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Just wondering if I'm a weirdo. I cared for my Mama for two years prior to ever having a home health agency coming to our home for bathing, etc. About one week into it, after finally acknowledging maybe they would help give me a break, Mama broke her ankle, the anesthesia during surgery pretty much rendered her completely bedridden and now hospice is involved. For the most part, they are fine. I love our nurses. The bathing aides are ok but a pill to deal with on occasion, but for the most part, Hospice is great! Absolutely!

Now.....I am not a needy type of person. I don't need someone holding my hand all the time, I have always been independent hence the going for two years before acknowledging perhaps home health assistance would benefit me and Mama. Here's the issue, included with hospice of course is the fare of a variety of personnel, including social workers, chaplains, and such. I do not want or need social workers or chaplains . I may need them some day. I don't need them now and don't want them here....They persist on coming out. The last time the social worker came, all she did was make inquiries regarding our financial situation, perhaps to ascertain whether we needed other forms of assistance, I don't know, but I found her questions nosy and invasive. She also began discussing funeral planning issues in front of my Mama, which, IMO is totally inappropriate...Additionally, I will deal with that as needed, when needed.

The social worker continues to, it feels to me, harass me about coming out here. I have told her point blank that right now I don't need a visit and really do not want one. She persists. This morning, our nurse called and told me she was en route with the social worker. (The nurse knows this is an issue with me)...I told our nurse she knew I did not want or need a social worker and she handled it ....for now...

Once again, here we are with the social worker. I had a long discussion with the nurse...What is the deal with the social worker???? Why are they so dang persistent??? I even asked the nurse is there something she knows that she is not telling me as to why this woman insists on coming? I also told her that while I started to call last week, I was able to handle my issue and so did not need a visdit.

I let the nurse know that to be honest the insistence of the social worker to come out is causing me so much stres and quite honestly, making me extremely angry, that I needed to know what I need to do to handle this. At this point, I do not want to go through changing hospice care providers as Mama is used to the nurses and I have gotten very attached to them as well. They feel like part of the family.

When the social worker comes, all she seems to want to do, other than inquire about our finances, is sit and stare at me...period...stare....it is unnerving and it makes me feel as if she is hoping I will fall apart so she will have something to write up a report about. I am sick of it....I thought hospice was here to help my Mama and me as well. Why are they causing me so much aggravation. Are they trying to make me angry so they can dump me? I don't get it...Am I the only one who has gone through this?

Maybe other folks enjoy the company, but to me for a total stranger who does not know me, to try to engage me about how I'm feeling...Besides the fact that I know I am going to lose my Mama, how am I supposed to be feeling. Honest to God, it is all I can do to be strong and be here for Mama. I do not need or want people coming in here trying to convince me I cannot make it through this alone. WTH????

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Countrymouse hit the nail on the head. Most social workers do a wonderful job and many are tactful and have a deep knowledge of services. However, like doctors, social workers and others can be a bad fit with a patient or client. This seems to be the case (I'm giving the social worker the benefit of a doubt, here).

It is the social worker's job, on many occasions, to be "nosy." However, to ask you about funeral arrangements in front of your mother is less than tactless, it's callous.

I'm assuming that your mother's Medicare is covering the hospice expenses, so I don't know what business it is of theirs when it comes to your finances. If your mother is on Medicaid and is receiving Medicaid paid services, then there may be some reason for this, however it seems as though it could be done in a nicer way.

If the social worker is checking on your mother's welfare, she should be able to evaluate things without a third degree on your finances.

I'd call the hospice agency and ask why this is necessary. If they say it must be done, ask for a different social worker. Just say that you two got off on the wrong foot and you feel that you are being blamed for something and don't even know what the problem is.

It does seem you'll have to speak up. If you can't approach the social worker directly in a way that she accepts (some people won't listen), then tell your story to someone else in the agency. You are under enough stress now without undue "services" you don't want or need.

