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My mom is currently under Hospice. The only regular set appointment we have with them is the nurse, who at our request, only comes 1 time a week. Last week the social worker called 1 hour before the nurse and wanted to know if she could come at the same time as the nurse. On the message she said if she didn't hear back, she would just come. She didn't come nor have I heard from her again. Yesterday, when the nurse was there (at 4:00), she told me the "ONLY" time the Nurse Practioner could come was today @ 9:30 a.m. That gave me less than 24 hours notice. Not only am I the only caretaker for my mom but I provide the insurance for my husband and I which requires I work 30 hours a week. I feel like I had no choice but to adjust my schedule since it was the "ONLY" time she could come. Am I wrong in expecting they should work with/around my schedule? I understand due to the nature of their work, their schedules may change and I am okay making the changes when a family is in a crisis situation. What are your experiences with Hospice. Is it normal for them to give such short notice? I'm about as stretched to the limit as I can be.

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I had nurses and aides coming when they wanted to. I asked for a smaller window. OT/PT set her up for an approximate time. The aide called me when she got to the patient before Mom. Nurse called the night before. I'm it when it comes to Mom. I had other things I needed to do. This same Homecare agency is our Hospice. Not many in my area. I am very aware of their time vs mine. I understand they can't pin point when they will show up. But, we were able to compromise.
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Alzheimerscg is best answer. Stop this attitude of who works for who! We work for patient & if she can't be seen because I'd your limitations then You owe her a chance either someone more flexible. I am a Hospice Case Mgr & was appalled when s family made us wait 30" while the ate & stuck us in front if Judge Judy! I will recommend releasing this or from Hospuce so we can go where we are needed! You may be spread too thin to sponsor Hospice patient. Best of luck
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For those who didn't know, Barry Goldwater had Alzheimer's later in his life.
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Re-reading my previous post, advising people to be rude to anyone was just plain rude. Sorry.
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Jeanne, you are right, of course. My issue was with the social worker not showing and not calling. I have had to intervene for a patient when his visiting nurse repeatedly missed appointments, did not call, and he went without care, finally going to the E.R. to have his catheter changed, and in-pt hospital due to a UTI.
I am not talking about when someone is delayed by a patient's needs, but instead the nurse had her kids that day, etc. (Allowing personal lives to interfere with getting to the patient without arranging for a replacement is, imop, unprofessional).
I respect the medical professionals, but sometimes they too have issues that need correcting. Mom Mandi was doing her best and was put out by the social worker, etc.

The hospice team and the caregiver and the client should be able to work together after settling in to a plan, and yes, I agree, things can change so people need to be flexible. I am not taking sides. And then, I am not a hospice professional.
I do not have a family member on hospice. People on here have said that hospice goes to the nursing home, not to the home, but that is their experience. My experience is that hospice comes to the home and they are are so very good that now, people are not only comforted, they live beyond the 6 months!


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When I needed my garage door fixed, I was told to expect the technician between 1 and 6. The plumber won't usually commit except to "Monday or early Tuesday." I can get the exact hour I want for my next doctor appointment -- if I can wait until February 3rd. If I need to come in sooner, the closest they can come is 2 hours earlier than I want, in two weeks.

Why do we accept the need for some flexibility in other services we order, but expect a worker whose client before us might have a critical and time-consuming need, or whose client's caregiver might be in total meltdown and needs some compassion, to show up at an exact time?
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beenthere60, do you really think scheduling a bathing service is equivalent to scheduling hospice? I commend your strategies for dealing with regular home-care services. And keeping a window of time open makes a lot of sense. The same general approach to working with hospice should work well -- but a lot more flexibility may be needed.
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I understand your need to work, MomMandI. Who is with your mom while you work? Could that person occasionally let the nurse in and report the session to you? Naturally you would like to be there when the nurse is there at least some of the time, but when that doesn't work out, could the caregiver take on this role?

Sometimes when the nurse visited my husband it was almost like a social call. She took vitals and checked for bed sores, etc. but if there was nothing needed the call was fairly short. Sometimes some cares were needed and she got it done. Those visits were longer.

Scheduling hospice visits is not like scheduling three cleaning jobs a day, each to take 2 hours. The time needed depends on the specific circumstances of the patient -- and often that can't be predicted even the day before.

