Dad Update (new update in first post on 12/13) (and 12/30)

[LifeLovePassion]

With my dad they would not transfer if they thought death was going to happen within 48 hours as it is too stressful.

If you are able to bring him home and get some caregivers, hospice does provide durable medical equipment like a bed that raises and lowers and has safety rails. They also provide toileting aids/supplies. 

I'm so sorry, Dawn. 

[kbutton]

Praying that he doesn’t suffer long. You are doing a good job. 

[catz]

Inpatient hospice that was adjacent to a nursing home was wonderful for my grandmother and my mother as her only living child at the time.  I hope he doesn't suffer long and pain and anxiety is managed well for him.  I'm so sorry. 

[Eos]

I am holding you in the light, Dawn, and hope for a peaceful passing.  Your thoughtful care of him as you've described here is a gift of knowledge to all of us with elderly parents.

[DawnM]

13 hours ago, catz said:

Inpatient hospice that was adjacent to a nursing home was wonderful for my grandmother and my mother as her only living child at the time.  I hope he doesn't suffer long and pain and anxiety is managed well for him.  I'm so sorry. 

Did you private pay?

Yesterday when I spoke to the palliative care guy, he said he doesn't think my dad will qualify for in-patient hospice but if they don't, a private pay hospice may be available and to ask them about that.   I assume it is somewhere between 10k-15k per month, but given the short time he will be there I don't mind paying for peace of mind for him and for us.

[LifeLovePassion]

The inpatient hospice (where my dad would have gone if he had had more time) was about $400/day for care. 

[BusyMom5]

I'm sorry Dawn, prayers for peace and understanding. 

[Catwoman]

I don't have any info at all, but I'm still praying for your dad and your whole family. 

Sending lots of hugs.

[Scarlett]

Any news @DawnM?

[Annie G]

On 12/14/2022 at 9:46 AM, DawnM said:

Did you private pay?

Yesterday when I spoke to the palliative care guy, he said he doesn't think my dad will qualify for in-patient hospice but if they don't, a private pay hospice may be available and to ask them about that.   I assume it is somewhere between 10k-15k per month, but given the short time he will be there I don't mind paying for peace of mind for him and for us.

What criteria qualifies someone for inpatient hospice? I can’t figure out why he wouldn’t qualify. 

[catz]

6 minutes ago, Annie G said:

What criteria qualifies someone for inpatient hospice? I can’t figure out why he wouldn’t qualify. 

Right!?  That seems crazy to me for someone in this condition with a history of falls and the bone cancer.  It really enrages me.  

It was fully covered for my grandmother.  She died in 2011.   She was in a nursing home/rehab prior - she was actually going to be moving to assisted living.  But took a turn, was in the hospital briefly and moved to hospice.  

[Catwoman]

1 hour ago, Scarlett said:

Any news @DawnM?

I'm checking in, too!

[DawnM]

21 hours ago, LifeLovePassion said:

The inpatient hospice (where my dad would have gone if he had had more time) was about $400/day for care. 

Well, $12k is much better than $26k, we would do that.

thank you

[DawnM]

4 hours ago, Annie G said:

What criteria qualifies someone for inpatient hospice? I can’t figure out why he wouldn’t qualify. 

They said he can swallow and eat.  🤔

[DawnM]

The social worker got involved today.  EVERY SINGLE PERSON asks me the same questions.   It is making me crazy.

• What is your understanding of what is going on with your dad?
• What is your plan going forward?
• What would you like to happen going forward?
• Is your main concern pain?

I give the same answers:

• He is dying of bone cancer and in a great deal of pain.
• I don't have a plan, I need your help to figure one out.
• I would like him to go into a hospice residential facility
• My main concern is not pain, it is safety.

[Melissa in Australia]

Huge hugs

Thinking of you

[Laura Corin]

37 minutes ago, DawnM said:

The social worker got involved today.  EVERY SINGLE PERSON asks me the same questions.   It is making me crazy.

• What is your understanding of what is going on with your dad?
• What is your plan going forward?
• What would you like to happen going forward?
• Is your main concern pain?

I give the same answers:

• He is dying of bone cancer and in a great deal of pain.
• I don't have a plan, I need your help to figure one out.
• I would like him to go into a hospice residential facility
• My main concern is not pain, it is safety.

What does safety mean to you? Have they been helping you to work out what it looks like?

[DawnM]

1 minute ago, Laura Corin said:

What does safety mean to you? Have they been helping you to work out what it looks like?

