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Family members are calling Mom (Advanced Alzheimer’s, COPD, CHF) who is in skilled nursing and under Hospice care. I encourage it, but they ask her very complicated questions like what her prognosis is and when is she going home. It agitates and embarrasses her. It’s hard to explain her condition to those who haven’t seen her. She’s blissfully unaware. I try to explain to keep it light and fun, talk about childhood. But I feel like they think I’m hiding things or trying to manipulate her. Thoughts on how to explain to family to go easy?

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Maybe ask the Hospice nurses for advice.

Ask for any hand out handout/brochure that is suitable to share via email with extended family members that are struggling to understand.

The aim will be a little education for them.

I get that you care deeply & wish to spare Mom awkward conversations, but you can't control what they ask or talk about with Mom of course. Offer a little education + a little advice to be light as you said, then let it go. (As some folk will stay in ignorance/denial no matter what evidence is before them). You will need your energy for bigger things.

Strength to you for the road ahead.
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Your mother is on hospice in a SNF with advanced Alzheimer's and your family members are asking her when she's GOING HOME? I'd be livid and calling each one of them on the phone immediately for a Come To Jesus meeting! It's not hard to explain to these people that your mother is terminal, with advanced Alzheimer's, COPD & CHF and on hospice care with less than 6 months to live. Her cognizance is severely compromised and the ONLY things they should be talking to her about is happy memories and what dessert she's having for lunch! She's not going home, except to be with God, so there will be no more questions of any kind asked of her or you'll have to block their numbers on her phone. Kapish? You have plenty of control in this situation!

I had to make a few of those calls myself to the "well meaning" relatives who caused my mother nothing but upset when she lived in Memory Care Assisted Living with advanced dementia. These people's ignorance is no excuse for upsetting our mother's and then WE are left to clean up the fallout and the extra tears they cause! I did whatever I had to do to help mom and I didn't care about stepping on anyone's toes because NONE of these family members did ONE single thing to help me. So I'd be damned if I'd sit by and watch them do things to HURT me or mom, nope.

The last thing the elders need is agitation to add to their issues, that's for sure. The goal with dementia and Alzheimer's is to keep them calm at all costs, especially when hospice is on board. That's the message to anyone who wants to call, or their number will be blocked. Don't encourage calls from people who are too dense to understand the situation or who think you are keeping them in the dark 🙄

I'm sorry you're going thru such a stressful time with your mom now. I pray that you have the strength to push out all the noise in your lives right now so you can focus only on what's important. Sending you a big hug and a prayer for peace and guidance thru this end of life journey.
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Beatty Aug 2022
Agree.
A polite email may work for some.. others need good firm chat to knock some common sense into them 😁
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Assuming that you’re POA, you may be able to work through administrative channels and limit visits/phone calls to those you feel are most “understanding”

Your job is to establish and maintain Mom’s SAFETY AND COMFORT, not to be the family geriatric educator.

If ignorant/naive family become a challenge to her discomfort and actually “agitate”, either the Hospice manager or the facility management (or both), may be willing to “guard the door”.

It’s doubtful that if “loving family” haven’t picked up on your previous suggestions, they’ll be dissuaded by being “educated”.

YOU have NO REASONS to be concerned about what others think. Assume your justifiable role in the driver’s seat and stay there. She needs calm interactions dictated by the person who knows her best.

She’s lucky to have you.
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Your Mom is able to pick up a phone? Does she need one in her room? If no to both questions, then get rid of it. And POA or not, I would limit her visitation not allowing those who upset her. Then let them call you and you say sorry, but it seems your visits upset Mom and the last thing she needs is to be upset. Then explain that she is not coming home and Hospice means end of life.

I read this and thanked God he took my one Aunt before my Mom passed. I could just seeing her doing this stuff and when something said to her getting indignant. These type of people can not be emailed. You have to be blunt because they have no idea how to read between the lines.
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This sounds like a simple communication problem that you can handle by calling each relative individually and properly explaining what your mother’s condition is. And get rid of that cell phone your mother has or have the phone in her room disabled.

I doubt very much thst your mom’s relatives are intentionally trying to upset her. It sounds like they don’t know what is going on because you haven’t been keeping them informed as people who have long time personal relationships with your mother. Going the extra mile by talking to each one personally about your mother’s condition will probably work.

Managing communication with family members in a positive, connected way is an essential part of the caregiving role. You are lucky to have interested family members and friends
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Be open about her condition and be specific. "Hi My Mom has Alzheimers and needs to be in a nursing home indefinitely. I appreciate you calling to keep her spirits up and she love to hear from you. She is very happy and adjusted, but please avoid questions as to her diagnosis and when she is coming home because they upset and confuse her. If you want to know anything about her health conditions, don't hesitate to ask ME".
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PeggySue2020 Aug 2022
I so second this. And btw, it might help to encapsulate this info in something written by an allegedly more neutral third party, like a hospice chaplain or social worker, whose jobs are to help the whole family through the hospice process.
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Maybe if you tell them if they have any questions about your mothers health to just ask you. And not to approach your mother with this as it upsets her.
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Your family must be one of the exceptions. Most families would have ghosted long ago
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One of the biggest fears we have as adult children is losing a parent. I would suggest you, as the main caregiver, ask them what they’d like to ask so that the parent “knows how to answer” then you discreetly answer their question.
Then they can ask less direct questions. I haven’t read any other comments but will tell you this. When my mom started getting dementia my brother told me never to say that word again, he was angry. He finally came around and I know his anger came from fear. Please be patient with your sibs, it’ll take each o them their own time to come around to understanding.
love and light
you are doing a great job and I know how hard it is
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Other than they might be trouble making agitators (?) they just don’t know what to talk about.

