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I got Hospice involved and with my dad and they were great, with my mom most of them have been really good and helpful, I took respite for 5 days when I found out it was available cause I knew nothing about it and that's helped tremendously, but I get a call Wednesday from another hospice SW and here comes the I suggest you throw money at the problem mentality that I have a huge problem with, first was the suggestion of adult day care 3 times a week... that's $50 per day, $150 per week and $600 per month, I explained money was an issue and got the "But it's only $50 a day" response... WTH.!
Conversation continued then I stated : "Knowing I have the option for respite every 30 days helps a great deal if I need it." and the answer I got peeved me off to the point where I'm still fuming her response was : "That's not how it works and if you were to do that we'd find issue with you as a Caregiver and take action from there."
Problem is that is how it works from everything that's been explained to me by other SW and the Nurses, I even asked around and other people that have been through this said that sounds absurd that this SW would even say such a thing...
Am I wrong or right that respite is 5 days every 30 days if one chooses to go that route.
Please keep in mind this isn't my big idea to do this but if it's a rough month then of course I need a break, I need a break. I'd like to keep mom at home as much as possible though so this is not in my plan, but to be threatened in this manner I take issue with that, Obviously this SW has never been through this with anyone or she just cold hearted.


I'm going to be calling the SW I normally work with and see what she has to say but I'm interested if anyone has ever gone through this before.
10 years I've been a full time Caregiver and the only time I've ever taken off was when mom or dad (Dad's passed) was in the hospital and even those times I was on call to deal with mom when the hospital couldn't manage her, seems I take one respite and all of a sudden I'm an evil villain because I mention it's good to know the option exist.

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I would put a letter together detailing everything that was said and send it certified mail to her supervisor.

The way you were treated is out of line and I would be looking for another hospice provider if she doesn't get pulled off your case.

I am sorry that you have been subjected to this hateful, useless social worker.
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madhatter632 Jul 2019
I posted an update above but thank you for your input, I've just never felt so insulted by someone that should be helping........... There's always one in the crowd, maybe what they need to do is send her backside over to our house and she can take care of my mother for a couple of days and see what's it really like, might change her tune a bit.

I'm just still fuming being talked to in that manner and wanted to give myself time to cool off before speaking with our regular SW, I didn't want to accidentally take anything out on her for someone else's actions.

Thank you for your support.
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I'm going to give a quick update............
I called one of the SW I normally work with and she was also floored by what I was telling her and now she's going to her case manager to find out what this other SW was thinking.
As it turns out I am entitled to 5 days respite every 30 days without being accused of failing to perform the duties of a full time Caregiver, also interesting to find out mom hasn't been seen by any hospice doctor while at the hospice house so where this SW came up with a medical diagnosis to tell me my mother isn't as bad as I'm making it out to be was total BS.
I also informed them I was billed for medical transport when hospice was the one that insisted on the transport.
Seems they have a loose nut behind the steering wheel that needs to be addressed.
Right now I'm waiting for a call back.
I'll update then but please keep in mind this hospice other then this episode has been simply outstanding to not only myself but both my father until the end and now my mother.
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Isthisrealyreal Jul 2019
I understand that they have been great, my point was if she doesn't get pulled off your case then they have obviously changed and you don't want to be continually subjected to this kind of treatment.

I am happy that it is being addressed and you get 5 days respite a month. That is fabulous.
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I posted an update above but thank you for your input, I've just never felt so insulted by someone that should be helping........... There's always one in the crowd, maybe what they need to do is send her backside over to our house and she can take care of my mother for a couple of days and see what's it really like, might change her tune a bit.

I'm just still fuming being talked to in that manner and wanted to give myself time to cool off before speaking with our regular SW, I didn't want to accidentally take anything out on her for someone else's actions.

