Hospice isn’t helping much. I expected more.
This post is in my discussion of home care not working. But I feel like it’s buried.
After 6 months, mom seems to be going into a decline. I spent yesterday with her and she was breathless to the point of barely being able to eat all day. Having a BM on the commode was an absolute ordeal. It took her an hour, and then another half hour to get her back into bed. After that her respiration rate was 32.
I do have a call into hospice, but I feel they are no help. As Alva has said many times, they come in for their weekly visits (maybe 2 nurse visits for less than an an hour, 1 CNA visit for a bed bath, and alternating social worker or chaplain visits, down to about once every 2-3 weeks now.)
Sadly, I think mom thinks they are going to call the calvary when she gets to the point where she really can't breathe. But reading other websites, I feel like we will be lucky if they even show up for the very end. All they have to offer her (besides the hospital bed, commode and O2 machine) is morphine and benzos. And mom continues to take LESS than the minimum prescribed doses because she doesn't want to sleep.
The doctor, the nurse and I have explained over and over that the sleeping is due to the progression of her disease, not the meds. She is literally on subclinical doses after 6 months. (Like 0.25mg clonazepam). Yet she fights to stay awake, says "I can't breathe" several times an hour, and when she uses the commode and her O2 dips into the low 80s she cries "help me" at which point I just about beg her to take the full morphine dose. But she wont. She says we are trying to put her to sleep.
She is now accepting of the fact that she is dying. But she thinks hospice is going to swoop in and save the day. The only thing they are going to do is continue to raise he medication doses to make her comfortable, but she won't take them. Hospice says we can't force her to take them. But it's agonizing as a family member.
I want THEM to tell her firmly that her only option, if she doesn’t want to feel like she’s gasping for breath all day, is to take the meds as prescribed. They act like they’re afraid of her.
I expected more from hospice. They said they provided "wrap around care" for both the patient and the family. I told the chaplain much of the above, and he said that's "out of his wheelhouse". So I guess the idea of him providing ME counseling and comfort is out.
Also, my efforts to find a hospice home, even in a nearby state, for end of life have been fruitless.
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I am sorry to hear this update, but I am glad that you are so perfectly realistic in giving it to us.
My father needed hospice last year. 3 of the 4 in-patient hospice facilities near him closed shortly after the pandemic.
i was so very disappointed with them! They don’t really do any besides providing morphine for the family to give and i bet they bill $$$ to do that.
Are there other Hospice organizations that have hospice facilities in your area?
Is it maybe time to transfer mom to a nursing home with hospice care? That worked well for us at the end with mom.
That is why I often tell folks on here if they're bringing hospice on board for in home help, they will still have to do 99% of the hands on care as they only send a nurse out once a week to start, and aides to come bathe your loved one twice a week. The rest is on you or whoever is caring for the patient.
Now of course if you need a nurse to come out more for an issue you can call their 24/7 number and they will come out.
You also have the choice of hiring a different hospice agency in your area if you're really unhappy with the one your mom has now, as not all hospice agencies are created equal.
It's been my experience that folks that have hospice care in any kind of facility are often much more pleased than those that opt to have in home hospice care.
And I also know that you have to stay on top of them constantly to make sure that they're doing what they're supposed to be doing. So don't hesitate to call them any time with any question/concern you may have.
And I hope that they will be there for your mom and you at the end as that is what they're supposed to do if you need them. They're actually supposed to provide 24 hour round the clock care if you request it, as your mom nears the end.
I'm also surprised that none of your local hospice agencies have a hospice home that your mom can go to if need be at the end. That doesn't make much sense, as most have one or access to one. You may need to double check that.
Wishing you well as you take this final journey with your mom.
my friend got me a caregiver for day and realized I needed one for night. It was a double-edged sword. I only needed the night shift one night.. the right time to get someone in.
I am surprised at the comment from the Chaplain. Although he is right questions about medications are not in his "wheelhouse" But he should offer some guidance to you and possibly even suggest that you contact one of the Bereavement Counselors just to talk.
I would also suggest that you contact another Hospice and see what they have to say and if they would approach this any differently. It does not sound like the Hospice you have is what it could be.