He has fallen 3 times this past week.   Safety means he is checked on enough that if he falls, they come quickly or they prevent him from falling.   

They keep saying, "Hospice would be best" along with, "I don't think he qualifies."

 

[Lori D.]

2 minutes ago, DawnM said:

They keep saying, "Hospice would be best" along with, "I don't think he qualifies."

 

Can you do a little gentle pushback?

"I agree. Hospice would be best. How can we make that happen?"

"Yes, hospice would be ideal. What can I provide to you or help with to get that transition to hospice to happen more quickly?"

"That is great advice about hospice being best for him. What could you/the hospital include in his chart/records that will make that clear to the hospice, so we can move forward in transferring him there?"

[Terabith]

4 minutes ago, DawnM said:

He has fallen 3 times this past week.   Safety means he is checked on enough that if he falls, they come quickly or they prevent him from falling.   

They keep saying, "Hospice would be best" along with, "I don't think he qualifies."

 

I am so confused about the not qualifying for hospice.  

[lauraw4321]

1 minute ago, Terabith said:

I am so confused about the not qualifying for hospice.  

Same. Advanced cancer seems like it would be qualifying. 

[Laura Corin]

9 minutes ago, DawnM said:

He has fallen 3 times this past week.   Safety means he is checked on enough that if he falls, they come quickly or they prevent him from falling.   

They keep saying, "Hospice would be best" along with, "I don't think he qualifies."

 

Do they have floor sensor pads so an alarm sounds when he gets up? Those were useful at times when Mum was confused and needed help.

[kbutton]

19 minutes ago, DawnM said:

He has fallen 3 times this past week.   Safety means he is checked on enough that if he falls, they come quickly or they prevent him from falling.   

They keep saying, "Hospice would be best" along with, "I don't think he qualifies."

 

Sigh. I hate it when people do this--it seems like they aren't fluent or efficient, but maybe they are just hand-wringing out loud instead of verifying.

My son needed pulmonary rehab. Everyone said so, including the pulmonologist, who also said something confusing about qualifying. I finally asked what qualifies a person, and he gave me the name of the testing. I asked if we could schedule it, and he said yes. I have NO IDEA what the brain fart was, but that's all it took. 

13 minutes ago, Lori D. said:

Can you do a little gentle pushback?

"I agree. Hospice would be best. How can we make that happen?"

"Yes, hospice would be ideal. What can I provide to you or help with to get that transition to hospice to happen more quickly?"

"That is great advice about hospice being best for him. What could you/the hospital include in his chart/records that will make that clear to the hospice, so we can move forward in transferring him there?"

Excellent idea.

[Annie G]

59 minutes ago, DawnM said:

They said he can swallow and eat.  🤔

My MIL could do both of those, and she qualified.  She had advanced dementia, a broken hip, and extensive lung cancer. 
I encourage you to go further if they ask you those questions again.  It’s not just the cancer, it’s all of the things.  If the cancer doesn’t kill him, the dementia could. They lose ability to swallow.   Your concern is for his safety, but also his dignity, which is a huge goal of hospice. 
I’m so confused about the swallow and eat qualifier. I didn’t realize that hospice was so different state to state. My experience was in Georgia. 
I’m so sorry- having everyone ask you the same questions without providing any assistance is awful. They’re the experts- you’re counting on them to guide you through this!!

[Innisfree]

17 minutes ago, DawnM said:

They keep saying, "Hospice would be best" along with, "I don't think he qualifies."

Are they talking about inpatient hospice specifically? Or any sort of hospice? My understanding was that qualifying for hospice here, at least, simply meant that the patient was expected to die within six months (or possibly some other phrasing: likely to die, etc.).

It may be possible to manage safety without inpatient hospice. Can he get out of bed if the rails are up?

[CTVKath]

I'm so sorry about your Dad. I hope they can figure out what will be best for him and for you.

[Storygirl]

I'm very sorry that things seem to be going around in circles. Perhaps ask them for the criteria for hospice admission in writing, then go over the criteria with them. A quick google search indicates that a physician needs to sign off that the patient is expected to live six months or less. Has an oncologist given a prognosis?

[DawnM]

56 minutes ago, Lori D. said:

Can you do a little gentle pushback?

"I agree. Hospice would be best. How can we make that happen?"

"Yes, hospice would be ideal. What can I provide to you or help with to get that transition to hospice to happen more quickly?"

"That is great advice about hospice being best for him. What could you/the hospital include in his chart/records that will make that clear to the hospice, so we can move forward in transferring him there?"

