So thankful for good friends who try to encourage, and prompt discussions about needed changes to our Medicare hospice benefits from end-of-life patients. This article was posted on November 17 by the National Hospice and Palliative Care Organization. 

More Research Validates the Benefits of Hospice; What Will It Take to Change End-of-Life Care in America?

This research is promising for cancer patients, however, dementia continues to be a constant challenge with CMS, and hospice follows suit. I wonder how long until lawsuits come up for CMS' discrimination against dementia patients? We are unbelievably constantly at risk of being kicked off because he is dementia even in his current state of being extremely underweight and not improving...but simply being momentarily stable. Also...medications that have been covered for a year, that assist with symptoms directly related to his decline, are suddenly being excluded, meaning we will have to pay for them outside Hospice, on Gary's Medicare Part D drug coverage. Unbelievable.

The other piece that plagues us under the Hospice umbrella is that NO meds have been specifically proven to help for Lewy Body Dementia, so all are at risk of being experimented with for gradual dose reduction at any time, even in his fragile state. There is no hospice exception for these reductions. So unfair. If you can prove they have benefit in your case and you are on hospice, there should be exceptions for hospice patients...instead, reductions must be tried simply because nothing that happened prior to admission in your current facility counts. This is so unjust!

Conundrum of End-of-Life Care in a Skilled Nursing Facility

I have had the opposite ends of both spectrums in my husband's skilled nursing facility for his end of life care. He was first in an acute wing, and they would leave him alone too much, not checking to see if he's awake so he would miss opportunities to be out in his geri chair and would miss potential to eat anything at all on many days. The first 60 days, they had little documentation of lucidity because of this, so they started ripping his cognitive meds away because the nurse practitioner had no record of him being conscious--even though we were reporting any lucidity when we visited, it wasn't being documented.

This week we moved him to the memory care unit (my daughter pulled me out of the weeds and suggested this, and thank goodness she did). However, the first day he spent 9 hours in the geri chair because he had an unusually alert day, and the staff of the new unit didn't know how long he'd been up in the old unit. I've now made a visit or phone call to each shift (except nights) explaining how he's normally been, and how easily he is over-stimulated and they seem to be listening. Problem was...he was so alert the first 3 days, they couldn't imagine him being comatose. Well...yesterday it all caught up to him and he was unrousable from after lunch around 1 to after I left at 7p. They were astonished, but understood now that I was serious about him usually sleeping, unable to be awakened, 20+ hours a day. They did actually go back and read his chart from the other unit, also. They are empathetic to the emotional rollercoaster this surge of activity put us through at that same time they are amazed at his wide-swinging changes in capabilities.

What I have done to try to break through these barriers, if you don't get anywhere with the staff or charge nurses, go to the nurse manager or director of nursing with your concerns. I've gone as far as the administrator. Also request your hospice nurse to educate the charge nurses and nurse manager and/or director of nursing to have them communicate down to the front-line care staff about end-of-life status. The facility's social worker may be able to help you make some headway, also.  

Historically now, throughout my husband's care, the best care he's received has been in assisted living memory care, or in skilled nursing memory care. Special individuals take on memory care...often those who have experienced a loved-one with a memory problem. If members of the medical community don't choose to work with geriatric/dementia care, they are extremely difficult to educate and work with.

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.

16 Months of Upswings and Downturns

Every stage of this disease is temporary. What doesn't work well at one stage may work well the next. Keep an open mind, open heart, and positive attitude and the best alternatives will present themselves as you go along. Keep the faith! I'm going into my 3rd year of crisis mode, now in the final stages. Everything happens for a reason when you are able to look back on it.

In March 2013, my Gary fell and fractured his left hip and pelvis. After they decided they would not do surgery, he was transferred to a rehab facility...the only one that would take him...he was there for 10 days. They made an error when recording his medications from the hospital and lowered the dose of his Exelon patch by 2/3, from 13.3mg/day down to 4.6mg/day, left him on his own for hydration, dropped trays in front of him to feed himself when he dropped from solid food to purée in 5 days. I noticed the decline, caught and had them correct the medication error, found 2 awful bedsores on his heels and called Hospice. They accepted him immediately, transferred him back to the memory care facility who knew him, and he was touch and go for 2 weeks.  