And the Social Worker should help you find a "Hospice Home" ... Would placing mom in a facility for "Respite" help? They should be able to arrange that. All Hospice if they do not have an on site In Patient Unit will have an arrangement with a local facility or Hospital that will take the Hospice patient for Respite.
From what I garnered, as a fly on the wall, was that they allowed her to drive the bus, and didn't educate the kids who were doing 99% of the care.
When they finally went to place her, the facility director asked which Hospice Co she was 'with' and when they told him, he said "It's your call, but we don't even want them on the premises."
Good grief!
She passed before they could change companies and I think the night before she died, the Hospice Co had actually sent the kids home saying she was not 'imminently' dying. She died about 2 hrs after my SIL left. And then they didn't call the family for 6 more hours.
They aren't responsible for her death and I'm not saying they are--just that they really never seemed to be able to put a finger on how to properly care for her.
The family kept on with this co for 10 months. It was a very poorly run co. Communication was practically nil.
If you aren’t satisfied, then you should definitely consider changing to a different provider.
AFTER I wrote that post yesterday my Aid called and mom was not verbally responsive. She was nodding her head but not verbalizing. The aid said that when she opened her eyes one was looking in another direction. We called the hospice emergency # and my DH and I went to the house. (DH was a career EMT and thought she was having a stroke. She wasn't).
The on call nurse called the Aid directly (which is what I wanted, because I wasn't there yet to answer specific questions). She said the on call nurse asked if mom was on morphine, so she clearly didn't even look at mom's file before she called. YES, she's been on morphine SIX months. She said give mom morphine and Tylenol.
They said they would send someone in the morning. So I went over there and really woke mom up, and got her to respond verbally. Mom verbally agreed to put on a depends. The Aid and I lifted her onto the commode. She has a very painful knee right now and we're not sure why. By the time mom got off the commode she refused to put on the depends. She did agree to wear a large depends pad and have a large bedpad under her, but she was as out of it as I had ever seen her. She was talking about me (to me) in the 3rd person.
I'm SO disappointed in the lack of response. I left 3 more texts after hours for mom's case manager RN, knowing she doesn't start work until 8am. (It's 9am now, but I also left a message yesterday morning).
The other thing with changing agencies is, they will come and take the hospital bed, O2 compressor and commode. I know we could get another agency to deliver the equipment the same day, but what am I going to do, throw mom on the couch until they get there? Especially now that she's in this bad of shape?
In past conversations, hospice (nurse and social worker) are totally against us moving mom. They acted like they would have agreed to a hospice home, but they must have known we wouldn't be able to find one. They said we can't just send her to the hospital. And they agree with me that she will get LESS care in a nursing home, as her homecare is 1:1. However, the agency never trained us on how to handle any kind of an emergency.
Or,
You can discontinue this hospice, call 911 and find out what's wrong with mom's knee and why she is suddenly so non-responsive.
Perhaps the social services folks at the hospital would be better able to assist with her next placement/hospice.
I'm so sorry you're going through this, Lily.
Changes are going to happen , possibly even a stroke during end of life .
The treatment is the same , keep Mom calm and comfortable .
For these perceived “ emergencies” that you do not feel trained enough to handle and you are not getting the support you need from hospice , I would consider a nursing home where there is always a nurse .
My father died in “ comfort care” at a nursing home . My FIL died on hospice in an AL that had a nurse on staff 24/7. It was my experience that , it was better for all . The family was more calm which I believed kept the patient more calm . The nurses took care of the medications , and managing the symptoms . IMO at some point that becomes more important than a 1:1 aide . You could always have a 1:1 aide ( from an agency ) be with your Mom if you wanted for the part of the day she is usually awake .
I’m sorry you are going through this . Your mother may listen to a nurse more than her own daughter about taking meds as well. I am a nurse and am glad I did not do this at home . It was better for all not being so directly involved . I think it’s very difficult to feel responsible for managing your own parent’s death .
Lily, it’s ok to say you can’t do it this way anymore.
"The doctor, the nurse and I have explained over and over that the sleeping is due to the progression of her disease, not the meds."
"I want THEM to tell her firmly that her only option, if she doesn’t want to feel like she’s gasping for breath all day"
You say the doctor and Nurse have told Mom she needs to take the meds. Did they not tell her then Morphine helps with her breathing? If so, what more do you expect them to do? Your Mom is the problem here. If she was compliant, you would have no problems.
