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Old 08-20-2018, 06:13 AM
 
Location: Pie shape
5,727 posts, read 8,461,076 times
Reputation: 6337

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Catching up on this thread, will have more to add after my mother passes. I have very mixed feelings about my local hospice (local to where my mother lives).

Currently my mother is in a hospice-affiliated private facility until she passes. It's important that I point that out because it's not run by hospice but is affiliated with it and they have a FT hospice RN there.

Before my mother got there, we were rejected by hospice twice - first time because we didn't have the specific 24/7 care plan in place (did not have specific name of agency; I couldn't be the 24/7) - second time because my mother was going to a family event two hours away in the same state and it was to be her last visit with them all. But it was out of the coverage area.

Fortunately a spot opened up in this facility and she is there. Unfortunately hospice never bothers to contact me, which is frustrating to both me and the caregivers at the facility. I haven't heard from the hospice social worker once since my mother was admitted there a month ago. The hospice nurse was reprimanded for not calling me but her excuse was that she had a substitute there. They are supposed to be calling me once a week. So they get another call today. I'm here in the area until the end and have been getting all info from the caregivers at the facility - not hospice.

The stress that hospice added to me just before my mother was admitted nearly sent me to the hospital myself - the social worker that rejected my mother couldn't have been a colder person and it was shocking she's in this line of work. I complained to the office and she was replaced on my mother's case.

I think there's good and bad and every hospice agency is different but it is certainly not the angelic organization I thought it was. I cannot believe i have to call them again today.

Re the morphine: honestly the people need it. My mother is currently on morphine and several other things including haldol as of yesterday. They get very restless and if they are like my mother, still are fighting death. My mother is also not allowed to leave the bed to go to the bathroom but she is too weak to be able to do it even with help. It would be inhumane. It's a dignity issue for sure but it's how it has to be, unfortunately.

I believe that home hospice would have been a complete nightmare for me, my mother, and hospice as I would have put them on full blast when needed.
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Old 08-20-2018, 06:36 AM
 
10,166 posts, read 7,885,172 times
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Ohiogirl, ours was also Vitas. If they are all like that, individually managed or not, I'll pick dying under a bridge, alone. At least there will be no minister trying to comfort my family by talking about his nympho date.
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Old 08-20-2018, 10:05 AM
 
Location: SWFL
21,957 posts, read 18,532,812 times
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Sorry to hear this, NM posts.
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Old 08-29-2018, 06:12 AM
 
Location: Pie shape
5,727 posts, read 8,461,076 times
Reputation: 6337
My mother passed away last week. It's not totally accurate of me to post under this thread as her facility wasn't run by hospice but was hospice affiliated. Regardless, I have to post that when my mother was dying the overnight caregiver there made a mistake and called my sister instead of me. I was the primary contact and my sister had been there three times in the month and a half my sister was in the facility. I was there every day but not overnight.

My sister, of course, didn't bother to call me either until my mother had already died.

I literally screamed I was so angry. My sister didn't participate in the caregiving at all, has done NOTHING and is doing nothing with the estate settling or anything. And the overnight caregiver told me she didn't call me because my address isn't local. I am staying in my mother's house! And I was the person listed on the form to call.

To make things much worse, this caregiver then wanted to save her job so she lied and told her manager that she tried to call me but there was static on the phone. She had specifically told me that she did NOT call me.

I'll actually never get over this because it hit me on so many levels.
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Old 08-29-2018, 09:59 AM
 
Location: SWFL
21,957 posts, read 18,532,812 times
Reputation: 19549
Quote:
Originally Posted by NM posts View Post
My mother passed away last week. It's not totally accurate of me to post under this thread as her facility wasn't run by hospice but was hospice affiliated. Regardless, I have to post that when my mother was dying the overnight caregiver there made a mistake and called my sister instead of me. I was the primary contact and my sister had been there three times in the month and a half my sister was in the facility. I was there every day but not overnight.

My sister, of course, didn't bother to call me either until my mother had already died.

I literally screamed I was so angry. My sister didn't participate in the caregiving at all, has done NOTHING and is doing nothing with the estate settling or anything. And the overnight caregiver told me she didn't call me because my address isn't local. I am staying in my mother's house! And I was the person listed on the form to call.