Oh, I have.   They said THEY don't make the decision but hospice has very specific criteria and he doesn't meet them.   They ARE referring him, but they told me not to expect him to qualify.

I have asked for private pay info as well.

[DawnM]

52 minutes ago, Laura Corin said:

Do they have floor sensor pads so an alarm sounds when he gets up? Those were useful at times when Mum was confused and needed help.

No, and even if they did, they say he gets up and they can't run to him because they are busy with someone else.   He won't wait for them.

[DawnM]

Just to clarify again......I am asking for IN PATIENT hospice care.  He DOES qualify for a 6 hours per week hospice person to come in to wherever he is already living, but he does NOT qualify for in patient hospice care 24/7.

[Pawz4me]

12 minutes ago, DawnM said:

Just to clarify again......I am asking for IN PATIENT hospice care.  He DOES qualify for a 6 hours per week hospice person to come in to wherever he is already living, but he does NOT qualify for in patient hospice care 24/7.

My guess is the issue is lack of beds. Even in bigger metropolitan areas there are only so many of those beds to go around, so they have to be triaged. As far as I know priority is given to patients whose pain can’t be managed in a home, but I could be wrong. 

Edited December 15, 2022 by Pawz4me

[mlktwins]

4 minutes ago, DawnM said:

No, and even if they did, they say he gets up and they can't run to him because they are busy with someone else.   He won't wait for them.

I'm so sorry you are dealing with all of this. I believe most places only check on patients every 2 hours. It is very sad to say, but he really needs to be in a bed with rails and diapers. That is the only way to keep him safe without 24/7 care given his condition. 

I don't understand the eating and swallowing thing either. Both of my in-laws were able to chew and swallow when hospice came in. They needed help with getting it to their mouths though 🤷‍♀️.

Our hospice checked in each day, the nurse came out regularly, and hospice caregivers came in twice a week to help our paid 24/7 caregivers bathe them, etc. All supplies were taken care of - hospital bed, diapers, lotion, meds, bandages, anything that was needed, it was covered under the cost of hospice. This was at home though.

[DawnM]

13 minutes ago, mlktwins said:

I'm so sorry you are dealing with all of this. I believe most places only check on patients every 2 hours. It is very sad to say, but he really needs to be in a bed with rails and diapers. That is the only way to keep him safe without 24/7 care given his condition. 

I don't understand the eating and swallowing thing either. Both of my in-laws were able to chew and swallow when hospice came in. They needed help with getting it to their mouths though 🤷‍♀️.

Our hospice checked in each day, the nurse came out regularly, and hospice caregivers came in twice a week to help our paid 24/7 caregivers bathe them, etc. All supplies were taken care of - hospital bed, diapers, lotion, meds, bandages, anything that was needed, it was covered under the cost of hospice. This was at home though.

Yes, he qualifies for the services you are talking about with hospice.   He just doesn't qualify for residential hospice at a hospice care facility.

[prairiewindmomma]

With the hospices we have worked with, their inpatient facility is tiny and you pretty much have to have uncontrollable pain with active dying symptoms (labored breathing, organ shutdown, etc.) to hope to qualify. It is very common, however, to be at a nursing home under palliative care/hospice oversight. The nursing home provides the care but the hospice manages quality of life medications and medical decision making. Does that make sense? 

[itsheresomewhere]

Just throwing this out there-  see if you have a Jewish Hospice near you.   Some are open to all not just those who are Jewish and are excellent. Honestly, the care they gave my friend’s mom was beyond any love you could imagine.  I forgot how they chose this but it was something along the lines of not having any availability in the hospital program near them.  I don’t know if all are like this but her mom had a room that was like a small studio apartment that gave them the privacy yet had all help they needed.  Those two weeks meant a lot to them both there.   She did go in still eating somewhat but declined a few days after arriving.    

[DawnM]

6 minutes ago, prairiewindmomma said:

With the hospices we have worked with, their inpatient facility is tiny and you pretty much have to have uncontrollable pain with active dying symptoms (labored breathing, organ shutdown, etc.) to hope to qualify. It is very common, however, to be at a nursing home under palliative care/hospice oversight. The nursing home provides the care but the hospice manages quality of life medications and medical decision making. Does that make sense? 

Yes, I know that.   Thank you.

[TexasProud]

7 hours ago, catz said:

Right!?  That seems crazy to me for someone in this condition with a history of falls and the bone cancer.  It really enrages me.  

