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Stage 7, but still has many words, hospice?
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.
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
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.
Let me take a stab at the change from 6 to 7. . Stage 6 D and 6E are urinary and bowel incontinence. So that very often will take place and you know the next set of symptoms will be the beginning of 7.
For my husband I would say the three things that happened next were weight loss, problems walking and getting up from chairs, and sleeping excessively .
PWD can loose 10 percent of their weight at this stage. My husband was eating well but just lost a little bit of weight each month.
He also began having problems getting up out of chairs.Sometimes he would go to stand and just kind of crumple to the ground. I would not be able to get him back up all the time and would have to get lift assist.
And one day he just began to not get out of bed. He kind of forgot how to get out of the bed, and if I helped him to bed at night, he couldn’t remember how to get his legs in the bed. I would have to lift his legs and position him in the bed. Some days he would just get up and come out of his room, but more and more his world shrank to the bedroom and sleeping.
So that is how 7 began for us. Other people will probably have different things to say but that’s what happened to us.
Maybe this will help? It shows 3 scales used to stage patients
Sleepless I can't add anything, at all and sorry to hear of your lo's progression. But thank you for your question. Like so many who are not there yet, but your post is helping me understand by the others experience. I had no idea about the language requirement for hospice, that blew me away.
Thank you all for your wonderful replies, and I am glad it seemed helpful for others.
My parent was ‘accepted’ into a hospice program. Like many said, this provider looked at the overall situation, and was able to discount their speaking abilities.