What if you don't like your hospice nurse?

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Put Mom (94+) w/dementia on hospice on Mother's day (UGGHHH)....Tough enough, but.... This woman rubs my sibs(who are there every day!) wrong.... she announced Mom has vascular disease... huh???...no history, no signs, Dr's love Mom's great heart/lung/O2 sats ...her problem is dementia!!
I always viewed Hospice as that lovely long hug of support....but this is not!
I am so distressed ....for Mom....
I do not want to start another stupid thread on hospice.....I absolutely believe in it, having had too many too young to die friends having passed w/peace in hospice....
BUT....I think we need, at minimum, a new nurse (my sister told me the nurse looked at Mom and walked right past herw/NO ACKNOWLEDGDMENT....NO HELLO, V....) when they were in the lobby, today...
I am very sorry to say this....truly....but, boy, do you need to be an advocate!....yessss....even w/hospice.....
Your thoughts???

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zam250 Not at all true.
The Hospice that I/We used, JourneyCare is a Not for Profit Hospice. There are Not for profit Hospice and for profit hospice.
As with any service or purchase you must do your due diligence. Just as you would not buy the first car you see, the first house you see or when looking for a new Doctor, Dentist or any other service you ask questions, you talk to people and you do research as to what will "fit"
I have never responded to an old post, I think they should be closed to new responses and anyone needing a like answer should post a current question but your response just made me sit bolt upright and I had to reply.
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Hospice and NH, all about the money.
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Katie I am sorry you got the rotten apple in the barrel for your your hospice team.
On behalf of Hospice Nurses everywhere I can only apologize.
You can write to your State Health dept and tell them what you have told us. Be specific and include dates and times and names if possible and they will investigate.
Some things famillies regard as mistreatment can be inevitable but it is never right to tell a family one thing to expect then not communicate the reason for the delay should it happen. Often there is only one nurse available overnight and two deaths can occur at the same time. The nurse has to decide which family can cope and which one she must get to immediately. The family that may have to wait should always be contacted to see how they are doing and if they can manage a delay.
What many people don't understand is that there is no training for hospice nurses. They learn on the job. Some may be new graduates and others will have years of experience in other fields and can quickly adapt. I am not making excuses for the treatment you received Katie. There is a certification for Hospice and Palliative Nurses which has to be taken every tthree years. But it has to be remembered that it is not a specialty that attracts a lot of nurses and even the good ones do get burned out dealing with patients they know are going to die however much care they provide
Katie you may not want to be associated with the grief councilling provided by your hospice but it is given by a grief conciller usually a social worker not one of the nurses and cn be very supportive. Otherwise you may benefit by other grief councelling. You will be welcomed by the grief group of any hospice and of course if you don't like it you can use alternative services if you desire. I knew on group of widows who attended meetings together , became friends and after the 13 months continued to meet at each others house for an evening of card playing,
I am in no way defending bad hospice behavior but trying to encourage you to grieve your parents passing and move on from this horible experience. Blessings
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I'm sorry, Katie. Hugs.
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I'm sorry but I'm not a fan of Hospice..AT all!!

Each Hospice service is different, which most people don't realize. Not all of them are as terrible as the one we experienced..some of them are actually very supportive.

My best advice before I tell my story is to please do your research before you hire a hospice service as there are many..some good..and some not so good.

First, please listen very closely to what the representative tells you BEFORE you sign your family member up for Hospice. One of the things they may tell you is that they're not live sustaining and will help your family member to be comfortable with palliative care (which they may provide); OR if your family member is in a nursing facility..the staff there will be more than efficient regarding palliative care as Hospice takes over everything once you sign your family member over to them.

Rather than explain, I'll tell my story and try to keep it as brief as possible.

My dad suffered from vascular dementia for a lot of years and had his good days and bad. He fought the disease like a trooper and lived far longer than even medical experts expected. When we thought he was going downhill..he amazed us, along with the nursing facility staff, constantly. He was a true fighter.

There are many things I'd like to clue people into regarding loved ones with dementia or other debilitating diseases such as cancer, etc., the first one being their prognosis discussed IN FRONT OF THEM.

No..no..and NO!! My mom had cancer and her prognosis came from a jerk of a doctor that, when my mom asked how long she had, he told her, "Could be two weeks, two days, or two months..hard to say as your bones are infested with cancer.."

It's all my mom talked about for the rest of the time she was here with us..and she died two months to the day that the stupid doctor told her she had.

