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My parents do not have a terminal illness other than being 90 and 91.
They have dementia and other “old age” conditions. No doctor has told them they have a terminal illness like cancer, etc.
It seems hospice has the attitude of “ they are end of life so why treat”
Can anyone answer this for me?

Dementia is a "Life Limiting Condition" that would qualify them for Hospice.
With Hospice IN THE HOME you will get a Nurse that will come at least 1 time a week. The Nurse will order medications and put in the order for any equipment that you might need.
A CNA that will come 2 to 3 times a week to give them a bath or shower, daily grooming, dressing and most likely change the bed sheets if needed. And the CNA will order supplies like Gloves, wipes, incontinence briefs, ointments, absorbent pads and other "non prescription" supplies.
A Social Worker will be assigned and will come 1 time a month, more or less often as you want.
A Chaplain will be assigned and they will come once a week, more or less often as you want.
And you can request a Volunteer that can come in and sit with them to give you a break.
All this ...and more is covered by Medicare, Medicaid. And most other insurance.
In other words there will be no charge to you or your parents.

If your parents are in a facility now they will continue to pay for the room, board but there will no charges for any of the services that the Hospice team does. The facility can not duplicate any of the services either. (a bath or shower will be done by Hospice the facility will no longer give mom or dad a shower)

Hospice WILL treat certain things. If mom or dad gets a UTI or a rash that will be treated. A pressure sore will be treated.

The goal of Hospice is comfort.
If pain and symptoms can not be managed at home they will be transported to a Hospice In Patient Unit (if they have one, a Hospital that the Hospice has an agreement with if they don't have an In Patient Unit)
And Hospice will also cover Respite Care.

With Hospice there will be no more appointments to the doctor, no ER trips. Hospice becomes your 911, the Hospice doctors become their doctors.

In my opinion the sooner a person gets on Hospice the better. You are able to take advantage of all that Hospice can offer.
If you have any questions call 1 or 2 Hospice in your area and interview them and see what they can offer.
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Reply to Grandma1954
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Dementia is not a normal condition that comes along with old age. It's a terminal illness with a life expectancy of 5 years for vascular dementia and other more aggressive types like FTD.

The "attitude" hospice takes of "why treat" an elder at end of life is to spare THEM the unnecessary poking and prodding and other undignified medical procedures practiced at hospitals and ERs. Not "why bother they've already got one foot in the grave"!

Your parents doctor is suggesting a hospice evaluation to see if they qualify for services to keep them comfortable. If they don't qualify, Medicare won't send nurses and CNAs to their home to see them, examine them and bathe them regularly, at exorbitant costs, that's for sure. Nor will they get medical supplies like hospital beds and medications for no cost. It's an option, perhaps that's all.

A doctor cannot "order hospice"....he can only order an evaluation. The hospice company says yay or nay. Hospice IS extra help at home because your parents WILL get an RN to visit once a week and a CNA twice a week to bathe them, a social worker and chaplain checking in and to call upon. It's just not a HUGE amount of care.

Home Health Care is covered by Medicare:

What's home health care?

Home health care is a wide range of health care services that can be given in your home for an illness or injury. Home health care is usually less expensive, more convenient, and just as effective as care you get in a hospital or skilled nursing facility (SNF). 
Examples of skilled home health services include:
Wound care for pressure sores or a surgical wound
Patient and caregiver education
Intravenous or nutrition therapy
Injections
Monitoring serious illness and unstable health status
In general, the goal of home health care is to treat an illness or injury. Home health care may help you:
Recover
Regain your independence
Become more self-sufficient
Maintain your current condition or level of function
Slow decline
If you get your Medicare  
benefits (tooltip) through a Medicare health plan, check with your plan to find out how it gives your Medicare-covered home health benefits.If you have a Medicare Supplement Insurance (
Medigap) policy or other health insurance coverage, tell your doctor or or other health care provider so your bills get paid correctly.If your doctor or or other health care provider (including a nurse practitioner, a clinical nurse specialist, and physician assistant) decides you need home health care, they should give you a list of agencies that serve your area. They must tell you whether their organization has a financial interest in any agency listed. 
What should I expect from my home health care?

Doctor or other health care provider's orders are needed to start care. Once your doctor or other health care provider refers you for home health services, the home health agency will schedule an appointment and come to your home to talk to you about your needs and ask you some questions about your health.
The home health agency staff will also talk to your doctor or other health care provider about your care and keep your them updated on your progress.
It’s important that home health staff see you as often as the doctor or other health care provider ordered.
Examples of what the home health staff should do:

Check what you’re eating and drinking.
Check your blood pressure, temperature, heart rate, and breathing.
Check that you’re taking your prescription and other drugs and any treatments correctly.
Ask if you’re having pain.
Check your safety in the home.
Teach you about your care so you can take care of yourself.
Coordinate your care. This means they must communicate regularly with you, your doctor or other health care provider, and anyone else who gives you care.