There is always hope! After that horrid stay, I never thought Gary would walk again, or be off a catheter, but both happened. It is truly amazing what the elderly can bounce back from. That first facility was responsible for nearly killing him, but he recovered, was off Hospice in just over 90 days, and was able to be rehabbed to functionally participate in his care, which enabled us to bring him home after I had our bathroom remodeled to be fully accessible with a roll-in shower. We enjoyed 7 months of upswing after that horrible trauma in that facility, back up to walking on a cane with assistance and feeding himself almost independently. That was such a wonderful honeymoon of borrowed time for him, me, and our 2 adult daughters. It was quite a journey and it was so awful that much of his pain and suffering could definitely have been avoided.  

We kept him home for just over 9 months  Our current situation is Gary was hospitalized for infections in November. He was home from the hospital in time for Thanksgiving, but then began his current spiral of decline with rapid weight loss and signs of brain damage from low oxygen levels they missed in that November Hospital stay. He became incontinent over about 3 weeks and has been fully bedridden since that hospital stay. He's now been on Hospice since December 4 and we have confirmed weight loss of over 60 pounds.

Last month, mid June, he started showing signs he didn't know where he was anymore. At that point, me and my adult daughters came to the conclusion that his quality of life would be the same whether he was home or not, and we were so exhausted. We'd been running our own nursing facility, staffing it with us, plus a 40 hour per week caregiver, and Hospice had provided nursing aids for bathing.  At the point we moved him, I know he wouldn't have wanted to be a burden, and he likely would have scolded us for keeping on as long as we had. 

This move to the Veteran's Home is the first time it's made sense to utilize Veteran's services for his care. They are working so hard to understand his needs and allow us to be daughters and a wife again, vs. full-time caregivers. The transition has been very emotional and a test of trust after we had issues with so many bad facility experiences, but I feel this may work out now. So hard to get over skepticism and the hurdle of the lack of LBD knowledge, but he has the full spectrum of symptoms and is a wonderful learning experience for their staff. They are literally blown away, as we used to be, that he goes for days in a coma sleep, then wakes up and is quite lucid and active for a day when they thought he would never respond again. It truly is amazing when he is able to do that, but the rebounds are getting farther apart and shorter in duration. He will serve to educate for others who come after him. Of course, upon admission we had a very hard time getting them to believe he needed bed rails and mats on the floor for bed safety. 5 days later they thanked me for the precautions. 

The miracle is he's still here. No one has expected him to hold on this long. though he doesn't know where he is now, he still knows who we are and sometimes recalls our visits. Every day is a miracle and we are grateful for any spec of a lucid moment. Bless his heart as he continues on in these final days and weeks.

I had posted this on a Carer support site on Facebook and realized it would be a useful update and synopsis for others. I just hope our story, and this Blog, is helpful to many.

Advocating for In-Home Assistance for a Loved One with Dementia/LBD

Let's be realistic...anyone with any form of dementia can use in-home assistance as soon as possible. Here are a few ideas to help you get the assistance started when you are on Medicare.  

If your loved one isn't currently in a state of definite decline, I would ask your doctor about referring you to Home Health for help. If they don't require skilled nursing assistance, your doctor can ask for Home Health to provide just the services they would respond best to. If they have any swallowing or speech changes, see if your doctor would recommend a speech evaluation. If they are having mobility challenges, a physical therapy evaluation can be ordered. If problems with feeding themselves, dressing or other grooming or coordination activities such as writing and dexterity, an occupational therapy evaluation can be ordered.  

Don't be surprised if you find challenges with getting therapists to agree to work with dementia, because there are a lot of therapists out there who seem to view dementia patients as unsalvagable, which is very sad. If that is the case, advocate by making phone calls to other agencies and interviewing their views on therapies until you find an agency who is supportive.The consequences of not fighting to show improvement for Home Health results in your loved one being considered "stable", which then disqualifies you for assistance. Throughout my husband's care, I wouldn't allow Home Health to drop us because I would call attention to every little improvement I could see to help them document it for Medicare coverage. I also became very familiar with the administrator at the Home Health we used, and I was able to press for care much longer than we would have gotten it otherwise. If a therapist gave up on him, I would point out how much progress he'd made, discuss the potential for greater progress, and they would ask other, more dementia-tolerant therapists on their staff to treat my husband so he would be allowed every opportunity to continue to improve.