Good luck,
Carol
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One thing that jumped out at me when you spoke of funeral arrangements was that you would make those arrangements if and when needed. If your mother is on hospice, it is a good time to do it. Perhaps the social worker knows that and can help you with it. She may want to know what type of service you want and what you'll be able to afford. Sometimes the patients want to talk about what they want for their services. I know my mother has planned hers many times, then settled for the same one we did for my father -- she thinks she planned that one new in her mind for herself.

I am so grateful that we had my father's funeral prepaid, and that we have my mother's prepaid. We bought expensive policies when I arrived here, but they have been worth the money in easing the burden that comes with a death in the family.
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PurpleIris, I can relate to your experience as well as your frustration. I just went through something similar.

I think health care is becoming more of a business model than most of us ever realized, especially since some hospitals have been acquired by businesses and are no longer non profits. These non medical people inject a different set of standards and values. I feel sorry for the medical people who have to work under these conditions.

But first, I don't know if you're aware but palliative care is now separate from hospice. It's not an end of life care; it's a chronic condition care, with a home nurse, visiting physician, and I'm not yet sure what else as we're just on the cusp of getting involved with it.

Why are some medical people pushy and aggressive? I think there are some company rewards for bringing in new patients. Based on information from someone in the medical field, I think also that pressure is being applied from the executive offices of the companies which own the hospitals. And I think physicians might be at the apex of this push down effort to find hospice candidates. $$$$ are probably somewhere on the incentive path.

Remember that many hospitals have limited or precluded freebies from pharmaceuticals, such as vacations and perks that some doctors used to enjoy. Perhaps now it's the hospice companies that have stepped in to replace Big Pharma freebies.

Decades ago I worked for some med mal firms, both plaintiff and defense. I recall a particularly horrible situation in Detroit when podiatrists were recruiting homeless people and experimenting on their feet. It was like something out of a Frankenstein scenario. Your comments on the aggressive doctor hawking hospice reminded me of that disgusting abuse of medicine by the offending podiatrists.

Back to pressuring for hospice....a speech therapist pulled that with us. She said she couldn't treat my father unless he agreed to a PEG tube. We'd been through that and rejected that option.

Then she recommended hospice, called her office and either that day or the next day a VERY aggressive staffer called and invited herself to my home to discuss hospice. Obviously her invitation was declined.

I recall the speech therapist was driving a car with as many ads on it as an Indy 500 car. I haven't found out anything yet about agency rewards to employees who bring in hospice patients, but I suspect she did get some kind of benefit for recruits, financial or otherwise.

Again, the vision of body snatchers (live ones this time) looking for bodies to dump in hospice springs into my mind.

I raised this issue in the next visit to one of our long treating doctor, who said this woman overstepped her bounds, that diagnosing hospice placement is the purview of a doctor, NOTa therapist. He also found a flaw in her so-called logic.

When another event occurred that irritated me, I fired that agency, after going back to one we had had before. They're so dumb and disorganized that a month after they were fired someone called to follow up on my father's progress. This woman didn't even know their services were terminated.

I really do think there are incentives of some kind for staffers who hook (and I do mean hook, as in snaring an unwitting individual) people for hospice. If they have their own doctor, that doctor can DX the need. Then the specialty and treating physicians are cut out.

I have a feeling some of this developed when the ACOs began to affiliate with doctors. I rejected them too and called Medicare to advise that neither my father or I would tolerate their intervention. They asked stupid questions that were so basic, and they offered nothing in return.

ACOs are profit companies, and in doing research I learned that the referring physician "shares" in the revenue. Kickback? Depends on how you look at it.

I think you're justified in firing these people. If you want to continue care though, you'll need another doctor's script. When you contact home care companies, raise the issue of pushy people trying to recruit for hospice, and announce that any mention of that in your home will result in the agency being terminated.
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Thank you both. That is what I am not understanding. I have been told over and over and over again that I am an excellent caregiver, that Mama is always obviously very happy and well cared for, so I have no idea what is going on. After the nurse left, I did decide I might need to just call the social worker directly and point blank ask her what is the deal???