Your folks doctor orders HHC.

As you can see, there is a difference between the two.

Good luck to you.
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Reply to lealonnie1
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Yes. They are at the end of life.
And yes, other than for comfort, why treat?
I am 81, and I am/hope I am nearing the end of life. I have a new diagnosis of breast cancer. I have allowed a lumpectomy but nothing else including testing of nodes. If it spreads I will not treat it but will choose palliative care, then hospice as soon as I am able, the MAiD (medical aid in dying). My family knows/agrees. My medical team knows/agrees and this is scanned to my charts now.

You ask what the difference is between Home Health Care and Hospice.
The one has NOTHING to do with the other.
Home Health Care is care hired by to care for someone in their home.
Hospice is end of life care.
Hospice should not be used to "get you more help". A) it gets you a bed bath or two once a week, an RN drop by once a week, and a call from clergy and social worker now that it has become a for profit giant in the hedge fund portfolio. So you DON'T get more help. Medicare and the taxpayer take a huge hit if hospice is used for ANYTHING other than end of life care. B) Hospice is meant for the end of life. If the doctors do not believe that death will occur within the next six months then they should not order hospice. C) If a senior WISHES to have hospice and the more powerful drugs it affords one, then they should have it. If not, then not.

If you get Hospice in you need to understand that an MD has decided in his best judgement that death is imminent within six months time. If he tells you he is getting it in for any other reason then he is lying to the government and everyone else. He/she should be told so. I do know that Hospices are currently "partnering" with nursing homes and ALFs (means KICKBACKS). I wonder if they are not also partnering with our doctors.

I am a retired RN. I fought for Hospice and it was a wonder in the beginning when we got it from across the pond. In my career I saw people screaming and crying and begging to die in absolute agony before the wonder of hospice. There were once entire teams that worked with and for families at the time of death.
Now hospice as become just another Cash Cow in our military-industial complex. It saddens me but it is all we have, and it DOES COME WITH THE BIG DRUGS.
So if you let hospice in the door know they do have these drugs. And they will use them. And it needs to be made clear to them that you DO want these drugs to the level of comfort, but not above that.

I wish I felt better about today's hospice than I do and I hope there are some good ones out there. In the last just over a year I have not seen them, tho I occ. do still hear about good ones here on AC.
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Reply to AlvaDeer
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NeedHelpWithMom May 14, 2024
Speaking of drugs, Alva…

How many times have we heard on this forum that hospice kills people or speeds up a patient’s death due to drugs?

These people are dying. A disease is killing them. Old age is killing them. Not hospice.

Let’s face it. Hospice isn’t in the business of curing anyone. Hospice patients are terminally ill. Hospice provides comfort care and drugs provide comfort.

My mom died peacefully in her hospice end of life care home because she remained on Morphine, Ativan and Seroquel. I wouldn’t have had it any other way.

Mom’s comfort was most important to her and us. She had long been ready to check out whenever her number came up.
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The criteria for hospice is that the pt is expected to die within six months, whereas dementia can progress from years to decades. If YOURE not seeing them dying that quickly, ask this doctor why he’s so sure they will.

Hospice also means your care will be solely in the hands of an rn. Ours failed several times to place a foley into dad at which point my sister did it. Yeah, she’s a doc, but that’s the first time she touched his penis her whole life, and most ppl don’t have a doctor in the family.
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Reply to PeggySue2020
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Home health care (HHC)is skilled care such as a physical therapy visit or skilled nurse visit for wound care or monitoring vital signs. We never had aCNA visit through home health care. I was told a CNA could come along if the skilled therapist (PT) or nurse felt like they needed the cna help to assist with the service they were providing. Home health care has to be ordered by the physician and it is usually approved for a limited amount of time or visits. HHC is not a caregiver to provide custodial care like toileting, dressing , bathing, food preparation and housekeeping. This is non medical caregivers, available by private pay and some long term care policies provide benefit for home care services. Hospice is what other people have already described. The biggest learning point for me was that Home Health care visits are an hour visit a few times a week at most. That’s it. The caregiving and 24/7 supervision of an elder is not provided by home health care.
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Reply to Beethoven13
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NeedHelpWithMom May 14, 2024
I suppose that it depends on the HHC provider.