Hospice was horrible!! They came and went as they pleased; showing up at the most inopportune times!! Mom was used to eating breakfast, lunch, and supper at the same time every day all her life and Hospice would show up when she was eating all the time even when we asked them to please not. Mom had manners and never liked eating in front of people as she felt it was rude, yet the Hospice nurses showed up with no regard for that saying, "Oh, that's okay..we don't mind.."

But Mom did. And the few times we could get her to eat..Hospice never had any problems about showing up anyway..no matter how many times we asked them not to.

When we needed them, they weren't there..and when we didn't need them..they'd show up anyway. Their staff for the most part, lacked any sort of empathy whatsoever. Sometimes the sloppiest of sloppy nurses showed up on the weekends, telling my mom how little time she had left, etc.

This was coming from staff that knew our situation. We were a rare family to deal with as we'd only become a "cancer" family six weeks earlier and were still trying to process the whole thing. They treated us like families that had known about their loved one's disease for years (not that knowing any amount of time makes it any easier), but in the long run..they treated us like a family in complete denial..not at all afraid to treat as such and tell it like it was.

Thankfully my mom passed away without Hospice there as my dad called them off, after calling them and waiting HOURS for a call back. He told them that if they didn't send someone out soon, he was going to take her to the hospital. Of course they didn't want that and told him they'd have someone there within the hour. I still remember the guy's name from Hospice that came as he was SUCH a jerk!! Told my dad that my mom's skin was starting to mottle and it wouldn't be long before she passed away. We thought Mom was comatose..but her eyes got big when he said that.

The hearing is always the last to go, and while Hospice told us that, they didn't hesitate to say how long my mom had left right in front of her.

As her eyes got big..yes..the hearing IS the last to go and medical professionals need to take a step back and realize that what they say, the patient DOES often hear..and yes..it does affect how long they live.

We went through that with my mom..and then Dad got sick with Dementia. He was the biggest fighter of it even though it'd take him down. He had Urinary Tract infections that often turned into pneumonia several times, which he survived. He had aspirational pneumonia several times, along with dehydration and sepsis..also more than once..which he survived also.

At one of his MD appts, we ended up seeing his MD's nurse practitioner and she openly told me in front of Dad that he probably had six months left. I believe discussing a patient's prognosis in front of them isn't always in the best interest of the patient and should be up the the family.

Dad's eyes got big and as we walked out, I told him that we had something to show HER his next visit.

And show her he did as he saw his regular MD a few months later. He couldn't believe how Dad had miraculously transformed as he was talking and answering questions.

Mind you..his NP that gave Dad six months..he'd just gotten out of the hospital after surviving sepsis. I'd be out of it a bit also..while she decides to throw a prognosis around in front of him.

Dad had quite a few great appt with his MD before he took a turn for the worst..and when dementia starting to take it's toll on him. It's such an unfair disease as it slowly fogs the brain.

Dad got on thicker and thicker liquids..grosser and grosser food. He was losing weight like crazy, didn't talk much anymore, etc. I wasn't giving up on him though and found ways for the two of us to communicate without saying a word.

His MD suggested Palliative Care..yet the CNA's and nurses at the facility he was at were enough. They were amazing!!

I made the dumb mistake to call Hospice when Dad could no longer get out of bed. They were useless and only stopped to do a once over and tell me what I already knew. The day Dad started choking on his food was when I knew I really needed Hospice and one of them stopped for a mere hour..that was it.

Although she was very nice..when her shift was over..she was gone.

Never thought a Hospice service actually operated on certain hours..but ours did. After we hired them, they told us that the day staff was available until 3 pm..and then the night staff came on..available until 11. If I needed anyone after that, they'd have to call a volunteer..and they'd only come if they wanted to..as they WERE just volunteers..

SERIOUSLY!??

My dad slowly took a turn for the worse over the next four days and I was there with him 24/7 over those days..taking mere half hours off to go home and shower. I NEVER saw a single Hospice nurse during that time even though they told me that they were there daily.

Being there just meant that they walked into the nurses station and checked on his records as they never once stepped into the room to see how I was doing.

Staff at the facility was amazing, as Dad was there for almost three years. We'd become very to close with so many on staff that I left the door open while Dad went through the dying process so they too could come in and grieve also. They loved him too and we were all like family.

