I'm upset. My dad is dying of esophagus cancer and being sent home with 2 days of hospice care, 60 min a day. What do we do the rest of time?

Medicare only pays for Rehab for a certain length of time. I will assume here Dad was in Rehab to get his strength back after a hospital stay. Not there for his cancer. Unless Dad was there 100 days, he did not run out of time. Rehab is physical therapy not Skilled Nursing. If Dad is too weak to do PT Medicare will not pay for him to stay in Rehab.

"they sending him home with 2 days of hospice help" This comment I do not understand. Hospice does not just come in for just 2 days if Dad is dying of his cancer. A Nurse does come in to evaluate then admit him. In home Hospice the family does most of the work or hires help. A Nurse comes once or twice a week. An aide comes 2 or 3x a week to bathe a client. Thats usually an hour. Depending on the Hospice you maybe able to request more aide time. Any durable equipment Dad needs, like a hospital bed, Hospice supplies. They pay for the medications used for comfort, like Morphine and Ativan. They supply Depends, wipes and chux. You should have gotten information on what they cover. Nurse is available 24/7 by phone.

In hindsight, what you could have done was say it was an unsafe discharge to send him home. No one to care for him. He then could have been sent to a Skilled Nursing facility on hospice. The problem is Medicare does not pay for the facility only for Hospice so the cost would come out of granddads pocket unless you could get Medicaid to pay if grandparents have no money.

So what you could do now is hire someone to help you or see if Dad can be placed in Skilled nursing. When it comes to Hospice homes, I don't think Medicare pays until the person is actively dying.

There was a LTC facility in city I live near that took in hospice patients, one area or wing of the facility, and cared for them like an inpatient hospice facility would. Not sure how common this is. Maybe just dependent on the facility itself.

With hospice you can get 24 hour care at home - which is all some of the hospice companies offer - most don't have an inpatient facility.

The 24 hour at home care will only be available at the very end of life. There are 5 respite days available - take them now and as fast as things are going with his cancer, he may be at the 24 hour home status by the end of the 5 days.

What you’re describing is the normal way in home hospice functions. It was never intended to provide full time care, that is on the family to provide. I did this with my dad and to say it was intense is an understatement. See if your dad’s community has an inpatient hospice house, a much more hands on approach to having help. We found out about it too late. Otherwise, I was left hiring private caregivers from a list the hospice agency had, not employees of theirs, but people they’d worked with and knew to be good. Each had their own availability and rate, and each was terrific, a huge help. Sounds like stepmother either needs a different plan for her care, or soon will. I hope someone is looking out for her as her life is going to shift soon. I wish you peace in this, knowing how hard it is

our social worker said..
If he doesn't ask for food or water, do not give it.. Do not prolong his suffering.
The end fo life drugs will help him go into a sleep... coma.. I was stupid.. I asked our best friend about conditions and his sleeping if he was in pain... Friend said he didn't think people were experiencing pain in a "coma".
I honestly didn't think he was in a coma... but ya..

Sleeping Beauty was in a "Deep Sleep"... coma... ( I finally got it... )

You step mom may need more help... get the chaplain on board, musician, friends, for her. hospice is for the family... not just him... talk to hospice social worker... mom needs hospice too.....she needs support....seriously .... call her doctor... talk to anyone who will listen...

You should consider hiring a caregiver for 4 hours daily or whatever you need or can afford. Talk to an agency... Get a person who can lift, turn, maneuver him with ease. I finally got the one who did this with ease and efficiency... He said good morning to me.. and then his eyes were focused on his patient... Washed his face, hair, cleaned him up, rotated him, changed him, and made sure he was turned every 2 hours.. such professionalism, honest caring, respect, and compassion...
this added layer of caregiving helped me more than I expected... He took over the medication.. the time and disbursement, so we don't miss a dose (that was not good... :( I thought every 3 hours... No... one drug 1 hour.. layer it up with the other the 2nd hour, and then the 3rd hour with drug #3.. and repeat...

My hospice offered: hospice musician, hospice nurse, hospice chaplain (spiritual & emotional support),hospice bathing/hygene aide..

My friend insisted I hire a caregiver... then she realized I wasn't sleeping at all, so she made me hire a night caregiver.. she was concerned because I had a 2 hour window without any caregiving... The night caregiver only lasted one night... In the morning he said he will see me the following evening.. I sadly said, "I hope not"..

That 2 hour window was when my spouse passed away... Peace.... We needed that 2 hour window... The last breath....

Please discuss this with family/friends get an idea of how much added time you need and ask your hospice if they can suggest a caregiving agency in your area.

Note, I only needed this added layer of caregiving for a couple of weeks. I probably would not have done it without my friend realizing this was more than I could truly handle...

Heck.. aren't we all wannabe superheroes? Well, I failed...... I will blame it on that thing that flaps around my back and gets caught in fans and whirlygigs, or my ego was deflated. I needed help.. my superhero, my friend rescued me by letting me know I needed more help.


Another good friend always said: Death Is Okay..
He was right... Death is okay... It is a part of life...

I am learning... make peace... be kind. forgive and ask to be forgiven..

And when they pass away... keep on talking to them.. Keep on remembering..
Remember the fun times...
forgive the bad ones... replace with fond memories
I wish I did this years ago...
And LIGHT A CANDLE... I don't know why... It seems calming to me... except when the cat gets too close... yikes...
you will get more suggestions and advice.. take care.. Prayers are with you.

I'm so sorry to hear this. The system and process is broken

I’m so sorry that you are in this situation. We are extremely fortunate here that we have hospice organizations that have end of life care homes.

Can you apply for Medicaid for your dad and stepmom? It would be great if they could enter a skilled nursing home together.

This is all that Hospice currently does give you.
Several bed baths a week and one RN visit for less than an hour, call from clergy, medication and instructions, call from Social Worker.

Time to contact the hospice social worker. Tell them that your mother cannot care for your dad in these conditions and he needs in facility hospice care or placement in long term care with hospice visits added.

There is no such thing as 24-7 care at home. Not for anyone and not unless you pay for it. My friend came home and died in two months with hospice care, but she had to hire two women, each taking a 12 hour shift, 24 hours a day and 20.00 an hour (which is really low pay for this work). The money flooded out, so I am in hopes that your parents have savings for this.

If your mother cannot care for Dad you may need to call EMS for transit back to medical care, and from there placement in LTC for your Dad.
Please don't consider tube feedings or peg or IV feedings. It will prolong this for months. I am so very very sorry for this dire diagnosis.

Call Hospice at once and say you need 24/7 care. Ask what options are available to you. Ask to speak to their social worker.

First you should say the following.
"Discharge to his home is not a safe discharge. There is no one that can SAFELY care for him at home."
they will work with the Hospice to place him in either the Hospice In Patient Unit or in a facility that they have a relationship with and they will provide care there. If there is no bed for him in the facility then they will keep him in the In Patient Unit or in the Hospital until there is a bed for him.
You need to be VERY vocal in the fact that to discharge him to home would be unsafe.

Hospice itself does not provide 24/7 care.

You tell them because that his wife has dementia there is no caregiver at his home and this is an UNSAFE DISCHARGE. They will try promising the moon and if that doesn't work they may try threats but you need to hold firm that he can not be discharged to his home. It's their responsibility to find a placement.

Doesn't he have SS income or other pension, investments, assets to pay for more hospice? Who is his FPoA?