Hosspice?

BethMimi

Hi All, here's hoping for a better 2022! 

I just read somewhere that Hospice can help me with resources, etc. even though Mom is not diagnosed as terminally ill.  I am going to contact our local office tomorrow but I'm just wondering what someone elses experience might be.   

Daughter80

I literally had the same question yesterday. I just want a case manager or a social worker that could understand where we are coming from and help us all as we go through this. I called the Alzheimer’s Association and they directed me to an agency for aging in my state. I will be calling them for resources. The person who helped me from AA was very nice and helpful. Maybe they could help you?  I looked up the criteria for getting hospice specifically for someone with Alzheimer’s and it said they had to not be able to get around without assistance, dress without help, bathe without help and had to be close to nonverbal (1-5 words a day), basically stage 7 or have other conditions, but I’m no expert to this at all so maybe others have experience getting hospice in as a resource.

King Boo

Hospice services are utilized when death is reasonably expected within the next 6 months.  It is NOT a source of primary care, but an extra layer of services that are appropriate to help a person and family prepare for "a good death" and best as possible final months.

Families have regular caregiving staff in place. 

 Hospice evaluates and moniters for pain; educates the family about approaching death, active dying; and a hospice nurse moniters the hospice patient for status changes.

There are firm guidelines from Medicare, recertification periods, etc.

The decision maker must be at the point where they are willing to let go of curative medical intervention, because hospice is about comfort care

King Boo

Hospice services are an add on, extra layer of care to prepare the patient and family for a good death.

One qualifies after a hospice evaluation when death is reasonably expected to occur within the next 6 months.

Beware.  PCP's often do not get the gist or requirements for hospice.    A PWD often has more than one medical condition occurring, a hospice nurse will evaluate the entire Gestalt.  My LO was quite verbal when we entered hospice services, but overall function was down, weakness increasing, sleeping increasing.  

Hospice is never a source of primary care, it supplements that which is already in place, whether it be at home or a facility.

sandwichone123

Having hospice come and evaluate can be very helpful even if your loved one doesn't qualify at this time. There is no charge for the evaluation and you will get a lot of information about what to watch for, what might lead to qualifying, and generally helpful information about care, resources, the path forward, etc. There really is no downside to calling.

King Boo

Hospice is not a source of primary, on going care.  Whether at home or in a facility, there are other caregivers that provide ongoing daily and nightly care.

Hospice is best thought about as an extra layer of services.  It helps patient and family prepare for 'a good death'.  One qualifies when there is reasonable anticipation of death within the next 6 months.

There is a lot of misinformation about hospice, even in the medical community.  If your loved has had a significant decline, an evaluation by a hospice nurse will determine if it is time.

Being non verbal or only having 5-6 words is one of those tibets of information that discourages hospice eligible patients from seeking services.  There is a whole Gestalt to hospice.  Although it can be a part of the'typical' profile for certain patients, dying is a multi-faceted condition.  

My LO was still very verbal when qualified for hospice.  

It does require that the decision makers be willing to let go of a 'curative' approach to care (i.e. ER visits, etc) and embrace a comfort care approach.  Being on hospice does not mean you do not get medical care, but you do not pursue 'curative' medical care.

• " ready to live more comfortably and forego treatments aimed at prolonging life".

Here's a link that might be helpful to read:

Hospice Foundation Of America - What is Hospice?

Rescue mom

My mom with dementia was in, and out, of hospice for a few years. 

The hospice will assess them to see if they qualify. In my experience, the PWD had to have some serious “physical” issues; just having dementia doesn’t usually qualify. But they can be admitted even though death is not imminent.

But if the PWD has things like mobility problems or serious weight loss, or loss of verbal skills, etc., then that can get them into Hospice. If those conditions improve, the Hospice may stop. 

My mom with dementia, for example, was admitted into Hospice for various things like weight loss and mobility loss, and got fabulous services. Then she gained weight and her other problems improved. So Hospice said she became  “too healthy” for hospice, although her dementia was still severe. In other words, her body got better, it was her mind that continued to fail. And hospice don't generally work with “just” broken brains. 

Some people with dementia have gone in and out of hospice for a few years. My mom was in and out four times, as I recall.

Keep in mind that hospice does not provide daily care of just being there to help with whatever. They have experts come in and help with specific problems. They do not do custodial care, or what some call “mom sitting”.  But they can provide care help and equipment (beds, wheelchairs, sometimes diapers and wipes, etc) that makes the patient more comfortable.

But different hospices can have different policies. The best thing is to talk with your local hospice(s) and get their assessment.

live in daughter

Hi BethMimi, here is my experience with hospice. My Mom had a rapid decline- increased lethargy, needed help with dressing, eating- we asked for a hospice consult. Turns out she had a urinary tract infection. She was evaluated for hospice and approved. She was on hospice for about 2 .5 years.

I think a hospice evaluation is worth looking into. Some of the services we appreciated with our Mom were: some meds were paid entirely thru hospice. The nurse assigned to my Mom handled all the medication issues- talking with MD about changes- adding new meds. When my Mom had skin issues we had access to a wound care nurse. All the nurses and NP came to my Mom's apartment- no need for us to take her out.

My Mom had an aide that helped my Mom with dressing in the morning. This was provided thru hospice services. We had supplies such as diapers, pads, etc. provided by hospice.

Equipment was also provided by hospice. We had a wheel chair , Sit to Stand machine, bedside table and a hoyer lift. 

All of this helped greatly in caring for my Mom to ensure she was comfortable and safe.

Hope this helps.