Anytime home hospice is involved, the family does all the work. The Clergy, he is there for your spiritial being not to hear complaints about the Hospice. Maybe he should know be the one to talk to Mom about the importance of taking the morphine to ease her breathing.
I don't think clergy and Social workers are a regular thing. I think they need to be requested. Lots of people have their own clergy so don't need the Hospice one.
Really sorry what your going thru. I could not work and go thru this too. Think I would take family leave. Its very stressful waiting for their passing. And I feel for Mom that she does not understand.
There’s a distinct possibility that I’ll need to look at hospice for my mother in the not-too-distant future, and I’m dreading it. Being in some kind of hospice facility, where there is staff to provide help, I imagine would be so much easier. I doubt my mother would readily agree to that. To keep them home until the end, I think, requires some help, like hired help, a CNA or something. In the Chicago area, at least, you can hire wonderful Polish or Czech live-ins, and they are invaluable. But I know that’s not an option for everyone.
There should be a doctor or something connected to your hospice, shouldn’t there be? Can he come out and talk with your mom?
I’m sorry you’re experiencing all of this. I know first hand what it’s like, and I’m sad to know others are experiencing something similar. I, too, was under the impression 3 years ago that hospice would swoop in and save the day, but it’s apparently not to be had. Hang in there, friend.
I again called mom's RN/case manager yesterday. When I didn't hear back I called the clinical manager (person in charge). She had NO RECORD of the emergency call made the night before, and no record anywhere that we were waiting all day for them to send someone. Of course, she said it was "too late" to send someone now - 2:00pm.
She said do not wake mom up, and to just squirt the liquid morphine into her mouth. I said the biggest challenge, I said, is that she does not have depends or a catheter, so if we do not wake her up she will be soiling herself. (She does wake up for brief periods and drinks ensure and juice). The CM said she would order adult diapers and they would come in "a day or two". I get that this isn't an emergency for them, but I didn't expect her to be so dismissive.
I also said mom has refused depends up until now, and we are lifting her onto the commode. She very snottily said something like, "we're not going to sit here and psychoanalyze your mother right now". She couldn't get me off the phone fast enough. I understand that they deal with death every day, but I only have one MOTHER, and for ME this is a crisis.
My friends irl are screaming that I should complain, write a letter, report them, etc. Like I have time to do that right now?
In response to the question of having the doctor come over..mom's eye doctor, who she used to work for, made a house call a couple weeks ago. Her hospice doctor, who was her pulmonologist, hasn't returned my last 3 calls. Both mom and I really have a lot of respect for this guy, but now that mom has been in hospice for over 6 months, I think he has nothing to offer. He thinks hospice is managing her her care, and he signs off on the controlled substances.
There were many times in my late husbands 22 month journey under hospice care that I had to be a flat out b***h to his case manager on the phone to get the help that he deserved. You may have to be a bitch too in order to get things done.
And if you can't then you really need to fire this hospice agency and bring another on board. I know that it's more work for you, but in the long run it will be a whole lot less stressful for all involved, because bottom line....your hospice agency now is NOT doing their job. Period.
Will you be able to handle your mother when she is bedbound ?
Because that is where she is at……and changing her in bed when she soils . I have to imagine getting on and off the commode is taxing on Mom at this point . Let her rest in bed . If you can’t manage her bedbound at home , get her in a nursing facility where they can care for her in bed with or without a foley .
I’m sorry about how hospice is not working .
In the meantime mom was up, conscious, had 3 visitors and was being herself again. I was hoping since the nurse was coming so late in the day she would pass out again and the nurse would see her "out of it". But nope. She showtimed. Was cracking jokes, the whole 9 yards. (She still didn't eat more than 4-5 bites of food all day,)
She did agree to have her morphine dose raised, and the nurse did document that mom was unconscious for over 2 days. When she questioned mom, mom had no recollection of the lost time. She also insisted that mom either accept a bedpan or adult diapers for when this inevitably happens again.
Mom said she wanted to keep everything "as is" and would worry about it when it happens. Which summarizes her entire philosophy on life. She always ignored impending crises, which, could have been avoided, then had to deal with the fallout, then cried, "why is the happening to me?". Over and over.
