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when did you contact hospice?
My mom is in stage 7. She has been non-ambulatory for a year. Her speech is mostly word salad, but she occasionally gets out a coherent phrase. She generally eats with her hands and often needs assistance to get going on her food. Apart from her dementia she is in good health. Her weight has been stable. She has a living will and I have filled out paperwork indicating no tube feedings, DNR, comfort measures only. She is napping in the afternoon and sleeping through the night. She used to fight her caregivers a lot but has become more docile.
I have contact information for a few local hospice agencies, and plan to meet with 2 of them in June. Her PCP and the nursing home staff do not seem to think she is ready for hospice, but I am not so sure. Up until this past October she was being seen about every 4 months by a Palliative Care nurse from the hospice agency affiliated with her CCRC. That nurse left for another job and has not been replaced, which seems like a bad sign. Could her CCRC nursing home have any financial motivation to delay hospice care?
When did you ask for a hospice evaluation? My gut says it is time to select our first choice of agencies and ask for them to evaluate her this summer. I would like to hear when and why other people made the call to get their LOs evaluated for hospice.
Everybody I can remember says they should have contacted a hospice sooner. You can contact a hospice—you do not need anyone’s approval or permission—and they will come and tell you what they can do. If it’s too early, they will tell you. The old sayings about “six months to live” are no longer true, especially with dementias as you describe.
There are countless stories here about PCPs who were unfamiliar with dementias and/or what hospice does. But nobody has ever regretted at least contacting the hospice and asking. The general rule is, if you think it’s time, it’s probably past time. There are threads here now that say that,
Call and ask. You have nothing to lose, and much to gain.
We contacted H about 90 days ago, when my mom was about the stage you are describing, except she was still walking (+ falling a lot) We actually were told by one org that she wasnt ready, but my mom’s companion who has seen her weekly for about 3 years disagreed.
A different H came + assessed + said she was ready. One reason being she had lost about 10 lbs. She also started fighting taking any meds, which we stopped totally because she became so agitated when they tried to give them to her.
She now does not walk at all + is spending approx 20+ hours a day sleeping. The facility says she is eating about 20% what she used to. They are changing her diaper in bed + giving sponge baths.
Hospice has been VERY helpful with services as well as supplies, a hospital bed, commode, electric recliner etc. Very responsive
If she's in stage 7, she's ready for hospice. Contact them ASAP. The longer you wait, the less you will benefit from their services. Medicare covers 100%, so there's no down side to contacting them. Don't let people who are stuill stuck in the "6 months to live" theme fool you - that doesn't apply for dementia patients. They have different entry criteria for PWD and your mom sounds like she fits all of them.
I would start the process now. There's a lot of good to be had from a well chosen hospice program, so there's no point in delaying it. IME, some CCRC and SNFs are hesitant to bring up hospice for fear of freaking families out, but most welcome the extra help with care.HB
Cody, tell your facility you are requesting a hospice evaluation and then have the hospice nurse from that organization do an evaluation. Out of the horses' mouth, so to speak. They will say yes, or no. There is a pretty strict certification process. Just make sure your hospice organization is well established with a good history; there are many fly by nights that pop up without a true hospice calling.
Many healthcare professionals have myths and misconceptions about hospice, so relying on an non 'woke' healthcare professional to make that call when your gut is telling you otherwise is not a good idea. I have heard from several MD's I work with, including an anesthesiologist, that 'hospice is only for your final days and all they do is pain management." Soooo untrue.
If you use the search function, JoC gave me a great response in my time of need, it is worth a read.
Hospice is designed to be used for months, not days or hours. It is a good thing.
Hospice doesn't demand or force the patient to move anywhere. They can visit her at home or in a facility, it doesn't matter. Typically, a nurse will visit once or more per week. They can send bath aides several times a week to make sure she is kept clean. The Hospice doctor (or prescribing nurse) can monitor or initiate meds.