Sometimes our nurse showed up a little earlier than expected, because her previous patient had light needs. Sometimes she was later. Sometimes she had to reschedule. This flexibility was a bit inconvenient, but I was sure glad for it when it was my husband who needed the extra time!

The social worker should have called to explain why she didn't come when expected. Death is not scheduled but it has to be addressed whenever it happens. Emergencies happen. I would not fault the social worker for not coming -- but for not communicating the change to you.

Some patients are on hospice for months, some only for weeks or days. The patient population changes all the time, and with it the need to adjust schedules.

Frankly, I think the attitude that if the hospice agency cannot meet your scheduling needs you should find another agency is impractical and unrealistic. Yes, they work for you -- and for a large number of other clients who have scheduling needs too. "My needs should always come first" is not looking at the whole picture with compassion.

Yes, if your cleaning person can't meet the schedule you prefer, find a different cleaner. If your hair stylist doesn't have an standing opening at the time you need it, find a different stylist.

Hospice? Understand the complexities of scheduling service and try to work within their framework. State what you want, but don't expect to get it every time. Lots of other clients are stating what they want, too.
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Be rude right back, don't let them in if they just show up at your door, especially after not showing up or calling to cancel the prior appointment.

Then, there is always the passive/aggressive answer, "oh, I forgot you were coming, that is why I was not home".

These tactics seem mean, however, if they are out to ruin your sanity, let the consequences lie with them. They won't get paid.

I was around when an R.N. tried to help a neighbor with antibiotics, I.V., but the neighbor did not come home from the hospital, instead spent overnight elsewhere. The nurse made it a point to return to do the job.

Lighten up, stop running around to accommodate everyone. It will all get done by them. You just don't work for them.

We n e v e r answer the door.
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Repeat after me: "Make an appointment'".
Or, "SEND SOMEONE ELSE".
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YOU are their employer.
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Helpless 2015.... ferris was using the term as a good thing, and I feel there can be a lot to be said for not needing to make a profit when delivering care. I experienced horrible care for my elderly mom many years ago and I feel it was due to people watching dollars rather than patients.
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She was just answering my question about profit vs non profit. Please, let's be kind to each other! I think the point here is that, yes, hospice should try to accommodate family schedules. But, this is not an ordinary job situation , where appointments can be set and kept without any disruption. If you don't like your hospice provider and can't get what you need, then change.
The nurses helping us are great, and I'm glad they are being paid well. They deserve it.
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Ferris.... does mentioning Barry Goldwater make a difference to you or to us? Non-profit, does not always mean what you think..... How does that nurse get paid? Are there that many donations? and are they only for the ones of the rich, political, famous? what does his name or his widow have anything to do with this post?
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I think that we all are experiencing different types of pain, confusion, loneliness, exclusion and friendship... this site has helped a lot. But, after still surviving the crazy, waves of doubt and trying to give my parents the dignity and hope that they deserve, and still have for now. It is US the caregivers that are the ones who need the organization, help and all together support also.... I highly respect all of you on your love, honor and yes, duty to your loved ones. Without us, where would they be? In the hands of a weekly paid employee? Who doesn't see the person we see as a loving, caring, giving person that raised us, or has stood by us through thick or thin. No questions asked.

