Progression may get him booted from hospice

ButterflyWings

DH has a recertification visit today, requested by a new team member yesterday afternoon.  It is possible he will “graduate” from hospice, mainly due to his weight gain which is a no-no basically. To clarify, one of the expected signals of decline for hospice is weight loss. 

Unfortunately, his brain is failing in the area that signals he is full. So, he eats lunch and then asks when’s lunch? Immediately. Constantly. Every meal is like he didn’t eat it. This is not a development or sign of decline that’s on the hospice radar at all, though it is one of the main ways his AD is progressing right now. Long plateau at 6d, with some recurrence of prior problem behaviors and lots of new breathing problems and total confusion, disorientation and he is incoherent more than ever before.  

We will see what happens with the recert decision. After 7 months under hospice care he has improved in some ways (infection gone, weight regained), they are getting pressure I’ve heard, since he is not actively dying right now.  I’m ok either way, though it has been a huge blessing to have home visits by nursing staff. 1 hr wkly CNA, and delivery of meds & supplies, all covered by Medicare. He is exit seeking (by himself) but refuses to leave home together without me regretting it, if I can convince him at all (see last week’s firefighters assist post).

(Apologies for the autocorrect typos!)

Quilting brings calm

A co-worker’s mom was on this roller coaster for a while.  She was in a nursing home with dementia and would qualify for hospice for  a while. Then something would improve ( possibly weight gain) and they would take  her off. Poof would go the comfy room, bed and chair.  Then a few months later, she’d requalify … until the next time. 

So don’t despair.  If they decertify him, ask what the criteria would  be to reinstate him.  Monitor him until that criteria happens. 

ButterflyWings

QBC - good advice. I did know going in, this sometimes happens. And yes, I’m ok either way. We will adapt if he gets decertified. 

I do wish there was more understanding of dementia in the health care and hospice arenas though. There is a tendency to see “normal” or “thriving” in very narrow terms that don’t take this disease into consideration. 

Maybe this will change in the future as we all keep educating each other, and also keep pushing the system to do better by our PWD’s. He has paid into Medicare for years so it isn’t like this level of support is a handout now that he is elderly, on a slow death march, and we need the village. 

Palliative told me to call in hospice because of his recurring UTIs etc., that were wreaking havoc, and all they could advise otherwise was to call 911. I don’t want to return to those days, but have learned a lot from his hospice team in the last half year, so I am really grateful for that. I will let you all know how it goes. We will make do, whatever happens. 

harshedbuzz

Butterfly-

Is the progression in breathing due to COPD or the like? Perhaps that, along with dementia, is enough to qualify?

HB

SusanB-dil

ugh - this just leaves me thinking.... "As if this isn't frustrating enough!"  Hope they keep him on, but good to know it would not be indefinite if they don't.

mommyandme (m&m)

We are also getting ready for recertification with hospice.  We’ve been on it 1.5 yrs now, but I’ve worried that they would discharge her quite a few times.  It’s been close I’ve heard.  The transfer wheel chair alone would be a huge loss and all the supplies! I have also come to terms if they do discharge her, we will survive, but I hope she continues under their care.  Such a strange dichotomy since I want my mom to be ok but then again hmmmm.  

The conflict is real. I hope your DH stays on, I guess.

Rescue mom

My mom, with severe dementia, was in and out of hospices several times, in 2 states. She’d be admitted for various “physical” problems, then those problems would improve, and she’d be out, or “graduate.”  Then she’d get worse—maybe several months later—and go back in. 

Thankfully, getting her back in was fast and easy.

Generally hospice IME does not help with “just” cognitive or behavior problems. It had to be something physical. It was weight loss and/or mobility issues mostly for mom, until the very end when death was imminent. She was in a great facility, but they all have limits unless you can find and afford 1-1 care.

The equipment and delivery/set-up alone from Hospice was a blessing. I had to buy a lot in between; but by her 2-3rd admission, her equipment needs changed.

Many dementia patients have such physical problems along with the dementia. Many others do not. Their bodies are pretty healthy—amazingly so, docs said about my mom— although their mind is gone.