On the flip side of Medicare Home Health certification requirements, Hospice can only come into play if your loved one shows decline and a doctor certifies they have less than 6 months. Hospice care is the "cadillac" of care when you are out of treatment options for your terminal illness. It can be difficult to come to grips with a transition to Hospice, but their palliative care is an absolute godsend for medical assistance for both loved one and caregiver.  Because I advocated to call attention to status improvements for Home Health, we were ultimately able to transition straight from Home Health into Hospice services with no interruption in the nursing support we desperately needed. Now I advocate by noting every decline symptom with Hospice to assist with their recertifications with Medicare.

It's a battle, but a battle worth fighting. Being a strong advocate is mandatory at EVERY stage of this disease, whether fighting to stay on Home Health by calling attention to improvement...fighting for proper care and POA communication in a hospital setting...pointing out every tiny bit of decline for a Hospice...or advocating for oxygen flow continuation and pain management continuation in my husband's current setting, with Hospice at my side.

Medicare Hospice and Home Health Discussion

On Hospice, the initial benefit period is 90 days, then after that benefit periods are only 60 days long. If you are caring for your loved one at home, you are qualified for 5 days of respite in each benefit period. I have always selected a Hospice provider who has their own inpatient units, and that's the only place I would allow them to take our Gary for his respite stays. No outside facilities were allowed because of repeated bad care experiences.

To be qualified for Hospice, you must have a life expectancy of less than 6 months, and must continue to show decline each benefit period to be recertified on Hospice. If you stabilize, their service will be discontinued, no matter that you sill have a terminal disease. You must have nearly all 7 symptoms of end-stage dementia on the FAST scale to be Hospice qualified with dementia as your only terminal diagnosis. Multiple diagnoses can be used, but the primary diagnosis dictates which medications Hospice will pay for and which will be excluded. The horror is if services start, then you stabilize at some point in your decline and they kick you off, still terminal, but now stable, which makes you ineligible for Hospice services. When you are stable, you are also not qualified for Home Health, because in that situation, you must be improving to receive those benefits. Many dementia patients and carers get caught in that awful limbo of stability with no support, which means no in-home skilled care and no respite unless all paid for out-of-pocket despite having a terminal illness and needing a medical transport to get to appointments. Our system desperately needs an overhaul!! LBD is SUCH a difficult primary Hospice diagnosis because of the cognitive and behavioral fluctuations.

We were kicked off Hospice last July and had to fight for rehab so Gary would be showing improvement for us to have Home Health help at home. I was able to advocate enough to keep it going until he had to be hospitalized in November for a sudden bout of infections that started at Adult Day Care. He qualified for Hospice again starting in December, and we kept noting and pointing out all signs of decline to keep Hospice involved in his care. Hospice would miss many signs if we don't advocate for him. It is exhausting. You leave Hospice and the basic needs, which would keep your loved one maintaining a comfortable stability are kept out of your reach unless you pay on your own because Medicare has stacked the red tape so high to get them. The fight for a hospital bed with an air mattress for bed sore prevention is monumental and nearly insurmountable without multiple letters of explanation from doctors and therapists. An oxygen concentrator requires a sustained reading below 88% blood oxygen for several minutes within a 24 hour period even if you had a lifetime certification for it before Hospice admission. Medicare considers you to be "recovered' if you are kicked off Hospice services, so you must scratch your way back to get back items you had proven were needed in the past! Beyond ridiculous!!

The attitude of Hospice when kicking you off is, "This is a good thing because they are doing better!" No, it's hell for the carer and patient because you have to fight so hard for basic needs and to keep them out of the hospitals that will kill them with their medication adjustments upon admission, and they aren't ever getting "better"! It is all decline, just sometimes imperceptible to untrained and inexperienced medical personnel who don't listen to advocates. This has been the most stressful, exhausting experience of my life and I have become an impatient, and often sarcastic, advocate because of all the continuous battles I've been forced to engage in. Still ongoing even though we're end-stage. Common sense and simple care logic are NOT empathetic medical traits, they have to be taught over and over again, in every single setting, and with every new medical encounter. For example, urine retention is ALWAYS met with a permanent or straight catheter intervention. Straight caths cause infections more frequently than retention, and a permanent catheter WILL BE PULLED OUT by a dementia patient. The medical community doesn't think in terms of individual circumstances and past experiences, and they love to try and trump the advocate. This constant battle has become my definition of absolute insanity!

