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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.
Best of luck to you!
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)))
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.
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!
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.
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.
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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