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How do I politely tell Hospice Family Support/Clergy that I don't want to keep talking about the caregiving of my mother or the constant questions about how I am, my mothers progress/decline, etc.? I've tried to let them know that the constant talking isn't helpful and causes me to dwell on my situation making me loose focus on my daily caregiving as well as causing depression.

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I would just tell them exactly as you’ve told us.
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Caregiver08 Aug 2023
Thank you I will!
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Did you request to see a Minister, if not then tell Hospice you don't need him/her. Once you said what you did, the Minister should not have come again, IMO, a Minister or Social worker is not needed unless you or the client request it. You may just have to be blunt at this point. When the minister shows up, do not let him in. Again, tell him you do not need his service. I would be bet he is paid for each visit. You don't need it, thats your prerogative. Hospice cannot force you or the client to do anything they don't want.
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You don’t have to speak to anyone if you don’t want to.

You can be direct with someone without being rude.

Say something like, ‘I appreciate your concern for me. I prefer not to discuss this with you. If I should decide to speak with you, I will be in touch. Otherwise, please allow me to have my privacy. Thank you.’
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mkaneko8 Aug 2023
I will try being more direct with him this time as my previous attempts have not been successful as I know he is only trying to be helpful. Thanks again for your feedback as it lets me know its ok to decline discussions at this time!
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When my late husband went under hospice care, I was asked if I wanted their clergy person to come talk to me and I said no, that I had my own pastor that I would talk to if needed. They also sent out the social worker to what I thought was to see my husband, but when I learned that she was actually there to see me and talk with me about how I was doing, I put an immediate stop to that, and told her that she didn't have to ever come back as I had my caregiver support group that was much more helpful to me than she ever could be.
So you my dear just have to speak up and tell them what you want and what you don't want.
I know that some people appreciate all the attention, but I'm like you, just let me be and take care of my loved one.
So next time they call wanting to come over, just tell them thanks but no thanks, and that you'll call them if you need them.
And please make sure that you're taking care of yourself.
God bless you.
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Caregiver08 Aug 2023
Thank you so much for your response! Your comments make me feel quite supported here and I I appreciate your kind words you have no idea! Blessings to you always!
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They're only trying to help
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grimmy236 Aug 2023
But if it is hurting rather than helping, Caregiver08 doesn't need to keep silent while they try to help.
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Caregiver08: Personally I just turned down clergy from the start, and told the SW not to come just before we left hospice. It's ok for you to tell them that.

If there's something they can offer you, other than the talk that makes you unhappy, let them know that too. It shouldn't have to be what you have now or nothing--but you'll never know until you speak up.
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Just say talk to the hand... No..no don't say that.. :)

Just say I need some quiet time to reflect on things and you will say when you need further support you will approach them.

I like the caring nature of people but sounds like they're over doing it if it's getting to you. I think if they communicate once or twice, and then gave you some space, saying they're always available if you need further support that would be a better way to handle it.

I like funkygrandma59's reply.

Take care.
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mkaneko8 Aug 2023
Me too @ funkygrandma59's reply
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One of my LOs was at 82, a totally focused Yankee fan.

She was diagnosed in August with untreatable pancreatic cancer, that had metastasized to her liver and bones.

We all took turns staying with her, and gradually became aware of a particularly aggressive and harassing social worker, who was obviously determined to “talk death” to her.

Although we were pretty successful for a couple weeks, I was on duty one day when one of the nurses called me out of her room to ask me a question about her care, and we later, realized to our horror, that the death talk had been given.

There was a playoff double header that night, previously her only comfort, and for the first time since her diagnosis, she refused to listen to it.

Be firm, be civil, be insistent. It’s your right.
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Or change to a different hospice agency.
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Just a question, were you called prior to the visit or the clergy just showed up. If he/her just showed up that is kind of putting you on the spot. You know when it comes to Hospice you are in charge. They are a service. They are not there to encroach on your life. You have a Nurse who should be checking in a couple of times a week and who is available by phone 24/7. An aide coming at least 3x a week. I see no reason for a SW unless they have therapy training. A minister is an option. People usually have their own.