It was fully covered for my grandmother.  She died in 2011.   She was in a nursing home/rehab prior - she was actually going to be moving to assisted living.  But took a turn, was in the hospital briefly and moved to hospice.  

 

1 hour ago, Terabith said:

I am so confused about the not qualifying for hospice.  

Ok, as Dawn mentioned he does qualify for hospice.  You just have to have a diagnosis like terminal cancer and agree not to be treated for it. But he only qualifies for 6 hours of hospice.  He needs 24/7 care. That was the issue with my mom as well.  They said I had to hire caregivers to provide that.  When she was near the end, the hospice workers said that in order to qualify for 24/7 care according to the government, she had to not be able to have her pain controlled with us giving her pain meds every hour.  I have a feeling the being able to eat and drink also would have been a possibility, though I don't think she could have at the end. She was barely conscious, but didn't meet the criteria for 24/7 hospice care. 

That is the problem.  Yes, he is a fall risk, but that is not a hospice concern.  I think the government regulations for hospice care have gotten much more rigid than they were ten years ago. 

[DawnM]

And as far as the bed rails, the skilled nursing told me we can't have them, they are considered a restraint in NC.   The hospitals can have them, but not the nursing homes.

[mlktwins]

Can you bring him home with hospice and 24/7 care? Especially if you know it won’t be long? He will need to stay in bed! Would bedrails be allowed in that situation? 
 

I guess I get it, but let’s just let the old people keep falling on the floor 😢.  I would rather my dad restrained with bedrails than falling on the floor and going to the hospital all the time. That is crazy.

 

I truly am sorry you and your dad are dealing with this situation.

[Ottakee]

2 hours ago, DawnM said:

The social worker got involved today.  EVERY SINGLE PERSON asks me the same questions.   It is making me crazy.

• What is your understanding of what is going on with your dad?
• What is your plan going forward?
• What would you like to happen going forward?
• Is your main concern pain?

I give the same answers:

• He is dying of bone cancer and in a great deal of pain.
• I don't have a plan, I need your help to figure one out.
• I would like him to go into a hospice residential facility
• My main concern is not pain, it is safety.

Gently asking here if possibly they keep asking you if pain is your main concern as THAT is the ticket to inpatient hospice.  If you say, yes, pain control is my biggest concern that might qualify him for inpatient.

sometimes when they ask you a question repeatedly it is because they just need you to say the magic words.   Frustrating but true.

worth a try

[Innisfree]

3 minutes ago, DawnM said:

And as far as the bed rails, the skilled nursing told me we can't have them, they are considered a restraint in NC.   The hospitals can have them, but not the nursing homes.

Home care could end up being your best option, then. It does require finding kind, competent people to look after him, but hospice would provide the bed and other equipment, and you might be able to use the rails. The expense might not be any more than 24 hour care at a nursing home. When we did it, it was a good bit cheaper than the costs you’ve mentioned, though that was a few years ago now. It sounds like 24 hour care somewhere is necessary. Or you could bite the bullet, pay for 24 hour care at the nursing home, and not have the management responsibility and the problem of finding staff.

 I hope you can find a solution that will keep him comfortable and give you peace with your choices.

[TexasProud]

7 minutes ago, Ottakee said:

Gently asking here if possibly they keep asking you if pain is your main concern as THAT is the ticket to inpatient hospice.  If you say, yes, pain control is my biggest concern that might qualify him for inpatient.

sometimes when they ask you a question repeatedly it is because they just need you to say the magic words.   Frustrating but true.

worth a try

No pain is not the ticket for inpatient.

3 minutes ago, Innisfree said:

Home care could end up being your best option, then. It does require finding kind, competent people to look after him, but hospice would provide the bed and other equipment, and you might be able to use the rails. The expense might not be any more than 24 hour care at a nursing home. When we did it, it was a good bit cheaper than the costs you’ve mentioned, though that was a few years ago now. It sounds like 24 hour care somewhere is necessary. Or you could bite the bullet, pay for 24 hour care at the nursing home, and not have the management responsibility and the problem of finding staff.

 I hope you can find a solution that will keep him comfortable and give you peace with your choices.

Yes, that is what we did. We hired caregivers to give 24/7 care and the hospice people came by for just a few minutes each day.  Caregivers were wonderful.  Hospice...not so much.  But, I will say, one thing hospice DID do well was that they did get all the equipment: hospital bed, bedside commode bed rails, etc. And yes, hospice covered all of that equipment. And they got it super fast. 

