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I do think that in Covid-19 days, with her having to be more protective and assess things, things cannot be as predictable as once they were. She is trying to juggle a lot of things out there, and I am sure you recognize that.
Do just speak with her. I think that she may explain to you what she cannot predict and take care of, and what she can at least attempt to do better at.
Do you think that you get excellent care from her when she IS there?
I can understand from her point of view all she is going through but I agree with you that 30 minutes or less is not acceptable.Tell her how much minimum time you need to feel you are ready for a visit. And perhaps tell her why.
wishing you good luck.
During our initial meeting I kindly explained to her that I work best from a schedule (even a loose one) and expressed my displeasure with the previous home care nurse, PT and OT just coming when they pleased. Not fair to me or my mom.
But if this happens all the time, it should be addressed. Perhaps she needs more practice in planning. Perhaps you're more organized than most people.
When I arranged for care for my father, I explained that I would be coming over for the visits, so if any changes were necessary, I would appreciate advance notice (it was only a 30 mile drive, but still, it was a trip). It generally worked well.
If I were you, I would make a list of the times, the short notices, the inconvenience it has caused, etc. Think about it, and perhaps put yourself in her place and consider how you would handle the situation. As a hospice nurse, she may encounter unexpected distractions and may need to stay longer.
Then in a friendly manner tell her there are some aspects of the relationship you'd like to discuss so that you can understand her position (or say something delicately, but DON'T put her on the defensive) and ensure that you have a mutually positive working relationship.
Approach it as enhancing the working relationship between the two of you, asking for her opinion, position, explaining yours, and working together to find a solution.
I also like to plan my day/week. But I think I need to start to allow myself a looser grip on "scheduling". From what little I know, there seem to be a lot of things they're doing "behind the scenes" so to speak. But I totally get how it can be very annoying, and how it might seem like they're not being respectful of your time.
I agree with FloridaDD. Just explain that it's not easy for you to do the "last minute" visits, since it's just you with your mom. Maybe just ask her at first to narrow it down to a choice of 1 or 2 days each week; if that works, try and narrow it down even further.
When the nurse first came to meet us, she did warn me that there were going to be times they have to change up the schedule because of emergencies. I guess when people are at the end, the emergencies come much more often and urgently.
Good luck, I hope you can get this resolved. It's stressful enough without things being added from the outside. (((hugs)))
There have been times however, when they have called me to tell me that they were on their way, and I told them that now was not a good time and that they would have to come later, which they did. You just can't be afraid to speak your mind with them. I do it all the time. You are now your moms advocate, and need to do what's best for her and you.
They should be able to tell you Tuesday morning between certain hours, but I think that is as good as it gets.
Think about what would happen if they set firm schedules and have to tell you or your mom oops! Gotta go, sorry I can't address your multiple concerns, but I have a schedule to keep. Yeah, you would be furious. They take the time with each patient and they can not really predict how long that will be. My sister could be done in 5 minutes or need 2 hours of their time, we were beyond grateful that they did whatever she needed without making her feel like she was inconveniencing them, even though we know they had other patients that were waiting for them.
ASK that they schedule a time frame on specific days, they can do that much. But please realize that this is not like seeing your doctor, they are dealing with dying people and their families and their day consists of many, many surprises and unknown situations. If they are taking the time with your mom, be grateful that they are giving her what she needs. If not, I would find a different hospice that cares how she feels.
As an example, I had an appliance repair man in today. When I called for an appointment yesterday, I was told either Tuesday or Wednesday.
Shortly before 8:30 this morning I got a call and he could be at my house between 10:45 and 12:45 and he was checking if those times worked for me. I said yes, and he was her very close to 10:45.
As with your nurse, he has no way of knowing how long the earlier appointments will go, something may come up or in the case of my appointment, it was very short and the cost of repairing my machine is greater than buying a new one. Once he left I am sure he called his afternoon people to see if he could come earlier.
With your Mum's Hospice nurse, you can tell her Tuesday afternoon works best for me, but be prepared that a set time on Tuesday afternoon may not be possible.
Thanks for the responses and as I stated in a previous reply, I will do a reset of expectations.
I NEVER asked for an exact time simply becaus I know its not possible with hospice, PERIOD! All I ask is for a set day and window and not be treated like an afterthought.
There have been other issues with this nurse i.e. delayed supply orders; zoom visits while dropping off granddaughter etc. Almost at the end of my rope with her level of professionalism and excuses.
The first time Mom had in home care after a hospital visit, I no sooner got home when the MM care nurse called. She wanted to come the next day, Friday. I said Monday would be better. My Mom came back to my house. I needed time to get her settled in and on a routine before having people come into my home. My DH thought I should have allowed her to come. Morning person am not. I had no idea how early Mom got up and I was the one who was going to have to get her ready. So, Monday it was. Then PT wanted to come at 8am. No way. I found out thats when Mom woke up. And because she suffered confusion if you tried earlier, I told PT 10am was better. Gave me time to get her up, dressed and breakfast. Gave me time to.
With Hospice Nurses its a little different. I think Dads called 24 hrs before. But you need to realize that Mom is one of many. Some patients she may see for a few minutes others longer. So, she may be done earlier with one and Mom is next so she calls to tell you I will be earlier or later. But, she can call the day before and tell you Mom is on the schedule for the next day. I worked as a secretary for a Visiting Nurse Assoc. My boss would tell the nurses that they needed to realize they were going into clients homes. Their job was to do what they were there to do and visit a little. They were not there to boss them around or tell them what they should or should not do. Thats for the Doctor to do.