I wish there was more services for those PWDs and families. Thatnneed is going to grow as the aging population does. Right now, I am seriously worried about how many people will get through it. 

Battlebuddy

   Butterfly Wings,

    You and I continue to be on the same section of trail. I could have written your post word for word including the weight issues and eating. My husband was up for recertification last week. Am waiting to hear. 

    Like you , I am ok either way. It’s been ten months. I could use the summer off , frankly. I feel like my whole social life/ life revolves around Hospice. Waiting for them to come etc. I too will miss the nurse. We have become friends. 

    My husband is being checked for weight loss by measuring his bicep. It has stopped getting smaller. To me it looks like his ribs are more visible but who knows how much he weighs . 

     10 days ago my husband had a third seizure . It strangely brings him” back” so he is more alert, talks more, and is more himself. So is a seizure decline? In a weird way he temporarily “ improves” which is a no no for Hospice. It’s all so crazy. He then declines back to baseline. 

    I agree with you that there needs more true Palliative care. ( not available in my area) . There should be a step before Hospice or a step when you go off Hospice. 

   Good Luck! I hope you stay on just for the supplies and nurse. ! 

May flowers

I hope hospice won’t drop him, but I know what you mean. My FIL has gained 2cm on his biceps, so I wonder what will happen when the time comes for recertification. His BP is still very low though, I don’t know how much that plays in.

Does anyone know, if hospice drops you, can you call the medical supply company and just continue to rent the equipment already here?

Battlebuddy

   Hospice told me they will get me a visiting doctor set up, using the social worker to arrange it. They said that they will come and take their bed , but not till another  hospital bed  is delivered ( ordered by the doctor) . Then you transfer him from one bed to the other? After that if he goes back on hospice , they switch beds again? 

   My husband hates being moved. Seems like a lot of rearranging.  

​fesk

When hospice stopped, we were able to keep the hospital bed. I got a new transfer wheelchair The doctor's office had to write a script for both. Initially, the order went to another medical supply company, but I didn't want the bed removed and a different model put in, so I called the original medical supply company and was able to keep the bed. 

I believe Medicare makes you rent the equipment for a certain amount of time and then you own it. Medicare won't pay for a fully automatic hospital bed, so there is a small co-pay each month for that. Be aware that Medicare only covers one wheelchair - I am not certain what the timeframe is on that, so if you are going to need a sturdier wheelchair than a transfer chair, you may want that to go through Medicare for that instead of the transfer chair. Amazon also sells wheelchair from Drive, etc.

Good luck Butterfly Wings.

Joydean

Butterfly wings, hope the hospice evaluation goes well.

M1

Me too, for all of you looking at recertification. It is kinda ridiculous.

ButterflyWings

I hope everyone has a good day ahead. We completed the recertification visit and will see. 

HB - yes, he has a chronic lung disease but they didn't admit him for that, and initially weren't even tracking it - nor providing any of those meds. They just recently sent nebulizer solution and oxygen in the wee hours though, because I put my foot down with the after hours team that this wasn't a "give morphine around the clock and let us know when he passes", situation. Hospice ultimately is end of life, I get it, but I didn't sign up for not managing his other chronic condition which has flared up in recent months. So, they have engaged now beyond AD, but I don't know what that means yet. When he's no longer in respiratory distress that's improvement, so maybe that will decertify him at that point anyway. Who knows?! It's kinda nuts.

Susan - I know! It is always something. Recert is every 60 days for Medicare (caregivers learn so much) and I just think the weight loss thing is especially missing the mark. Since so many of our terminally ill population now is PWDs and that number is only going to grow. Hospice criteria needs to take this phenomenon into account - his nurse figured it out: it is called leptin resistance, and can be triggered by AD. That's what happened to my DH, who has never gained a pound in 50-60 years. But in the last 5 months, his brain says "you haven't eaten yet", "and seems like you're starving so I'm gonna shut your metabolism down too". All the while he is eating (though not overeating since I am doing lots of portion control and other sneaky measures for low calorie snacks to fill between meal cravings) and he is gaining weight regardless. It is a big sign of his AD progression, not improvement at all, but Medicare will need to reconsider the criteria for hospice in a more dementia-informed way. 