When Dad finally went, THEN Hospice thought they could come in and take over, including coming in to clean him up, etc. The closes Hospice nurse was 45 minutes away and it was well over an hour before she got there. Dad was cleaned up way before that as I'd be darned if I'd let him sit that long while his room got stunk up with death. They also wanted to be the ones to call the funeral home to come and get him.

Nope to that one too as I called them myself.

An hour later, when the Hospice nurse finally got there to make sure he was truely gone from this world, one of the night staff nurses that was new and didn't know me from Adam (and thought I was out of hearing range) said, "She doesn't want anyone touching the deceased, except staff"

Ohhh my word, did I read her the riot act!! I said, "My dad has a name and it's Clarence..you might want to use that instead of insensitively calling him the deceased.."

As I continued to take charge..I told the Hospice nurse to get in his room..call the time of death (an hour after it actually was) and said, "Oh that's accurate.." sarcastically..and then waited for the funeral home to come as THEN Hospice wanted to be there for me; offering to sit and counsel me regarding my grief.

Although this particular Hospice nurse was nicer than most, I was just so fed up with what they never did, yet wanting to take over once he was gone, I had a very tough time not liking her much. When she told me I should go home and get some sleep and they'd take care of things when the funeral home came to get him, I told her that there was no way in heck I was going to leave Dad alone and I'd stay to see him off.

I'm sorry this post is so long but in reply to your post, Hospice is NOT that lovely long hug of support we all think it is. Some Hospice services may be, but the one we hired for both my parents was far from it!!

If I can continue how much things changed from what they told me when my family hired them to what they became after they were hired..it was two different things.

They told me that they weren't life sustaining..but kept a patient comfortable during their last moments. What they forgot to tell me was that life sustaining also included not giving my dad fluids as those were life sustaining also.

The bottom line was that my dad COULD swallow somewhat, but they told nursing staff that he couldn't even have a wet wash cloth to give him some sort of fluids to wet his mouth with.

THIS made me more than angry as staff had to abide by what Hospice said. I wasn't going to abide by those rules though and spent many times sitting with my dad with ice cubes in a wash cloth; wetting his mouth. I also cleaned his mouth out with wet swabs, as nursing staff couldn't even do THAT, according to Hospice.

I DARED Hospice to come into his room, but they didn't..not even once during his dying process as I was there pretty much 24/7!!

After Dad passed away, I called Hospice and gave them a piece of my mind. They said they were there on a daily basis the entire time Dad was going through the dying process..yet they NEVER came into his room as again..I was there pretty much 24/7 except for the times I took half an hour away to take a shower.

And since I live a mere 3 blocks away from the nursing facility..when I asked staff if Hospice even went into my dad's room..nope. They just stopped at the nurses station, checked his records..and left.

Again, I called and complained. Not only for the horrible Hospice that my dad got, but that I didn't want the same horrible care to happen to someone else. They said that they'd pass it to Administration and I'd get a call back regarding my thoughts. Never got one call back..yet I got several calls a month later asking if I wanted Grief Counseling; and just recently got a letter from them asking me to rate my Hospice experience.

Sorry again for the long post, but I'm still soo very angry with Hospice. Thankfully it was Dad's time, yet a friend of mine's dad just passed away a week ago and Hospice did the same with him. It's like they "pushed him along" towards death as they stopped feeding him as soon as he came down with aspirational pneumonia.

IMO..that's not a death sentence as my dad survived it more than once, yet they refused to take him to the hospital..everyone continued to work like he was nothing, while saying, "He's in his upper 80's anyway..it's his time.." and he passed away with dehydration.

As I make this post even longer, the best advice I can give to those with aging parents is to stay proactive. Know that their care is truly in YOUR hands; and not to depend 100% on any staff to take care of them unless you tell them what your expectations are. You'll often times have to put your foot down and work your way up the staff food chain if their care isn't up to your expectations. Don't be afraid to do that, as staff will actually respect you more for it.

When my dad was in a full time care facility (hate when they're called "nursing homes"..or even worse, "homes", as in, "He's in a 'home' now..", there were times I was a real rag when they'd throw his dirty clothes in his recliner; leave diapers all over his room, etc. Sometime I'd find precious things of his broken, that nobody would own up to and once found the last of my mom's precious gnomes that he had in his drawer..in pieces in the drawer. I was livid!!

I'd put it there as it was sitting on a shelf. The way they threw around the mat that sat next to his bed..I was afraid it'd get knocked off..sooo I put it in the drawer closest to his bed. He was happy with that and it made him feel close to my mom.