I am not putting down Hospice at any point. The fact is, we have to stick together as a whole, give the support as a whole, not just by one person's good review. No one has lived in our shoes, and everyone is different. I understand that and I also love my mom and dad, God above and the USA. All that has given us the pride, determination, love and free will to decide what is best for all of our family/friends/significant others and total strangers.
Be Strong, Be Loving, Be committed and above it all....be true to yourselves, trust your judgements and please, please take care of your heart, mind, body and soul. We truly are sisters and brothers in arms, with a tough fight to battle for them and for each other. Live happy with knowing you are doing your best and Live free with the choices you have to make!!!! Ultimately, they are the right ones!! Trust in yourself!!!!!!!!!!! God Bless you and your loved ones!!!!
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I can't really answer your question as I was on duty 24/7 with my Partner. There were times when they would not come, but that probably only happened once. Imagine that the nurse got a call that one of her patients was dying or passing and it just so happened on the hour she was to be at your house. I know our hospice is overworked and they need more nurses. We don't have the choices of Hospice like you do in the big cities. We have only one. I was not crazy about his nurse, but there was little I could do about it. And, I certainly did not wish to make waves for the organization that was caring for my partner. After your mom passes, you will receive a form to fill out on how you felt about your Hospice nurse and others that worked with you. Be honest and let them know what happened. Think about the fact that they do this day in and day out and probably get a bit hardened. They cannot help it. You and I only deal with this with ONE patient. We are sensitive and can feel all the missteps they may take.
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Who is with your mom while you are at work? Is she left without anyone there during this time? Can they let them ( hospice nurse) in to do their visit with your mom?
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My mom is in hospice care. I have had no problems with them at all. They are flexible and accomodating with us. I have discussed the best times for their visits with the nurse, her supervisor and the aide and her supervisor. I did need to be a little bit flexible but they have gone above and beyond with trying to accomodate us. If you don't get a positive response from the nurse of social worker, remember they have a boss and I would go to that person.
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While I understand that Hospice is great and we certainly need them but they DO work for you and are paid by the insurance company. They should discuss the hours needed by the family and schedule accordingly. A family is going thru at that difficult time without having someone show up unexpected. MomMandi, you have every right to expect them to come at your time especially with they only come 1 time a week. Surely that person can accommodate you with that one visit. If not, call the director of the Hospice and talk to them. You are the primary insurance holder and your wishes should be respected. They are receiving a fee and they should work on your schedule. You sound like you have been more than fair in giving them several different times for them to come visit as long as it's in the afternoon. It shouldn't be a problem for the Hospice to change their schedule with another patient to visit it the morning and let you have an afternoon slot. If they still won't work with you, notify your insurance that you will be changing and then find another Hospice in the area.
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Hospice of the Valley - a non-profit means they get their funding from donations and volunteers. They are great! The director is a former nurse and widow of Sen. Barry Goldwater.
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I don't have experience with hospice yet, but had the same "problems" with Home Health for nurse, social worker, PT and OT visits. I did exactly what has been suggested. I contacted the director and the social worker and told them both that I needed to be contacted the night before about the visits. And, I talked with the individuals visiting and asked if we could set up a semi-regular appt. For instance, the PT came on Tues and Thurs around 12:30p. But I was flexible if he needed to come a little earlier or later based on his earlier calls. So I blocked about 12:00-2:00 for his visit. It worked for us both and he appreciated the set schedule. The worker that came for bathing was the same way. It took me a month to get their office to hear me. I finally just point blank said....if you can't accommodate my schedule I will find a service that can. And, by the way, I agree with what is said above. These companies are well-paid and there are a lot of companies out there offering their services
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I was wondering that, too. I just assumed your husband since you r working for insurance. Our hospice require someone being with the patient 24/7.
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My mom is with Hospice of the Valley. They are a non- profit, though I don't really know what that means. All I can say is, they are wonderful. My mom is end stage CHF, and going downhill fast. They are arriving almost every day, whenever my dad calls them. They do not rush, even though they have a list of other patients to see. I do agree that they will show up at any time, with or without much warning. It's not a problem for my parent's situation. I've never met a more dedicated staff, and I'm grateful. It is no "average" job.
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MomMandI, just curious who is home with your Mom when you are at work? Is there any reason you prefer whomever is home with your Mom not let in the Hospice group?
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Mom had OT/PT the Monday after she came to my home the Thurs. before. They wanted to come the day after she arrived, Friday. I said I'd rather they waited since her being here was all new to me and her to. They agreed to wait till Monday. I had aides from same facility coming at all times. Called and explained that I needed more of a schedule. I was babysitting at the time too. I explained that Mom is not at her house where she is considered a shut in and they know she will be there anytime. I agree, call the person in charge, administrator maybe. Explain that you work and the hours. You need them to work around you. If the NP and Social Worker know ur schedule ahead of time, there is no reason they can't schedule around you.
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With folks in hospice, one never knows what events will occur at the last home. So try a little compromise, explain your situation, and/or find another hospice company. Here in AZ we have a great hospice called Hospice of the Valley, and most of the caregivers are volunteers and it is free for the patient.
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Maggie said it all. I've been through this with home care and found it became irritating when someone called and said she'd arrive in an hour or so, especially if that was a different time than previously scheduled.

I know it's hard to schedule, but some agencies managed to do it successfully. So can this hospice company if it wants to keep your business. I don't agree that you have to be subordinate to their demands. Scheduling and balancing workers and client's schedules is a major required support, and agencies need to have people who can handle it.