(Might be TMI, but here are some links about this):

https://my.clevelandclinic.org/health/articles/22446-leptin#:~:text=Leptin%20resistance%20results%20in%20a,excess%20amounts%20of%20body%20fat. 

What is leptin resistance? If you have leptin resistance, your brain doesn’t respond as it normally would to leptin. Since it’s constantly stimulated by leptin, 1)you don’t get the sensation of feeling full or satiated. This causes you to eat more even though your body has enough fat stores. 2)The seeming lack of leptin in leptin resistance also causes your body to enter starvation mode. In an effort to save energy, your brain decreases your energy levels and makes you use fewer calories at rest. 

(And it has been confirmed that low levels of leptin can cause progression, plus brain damage from Alz can cause leptin resistance.   A lose, lose (except not in terms of weight!))

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4846558/

We present a model where leptin has a bidirectional role in AD. Not only can alterations in leptin levels and function worsen cognitive decline and progression of AD pathology, but AD pathology, in of itself, can disrupt leptin signaling, which together would lead to a downward spiral of progressive neurodegeneration and worsening body weight and systemic metabolic deficits. 

ButterflyWings

...continuing...

M&M - Yes, the two sides of this coin, or sword, can make you feel so conflicted!

Rescue - What a rollercoaster it sounds like your mom was on. I know you are right about all your observations. I hope we can either stay on or off, though that's probably not realistic. As BB alluded to, it gets exhausting with all the moving parts of hospice already, but DH deserves it and I am happy for the help. Things I didn't even know we needed, were right there when the time came. And things like placing the bedside commode frame over the regular toilet. It saved him from falling many times, recently, and stopped the rocking he was doing, causing plumbing issues (soaked the ceiling below...had to mitigate mold etc. This disease is so destructive!)

BattleBuddy - Yep. Right there with ya. So, we will both wait to hear the recert decision. HaHa I know what you mean about a vacation might not be too bad. Hospice keeps us hopping for sure. Its a little like grand central station here with them in & out on a moments notice. Plus deliveries, etc. Full time job for CGs to coordinate. Gosh the seizures! I hope your husband is "better". So interesting it makes him more clear for a time. Good and bad with this journey every day. Take a look at the information on leptin resistance in my prior reply. You may have known about this, but I never heard of it and even his neuro team at the memory clinic wasn't aware of the link to dementia, leptin resistance, and appetite/weight gain. 

Mayflowers - Fingers crossed your FIL's biceps don't override all his other challenges, definitely decline. The low BP and the urinary issues alone show he is clearly not improving. Not to mention that dementia is terminal. Medicare isn't dealing with that properly re hospice. (Added: I forgot to mention, DH seemed to think the cute nurse was asking to see his muscle yesterday and he was kind of flexing (!) I was thinking omg, that will add some cms - not good)

Fesk and Joydean - Thanks for the well wishes! I am sharing them with everyone else facing recertification! Didn't know so many of us were going through the same thing. Its nervewracking.

M1 - It definitely is a lot of change and uncertainty for a one-way terminal condition. I understand that (maybe) once our LOs are Stage 7, the recerts may stop or at least not be every 60 days. Who knows. Not looking forward to it if he is decertified right now, but we will adapt. As his NP says, families shouldn't be punished for providing superior care (their words). My DH is clean, safe, happy (most of the time), well-monitored, no recent falls, meds well-managed, and healthy diet 24/7. Most of that care is provided free, by an exhausted but loving wife. Like so many families, just doing what we can and must despite limited resources etc. 

Wishing everyone best of luck with any "outside" decisions impacting their LOs right now. Be well, caregivers. Here is a link to the hospice and palliative care eligibility guidelines: 

https://www.vitas.com/for-healthcare-professionals/hospice-and-palliative-care-eligibility-guidelines/hospice-eligibility-guidelines