I totally understand their first duty should be to protect and care for my Mama...absolutely. But there have been issues with other things where they have taken such an ambivalent approach it is hard for me to believe this person is doing little more than perhaps working on a thesis.

I have already called the social worker before, made sure I was nice and calm when I called and told her that I knew she was there to help, but that we were fine and if I needed help or to reach out I would certainly do so. Now, the way they are making me feel, I would have a hard time reaching out if I felt the need because I feel so aggravated by this insistent little turkey.

The times when she has come, I have been calm when she arrived and by the time she left I had gotten all worked up and full of sadness. I have a hard time believing this is supposed to be helpful. But I think I am going, at this moment, to call her and find out what is going on....something seems odd about this whole thing. Thank you so much for your input....it is the strangest thing I have ever seen out of a hospice agency and no one I know ever had to go through this with one. We used the same one with my Dad over 18 years ago and they were nothing like this....had they been so I would never have engaged them again..

Oh, while I'm thinking, in case it makes a difference, Mama does have Medicare...is NOT on Medicaid, so that is why I can't figure out why our finances are any of their business. Our home is always clean, and everyone is happy when they come....a lot more so than when they leave lately....were it not for absolutely needing a nurse and the help that provides with physicians services, I would do without them altogether...and isn't that a pity???? I just don't understand.
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I have a feeling that hospice social workers are used to dealing with people in real emotional need, so when they find someone who isn't they don't know quite what to do about that. And probably also some people in denial. I had that when we brought in hospice for my father. I was sad, but I wasn't falling apart. I'm not religious, so I didn't want that kind of support (neither did my dad), so we made that clear.

When my dad died, the social worker wanted to come be with me (on a Friday night at like 8 PM) and I was trying to say, "No, no, no, I'm fine, don't ruin your Friday night!" I think I finally convinced her I didn't need her to hold my hand. My dad was 92, so it wasn't like his passing was unexpected. I appreciated their concern, but given who I am, it was a bit too much for me. I did better processing things on my own. I agree with speaking up - you're their client (along with your mom) so you have a right to call the shots about their involvement.
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How dare they discuss funeral issues with you in front of your Mother! My "Mama" passed yesterday. We thought we were going to have some time, but it all happened so fast. Because I'm not incredibly clear headed right now and in a "don't s**t with me mood," my opinion may be 100% wrong, and if it is, I'm sorry. I would basically tell anyone who are irritating you to leave you alone and that you need time. Also, if they want to come by, they need to schedule it with you. I wouldn't even answer the d**n door for the Social Worker given her intrusiveness. You have rights. If there is someone you don't like or you find difficult, complain & toss their ass out of caring or visiting. This is a time for you and your Mama to feel comfortable and surrounded by love & care. There is nothing wrong with saying I'm not comfortable with this person or asking the Pastor to call first. All decisions are yours and sweet Mama's (if she is able). Even the doctor told me "don't let anyone push you around or step on your toes. This is YOUR time (and he was talking about social workers, doctors, etc.). (I love you call your Mom "Mama" -- I called my Mom that sometimes too). It's so touching. Please let me know how things are going. I won't be on this site much longer.. ❤️❤️❤️
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LEP627 I am so very sorry at the passing of your Mama...I can only begin to imagine but I already know how incredibly painful it must be. I will keep you in my prayers...May I say to you that what you said is exactly how I feel...exactly. this is our home, this is our time. Mama is the priority and that means no intruders who cause stress or strife or aggravation to her especially, but to me as well as my mood cannot help affect her surroundings. After our long phone conversation this afternoon, I feel I finally got the point across and am hoping for better days ahead. It just really threw me for a loop how folks seemed to be so blasted pushy and invasive at such a time....if I was an "iffy" character and Mama was not being cared for it would be one thing, but it is obvious she is very happy and very loved...and very well cared for. So thanks for understanding that as well....