As to whether hospice "works" for the client, there is in place a contractual arrangement by which Medicare pays for the work which is contracted directly by the family with the hospice. So there is a direct relationship with the agency. I don't think it's inappropriate to consider that hospice is providing a service, for which it is paid, and that it needs to provide scheduling that meets the client's need.

But a collaborative approach is also helpful so that you both can be accommodated. Perhaps you can work out a schedule so that their visits coincide with the times you're home so you don't have to take off time from work.

And I would tell the supervisor at the agency that the worker who never who never showed up will NOT be considered a part of team. Ever.
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Ask to speak to the hospice director. Tell him/her your situation and that you must work to keep your health insurance coverage. Tell them they have to work with your schedule, otherwise you will file a complaint with Medicare. Tell them you don't want to be trouble-maker and that you're wanting some flexibility with your work schedule - but they must work around your schedule so you can keep your insurance coverage. Your priority is your health insurance. Tell them if they're not willing to work with you on your schedule, then you'll be looking at other hospices. Hospice is a big-time money-maker. Yes, they provide wonderful and compassionate care - but they're out to make money like any other service provider. Sorry to sound cruel, but it's the truth. Just like with any other service, you take your business elsewhere if you're not satisfied. You should ask the hospice case manager when is the end of the evaluation period. When my mother was on hospice years ago, the re-evalution period was at the three month mark - but hospice submits reports one month in advance. Again, this was a long ago and rules have changed since then, but I think it was at the re-evaluation period is when you change hospice services without causing a big stink. I didn't change hospice organization. Nonetheless, you need to find out now how do you go about changing hospice services - not that you want to - but you need to be informed with all the information before you speak to the hospice director or any other decision-maker. When you tell the hospice that you're looking to change services, this alone may make their ears perk up and get them to work with you on your schedule. Tell them you need a minimum of 24hrs notice for any changes so you can notify your employer. You have a choice. Don't let them push you in the corner - you push back because it's your health insurance, it's your job, it's your paying the bills that's on the line. If you do get fired, do you have an unlimited source of income flowing in so you don't have to worry about paying bills or getting sick and having a stockpile of cash ready to pay for this and that doctor? Most of us are not that blessed! :-) We have to work.
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My husband died November 3 after nine months on Hospice. These wonderful people did not work for me....they helped me, loved me, bolstered me when I thought I couldn't take another step. I was 24/7 and I know I wasn't working outside the home so any time they gave me was appreciated. They bathed my husband every day. I would get a phone call the night before saying what time they were coming. I found out this was on their private time AFTER they finished a day of caring for others. I told them to quit called...I was always there and if I should for some reason have someone else there, they were always welcome at whatever time they could be here. I also kept bowls of candy for all of them, the aides, the nurses and social worker. I kept my door unlocked and told them, knock and walk in. They did. Some liked mints, some liked chocolates, some liked bridge mix....it was little that I could do for them when they were helping me care for a man who was 6' 6" and impossible for me to move. I never found them unwilling to work around my schedule. They have so many patients and they pour their hearts into caring for them. I love them for helping me through the last nine months of his life. I miss their daily visits. I miss them listening to my bad days and good days. To all the hospice people out there....a big thank you. I think if you explain your problem to them, they will be more than willing to work around your schedule. I love you as you go through this terrible stage in your Mother's life. I pray that you will find peace. I have. God bless you and lots of hugs.
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Hospice DOES work for the patient. Without the patient signing a contract or caregiver, that Hospice worker would NOT have a job.
Yes, I agree it is a wonderful service, which they are PAID to do. They decided to WORK as a nurse, dr, etc and was their choice. But, do not insult everyone's intelligence, by saying they do NOT work for you. Also, like any drs office, practice etc..... they are there to make a PROFIT... or they would not being doing it,... ie, doctor, lawyer etc......
I also agree, they are sent to ungodly places to work, especially with the distance. Any company should have a person in charge of scheduling no matter if it is for services, materials, supplies..... such as a dispatcher.
Again, I do think it is a great service for people, who need the care and mostly for those who are alone. The caregivers are the backbone of all of this, and Hospice is there to provide what service they can or will offer. While a caregiver is NOT paid, but Hospice is through the patient's medicare or any secondary insurance. Usually, the secondary.
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