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The memory care center has suggested we sit down for a care plan meeting with our mom present. I am not sure that is a good idea, but it might make her feel like she has more agency in the matter. What are your thoughts on this?

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They have always had our Loved One attend the meetings. She generally nods off, but she's there. What problems do your foresee in having your mother participate in the meeting?
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Segoline Jan 2019
Because my sister and I seem to be such a trigger, I don't know we would actually get to care plan. I think she,mom, might go off in another tangent about how awful we are, and never get to care plan.

Thanks all for responses.
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I can't imagine my mom in a care plan meeting even before dementia
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I tried that once. Mom inadvertently got a notice saying we were scheduled for a Care Conference and she told me she wanted to go. She was also in Memory Care.

Mom asked some good questions, but the balance of the meeting was her babbling about everyone having sex with everyone else at the facility, cameras hidden in light fixtures and people coming through the walls. I really wanted to ask for a do over without her present.
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Here’s my experience: At Moms NH the care conference includes her head RN, her nurse practitioner, social worker, recreation theapist, and nutritionist. They bring their notes on how she’s doing medically, socially, eating and weight and I have opportunity to ask questions and give my opinion on how I think she’s doing and how they can improve her care. I brought Mom to the first meeting, but no others. So in my opinion it depends on if you think your Mom would make meaningful contributions to the meeting by answering questions without getting upset or stressed by the conversation. Would it confuse her? Make her sad? Do you think this is test to watch her behavior? They really shouldn’t need this setting to know how she behaves. It was at one of these meetings 2 years ago the NP announced she thought mom only had 3-6 months to live. I’m glad she wasn’t there for that! I’m actually rather surprised they want your Mom at the meeting.
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I don't think it would add anything to the meeting and perhaps distract from the purpose to have a LO with dementia present.
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My meetings were 15 min. Mostly them telling me, me not able to ask questions. I got most of my questions answered by the nurses on duty. If Mom cannot reason or process whats being said, I would have her there.
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Segoline Jan 2019
No she can't, at this point, I don't think. Not constructively, anyway.

Thank you.
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It depends on whether your mother is able to reason and whether she will take assessment as criticism. One time my mother got word of a care plan meeting and barged in. She yelled the whole time about how terrible every one and everything was. All these professionals could not deal with her. I got nothing from that meeting except the understanding that no one could deal with her and why should I be better able than trained experts.
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my mom can handle bills lot of her care to a point can be very friendly to doctors strangers tells them what they want to hear****once back home demanding no conversation except do this that her way four years ago broke hip she had distanced herself from me only child would not take calls hatefull when friens called to tell me to go to hosp stayed in rehab two months in this time she had terrible roach infestestation my husband and I cleaned every cabinet her two back rooms cant walk in door she throws all items old furniture broken no use old lamps new things still in bags we cleaned had bug company spray and set up to cont every three months took care of her 5 dogs she came home was doing ok now Nov 2 2018 she was out feeding her man stray cats and her dogs supposed to use a cane and take cell out in case but didn't said she didn't lift her cane high enough for walk way dislocated shoulder follow up it wasn't in place went back in surgery replace in shoulder sling mean time Im still feeding changing her dog pads changing out her heat lamps for the same dogs old now not their thought she cares for them and strays more then family has told her granddaughter to not come or call or her great grand who were willing to help even though they live in Charlotte follows every move I make tells me over and over how to feed which lights and aske every time I leave in afternoon/nite did I feed strays and roaches worse then ever had to take her against her will to my home have bug company spray twice they had been coming as plan but she wouldn't ley them use what and how they needed because of her animals
she has never had drivers license I gotten her groceries always more animal food then human I have meals on wheels helping I unplugged stove she might have a calm day next day hateful her way no way I dread going but don't kn how she will get to rehab twice a week and other dr appts she doesn't appreciate any from me Ive had to stop work gas is high I live in country she in town 3 trips a day I asked for money for gas she might give 20.00 and gets mad take to bank she gets 500.00 out hides she is paranoid me or some one will still I don't want anything she wants I don't want her nasty home how do I get her help she threw a fit about calling dss or going to longterm care for rehab sand but hate it and her at this point she has never been a mom always called her by name she married three times divorced estranged from her brothers sisters and mom hates them thanks for this site so glad I found
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dads1caregiver Jan 2019
Nette2018, I think you have a bigger problem. A good attorney would be in order. I had to become my dad's conservator bc of his living conditions & lack of care. It was hard, but the best decision.
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Generally, you DO include the person in discussions about her own care plan unless there is a compelling reason not to. So: what are your reservations about the idea?

