Notices

Hospice Questions

Old 05-04-2021, 10:51 AM
  #1  
Senior MemberCaptains Club Member
Thread Starter
 
Join Date: Aug 2006
Location: Central Florida
Posts: 8,400
Received 1,008 Likes on 548 Posts
Default Hospice Questions

I know many of you have gone through this, so here goes.

My parents live together in a nice Assisted Living Facility. My dad is 90 and has had a few falls and isn't doing well overall. Mom is 85 with Alzheimer's but they are still living together.

My sister is meeting with the doctor and medical director today, and she thinks they are going to suggest Hospice gets involved with my dad's care, but with him staying at the ALF. They may also suggest he be moved to a rehab hospital, but that would really be difficult for my mom. It's a tough situation. I really don't know a lot about Hospice in situations like this. I've only been involved when the patient is within days of passing.

Does anyone have experience with this?
Old 05-04-2021, 10:56 AM
  #2  
Senior Member
 
Join Date: Apr 2014
Location: Atlanta / Islamorada
Posts: 1,908
Received 550 Likes on 332 Posts
Default

We used Vitas Healthcare Hospice in Florida for my Dad. A few weeks in home and then a few weeks of inpatient at their facility. Not exactly your situation but we had a good experience.
Old 05-04-2021, 10:56 AM
  #3  
Admirals Club Admiral's Club Member
 
Join Date: Sep 2011
Posts: 849
Received 193 Likes on 93 Posts
Default

Your dad should be allowed to stay where he is. Hospice takes over all care and costs.
This happened with my mom, and when I researched the ALF I told them this was her last move. I asked them about her outgrowing their level of care. They said they could provide thru end of life. GOOD LUCK as much as it sucks just do the best you can. I found out lots of people on here dealing with the same thing.
Old 05-04-2021, 11:03 AM
  #4  
Senior Member
 
Join Date: Jan 2015
Location: Central Calif
Posts: 400
Received 145 Likes on 64 Posts
Default

The Hospice folks are just an amazing group of human beings. As Thefever said they should be able to take over all care. Your family is in my thoughts.
Old 05-04-2021, 11:10 AM
  #5  
Senior MemberCaptains Club Member
 
Join Date: Feb 2002
Location: Saugus, Ma. USA
Posts: 12,751
Received 1,905 Likes on 1,064 Posts
Default

Hospice is palliative ("comfort care") care only.
It's all about making people NOT suffer.

Without knowing all of the specifics, it seems like if you have the option of hospice while staying at the ALF, that would be the best bet. Having him there would be the least disruptive for your mom, and palliative care would be the least suffering for dad.

I know that this isn't easy, and making the patient comfortable often conflicts with what makes the family members comfortable. They administer the right amount of the right medication to provide comfort. No one wants to see dad looking listless/out of it, but if withholding drugs to keep him alert adds to his discomfort, they will choose his comfort over your unease. I hope I'm describing it ok.

It sucks all around, but looking back you'll rest a little easier knowing you did what was best for them vs what was best for you and your family members.

Old 05-04-2021, 11:16 AM
  #6  
Senior MemberCaptains Club Member
Thread Starter
 
Join Date: Aug 2006
Location: Central Florida
Posts: 8,400
Received 1,008 Likes on 548 Posts
Default

Originally Posted by jobowker View Post
Hospice is palliative ("comfort care") care only.
It's all about making people NOT suffer.

Without knowing all of the specifics, it seems like if you have the option of hospice while staying at the ALF, that would be the best bet. Having him there would be the least disruptive for your mom, and palliative care would be the least suffering for dad.

I know that this isn't easy, and making the patient comfortable often conflicts with what makes the family members comfortable. They administer the right amount of the right medication to provide comfort. No one wants to see dad looking listless/out of it, but if withholding drugs to keep him alert adds to his discomfort, they will choose his comfort over your unease. I hope I'm describing it ok.