From Barry Reisberg's original description of the seven stages (which is used by Hospice, btw) [emphasis mine]:
As stage 6 comes to an end, the patient, who is doubly incontinent
and needs assistance with dressing and bathing, begins to manifest overt
breakdown in the ability to articulate speech. Stuttering
(verbigeration), neologisms, and or an increased paucity of speech,
When it reaches the point that in addition to the above, the patient can not perform activities of daily living and would likely die if left without constant supervision, that's the start of stage 7. The first thing that usually goes in stage 7 is speech, then the ability to walk and the ability to feed herself by herself.
If she is already in a MC facility, Hospice (which is very experienced with dealing with dementia patients) will assist there or anywhere else you choose to move her.
Ekatoline, you would do better to start your own thread to get more replies.
There's some misconceptions in your post and possibly some red flags.
The baseline problem appears to be that your Mom may need or soon need a higher level of care than your current MC provides.
The medication error of giving double medications is a HUGE red flag that this facility does not have adequate oversight to be giving medication. There are protocols in place that should have prevented this if they are licensed. The type of error can cause death with certain medications. This occurance is a sign of gross negligence and I would be scrambling to find a new facility (most likely).
The 'can't be thrown out if on hospice' is an odd comment by the facility, which appears to be 'upselling' their capabilities on the basis of this comment, if accurate. Many a person has been told they can stay at their facility 'even if on hospice', but the caveat is if their care needs remain appropriate for that particular facility. A Memory Care is a long way from a nursing home and if care needs accelerate a resident will be asked to move, regardless of hospice or non hospice.
Most of us do not completely understand what hospice is. It is an "extra" layer of services on top of basic care needs provided by a facility, designed to help a person be comfortable, and 'best as' during what is anticipated to be their last 6 months of life. Typically, hospice volunteers visit, and hospice trained aides come twice a week to help with bathing; a hospice nurse visits for an initial assessment, and the periodically to see how things are going, but is not a regular participant in daily care.
You want to make sure you use a long standing hospice with a known quality of care there are a lot of fly by night pop up organizations that can exist.
Hospice is a philosophy - families must be on board with no longer pursuing aggressive medical treatment. Not everyone gets to this point. It was a very good experience for us.
As to STages, the main page has an educational article on it, or google for Fisher's stages of Alzheimers.
Hospices vary in their adherence to guidelines on eligibility. For instance, weight loss over 10 lbs., inability to put 20 words together, inability to perform ADL's and so on.
One of our local hospices is quite strict and has my mother on Palliative aka "Bridge to Hospice."
Our other local hospice had her on hospice services last year, using the "general picture of decline." I have no idea why they are looser with criteria but it may have to do with their financial resources compared to the other stricter one.
I know people who have been on hospice for years, and some who are off and on over years. I trained as a volunteer and we were told this was the case, and that the public misperception is that people go on hospice only when actively dying.
The benefits from hospice services are huge: around here, daily aide for one hour, nurse visits (2 or more/week depending), chaplain, social worker, and volunteer. We had an amazing aide who brought my mother to the point where she didn't need hospice. Very common.
Now she needs it again.
The only thing about hospice is you need to be ready not to pursue diagnoses or treatment. My mother fell and had a large hematoma, that required surgery. Hospice okayed that but then the MD really wanted a CT. We told hospice he wanted it for comfort reasons and it was covered, but it was dicey. There is hospice Medicare and regular Medicare and you can't have both, and hospice Medicare won't cover things like CT unless for comfort.
Better to get on hospice, even if there are years left, if it is possible. For a situation like our CT you can revoke for a day and go back on! For someone as acutely ill as your parent, I would do it asap, absolutely.
Medicare changed some things with Hospice within the last year. Palliative Care seems to be a bridge for those with difficulty qualifying although in the past, we all knew them as the same thing. In my city, there are only 3 companies with the "Palliative Care" qualification. Either way, you still get the benefits of nurse oversight. One company here is a Home Health agency that offers Palliative Care.
Which ever way you go, be sure to be there for the assessment. You have the history that may not be on paper with a facility. There are a number of ways to qualify a person that may not be related to the dementia.