To make things much worse, this caregiver then wanted to save her job so she lied and told her manager that she tried to call me but there was static on the phone. She had specifically told me that she did NOT call me.

I'll actually never get over this because it hit me on so many levels.
I don't blame you, NM. I would be livid.
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Old 08-29-2018, 10:16 AM
 
Location: Midvale, Idaho
1,428 posts, read 2,286,668 times
Reputation: 1826
Quote:
Originally Posted by NM posts View Post
My mother passed away last week. It's not totally accurate of me to post under this thread as her facility wasn't run by hospice but was hospice affiliated. Regardless, I have to post that when my mother was dying the overnight caregiver there made a mistake and called my sister instead of me. I was the primary contact and my sister had been there three times in the month and a half my sister was in the facility. I was there every day but not overnight.

My sister, of course, didn't bother to call me either until my mother had already died.

I literally screamed I was so angry. My sister didn't participate in the caregiving at all, has done NOTHING and is doing nothing with the estate settling or anything. And the overnight caregiver told me she didn't call me because my address isn't local. I am staying in my mother's house! And I was the person listed on the form to call.

To make things much worse, this caregiver then wanted to save her job so she lied and told her manager that she tried to call me but there was static on the phone. She had specifically told me that she did NOT call me.

I'll actually never get over this because it hit me on so many levels.
I am so sorry for the loss of your Mom. Especially for the HUGE notification mix up. Awful. I pray your heart heals from this as it will just make you sick. No one from the facility ever called me to let me know my mother died. I did get a message on my answering machine from her sister about it the day before her funeral. I am sure the delay was to be sure I would not be able to make it in time as I was out of state. And of course I could not go. This was probably best as I was adopted into that family and always was an outsider even though I played the adoption game with them OH well.

Tomorrow is my 6 hour class needed to become a hospice volunteer and I am already learning more from all of you what NOT to do. I think I have a bit more compassion than the nurse that did not call you first though And lying about it is inexcusable. Again I am so sorry this happened to you.
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Old 08-29-2018, 10:26 AM
 
Location: Midvale, Idaho
1,428 posts, read 2,286,668 times
Reputation: 1826
Adding when my husband was close to the end I called his best friends to let them know. One was here from out of state the next day and got to spend 2 days with him. I am so glad he did come right away as Joe was already gone before that friend even made it home. The morning he died another mutual friend of all of them was also here and the three of them were laughing and telling old hunting and snowmobiling stories together. It was so nice to hear him laughing and having a good time. I never dreamed he would be gone within hours. We were expecting his sister to come in two more days for her visit. The hospice nurse that came when I called her with some meds to assist with his breathing was shocked when less than an hour after she left he was gone. In a way I guess it was a good thing he did not have to linger in a comatose state for days and died on a reasonably good day for him. And it was really sudden when it happened. I would have not had time to call any one else. We were talking as usual and he was gone that fast.
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Old 08-31-2018, 06:20 PM
 
779 posts, read 225,472 times
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I'm really sorry to read of so many negative experiences with hospice. My mother and my husband died a month apart, in different states (NC and MO), both at home with hospice care. It was absolutely the right thing to do. I think my mother had more continuity; she had one nurse who was in charge the whole time. DH was under hospice care for only a month and the nurses seemed to change a lot. Good people, though. It probably helped that I was 15 years younger, strong enough to pick him up when he fell (he was down to 117 lbs. and was over 6 feet tall), and already retired.

The ones who came that last night were the best- he was having another bad attack of terminal agitation (frantically insisting in getting out of bed even though he would have fallen). One was training the other, who had been working up to then in a freestanding hospice facility. They called his doctor, got authorization to amp up the morphine and tranquilizers, helped me calm him down and talked to him about the afterlife and who he'd see there (they knew we were Christians). They hugged me before they left. He died quietly the next morning. The social worker who came after I called got on the phone to the funeral home where I'd prepaid for the cremation and arranged everything. Someone mentioned them recording time of death as when the nurse with the stethoscope showed up; in my case, they took my word for his time of death and that's what's in the records.