We had an RN that did the initial assessment on Mom, along with follow up care. We also had CNAs.

Just like hospice providers. they don’t all provide the same services.

Mom’s doctor always asked for feedback on the provider.

I was honest with her and told Mom’s doctor what I liked and didn’t like about the provider.
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Like already said, dementia itself is a terminal illness, and not sure why their doctor hasn't mentioned that.
There is no coming back from this horrible disease, and often bringing hospice on board just acknowledges that you know longer want to have to drag your parents to the doctor or have them treated for any other health issue that may arise, other than perhaps a UTI or some other kind of infection, as hospice will treat those.
Plus hospice is covered 100% under your parents Medicare while home health is not. Hospice will supply all needed medical equipment, supplies, and medications, and have a nurse come once a week to start to check your parents vitals and such, along with aides coming at least twice a week to bathe them. You will also have access to the hospice chaplain, social worker and volunteers, again all covered 100% under Medicare.
The purpose of hospice is to keep the patient comfortable and pain free until they leave this world for the next.
And while the rule of thumb to qualify for hospice care is that your doctor must think you'll be dead within the next 6 months, I'm here to tell you that often one does live much longer than that, and can remain under hospice care as long as there is continual decline.
My late husband was under hospice care in our home for the last 22 months of his life and there are several others on here whose loved one was under hospice care for 3 years, so you do what is best for your parents.
Best wishes.
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Reply to funkygrandma59
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Dementia is a terminal illness. There is no cure. My DH aunt has been on hospice for several years now. She is 97 and bed bound. She was on home health before. Are your folks using home health now? I ask because you wanted to know the difference. I was like you when I was asked if I wanted to switch services for aunt. I knew she wasn’t actively dying but she has steadily declined over time and it is suck a relief not having to take her to a doctors office. We do zoom meetings on occasion. Otherwise it is the medical staff with hospice.

The only thing she gave up by switching to hospice was physical therapy. Your parents can go off hospice and back on home health if you decide you don’t like hospice.
They can go to the hospital and come off of hospice to do so and then back on hospice if they need to.
Aunt has done this a couple of times.
You don’t have to take them off any meds if you don’t want to. You can keep their insurance and enable them to see other doctors if you want but most things can be done at home similar to home health. Hospice is easier on them as they are no longer required to go out to see a doctor to get their meds.
Aunt has the same nurse and same aide she had while on home health. She had HH at home, then was on hospice at home. She is now in a SNF and has the same care team.

The hospice team has the ability to bring in a hospital bed, wheel chairs, rollator, etc as needed and it can happen immediately. They also supply pull ups, wipes, etc.

Please know that you can change hospice companies at any time. If you get a nurse you don’t like you can ask the same company to switch the nurse out or you can switch companies. You might want to call a few companies in your area and see what services they provide. Some hospices have volunteers that can help.

Here are a couple of helpful links. Take the hospice quiz on the first link and it will explain in more detail.


https://hospicefoundation.org/Ask-HFA

https://apnews.com/article/jimmy-carter-roslaynn-hospice-year-anniversary-c93498575e806f1a1d83714cf8e5c0b6
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Reply to 97yroldmom
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NeedHelpWithMom May 14, 2024
We did this. We switched hospice providers.

Not because we were dissatisfied with their services, but mom’s nurse was switching to a different provider and she knew that mom had grown close to her, so she asked us if we wanted to switch to where she was going.

She was an incredible nurse who cared for mom very much and she was able to get mom into an end of life hospice care home where she received excellent care.
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Can you give us more information please?

Where are your parents living?

Are they alone in their home?

Do they live in your home? If so, do you have any additional help?

Home Health provides a nurse, an aide to assist with bathing if needed. They also provide physical and occupational therapists. Are your parents capable of doing weekly exercises with the therapists?

Hospice care is for people who are not looking for a cure. Your parents have dementia They are in their 90’s, so maybe their neurologist feels that it’s time for them to receive hospice care.

You can receive hospice care even if you are not actively dying. It is comfort care.

Hospice provides physical, emotional and spiritual support. They have a social worker and clergy on staff. A nurse will visit along with an aide to assist with bathing, etc.

Do you have any further questions?

If you choose hospice, please do thorough research and select a provider that best suits your needs. They don’t all provide the same services.

Wishing you and your family well.
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Reply to NeedHelpWithMom
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Hospice is a Medicare benefit that covers comfort care for those estimated to be in their last six months of life.
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Reply to PeggySue2020
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