Thank you for your support.
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It's sad to say, but in my experience social workers can't really be relied on for information. Some are better than others. I have never met one that didn't say something that was wrong. Always talk to more than one social worker about any topic. Ideally as many as you can and get a group consensus.
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madhatter632 Jul 2019
I've got 2 Hospice Social Workers that work with me on different things they both been great so far...... whoever this rogue person is or was, was not assigned to my case and therefore at least according the the supervisor should not have even been speaking to me unless it was some sort of emergency.
Always verify the information with the people assigned to your case and yes I have all their direct cell numbers to contact them when needed.
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I know this is pretty much settled but I am a little confused.

Mom is on Hospice in a facility?

This SW was from another Hospice? Not the one Mom is with? If this is true all you had to say that Mom was placed with Happy Home Hospice. You are now working with them with the care of Mom. Thanks for calling then hang up. I think she stepped out of bounds. Really? Daycare for someone who is ready for hospice.

I am not big on SWs. Most I have dealt with don't look out of the box.
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madhatter632 Jul 2019
I'm sorry if I wasn't 100% clear, my mother is in the Hospice house the same hospice that is helping me at home, the Hospice nurse recommended the Respite because of everything I was going through from when mom came home from the Nursing Home Rehab center, mom was returned to my care in worst condition then when she went into the rehab center (rehab center and Hospice are two different agencies), they had her medications all screwed up, mom was so out of it she couldn't do anything for herself, it was a true nightmare, when I took mom to her regular doctor his attitude was about the same as the rehab centers, That's when I called this Hospice and they jumped right in and got things done.
Best example I can give you is when mom left the rehab center I was supposed to have a wheelchair by that Monday all they needed was her doctor to sign off on it, didn't get the prescribed wheelchair for 2 weeks.
Hospice came in asked what I needed and I had everything before the end of the same day they admitted her into their care.
This Hospice has saved my backside so one bad experience I won't blame on everyone that works there.
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Mad; I wouldn't be insulted, but I would be concerned with the fact that this rogue SW is calling clients and making these sorts of comments.

I'd work with your "good" SW to get what you and Mom need and ask how to best get the rogue person reined in. As a colleague, your SW may be constrained in what she can do/report. As a client, you probably have much more power to get some corrective action taken.
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madhatter632 Jul 2019
Thank you and I did exactly that...... Not just for myself but others that might have to deal with this person.
Come to find out over half of what she was telling me was an outright lie and the center has dealt with this individual already, at least she's no longer allowed to speak to me.....
The kicker in the end was she misrepresented herself as she's not even a Social Worker just a Nurse (Probably on some power trip.)so she had no authority to say the things she said to me in the first place.
I'm just glad it's behind me and all straightened out now and I seriously hope no one else is ever subjected to that type of treatment.
This is a really good Hospice and this is the first time I ever had any issues, I don't blame anyone but that one individual that went rogue for whatever her reason......... Maybe my mother broke her....
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I don't even know what an SW is, so I am REALLY out of it, but if you are getting two different answers regarding all this, from two different entities, I would suggest that you honestly need to get to the supervisors and see if you are being milked like the proverbial cash-cow. It kind of sounds like it. And especially with someone saying "It is only 50.00 a day." That has to be some kind of truly bad joke. Then you honestly were THREATENED in my book. I don't know about letters, but I sure would start one heck of a diary. Wishing you luck in combing this out. You are correct in thinking that something here is very, very wrong. I would also tell this person that I am recording the call, and then I would record it. If this person refuses that, I think you are looking at something suspicious right there.
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worriedinCali Jul 2019
SW=social worker. And the OP has resolved her problem.
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From Medicare.gov: If your usual caregiver (like a family member) needs a rest, you can get inpatient respite care in a Medicare-approved facility (like a hospice inpatient facility, hospital, or nursing home). Your hospice provider will arrange this for you. You can stay up to 5 days each time you get respite care. You can get respite care more than once, but it can only be provided on an occasional basis.
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madhatter632 Jul 2019
It actually states Respite can be used as many times as one needs but not to exceed 5 days out of every 30 days.......... so every 30 days from the date of ones last Respite you can take another 5 days of rest.
This was fully explained to me directly by two different Social Workers and Senior Affairs of Florida.
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That is very generous respite care. It's good of the state of Florida to be willing to cover that. The person I know here in Wisconsin who wanted to get respite coverage when his mom was receiving in-home hospice services could get it for only 5 days every 6 months and even that was hard to arrange.
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madhatter632 Jul 2019
It was explained to me that this is a Medicare standard for Respite, I have also heard though that some care management facilities don't always like to play by the rules or have their own set of rules they like to go by my advise would be to check around to different Hospice centers.
In your friends case and I'm only guessing maybe the Hospice House was overcrowded and the local nursing homes weren't on board due to financial reasons (Not going to make enough money seems to be the normal excuse from many of these nursing homes).
I could be wrong but both (2) our social workers that are assigned to my mother case have explained the process to me more then once and that's the standard answer I've gotten every time.
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"Worker just a Nurse".... please readjust that attitude. In my experience, nurses do far more for their patients and families than social workers ever can or will. Nurses are the ones who spend the most time with patients. Nursing is the most trusted profession. And, just like in all professions, there are good ones and bad ones.