Can't imagine how I felt when I opened the drawer and saw it in pieces. Thank goodness Dementia had gotten the best of Dad by that time as he would have been heartbroken. Came from someone slamming the drawer (as I'd caught them more than once doing that)..and thus..a broken gnome.

Side story to this is that Mom passed away on the 28th of October. Her and dad had two heavy concrete gnomes sitting outside in front of their house. Mom was always afraid someone would steal them so Dad spent time attaching 50# of concrete to each of them before he put them back in the ground; again in front of their home.

Dad went outside the day after Mom passed away..and the female gnome was gone. He was more than heartbroken about it and walked blocks looking for pieces..thinking that the thieves may have just taken it to break it somewhere close...and had he found it; even in the middle of the street, he would have been there to pick up the pieces.

We all knew it would have taken several individuals to haul a 75 lb gnome out of the ground and into wherever they took it to...just makes one wonder how far some idiots will go just TAKE something that means absolutely nothing to THEM.

Thus the protection of Mom's gnomes. Dad and I chose them and he put metal sticks in them so they'd fit in the ground next to Mom...along with his wonderful wind chimes we put on a Shephard's hook. One by one the gnomes got old and broken, so the one in his drawer was the last one intact. Someone slamming a drawer too hard took care of that one too.

The person that did it knew they did it as all of the pieces were put back together as well as possible..except for a foot waay back in the drawer. "At least own up to it" is what I told the Social Worker.

Whether it's a nursing facility or Hospice..a family member needs to advocate for your loved one..and A LOT!!

Anyway, I'll finally shut up. Thanks for letting me vent..and thanks for reading.

Blessings.
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In general, in today's society, VERY few individuals actually want to perform their jobs, e.g. how many times have you been told by a company, "I'll call you right back/I'll get back to you?" Quite honestly, I would rather them tell me "you know what, I won't get back to you at all!!!!!!!!"
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I felt it was absolutely ESSENTIAL for my family to have had a great hospice nurse caring for my Dad! When the original nurse took a different job, a new one was assigned and I did not care for her bedside manner at all. I called the director who was happy to hear me out and to assign someone else. It's not the family's place to worry about the hospice nurse's feelings, but HER place to worry about OURS! Yes, the family is upset and grieving, which is all the more reason to have a nurse who we feel is invested in us, and who wants to ease the pain for all concerned. The original nurse wound up coming to my Dad's funeral, and that made a huge difference for me. She cared, and wound up helping ALL of us thru a difficult time.
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Is ur hospice being done in a nursing home? If so, hospice nurses come in from a different agency. The director of nursing at the nursing home ha no surpervision over the hospice nurse. You need to talk to the agency. I would ask for a new nurse. I think its important that family members should feel comfortable with the nurse too.
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What many people do not understand when they are new to hospice is that it is a totally different approach to care. The patient's comfort and peace of mind are the primary considerations and many different actions come under these headings. Building a good trustful relationship with patient and family is just one and another is very often ignoring things that are considered "good" them. If the nurse consistently fails to be courteous to family and acknowledge patient, or order family around unnecessarily then it is not unreasonable to request a change in nurses. It is also helpful for the nursing supervisor to know how a particular nurse is behaving in the home.
There is no training course available for hospice nurses they just have to jump in at the deep end and if they are lucky they will be able to shadow someone more experienced before they go out on their own. Not always the case though many simply have to jump in feet first and sink or swim. Quite a number burn out within the first year and others are extremely stressed when they have been in the job for some time.
Remember that you are not the only patient and your nurse may be desperately worried about another of her patients for example a family with a dying baby.
There is no excuse for consistently bad behavior and it is not unusual for a different nurse to be requested. You simply call the supervisor and tell him/her that you feel Nurse X is not a good fit for your family and can someone else be assigned. If you are then asked for reason you can go ahead and give them. The nurse may be equally glad to be taken off the case but his/her side of the story will be sought too.
The old saying that you catch a lot more flies with sugar than vinegar is very true so reach out to your nurse as well. Once she has taken care of your concerns offering a drink of something to eat is not out of the question and often very welcome. That way you can chat and find out a bit more about the nurse, that way they become a person not a faceless professional.
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Mina7in7Motown: If you don't like the incompetency of this hospice nurse, get another one, as many have said her.
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