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when did you contact hospice?
CodyW
Posted: Sunday, May 5, 2019 6:49 PM
Joined: 4/5/2013
Posts: 820


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.

CodyW


Rescue mom
Posted: Sunday, May 5, 2019 7:54 PM
Joined: 10/12/2018
Posts: 460


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.


terei
Posted: Sunday, May 5, 2019 8:02 PM
Joined: 5/16/2017
Posts: 288


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


Mike&BrendaTX
Posted: Sunday, May 5, 2019 11:21 PM
Joined: 7/10/2017
Posts: 481


CodyW,

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.

Mike


harshedbuzz
Posted: Monday, May 6, 2019 5:32 AM
Joined: 3/6/2017
Posts: 1403


CodyW-


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


King Boo
Posted: Monday, May 6, 2019 8:15 AM
Joined: 1/9/2012
Posts: 2916


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.


Eric L
Posted: Monday, May 6, 2019 10:23 AM
Joined: 12/5/2014
Posts: 956


In December of 2018, MIL had a major downturn. At about that point in time, we were also a bit concerned that the caregiver at the time didn't have the skills or training to continue in her position as MIL progressed. We've utilized the services of a geriatric care manager for the last couple of years and we voiced our concerns to her about the current caregiver. She came out, did an assessment, and told us that our instincts were correct and that it was time to find someone new. She also mentioned in passing that it might be time for a hospice evaluation.

We moved from have care 3 days to 7 days a week. MIL has a long term care policy and they told us in order to add the extra days, they needed to come out and do another evaluation. After about 3 seconds, they guy that did it stopped with all the testing and told us "I really think you should look into hospice care". After doing a bit of research we decided to go through with it. Hospice started at the end of March.

My MIL is one of the folks with dementia that has extreme agitation. One of the really wonderful things about hospice is that whenever we notice something is amiss, we can contact them. For instance, she was wound up beyond belief on Easter Sunday. We think she may have had a UTI. It was nice to be able to call someone and say "Hey, she's extra crazy today, what can we do?" and a nurse came out and checked her out. That night, she barely slept, even after we gave her a trazadone(sp?). Called hospice in the morning, explained our situation and they sent out new meds for sleeping and put in a script for antibiotics just in case it was a UTI.

As many others have said, we probably should have started hospice a bit earlier than we did. She has a bath aide that comes 3 times a week and right now, a nurse comes twice a week for a quick checkup. I can also text her RN caseworker at any time and she's been fantastic. Just this last Saturday, I texted her and asked if it would be possible to get a bedside commode and she ordered it as soon as she saw the text.
Ekatoline
Posted: Monday, May 6, 2019 5:19 PM
Joined: 5/19/2018
Posts: 2


I have a piggy-back question to this. My mom is in stage 6 best I can tell, and I am wondering about the transition to stage 7? What are the first signs? She is in a memory care unit and we were told that if you initiate hospice then your LO cannot be forced to move out of memory care (into skilled nursing or etc.). Is that true? If so, do they send a part time or full time nurse? Because the LPN’s in the memory care unit do not seem to be trained or equipped for more advanced care. They already struggle sometimes with her diabetes management. We have been pleased with the staff as far as attitude and kindness, but they require every little thing to be ordered and written out by the doctor (for example when we got the doctor to write an order for Zyrtec to switch from Claritin, they were giving her BOTH because he did not send a specific order to STOP the Claritin). Are all facilities so strict about doctor’s orders or are they able to use some common sense too?
Mike&BrendaTX
Posted: Monday, May 6, 2019 7:17 PM
Joined: 7/10/2017
Posts: 481


Ekatoline,

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, become manifest.

 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.

Mike


King Boo
Posted: Tuesday, May 7, 2019 7:00 AM
Joined: 1/9/2012
Posts: 2916


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. 


windyshores
Posted: Tuesday, May 7, 2019 8:40 AM
Joined: 2/16/2019
Posts: 40


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.

 

 

 

 

 


dayn2nite2
Posted: Tuesday, May 7, 2019 11:02 AM
Joined: 6/20/2016
Posts: 1803


CodyW, your LO sounds more than ready for hospice.  I don't know what the medical staff's reluctance is, but I would call for an evaluation myself.
King Boo
Posted: Tuesday, May 7, 2019 2:40 PM
Joined: 1/9/2012
Posts: 2916


I forgot to mention that my LO's care team was quite bonded to him - and full of misconceptions about hospice.  They didn't want to let go, and objected to him being on hospice.  That was an obstacle I didn't anticipate (and it took me a bit to figure out what was going on)/
NJK
Posted: Wednesday, May 8, 2019 9:38 AM
Joined: 5/7/2012
Posts: 379


I called hospice into my home when it became clear that mom was firmly in 7 and that my care team was bound to call 911as a first call. The care team could recognize hospice as first call and then hospice would come and take care of all calls. The last thing i wanted was for mom's last few days under bright lights and surrounded by noise.
CodyW
Posted: Wednesday, May 8, 2019 3:35 PM
Joined: 4/5/2013
Posts: 820


Thanks for all your replies, and for encouraging me to go ahead and get an evaluation.  If anyone has a list of questions I should ask the agencies, please share!  I will set up conference calls with my sisters and the 2 recommended organizations so we can get a handle on what they do and how they differ.  Then I'll ask for an evaluation from our first choice agency.  I'll follow up on this post in June, letting you know how it went.
Joanne143
Posted: Friday, May 10, 2019 8:58 AM
Joined: 12/27/2018
Posts: 15


For us, contacting hospice was appropriate once we knew we no longer wanted him poked, prodded, tested or anything any more.  We just wanted him to have his dignity and comfort.  At first all they did was monitor him. Since there were already on board when he needed them it was easy to make a call.  I could call them and ask them questions any time.  There werent just there for him but for me too. It was the best decision I could have made to being them on before he was suffering.
Eric L
Posted: Friday, May 10, 2019 10:32 AM
Joined: 12/5/2014
Posts: 956


CodyW - We've been through the hospice experience twice. The first time, it was kind of picked for us. My FIL caught the flu and he was coughing up blood, so my wife and brother took him to the ER. While they were at the ER, the attending oncologist conferred with my FILs oncologist and told us that he should be put on hospice. They were decent enough (the social worker was fantastic).

This time around, the geriatric care manager that we hired to help us navigate all this stuff with MIL recommended a hospice company that she had worked with many times in the past. After a few early hiccups, I can't complain. Her (the care manager's) big thing was making sure that the company had enough staff and that it was a well-established company that had been around our area for a while.
Johns baby girl
Posted: Tuesday, May 14, 2019 12:28 PM
Joined: 2/26/2019
Posts: 22


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.


 
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