I'm glad your situation is resolved. Your experience is a learning lesson. Always get the name and position of anyone talking to you about your loved one. Always understand why they are calling you. Do not have a conversation with someone who does not understand your loved one's situation; you are only wasting your time and raising your blood pressure.
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mstrbill Jul 2019
I've been following this thread with some interest because I was involved in a similar/related scenario regarding confusing statements/behavior by a home health "nurse". Basically the Dr for my father referred the home nurses who in turn were unable to help because Medicare wouldn't cover the services, but apparently APS was brought up to the DR by the nurses. The nurses weren't helpful at all and were almost antagonistic (similar to the "take action and find issue with you as caregiver" comments in OP). I was bewildered because both the Dr and nurses weren't guiding me in the right direction. We couldn't afford the $27/hr private agencies. I was left with a lot of distaste in my mouth because of those "professionals"
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Hi Madhatter,

I'm glad things are working out. I had a similar experience as well with professionals who you'd think would be in your corner. I learned there are other options available but unfortunately sometimes you're on your own trying to navigate and people who you'd think would be in your corner are not, and finances are usually part of the equation.
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madhatter632 Jul 2019
Tell me about it, most seem to think throwing money at the situation is the answer to everything , if we had money I guess it wouldn't be a question.
Mom came home yesterday (Saturday July 13) and everyone at the Hospice House was great, mom loved it but as far as the claims that one so called social worker made I don't see it, yes mom remembers her last church she was going to but after that it's pretty much nothing has changed an as far as mom being ready to run a marathon as that social worker tried to tell me she was capable of walking....... Well if you count 3 steps then stuck I guess she's good to go, I don't know what that person was talking about, I do admit I kind of got my hopes up only to see them crushed shortly after getting mom back to the house.
Yes' there are always a few that I truly believe are working in their best interest and trying to fill their pockets with others hard earned money, I'm thinking this was a case of someone being paid to promote and in my personal opinion if that was the situation I find it appalling.

Thank God it's been dealt with and that person is not assigned to my case in the first place.
Now I just need to figure out if the 30 day intervals for Respite are counted as 30 days or 30 business days as mom is looking forward to my next Respite.................
It's funny cause she doesn't want to be in a nursing home but she felt it was more of a vacation for herself then for me and if it makes her happy then I'm going to take advantage of it for her sake.
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"Basically the Dr for my father referred the home nurses who in turn were unable to help because Medicare wouldn't cover the services, but apparently APS was brought up to the DR by the nurses." Neither nurses nor doctors work for free. With Medicare unable to help, APS appears to have been a last resort. It's not the professionals' fault when there are no good solutions. A lot depends on where people live and how much money they have. Sad but true.
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mstrbill Jul 2019
The problem is there should have been some consultation or guidance or help in between, it wasn't a "last resort" type situation. Looking back, there was a negative vibe and almost accusatory vibe towards me that was noticeable. Even when I notified the head nurse that my father was no longer going to be living at home and to cancel a scheduled appointment, she didn't seem happy he was being taken care of. (I took them out of the equation by taking dad to the ER). It was sort of a disconcerting experience.
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