Stage 7, but still has many words, hospice?

Sleepless in Sleep · October 2022

Hi, my parent seems to have transitioned to stage 7, but can still speak many words. It is hard to say how many individual words they can speak (maybe 20-30+), but they pretty much tick almost all of the other boxes (Tam Cummings Stage 7 Breakdown).

I am asking if anyone has experience with this: stage 7 with words. How does this affect one’s ability to get on hospice help. My understanding is that the ability to speak more than a hand-full of words may disqualify one from hospice help.

Thank You.

Battlebuddy · October 2022

My husband is on Hospice and has been for a year.

He also has more words than he is supposed to have. If I added up all the words that he can speak I could probably get to twenty. If I added up the words he uses on a given day I would say 4 to 6. His primary two are Ok and Yeah. He throws out an occasional phrase like “ let me see” or “ in a way” but not related to anything.

It’s interesting because my daughter is a speech therapist , and she said his “ functional language “ is very low because these phrases aren’t related to anything and they don’t help him communicate his needs.

If you haven’t called Hospice , (and want to give it a try ) , they often qualify on decline . Loss of weight , a lot of sleeping , probables walking can get you on.

My husband also eats well so he has never really stopped eating. He sleeps almost round the clock, only waking for breakfast and dinner. So he has lost weight from just not being awake to eat.

Not everyone fits perfectly in all the stages

BassetHoundAnn · October 2022

Hello, Sleepless. My mom is in early Stage 7 and is still talkative. The first time we applied for hospice she was rejected because she could still speak in sentences. The sentences usually didn't make much sense, and were full of "cocktail chatter" like "You don't say" and "What's the weather outside like?" but that was enough for a rejection. We reapplied 3 weeks later and she was accepted even though she was still speaking the same sentences. The director of her memory care said that some residents have been rejected by hospice 5-6 times before being accepted, so one must persevere and reapply. The lesson is to keep reapplying after rejections. It's a crazy system, isn't it?

ninalu · October 2022

Hi Sleepless,
We are also in stage 7 with a lot more words than I expected. There is some communication through language, but it's often difficult or impossible to discern the meaning. And for simple exchanges, like asking her if she's having pain, she will say "No" while clearly being in pain (grimacing, moaning, etc.) So, while she has words, it's hard to trust them and use them as a means of communication. Most of what we do is look to other ways she communicates. It was an important thing to note that her verbal communication isn't reliable, even though it is present.

I agree with Battle about looking at other aspects of health and function; eating less, loss of ambulation, increase in sleep / fatigue and others.

Also, like Basset, my mom has a few social or greeting phrases that surprise us sometimes and can look like she's earlier in the journey than she is. Sometimes she will use these greetings with new people and they can think, if they haven't spent any time with her, that she's doing fine and well-oriented. I ask people to sit with her for a bit longer if they want a true picture vs. just a first impression.

harshedbuzz · October 2022

Sleepless-

Cobbling onto what BattleBuddy said, not all PWD will neatly tick off all the boxes.

When I first joined, something that was impressed on me many times by those with greater experience was that when considering the stage of disease progression applies to a LO, they are considered to be in the latest stage for which that have even a single symptom or behavior. More lately, I read people describe their LO as straddling two or more stages at once.

I was concerned in the last week of dad's life about his progression. He'd lost an alarming amount of weight in the previous couple of months despite eating fairly well and being supplemented with treats. His face really changed and became almost unrecognizable. I met with the DON who agreed that he saw changes too. He contacted the facility doctor who ordered an Xray, bloodwork and a swallowing assessment for an SLP. I happened on her giving a test to see how well he was swallowing various foods. I'd brought lunch, so she used that in her test. During the test, dad went back and forth easily between flirting with the SLP who an attractive woman was a few years younger than me and telling me all about a visit from my sister earlier in the day. Every so often he'd excuse himself to use his bathroom-- so still continent at times.

Dad needed a nap when we were done, so I met with the DON and SLP outside the room. The SLP specifically mentioned that dad's pragmatic use of speech was remarkable given how poorly his swallowing was. She was gobsmacked that the sister who visited earlier had, in fact, died in 1994, because of how normal his story sounded. She made suggestions around thickened liquids and feeding safely and together we decided to schedule a hospice eval based on his swallowing for the next morning. He died from complications of aspiration pneumonia later that evening.