I also hope there's a special place in heaven for hospice workers.

Quote:
Originally Posted by kevxu View Post

I would suggest that anyone who is in involved in medical care decisions, or even moral support, for critically ill and terminally ill family members or friends would benefit very much from reading (Dr) Atul Gawande's book Being Mortal.
I second that. I read it after DH died but it really confirmed all my feelings about end-of-life decisions.
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Old 08-31-2018, 06:49 PM
 
Location: Midvale, Idaho
1,428 posts, read 2,286,668 times
Reputation: 1826
Quote:
Originally Posted by athena53 View Post
I'm really sorry to read of so many negative experiences with hospice. My mother and my husband died a month apart, in different states (NC and MO), both at home with hospice care. It was absolutely the right thing to do. I think my mother had more continuity; she had one nurse who was in charge the whole time. DH was under hospice care for only a month and the nurses seemed to change a lot. Good people, though. It probably helped that I was 15 years younger, strong enough to pick him up when he fell (he was down to 117 lbs. and was over 6 feet tall), and already retired.

The ones who came that last night were the best- he was having another bad attack of terminal agitation (frantically insisting in getting out of bed even though he would have fallen). One was training the other, who had been working up to then in a freestanding hospice facility. They called his doctor, got authorization to amp up the morphine and tranquilizers, helped me calm him down and talked to him about the afterlife and who he'd see there (they knew we were Christians). They hugged me before they left. He died quietly the next morning. The social worker who came after I called got on the phone to the funeral home where I'd prepaid for the cremation and arranged everything. Someone mentioned them recording time of death as when the nurse with the stethoscope showed up; in my case, they took my word for his time of death and that's what's in the records.

I also hope there's a special place in heaven for hospice workers.



I second that. I read it after DH died but it really confirmed all my feelings about end-of-life decisions.
I am so glad you did have good experiences with hospice.

The training class was finally held yesterday and there were only 6 people attending. I was surprised I thought there would be so many more considering how long it took to schedule the class for us. I still need the background check to complete and get the TB test. All required by hospice. I can not imagine anything on my background check. I have only had a fix it ticket for a tail light out. Over 40 years ago. The training is mostly telling us about the hippa laws and so many things we can not do for the patients. I can understand why though. One was you can hand them their pill box or bottle but you can not open it or hand them the pill. Same for water bottle or cup /glass. And food. This is because of choking hazard. It is up to the nurses to administer medications. If patient requests more medication a message can be sent to the nurse and she takes care of that. I was pleased to hear the first visit will be accompanied by the volunteer coordinator so they do not send us in cold turkey. From then on we have numbers to call if any questions arise. They are staffed for answers 24/7. I was also surprised the time to be spent with each patient is only an hour. I had visions of a few hours each time. So we will see how it goes. I am the only volunteering to do this in my area of two small towns about 10 miles apart.
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Old 09-01-2018, 07:20 AM
 
779 posts, read 225,472 times
Reputation: 1903
Quote:
Originally Posted by StealthRabbit View Post
Do further research and acknowledge: (as you have)
1) Mother's condition when the choice was made to go to hospice
2) Hospice nurse 'advice' (professional)
3) Seemingly peaceful passing of mom (evidenced)


I would not concentrate / put all that much merit in a flippant response from Dr. (don't use morphine). Very EZ for them to say, as they are not gonna be the ones to attend your mom in death, hour by painful hour, day by long day, anguished labored breath until last breath (sometimes for a week or more), uncomfortable chest pressure and bed sores, humiliation at loss of control and life (and pain LOTS of pain. )

I consider you made the best choice for your mom, and that hospice professionally did so as well.
DH lasted for 3 days after I started morphine (at the direction of the hospice nurses), so it's not an instant killer. Heck, people who get addicted to morphine (it used to happen before things like opiate pain relievers existed) lived for years.

That last night, as the one hospice nurse called DH's oncologist to get approval to raise the dosage, she told the other nurse (the one just learning the ropes of in-home care) that the docs usually agree with whatever the hospice nurse recommends because the docs aren't palliative care experts.
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