I may be honest and thank the minister for coming but you don't feel at this time u need spiritual counseling. If you feel you do, then you will call him.

I like "Thank you, I have a minister of my own".
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NeedHelpWithMom Aug 2023
Excellent point, JoAnn

The social worker at my brother’s hospice came over to me and asked me if I wanted to talk. She wasn’t pushy at all.

She also gave me a booklet with questions and answers that explained everything. She said that I could read it if and when I chose to.
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The bottom line is that they should respect how you feel. This is extremely personal for every individual who has a family member in hospice care.

I very much appreciated the social worker and clergy. Others prefer absolute privacy, which is totally fine.

The SW and clergy were there when I wanted to speak with them but they certainly weren’t intrusive with me or any other family member. You are entitled to your privacy during this difficult time.
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I would just tell them not to ask. I’m surprised they didn’t consult as to what you would want when your mother was enrolled.

Last week the hospice social worker asked my sister and me how we were doing in front of my mother. What are you supposed to say? I told her I was fine. My sister did the same. We really are not. I did not want to bare my soul in front of my mother. What is anyone going to do about it anyway?
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NeedHelpWithMom Aug 2023
HH,

Exactly, that’s kind of awkward to answer in front of your mom.

The social worker approached each of us privately. That’s how it should be handled. We are all different and process things differently.

NHWM
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Tell the hospice you have your own pastor you're consulting with. That disarms them and keeps the subtle "but you need spiritual sppport" stuff away. Just saying no thanks might not be sufficient.

I'm always amazed at the hospice companies that have terrible people skills. I fire the first hospice company I hired for my dad's care because their social worker chewed me out for cancelling an appointment, told me "this isn't about YOU" when I did ask about support for me, the caregiver, and didn't return calls. I fired them in a hot second, hired another company, and they were great.

Consider finding another company. They'll handle the switchover from the old service to the new one, and feel free to be very upfront with the new folks. You and they are a team, and you should all be on the same page.
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Many people have very good and helpful experiences with hospice but, just like with everything, some are better than others. When my mother was dying she was put on hospice while in the hospital and remained in a hospice bed at the hospital. The nurses at the hospital were lovely, but the hospice staff were dreadful. The hospice people would stop in every day for a minute or two and do nothing because the nurses were taking care of everything. If I asked them to sit for a minute with my mother while I went to get coffee or run an errand or even go to the bathroom they would lay guilt on me that my mother could die at any minute and I wouldn't be there and how would that make me feel. They were only good at reminding you that the end was near and that you should feel awful. At that point I knew the end was near and wanted my mother out of her misery and I really, really, really needed to take care of my children and family in addition to sitting at my mother's bedside. Just be very direct and specific to the hospice staff by telling them what is helpful and what is not. You are in charge.
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When my father had Hospice, one day the social worker, clergywoman& mom were in the living room talking. Mostly about our family friction. Dad's 'sick room' was in hearing distance. The pvt caregiver was with him&he said "Who's here?" 3 times then the CG loudly said "He wants to know who's here". Even the nurse asked us questions about dad next to his hospital bed. She acted as if he wasn't there. Kinda ticked me off and I know it bothered my dad. Our family dynamics are not the same anymore & 7 yrs later, my sister still treats me differently.
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Its sad that OP has a problem with Hospice. Its a service. A service done in YOUR home. The purpose is to make sure the client is kept comfortable. That the client and family have the support needed. Not to encroach on you when not wanted. Once the clergy and/or SW has been told they are not needed, they do not return unless requested. (Actually the last person I want to see is a SW)

You are inviting these people into your home. They are not in charge, you are. My Mom had "in home" for a couple of weeks. They wanted to come at 8:30am Monday. Mom had just moved in, aft a rehab stay, that Thurs before. This was all new to me and I just could not get her up, dressed and have breakfast by 8:30 am. So we made it for 10am.

The families needs are important too. And we all need to speak up when we are not able to do something. The Nurse comes 2x a week and aide maybe 3x. The rest of the time, family is doing the caring. They are the ones who are stressed out.

Remember, its ur home and you invite who u want into it.
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