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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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Take charge. They work for you. They are not doing you a favor. They are being paid well for their services.

Of COURSE you're going to try to be accommodating. But don't hesitate to offer alternatives for your convenience and sanity.

Perhaps you could give all of them an idea of what works for you Mon thru Fri. Like afternoons after 1 PM are the best.

You might also call the supervisor or director of the hospice program you're using and tell them the problem you're having...asking at the same time if he/she knows of ANOTHER hospice program that has more flexibility. Be ready to provide your best times because, believe me, she isn't going to refer you anywhere. She'll solve the problem.
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Well done Maggie.......
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Stay calm and tell them that their surprise visit doesn't fit your schedule.

Is anyone at home with your mom during the day? Must YOU be there?
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I agree with Maggie....they are employed by YOU not the other way around!! Call the director and if you get nowhere call your Medicare rep and report the problem!!
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Has to be a compromise. I would set down your working schedule for them and explain your situation. Tell them where, if at all, you can be flexible. It is hard, I can attest after doing home health for years, and having a big geographic area to work around. What I did was put folks who had defined schedules high on prioriity as much as possible and then add iin others. It does get tricky, I can tell you. Hopefully if you can meet them half way since they are not making daily visits and half a win win. Sometimes understanding they are stressed, trying to fit it in, in a work environment that involves lots of difficult situations, but also expressing your own needs in direct, matter of fact tone, can get you what you want. Good luck.
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If you live in a more metropolitan area there are many many many hospice providers. I would talk with a care manager or discharge planner the hospital, nursing home, or doctors office. They will be able to recommend another hospice agencies. It should be a collaborative propress
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Hospice works for you/mom, and your insurance company is paying for their services. The Hospice Agency should utilize a patient centered approach. My heart goes out to you, while you attempt to work a 30 hour position and be a caregiver to your mom, during this very difficult time. It is important that you and your family maintain a healthy life balance and minimize your stress levels. An excellent Hospice agency will recognize this. An excellent Hospice agency should hire staff (including social workers) that will provide good customer/patient services. It is not acceptable to make an appointment with a caregiver and not show up for a scheduled appointment without a phone call and explanation. Please understand that you do have choices. I recommend that you share your schedule needs/ expectations with the Hospice Director of nursing. Inform them that you are seeking a Hospice agency/center of excellence that can support the needs of you and your mom. If you have any available time, do some research, or assign this to a trusted friend. Find out if your hospice agency is the best choice for your mom/family. I checked with nurse and doctor friends, other clinicians, and online searches to find a center of excellence/hospice agency for my brother. The hospital planned to "assign" a Hospice Agency to my brother. Fortunately I knew that we were able to select our own hospice agency, and selected the one that was highly recommended by trusted professionals. My brother's hospice agency was excellent! If you are not getting the service that you are paying for, please know that you can request to change to a different Hospice agency. BEFORE you change, please check with your preferred new Hospice provider, to make sure that they can provide services to you/mom.
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I am having the same problem with our Hospice. We live in a very rural area, and I have repeatedly requested afternoon visits. My dad is terminally ill, and mornings are very tough on all of us. My mom is 81, with mild Alzheimer's with me being caretaker for both.
They have tried to work around the schedule and seem to always blame the office for the scheduling, but I get different answers to the same request.
For example, I called and requested the nurse who comes out once a week also, to come in the afternoon. She called 10 minutes before she was coming and arrived at 10:00am.
When she left I followed her outside and explained again, that afternoon's were better for us. Next time she came she called 2 hours before hand and came in the afternoon. So far so good. We live in a very rural area and there is only one Hospice in this area.
Good luck and just keep requesting and calling. They are pretty understanding, but I think the schedule making is actually in the field nurse's hands.
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A regularly scheduled visit by your Hospice nurse should be able to fit your schedule. An added unscheduled visit may not but if there's a problem I'm sure you're happy to compromise. When the regular nurse is on vacation or ill, it can be difficult. My partner is a home Hospice nurse and fills in for others. She gets a call in the morning with a list of patients to see, usually 4. She calls them and schedules time that are best for them, but with 4-6, often miles apart, she can't visit all in the afternoon which is often the preferred time. There are days when she has to drive 30-50 miles between patients and will put on over 100 miles driving besides seeing the 4 patients. I agree that giving your regular nurse your work schedule and asking her to work within the ties you are available is absolutely reasonable. If she won't honor that, then it's time to talk to the supervisor and if they don't find someone who will, move on to another provider. You don't need the hassles.
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Actually Hospice does not "work" for you. It is a wonderful service that is paid for by Medicare. It only happens in the last days of someone's life.

Because there are so many people in the end stage of their lives, Hospice must fit all the visits into a certain schedule of work not of their making. They have no choice. So if your mom needs their service they must fit her into the schedule. Once that happens they will try to fit her in on your schedule but I say that with reservation.
Perhaps there is a neighbor or friend that can be present?
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Hospices is great & they will work with you.

I am about at the point where I am looking in to hospice for myself & I am so glad I'll have it there when I make the transition..
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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