It sucks all around, but looking back you'll rest a little easier knowing you did what was best for them vs what was best for you and your family members.
I understand what you are saying. He is in pain right now after a fall last week.
Old 05-04-2021, 11:24 AM
  #7  
Senior MemberCaptains Club Member
Thread Starter
 
Join Date: Aug 2006
Location: Central Florida
Posts: 8,400
Received 1,008 Likes on 548 Posts
Default

What really sucks is that he is still pretty good cognitively.
Old 05-04-2021, 11:30 AM
  #8  
Senior MemberCaptains Club Member
 
Join Date: Feb 2002
Location: Saugus, Ma. USA
Posts: 12,751
Received 1,905 Likes on 1,064 Posts
Default

My dad had brain cancer. It was inoperable, and radiation was a one-time option have gave him another 6 months but cut his IQ in half. His body couldn't tolerate the chemo.

So prior to hospice when he wanted a cigarette, I gave him one. Loaded him up into my truck, we drove down to the beach (his favorite spot), and he stunk up the interior of my truck. He'd smoke maybe a quarter of one and then forget about it. I took a raft of crap from some family members about how could you possibly give a cigarette to someone dying of brain cancer! But years later, once the emotion was out of it, one of them admitted to me that they have no idea why they were so vehement that he didn't have any cigarettes at that point. They even proceeded to thank me for making his remaining time a little bit more comfortable.

Get rid of the pain and make him comfortable. While it's not ideal, it's probably the least shitty option. I'm sorry you have to go through this.
Old 05-04-2021, 11:45 AM
  #9  
Admirals Club Admiral's Club Member
 
Join Date: Aug 2010
Location: New Hampshire
Posts: 5,237
Received 1,220 Likes on 625 Posts
Default

Originally Posted by Sprockets View Post
I know many of you have gone through this, so here goes.

My parents live together in a nice Assisted Living Facility. My dad is 90 and has had a few falls and isn't doing well overall. Mom is 85 with Alzheimer's but they are still living together.

My sister is meeting with the doctor and medical director today, and she thinks they are going to suggest Hospice gets involved with my dad's care, but with him staying at the ALF. They may also suggest he be moved to a rehab hospital, but that would really be difficult for my mom. It's a tough situation. I really don't know a lot about Hospice in situations like this. I've only been involved when the patient is within days of passing.

Does anyone have experience with this?
I had to do that with my dad. He was terminally ill but able to get by with activities of daily living in his own house so in-home care suited him well. When the end is imminent, within two or three weeks, they'll move him to inpatient care. It's a really nice service level that they seemed to manage well.

I don't know the details of your situation but at 90 years old and in the face of hospice care you should talk to your dad about his situation and make sure you know what HE wants....not what you, your sister, or your mom wants. Chances are there's not a lot of rehabilitation that will enhance his quality of life.

It sucks. Do your best to be an advocate for your dad, and best wishes.


Old 05-04-2021, 11:49 AM
  #10  
Admirals Club Admiral's Club Member
 
Join Date: Aug 2010
Location: New Hampshire
Posts: 5,237
Received 1,220 Likes on 625 Posts
Default

Originally Posted by jobowker View Post
Hospice is palliative ("comfort care") care only.
It's all about making people NOT suffer.

Without knowing all of the specifics, it seems like if you have the option of hospice while staying at the ALF, that would be the best bet. Having him there would be the least disruptive for your mom, and palliative care would be the least suffering for dad.

I know that this isn't easy, and making the patient comfortable often conflicts with what makes the family members comfortable. They administer the right amount of the right medication to provide comfort. No one wants to see dad looking listless/out of it, but if withholding drugs to keep him alert adds to his discomfort, they will choose his comfort over your unease. I hope I'm describing it ok.

It sucks all around, but looking back you'll rest a little easier knowing you did what was best for them vs what was best for you and your family members.
You did great.

Sounds like you have also been down this road. My condolences..