I can remember the thoughtless comments I made in my younger years and I cringe.
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Asking someone who is in Hospice "When are you going home?" Is insane. As is asking someone with advanced Alzheimers, complicated questions.
Have you explained that Mom is dying?? Do they not know what hospice is?
Have you explained that alzheimers is brain damage and not merely "forgetfulness"?
Hit them with HARD and BRUTAL truths to stop them from being HARD and BRUTAL to your Mom.
I am sorry you are going through this.
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I would suggest you talk to these family members and tell them the facts about your mother's condition. Are these close relatives that she knows well? Well, then they should be reminded that she has a disease that is destroying her brain and that she's not able to communicate as well as before she became ill. At this stage of her life she needs her spirits lifted by music, other soothing experiences.

My husband died from Alzheimer's 3 months ago. At this stage in his illness-where your mother is-, listening to music was the main thing we did as he was no longer able to speak and express his feelings. With music you just go with that without anything being said.
Be well.
It's good you know what's going. Keep up the good work.
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Usually the term gatekeeper is a term used by other people to describe someone who is intentionally blocking and controlling. It’s unusual to see someone describe themselves as a gatekeeper. I’m curious why you openly refer to yourself in this way rather than simply your relation to her, such as “adult daughter ( or son) of so and so”
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Why are the relatives not aware that she has dementia, lives in a nursing home, and is on hospice? Have you not told them these things? Do they not understand what hospice and nursing homes mean?
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How about a family meeting (by Zoom?) with a Geriatric Psychiatrist or Hospice Manager? Not sure if they can discuss specifics (HIPPA), but they can explain the stages of Alzheimers and how you can "get on the same page" and give her peace and serenity wherever possible.
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First of all, in my experience, people like to be in control. Mom is in an uncontrollable situation and it makes them feel fearful and guilty. You will need to get a doctor or nurse to talk to them the next time they come and explain that what they think is ordinary talk is an agitation for her. Help them understand that "that's a pretty dress, or look at this cute photo I found of you and me" are the types of conversations she needs. Play music, or better yet have them play music with her when they visit. Music always calmed my Daddy.
Always defer to the experts when you can. Family is the hardest to reach because heartstrings are connected.
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Might tell family - "Nobody knows how long he or she has.." "Let's focus on 'now' and being loving together... and I will answer any questions after your visit together."
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CassWall: Quite shockingly, these family members have zero grasp on the disease of Alzheimer's. To ask her when she is going home is absurd. You could suggest to these family members that they read the book, "The 36 Hour Day" or any other numerous publications on the disease.
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Take a different approach. A gatekeeper implies that you decide who goes in and out. Instead be child to your mother and a sibling to the siblings.

Perhaps talk to all at one time and explain the details of mom's illness and how some questions or conversations may create worry or confusion for her. It's best not to discuss her conditions because in lucid moments it is rather frightening to her. Asking her when she is going home can create confusion because sometimes she thinks where she is now is home and other times would like to return to a home in her past.

Assure everyone that you will provide them with whatever medical details they have questions about.
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"Gatekeeper' is not necessarily such a negative term. It is very practical to have one person in the family who is responsible for dealing with the practical issues related to a family member in a care setting. Managing everything from medical care to new glasses to clothing that is easy to get on and off to paying bills and establishing a good working relationship with the staff at the care home.
However, that one person also needs to communicate to 'the rest of the group." A group email works to share larger amounts of information, including an explanation of Mom's abilities and preferences at this stage of her life. Directing them to the Alzheimers' web pages, and to hospice information about end of life care with Alzheimer's disease can help answer a lot of questions. And ask staff/hospice team if they feel she is distressed by these visits, especially the questioning.. Sometimes it is harder for us than for the patient, and can be part of the process for each of them to come to terms with the fact that she is fading away. And, as Beatty said, some of them just won't ever get it!
Take care of you, let hospice help you.
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Fawnby Sep 2022
I’ve done the newsletter thing to keep family informed. Also my LO spoke on the phone every day to most of the family members involved. He didn’t want them to visit and hamper his efforts to regain his health. Neither one of us wanted the drama that they always brought with them, either. It worked in that way but was difficult for me to write every day due to exhaustion from being the caregiver. Also none of them ever thanked me for the info and cheery progress reports. They were all very self-involved people, so I guess I shouldn’t have been surprised, but now I kind of wish I’d used my time to sleep instead.
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Just tell them. If they don't listen, throw them out.
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It really irks me sometimes, that some people think that visiting an elderly person and their caregiving child means that tact and boundaries in questions asked go right out the window.
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