Again, I am so sorry for your loss. I will keep you and your sweet Mama in my prayers...
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I Googled "Why is palliative staff so pushy?" and your message came up. I am frustrated beyond belief. My sweet Mama had a massive stroke a couple of months ago because the doctors at the hospital took her off her anti-stroke drugs. This hospital didn't know how to care for her so they took her by ambulance to one in the closest large city. We didn't know what was happening as Mama was in the hospital originally for what we thought were heart related issues. No one told us anything. During this entire time (numerous hospital and nursing home stays), the palliative/hospice people have been stalking me non-stop. What is the issue with these people? Why are they so pushy? They would use the word "hospice" in front of my mother! One of the palliative doctors even stalked me in the hospital hallway. He lied and told me Mama could not return to the nursing home and had to go to palliative care. Not only is this a lie, but it turns out that he owns the palliative facility! Mama is now home with me and the home health care folks that come out seem as if they're trying to force us into palliative care and keep mentioning that same stalky doctor. What gives? Is someone getting a kick-back? I trust no one now and am suspicious of the motives of everyone involved in her health care. I realize I'm not answering the original post and I'm sorry. Just thought you'd want to hear my experience. I am going to fire them all. The only one who even helps a little is the one who gives her a bath, but she's stopped coming anyway. Pushy, unhelpful, uncaring people at this most difficult time in our lives. Good grief!
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Oh my goodness, I do not want to sound like I don't realize that hospice is about my Mama...I totally know that...That is why they're here and I know that. Mama is nonresponsive to people now, period...she does not know these people and it concerns me that so many different people, especially people she does not know, congregating at our home makes her wonder deep down inside if she is "going"....

My entire point is this is a fleeting and precious time for our family. I am appreciative for the help, but piling in on me when I am already exhausted to quiz me on how I am feeling is not helpful. And that is not enough, to keep digging until she makes me a nervous wreck is unacceptable. I am and have been the only person who has been here for my Mama over the course of the past eighteen years. My brother had his own life to live and let me tell you he made sure I knew it. His two kids whom my Mama loved more than life itself have totally disappeared. I have planned Christmasses together, no one came. I guess you have to be here to know. There is nothing on this earth that matters to me but making sure my Mama is happy, comfortable, knows how much she is loved and is able to have peace at this moments in life. I know it is not about me. I'm not saying it is. But in order for me to be here for her then I think it matters that people who are getting paid to do what they do do not continue to push things on us we do not want or need.

I am constantly asked to help the bathing attendants bath and lift my Mama. Whom do they think helps me when they are not here...me, myself and I. They come in the door griping about how tired they are, how they wished they were home in bed. I addressed these issues and it did not matter, the worst offenders continue to come. I have even told them I will do the bathing myself if that is what they want...I have tried everything to make it as easy on them as possible, so I do not think I am making it about me....that has probably been my main problem in life, I made it so easy on everyone else, no one understood that when I did ask for something specific, it just went ignored.

And do not misunderstand when I say I don't need emotional support. I just want it from the people I love, not total strangers who do not know me or our family...those have been few and far between also...but folks need to understand my Mama and myself are both very independent people and have had to rely on inner strength a LOT in our lives....It is the only way I will make it through this...Everyone else seems to already have written her off....they're already moving on with their lives...I have not moved on....My soul is searching for that comfort through Christ and my faith is all that is getting me through this. No one loves their Mama more than I love mine...I sit beside Mama and pray sometimes with her, sometimes to myself...I talk with her about our life. I make sure she knows how proud I am of her and how much I love her and how much we all love her. So please do not think I think it is all about me...The only one who matters through all of this is my Mama.
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I will also add that during a time a couple of years ago when Mama had fallen and broke her leg, we received help through this same agency...BUT....Mama did NOT want the bathing attendants...I did her baths...the only help we got then was the PT and the nurse....and once they cleared her, they were done...Mama has never wanted home health when she was able to speak her own wishes...but I know now that she needs the nursing and physicians services that hospice is able to provide. I am very thankful for that and I love our nurse immensely.
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