I was freaked enough by the visit, that I stopped by mom's to suggest she drop by for a visit that day and also that I's OKed a hospice eval. She promised she'd make it the next day. I even called dad's brother who did a drive-by every 6 weeks or so to warn him that dad's physical appearance would be a shock and that he should make a visit soon. They were more focused on what he could do, rather than the dangerous change in the ability to swallow and were genuinely surprised when he died sooner than they anticipated.

YMMV.

HB

trm · October 2022

Morning: I am pretty sure DW is mid to late stage 6. Those that have gone through stage 6, what have you experienced in this journey from 6 to 7? She talks, but 90% of the time, the words make no sense. She is VERY resistant to a Caregiver. As we near, what I think is stage 7, I can't do this on my own. Have any of you dealt with extreme anger over a Caregiver? What really determines the transition to stage 7? Such an emotional and physically exhausting journey.

zauberflote · October 2022

S in S-- my mom was walking, conversing, eating when she was accepted for the first hospice I called. The dementia was so obvious, she was 91 and very frail, and no-one had any problems with her being on hospice. She lived 8 more months. MIL was conversing, eating, but not ambulating well because of strokes, and had advanced COPD and a very mild and gentle case of dementia. The same hospice had, again, no problem accepting her. She lived 18 more months. It never hurts to try.

MN Chickadee · October 2022

It seemed like our hospice team was looking more for a combination of the criteria than one specifically. If your parent is checking all the other boxes there is a decent chance they would qualify. Especially if there is weight loss, that seems to be the biggest factor they look for. If he/she has other health conditions/diagnosis that will also come into play. It doesn't hurt to have an evaluation. Even if she doesn't qualify that day they will tell you what to look for and track her. They would check back with her every couple weeks and get her in the program whenever she meets the threshold and then you have all the intake stuff done already. You can also try different hospice agencies, sometimes one will not accept someone and another will.

Jo C. · October 2022

Some interesting Hospice dynamics that can make a difference:

1. Every Hospice is different from one another. Some are far more beneficent than others in both admission to service as well as other service provisions. We have many Members whose LOs were refused by one Hospice and yet were admitted to a different Hospice that the Member had called to ask for another service assessment. The actual need for service/care must be there, but it can certainly vary.

Some Hospice staff, (licensed nurses), including those doing intake assessment are far more proficient and/or knowledgable than others may possibly be. One person may be very knowledgable, experienced and capable and another may not be so and may even not be taking the process as in-depth. It can happen..

2. Medicare has strict criteria for admission to Hospice for each diagnosis. If a person has dementia, the criteria is dreadfully strict and most often, quite difficult to meet. So . . . in many instances, seeing the need for Hospice service is present, but the dementia criteria not being quite met, Hospice may choose to admit under another diagnosis that is actually present in the patient. This could be heart disease, stroke, lung disease, liver or kidney disease, failure to thrive, etc.; dementia then becomes a secondary diagnosis. This is where a knowledgable intake and assigned nurses are a big plus. (The intake assessment is very lengthy in questions that must be asked by Medicare mandate.)

The six month period of time expected until death really slides when dementia is present. This six month period is supposed to be attested to by a physcian; usually the Hospice MD, IF the disease runs its "usual" course. But another, "of course," is that not all diseases run the same course or length of time. We have Members whose LOs have been on Hospice longer than a year. Several have had their LO on service for up to and even over two years.

If one Hospice does not accept the patient to service and one feels their LO is at a state that really needs such a service, it is perfectly alright to contact a different Hospice.

Hospice must re-certify a patient as needing service at intervals; these are called "Certification Periods." There are two 90 day Cert Periods to start, followed by unlimited 60 day Cert Periods. These certifications must be attested to in writing by the Hospice MD who gets the information of condition from the patient's Hospice RN.

In both my professional and personal experience, the larger Hospices have been far more beneficent than are the small "Mom and Pop," entities.

It certainly does seem that CMS needs to revisit their admission criteria for the diagnosis of dementia.

J.

Jo C. · October 2022