Old 05-04-2021, 11:55 AM
  #11  
Senior Member
 
Join Date: Feb 2019
Location: Delray Beach, FL
Posts: 199
Received 47 Likes on 29 Posts
Default

My father was really bad with Lewy Body dementia in a assisted living facility, he fell at some point where he was brought to the local hospital for observation, when he was there hospice got involved and determined he needed their care. Once back at the assisted living facility they came twice a week to check up on him and assist in his bathing needs. Once he got worse they came everyday until he passed.

I would just follow their advice, they really do a great job with the transition.
Old 05-04-2021, 11:55 AM
  #12  
Senior Member
 
Join Date: Jan 2006
Location: Sunny florida
Posts: 25,524
Received 5,505 Likes on 3,518 Posts
Default

Originally Posted by ChannelTwo View Post
We used Vitas Healthcare Hospice in Florida for my Dad. A few weeks in home and then a few weeks of inpatient at their facility. Not exactly your situation but we had a good experience.
Second vote for vitas. But:

Hospice is an end of life facility. Essentially point of no return. A hospice representative will determine if hospice is the path to take.

Jowboker is absolutely correct!.
Old 05-04-2021, 11:58 AM
  #13  
Senior MemberCaptains Club MemberPLEDGER
 
Join Date: Jan 2005
Location: Suburb of Sugar Tit SC
Posts: 14,988
Received 9,516 Likes on 5,164 Posts
Default

Before you are desperate for hospice care is the time to be determining which provider you wish to use...it it sounds like you are able to do that. In a residential facility such as the one he is in, finding out which groups work well with the full time staff is always important. Finally, really good accounting of all comfort medications is particularly important...to both insure that the patient in need of them actually receives them, and not make sure anyone who doesn't does not. Typically a bit easier in a residential facility to monitor such, but not foolproof. Dope addicts are everywhere, even working in nursing homes.
Old 05-04-2021, 12:02 PM
  #14  
Senior MemberCaptains Club Member
Thread Starter
 
Join Date: Aug 2006
Location: Central Florida
Posts: 8,400
Received 1,008 Likes on 548 Posts
Default

Thanks guys. I'll update this as things progress. One thing he has refused to do is sign a DNR. Stubborn to the end.
Old 05-04-2021, 12:15 PM
  #15  
Senior Member
 
Join Date: Jul 2005
Location: Mobile, AL
Posts: 289
Received 33 Likes on 22 Posts
Default

Originally Posted by Sprockets View Post
Thanks guys. I'll update this as things progress. One thing he has refused to do is sign a DNR. Stubborn to the end.
I had a hospice experience with my mother. She was in assisted living. They explained to her that they would come by every few days and help her with stuff (like bathing) and that it would not cost her anything. She was a sucker for a good deal. Hospice did quite a bit for her for a couple of months and the nurses were very, very nice.
In our case, the DNR was the only fly in the ointment. Hospice decides when it is time to go. My hospice advice to anyone would be to move slowly and don't utilize hospice until you really need them, are near the end and don't mind signing away control. This is a very big decision.
Old 05-04-2021, 12:37 PM
  #16  
Senior MemberCaptains Club Member
 
Join Date: Oct 2004
Location: NJ & Greenport LI
Posts: 868
Likes: 0
Received 304 Likes on 139 Posts
Default

Not to hijack this, but I just found out that my wife's best friend growing up was transferred to hospice this AM. 46 years old, married, 4 beautiful girls ranging from 18 to 12.

Unbelievably sad for husband and the girls, not to mention her parents who are devastated. My wife doesn't know yet, but I will tell her tonight. She can't go see her which will tough... between her husband, kids, parents, sisters, and 7 aunts and uncles, they're all getting 20 minutes to say goodbye.

This sucks.

Old 05-04-2021, 12:38 PM
  #17  
Senior Member
 
Join Date: Jul 2011
Location: Tampa
Posts: 900
Received 85 Likes on 43 Posts
Default

Very sorry you are going through this Jeff. I'm afraid we will be in the same boat in the next few years.
Old 05-04-2021, 01:34 PM
  #18  
Senior Member
 
Join Date: Jun 2018
Location: Southeast Connecticut
Posts: 592
Received 1,344 Likes on 712 Posts
Default

Sorry you're going through this.