I don't see any problem in requesting she call you the day before. You understand that she could be earlier or later but you need an approximate time. If she is not willing to do this speak to her supervisor. They are being paid for the service.
If there is a good reason, it will make you feel better too. I remember once I was kept waiting for a full hour for a scan for which I had to arrive with a full bladder. It was very very uncomfortable and I was cross. Then I found out that they had found probably major cancer in the previous patient’s scan, and it took far more time than normal. My feelings changed completely!
It's always frustrating when we get irritated by someone who is taking care of our loved one. It always feels like I'm walking on a tightrope - wanting to say something and having to be ever so careful what I say and how I say it - why? Because I feel like I'm at their mercy to continue taking care of my mom.
My mom is currently on hospice and the organization (it's a not-for-profit one) has their own patient advocate so you may want to see if the one your using has one. After a month of hospice being with my mom, the advocate called me and asked if everything was going well with the hospice team assigned to my mom and if I had any issues. I did have an issue with one of the team members and we talked about it. A few days later, I received a call from the person who oversees that member and things were taken care of.
I hope you will be able to get a resolution to the problem!
Confrontation is not the right tact to use in this stressful situation.
My mom has been under hospice for two years before she died, and I fired two hospices; the third I liked. All of them will call before coming over. But I did 100% of mom's care.
It sounds as though you don't feel that the nurse is completely present when she is with you and your mom, that your mom is more of an afterthought to her rather than the "only patient in the room" which is how you should feel.
Get a new nurse. If THAT nurse is the same way, you know that this attitude is acceptable to management and you need a new hospice organization.
Specifically @gladimhere and DonnaF777 I totally get the flexibility and emergencies that come with hospice. But, when a hospice nurse constantly talks about facebook activities, scheduled prayer meetings on Wed., conducting virtual visits while in the McDonald's drive thru w/granddaughter and other personal matters, while I have to send several reminders about supplies and appointments. I can't help but wonder how busy/professional you really are with legitimate hospice duties. This nurse works 12 hour days Monday thru Thursday if that matters.
To all the long-term hospice nurses, caregivers etc, can you share what I should expect in terms of status/prognosis of the patient? Should I be getting some sort of documentation etc letting me know what's what? My reason for asking is because this same nurse, 3 months in, stated to me "we may have to kick your mom out of hospice" and to this day I'm still feeling some kinda way about that comment. I met the hospice doctor about a month ago and I really liked her bed side manner and professionalism and was wondering should I reach out to her. Basically, I don't want any unnecessary surprises with hospice.
My mom still has her PCP but hasn't seen her since being under hospice care.
Thanks in advance.
Her comment, "we may have to kick your mom out of hospice", really stuck in my craw too! And several reminders to bring supplies? Her "constantly talks about facebook activities, scheduled prayer meetings on Wed., ..." Eww.
While Mom was on hospice, the people who came by were amazing, kind, hardworking, and absolutely dedicated to their patient and to the caregiver (me). Their amazing mannerisms made it that much more jarring and infuriating when, on the Mom's last night on Earth, I notified the agency that Mom would pass soon. Mom hadn't woke up for two days, and the oximeter was showing her heart rhythms were increasingly erratic and not pumping much. Her O2 levels were dropping.
Late that evening a priest and a hospice nurse, both of whom I'd never met, arrived, which happened to be right after a major Catholic event. The nurse was incredibly annoyed and rude. She challenged me how I knew Mom would be passing soon. While my two older sisters and niece hid in a room, I watched the priest give Mom last rites. Finally, the nurse accepted what was happening and she was doing her thing.
The nurse hollered across the long room if he was finished, and he yelled, "She's good."
I wanted, with every fiber of my exhausted being, to forcibly kick them out. I get it that their evening was interrupted, but for crying out, there's no excuse for lack of compassion to the imminently dying and to their family. Mom passed about eight hours later.
I complained to the agency. The woman in charge of the agency was horrified. I recommend speaking with the person in charge of the agency. It's hard enough for what your mom and you are going through. You should have a focused, kind person caring for your mom (and you).
You might also keep in mind that she does many visits a day and sometimes her schedule gets screwed up by other people. And it may be possible that she is also taking on another nurses caseload or partial one.
Don't "confront" her just talk about what is going on.
If you do not get anywhere with her or do not feel like talking to her call the office and ask to talk to her supervisor.
Your agency COULD schedule as do repair companies - a particular time block on a particular day. That is not rocket science.
If you at least know what day the nurse will be coming, make your plans for that day flexible enough to allow for interruption. Don' make other appointments for hat morning or afternoon. Don't start any projects that cannot easily be interrupted.
Don't start making a souffle on Hospice visit day.
Providers have no way of knowing what their nurses are up to if people don't speak up and tell them. This nurse has shown that she is in the wrong industry at this season of her life. Not caring and speaking out of turn are clear signs of burnout.
Our hospice provider for my sister was happy to send other care providers if we were unhappy with them or their attitudes.
I have not spoken with anyone just yet, and I'm hoping a friendly reset (this week) will resolve this scheduling issue. If it not, then I'll escalate the scheduling issue along with other concerns.
I was just simply seeking suggestions on how to approach this.