[Mrs Tiggywinkle Again]

26 minutes ago, DawnM said:

And as far as the bed rails, the skilled nursing told me we can't have them, they are considered a restraint in NC.   The hospitals can have them, but not the nursing homes.

It is the same in NY.  They cannot use bed rails because it is considered a restraint and the nursing homes cannot use restraints(hospitals can under certain circumstances).  They can have floor mats or bed alarms, but truthfully the places are so understaffed that no one is rushing right down to a bed alarm to remind someone to stay in bed.

Hospice is so variable based on what is available where you are.   Here, you can get in home hospice for adults when they have six months or less to live and have ceased treatment.  The nurse comes out a few times a week, they manage medications, and there is no physical caregiving help offered or paid for.  They fully expect the family to do that or to hire someone.  There is no inpatient hospice anywhere, though they can and do arrange for an inpatient hospice respite for 48 hours IF there is a bed in a hospital open. There generally isn’t.

Other than that, there is a tiny hospice home run by a non profit.  It was started by a family who used hospice for their grandfather but had no place he could have the 24/7 care he needed.  They have six beds and are the only hospice home in a four county radius. It is a beautiful place, staffed round the clock with RNs and aides.  However, since it is only six beds, the criteria for acceptance is high, and usually means death is imminent in days.  One of their criteria is that the patient is no longer eating or drinking much. Another criteria amounts to the patient being bed bound, so they aren’t trying to manage falls, which they simply don’t have the staff to do.  I expect they heavily medicate as well.

Edited December 16, 2022 by Mrs Tiggywinkle Again

[Annie G]

32 minutes ago, DawnM said:

And as far as the bed rails, the skilled nursing told me we can't have them, they are considered a restraint in NC.   The hospitals can have them, but not the nursing homes.

That’s baffling. It’s a safety issue. When we brought MIL home, hospice arranged for a hospital bed that had….bed rails. 
That stinks that NC considers them a restraint. 

[TechWife]

45 minutes ago, DawnM said:

And as far as the bed rails, the skilled nursing told me we can't have them, they are considered a restraint in NC.   The hospitals can have them, but not the nursing homes.

Here is the applicable law. if the only reason is to prevent him from getting out of bed, then they are restraints. They can, however, use a bed alarm so that they are aware when he does get up. The response time on that will probably depend entirely on staffing, TBH. 

http://reports.oah.state.nc.us/ncac/title 10a - health and human services/chapter 13 - nc medical care commission/subchapter f/10a ncac 13f .1501.pdf

[lauraw4321]

2 hours ago, DawnM said:

Yes, he qualifies for the services you are talking about with hospice.   He just doesn't qualify for residential hospice at a hospice care facility.

Ah. Skilled nursing facility with hospice overlay. That’s what he needs. 

[Terabith]

26 minutes ago, lauraw4321 said:

Ah. Skilled nursing facility with hospice overlay. That’s what he needs. 

Except skilled nursing can't keep him safe.

[DawnM]

2 hours ago, Ottakee said:

Gently asking here if possibly they keep asking you if pain is your main concern as THAT is the ticket to inpatient hospice.  If you say, yes, pain control is my biggest concern that might qualify him for inpatient.

sometimes when they ask you a question repeatedly it is because they just need you to say the magic words.   Frustrating but true.

worth a try

Maybe, but I don't think so because they ask that before they know I want him in a hospice place.   But maybe.

[DawnM]

1 hour ago, lauraw4321 said:

Ah. Skilled nursing facility with hospice overlay. That’s what he needs. 

No, we already know he qualifies for that.   That is not what he needs.   It may end up being what he gets, but that is not what I am asking for.

46 minutes ago, Terabith said:

Except skilled nursing can't keep him safe.

exactly.

Although I will say, after thinking about things more tonight.....I am not sure he can even try to stand up at this point, so it is entirely possible he would be ok, but the dementia worries me in the situation as well.

[DawnM]

1 hour ago, TechWife said:

Here is the applicable law. if the only reason is to prevent him from getting out of bed, then they are restraints. They can, however, use a bed alarm so that they are aware when he does get up. The response time on that will probably depend entirely on staffing, TBH. 

http://reports.oah.state.nc.us/ncac/title 10a - health and human services/chapter 13 - nc medical care commission/subchapter f/10a ncac 13f .1501.pdf

We were not allowed to put them on dad's bed in the nursing home.   They told us they would not allow them.

And yeah, the response time has not been great for dad, even when he has pulled that cord for help.   

Sigh.