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So mom's hospice nurse can't seem to set or keep to a real schedule with respect to in-home visits. In the beginning (Feb 2020), we set a schedule for Tuesday mornings. That worked for about 3 wks then covid hit and we switched to virtual visits. Since July, in-home visits have resumed.


Here's the issue/irritation: when we were doing virtual visits she had a bad habit of reaching out 10 min before wanting to do a visit. Because it was virtual I would just drop what I was doing for the sake of getting it done. Now that we are doing in-person visits again, she has a bad habit of calling and wanting to drop by in 30 min or less. WTH?


I'm a very organized person and like to plan my week/days in advance as much as possible. So is it wrong for me to demand/expect a schedule with respect to visits? I'm the sole caregiver for my mom and I feel like she's not respecting me or my limited time.


Any recommendations on how to approach this with her?

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Nurture; It sounds to me like you are irritated by more than just the short notice given.

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.
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Nurturbynature Aug 2020
Thanks BarbBrooklyn, and yes you're correct.
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oK...I have worked in home health for 30+ years with part of that time in hospice care. You need to know this.... hospice is very, very very very very unpredictable. These nurses and aides have no idea what will go on during any particular day. There were times I could "stick to a schedule" but most of the time........no way. This is hospice. Our patients are doing unpredictable things ALL THE TIME which means, they are falling so I need to STOP ---- make a phone call... meds are NOT being given like they should... STOP....and make a phone call. Or someone is constipated... STOP and make at least 2 phone calls this time which instead results in having to make 3 phone calls. Someone calls me and needs supplies. As a nurse, I would love to be able to stick to a schedule but in hospice there really is no such thing. Not going to happen. While I am driving, getting phone calls. I need to go to the bathroom.... phone rings... constantly. I AM AN ORGANIZED PERSON. ALWAYS BEEN THAT WAY BUT... IN HOSPICE... THERE can be very LITTLE ORGANIZATION. Someone is actively dying.... I have to go check them out before I can continue on with the rest of my patients. I know it is frustrating for caregivers to have to wait for us... wonder when we are going to arrive but.... we cannot help it. We don't like it either but.... this is the way hospice is. I do call one daughter "when I am on my way" and then she knows at least that I will be there in less than 30 minutes.. that is.. if something else does not come up----if I don't get more phone calls. I hope this helps. Thank you....
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I think this is something you need to bring to the attention of the Hospice agency. I doubt if they know she is pulling this cr--. Appointments for home visits, except if there is a set time (although with hospice nurses emergencies will come up) scheduled every week, should be scheduled or at least confirmed the night before the visit. It's a common courtesy offered to all patients receiving any type of home visit (that's my understanding as an APRN who has worked with hospice nurses in long term care facilities anyway), nursing, physical therapy... Unless your mom is REALLY attached to her, I'd request someone who is more considerate. This is a difficult time for you. They should be accommodating you and your mom and not v.v.

Best of luck to you!
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Your time should be respected. Being assertive with ones own needs takes practice I found. Hospice works for your schedule and your mother's needs. If they ask you by chance if you are available and you are than you can accept and if not, do not accept. Friends and family too seem to believe dropping by with little notice is fine. It's not.
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My mom just started hospice 2 weeks ago. So far, the visits have been sort of "last minute" so to speak; the nurse calls me in the morning that she would like to do the visit that day.
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)))
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I don't think that you can expect a definite time with hospice nurses.

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.
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Dear "Nurturbynature,"

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!
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Dear Nurturbynature,
My mother was Director of Nursing for a Catholic Rehabilitation Facility that she worked at for just shy of 20 years. I remember growing up as a teen, she would have talks with us about the rights were for patients in a Nursing, Rehab, or Hospital facility. My mother always said, if we didn't feel like we were getting the care we needed, or that we saw a family member receiving, first stop, the Nursing Supervisor on duty, Second stop Director of Nursing, Third stop facility Administrator, final stop State Dept of Health.
Over the last 20 years I've had many members of my Knights of Columbus Council confined to Nursing Homes, Memory Care etc. One time one of my friends were receiving poor treatment. I went to the Director of Nursing's office, only to find, the DON was a friend of mine whose husband was a member of another council and I'd known her a lot longer than him. I explained what was going on. My friend told me the patient I was talking about who she knew to be a Knight, had Dementia, and couldn't remember many things. She assured me that was so, I still called his son who I knew and told him what his dad had said to me and the conversation with the DON. He told me yes he was aware of the situation and that truly, he was getting excellent care, he just couldn't remember things like when he ate, showered, etc.
There were other times, when I was a patient ie, had an appendectomy, or pneumonia etc. Where, I wasn't receiving Respiratory Therapy on schedule or Meds and complained. Unfortunately our Elderly frequently do not have the ability to advocate for themselves and we need to do it for them. I hope you find this answer helpful to you. I too have Early Onset ALZ and was diagnosed 4 yrs ago at the age of 57. This is a subject I care about and wanted to share what I'd learned from my mother.
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Nurses have schedules, but there are also emergencies that throw off their schedule.

As an example, late yesterday evening my wife somehow pulled out her catheter, (just the thought of it is extremely painful) I call the nursing agency to schedule a visit within 8 hours of the catheter coming out. The nurse came at 10 a.m. , spent about 45 minutes with us, before continuing his regular schedule.

This can cause a backlog for the rest of his day. Overall I think the majority of nurses try to keep their schedule.
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I do know your frustrations, I care for my mother also, and because of her weakness she didn't get up @7:00am anymore. She liked to sleep until 9:00am. We liked her to be seen by 10:00am through 1:00pm, only because she was ready for a nap at that time.
Like you said,it worked for about a month.
After that,it could be anytime.

I became more aware of what these Hospice Nurse's go through in one day.
They have too many NTD people to care for, someone could have just passed, they have so much paper work to fill out before pulling out of your home.
Changes of medicines, blood draws, Doctor calls etc.

If it's a half hour all the time,change your thinking.

Because one day you will see they will be staying with you the day your dear love one exits.
Your mother is not their only patient.
Can you imagine their stress?
It's always nice to put on their shoes for one moment.

And this is how I started to look at it and explained it to Mom.

Best Wishes
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