I know it sounds horrible. But I am disappointed that she came out of it. It was imagining that it would end as others had told me their parents died of COPD...sleeping all day, not eating, having this last for 2-3 weeks, and then their LO finally slipping away painlessly.
Now it seems were back to having to have the fight about placing her, possibly taking her to court, having the money run out, going on Medicaid, and mom ultimately ending up in a Medicaid chosen facility, because she won't go in to a nice facility as self pay and then transition (see philosophy on life above). If it plays out this way she will be miserable and furious at us, after we have given up most of the last 4 years caring for her.
I don't think she really wants to die. I think she wants to fight and fight. In every way.
Please note that my mom's vitals were fine up until about 20 minutes before she died. Since then, I put NO faith in "vitals".
And my mom was up and "with it" with my brothers and their families their families the night before she died.
(((((((hugs)))))))
I just read in an earlier post on your thread that you were disappointed that your mom “came out of it” and wish that she would have slipped away peacefully.
It is every child’s dream for their parents to die peacefully. Your feelings are completely normal.
I am so sorry that you are experiencing such pain.
Wishing you peace as you continue on this difficult journey.
I see this as the dog (hospice) trying to serve two masters. Hospice doesn't owe you any information or consideration as she is still considered competent until under either POA or GS she is declared incapacitated. As long as mother is able to determine her fate, she is allowed to do so whether or not it jibes with you.
POA responsibilities are not pick and choose. They are either/or. POA actually gives you the power to get her medicated properly until her passing AND to be the contact person in her stead.
Or step completely out and just be her daughter. Let hospice do their necessities without the added drama and by telling them you are not her representative.
And my two cents are worth exactly what you paid for them...
If these are mom's final days, after all these months, I feel like this is a reasonable request - rather than having to transport her to the hospital and then a facility.
It does sound like things are changing as if it’s the final days .
Might the purewick catheter work now that Mom is not moving about a lot?
Usually Hospice will get those in for you.
I feel for you. I remember being at my mom’s side in her final time on this earth. I felt like I was hanging in Limbo, which is the absolute worst feeling.
I remember the hospice nurse telling me that Mom had one foot in this world and the other foot was approaching another world. She referred to it as “traveling.”
Mom kept talking to me about a young girl that she was seeing. She said that the child first appeared to her in a dream and then she started visiting her in her room.
I have no idea who this child was. My brother asked me if Mom had ever lost a baby before we were born. I told him that I didn’t know.
I went along with Mom’s story because she enjoyed talking about this little girl.
Mom was comforted by this child and I am glad. She said that the child told her that she would stay with her until the end of her days and protect her. I think Mom saw her as an angel.
Mom did have some dementia but I like to think of this child as an angel that was sent to my mother to take her home (heaven) to reunite with those who she loved so dearly.
The hospice nurse said that many of her patients have spoken about seeing other people as they were dying.
I realized that the end was near. A part of me didn’t want to lose her and another part of me wanted her to be at peace.
Mom was so ready to leave this world. She was 95. She was a woman of faith and wasn’t afraid. She wanted to reunite with my dad, my brother that we buried in 2013 and all of her other family members.
Thinking of you and wishing you peace as you go through this difficult time.
When my mom slipped into unconsciousness she never came out of it.
I can’t imagine how hard it
is for you to see your mom go in and out of consciousness.
I’m so sorry that you are going through this struggle. It’s tough.
It’s not peaceful at all. Now I’m alone with her. Her pallor is yellow and the hospice literature says that could mean she’s hours or days from death. It sucks that I’m getting my information from pamphlets.
I've also notified a couple of very close people and getting denial, or “get her to eat something” (save her). I can’t manage other people’s emotions right now.
Edit: I did talk to a compassionate hospice nurse last night (after trying to reach people all day). She said they could probably get the doctor to order a catheter on Monday, but Monday is forever away.
They are to come out anytime you ask them to, so make sure you're putting your foot down with them as you are the one who hired them and they now work for you and your mom. So don't let them bully you around. You should be the one calling the shots, not them.
And you can start by telling them to call the doctor now(as there is a doctor on call 24/7)as you expect your mom to have a catheter placed by this afternoon.