Hospice agencies are dwindling, well, at least the "private" agencies. Most of them are being bought up by hospitals. So, try to find a local private one if there's still some in your area.
I've been the IT guy for one for over 25 years, most of it several days a week, working in their building, becoming good friends with many of them...the agency was a little over 100 staff. GREAT PEOPLE! Many stories they had to tell brought tears to my eyes for the amount of care and good that they do.

Hospice fills the gap between nursing homes/hospitals, and home...as someone is towards the end of their life. But not fully at the end yet.
Hospice then has another level, called Palliative Care...which is another team they have to descend upon the patient once things become terminal...the "last days"...and they provide comfort.
And then they have a grieving team to help the family and all others impacted by the loss of their loved one.

I know there are many...many Hospice agencies in Florida.
Old 05-04-2021, 01:34 PM
  #19  
Member
 
Join Date: Jul 2018
Location: Anchorage, AK
Posts: 83
Received 87 Likes on 65 Posts
Default

Originally Posted by jobowker View Post
Hospice is palliative ("comfort care") care only.
It's all about making people NOT suffer.

Without knowing all of the specifics, it seems like if you have the option of hospice while staying at the ALF, that would be the best bet. Having him there would be the least disruptive for your mom, and palliative care would be the least suffering for dad.

I know that this isn't easy, and making the patient comfortable often conflicts with what makes the family members comfortable. They administer the right amount of the right medication to provide comfort. No one wants to see dad looking listless/out of it, but if withholding drugs to keep him alert adds to his discomfort, they will choose his comfort over your unease. I hope I'm describing it ok.

It sucks all around, but looking back you'll rest a little easier knowing you did what was best for them vs what was best for you and your family members.
Originally Posted by Sprockets View Post
I understand what you are saying. He is in pain right now after a fall last week.
Originally Posted by Sprockets View Post
What really sucks is that he is still pretty good cognitively.
I don't disagree with jobowker, but would like to recommend to be very careful in how the medications are approached. I went through this with my dad last year. He had a very aggressive cancer and the decline was very fast, but I can't help but see the correlation of when we started hospice "comfort" medications, and his decline becoming exponential. Lost the cognitive ability quickly (overnight).

I am by no means suggesting anyone suffer, and understand the difficult situation it puts on the family, but I also knew my dad very well, and if he could consciously choose to push through some pain or losing the the ability to talk, he'd want to have a few more meaningful conversations. I saw something similar with my grandmother.

I recommend still consulting with his primary dr about pain management options. This is based on my limited experience. Also from my limited experience, once a patient is on the hospice track, the Drs basically wash their hands of the patient.

Sorry you are having to go through this.

Are you nearby and can attend the meeting with your sister? If not, maybe conference in.
Old 05-04-2021, 01:47 PM
  #20  
Senior Member
 
Join Date: Jan 2020
Posts: 230
Received 99 Likes on 39 Posts
Default

My younger brother has terminal-leukemia which has crossed into his brain..

In the last couple months, he lost complete eyesight (blackness) due to optic nerve involvement, lost hearing in one ear and all left-side movement due to a stroke hospice believes he had..

He just lays there 24/7, wants no music, no conversation etc...just waiting to die.

It is heart-wrenchingly sad, especially considering he's only 44 years old.

She thought I'd be upset, but his wife admitted to me last night, that she got him a source for Marijuana via a vapor pen and she's administering and he's not using near as much morphine.

She thought I'd be upset...but I told her I 100% support that if it makes him comfortable..

Do what you can do..

Thread Tools
Search this Thread

Contact Us - Archive - Advertising - Cookie Policy - Privacy Statement - Terms of Service - Do Not Sell My Personal Information -

Copyright © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved. Use of this site indicates your consent to the Terms of Use.