Insights From Our Medication Journey

Gary's nights and days were completely reversed before he was first diagnosed. We got him turned around in a stay at a geriatric psych ward. Without the intervention of that hospital stay, it was impossible to keep him awake during the day. We also had to admit him for his safety because he was wandering alone around the house at night when weren't able to monitor his activities, and it was dangerous for him. He had no memory of what he would do at night and we would find things rearranged, tipped over and broken. It was quite difficult.  

During his first of two geri-psych admissions, they tried night/drowsy medications including Trazodone and Clonazepam, which are still in his regimen in his late stage. Trazodone was started in low doses and has worked well for him. It is now our anti-anxiety go-to medication between 25 and 50mg. Exelon patch (cholinesterase inhibitor) and Namenda, moving up to Namenda XR (designed for alzheimers) have helped Gary still have hours of good cognition.  Of course, over time, many adjustments have been made, but that initial stay at least put us on a survival track without me personally having to struggle through the experimentation in an uncontrolled environment.

Antipsychotics have all had horrible short or long-term side effects. Quetapine is generic for Seroquel.  It was tried first, and he didn't react well at all--it caused double hallucinations compared to his baseline. Risperdal was one of the initial medications that stuck, which is now on his allergy list after it ultimately locked him up 6 months after it was started. When Risperdal was stopped, Zyprexa was started in his second geri-psych stay, and that worked for nearly a year until it made him too rigid.  

One of the challenges of those geri-psych stays was getting the hospital psychiatrist to keep any medications that would cause drowsiness held for only night dosing.  You would think that since one of the main issues that brought us to admit him was nighttime sleeplessness, and his primary physician was saying no naps after 1 p.m., the psychiatrist would pick up on the fact that a drowsy medication shouldn't be given at 2 p.m., but not so.  You even have to advocate for common sense.

Lorazepam is one of the medications that caused my husband to require hospitalization at the same time the Risperdal was discontinued. Since then, I have asked everyone to carefully consider any medication changes and definitely suggest that any antipsychotic or medication that affects receptors in the brain be steered away from. Our geriatric dementia primary care doctor, who we were very fortunate to find in 2012 through his geri-psych stay, was very careful to use only medications that were less likely to cause any changes to the already limited functioning in Gary's brain. Preserve what was/is still working. Though the receptors in the brain may be interrupted at times, they are still functioning, which is why LBD has such extreme ups and downs.

Pain medications can also cause unexpected reactions. After a compression at T11 then a fractured left hip and pelvis, our pain med progression has been: Tylenol, Hydrocodone 5/325 and 10/325, liquid morphine plus MS Contin (time release morphine), the step up to 25mcg Fentanyl patch, now Fentanyl subcutaneous starting at 37.5mcg...now up to 75mcg plus up to 120mcg additional boluses each hour. Vicodin was an agitator and hallucinogen for Gary. He can't take any ibuprofen related meds because he is on blood thinners already for history of DVT/Embolism. Naproxen often causes confusion in the elderly so we have also steered clear of that.

When initially hospitalized, Gary could still do things around the house at that point, but the sun-downing at night with all the wandering and confusion was such an alter ego we needed the intervention. It became quite unmanageable. Before his stay I had no idea there were such units to assist. It did ultimately make a huge difference in giving us both back a better quality of life that was much more functional for at least a short time until the two catastrophic falls occurred.

Advice to anyone who thinks they may be dealing with LBD--Caution with ANY antipsychotic such as Seroquel, Zyprexa, Risperdal and especially not Haldol. All can cause deadly side effects and must be monitored closely. Our ultimate best solution ended up being no antipsychotics and increasing to Namenda XR instead of twice/day Namenda. The hallucinations are still mostly under control with minimal breakthroughs, and we still have the cognitive benefits. This route was the result of recommendations from Gary's Cleveland Clinic Neurologist and his geriatric internal medicine doctor that both specialize in dementias. 

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."