Bear in mind that it's perfectly possible to be creative about this. For example, if certain items need to be discussed that you know your mother will find frightening or upsetting, you can always split the meeting discreetly into two parts.
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My parents are in a memory care and I can't imagine including them in a care plan discussion. They don't even realize they are in a memory care or why they are there. My Dad would be completely out of it and my Mom would be upset they are talking about them at all to me...

My Mom has no sense that her and my Dad even need care. She is one of the few in the memory care that doesn't have a walker or a wheelchair.. and she thinks because of that she should not be there.

Wow that would be so uncomfortable to me... I guess I could see if they didn't have dementia and were in a nursing home because of other medical issues.. then they might have some say so about their care and attend the care meeting.
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Sachelle Jan 2019
Wow reading your thread is exactly how my grandmother is. Praying for us all
Take care
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My parents were at the first meeting, but not at any subsequent ones. It might be that this is the procedure for the NH to see how they react. Though not overly disruptive at the first meeting, my parents verbally rambled and we couldn’t get to what the meeting was about. Midway through, one of the nurses asked them if they wanted to go to the cafeteria to get some coffee and we would join them later. They agreed and we were able to continue. There are issues, complaints or concerns that I would feel very uncomfortable discussing in front of my parents, so their presence would impede the purpose of the care meeting.
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My LO vacillated 180° while at home as to whether she should have help 24/7 or whether she should sell the house and go into assisted living.

Her 2 POAs made the arrangements for her first visit to the facility, but her cognitive status deteriorated so rapidly that subsequent care was planned through the memory care unit and she was not included in meetings, based on the assumption that any discussion of permanent care would trigger a severe negative response in her.

I have never had any reason to think that she would have been better served through being present.
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I have gotten such great feedback. Thank you all. You don't know with my mom if Jekyll or Hyde is going to be present. Will she listen. No, probably not. Will something, word, a feeling, what she considers a criticism come out in a rage? Probably so. My sister and I have been with this for 2 active years. But this has been going on longer, if we are honest.just attributed to her eccentricity. Well no, alas. Gosh,were we dumb. Anyway, thanks so much, so very much for your input. It's appreciated. More than you know.
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Hi

It would be based on the demeanor of your loved one.
My grandmother it would be a no. Because she does not acknowledge that she has a memory loss . she doesn't acknowledge that she's forgetful so those are triggers that would ignite a confrontation, delay, and interfere with the memory plan for her care.

If she's able to understand and request being a part of the care plan give it a try but it depends again on the demeanor and only you know her demeanor. I hope this helps you

Sachelle
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Segoline Jan 2019
Your grandmother, and my mom have anosognosia. A lack of awareness of impairment. That complicates any positive discussion.
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I opted to meet with the team without my parents present largely because there was information that needed to be shared, by the staff but also by me and in the interest of keeping on topic and in an effort to maintain accuracy it was a better approach. When they arrived at their new home Dad insisted he have his car. I placated him and even though it was physically there in the parking lot I made sure that each time they needed to go somewhere I took them in my car.

During the care conference two months after they arrived I posed the question to the team 'is it time to keep him off the road?' and the team concurred. The doctor decided that he would be bad cop and send in the paperwork to the DMV so that my dad didn't know I had given the order.

Had my parents been at the meeting there's no way it could have gone so smoothly. Also with the myriad of health issues they both have during intake they both neglected to mention some of their health concerns. (asthma, celiac disease, etc) Had they been there it would have turned into a family bickering.

Personally I found the meeting very helpful and it allowed me to build a strong alliance with the staff which is worth it's weight in gold.
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I think it depends on the level of understanding the resident has. If there is something concrete that they can offer then they should be allowed to sit in. If the resident will be a distraction to the family members or if they will have nothing to add then they can be doing some other activity.
Obviously the more a person declines the less input they would have. Someone that is non-verbal as my husband was would have nothing to add. Even before he was completely non verbal he had little to say when making decisions so all decisions were left to me. In a case like that there would be no reason to have someone like that sit in on a meeting.
So it really is a matter of the individual person and how they can participate.
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Yes include her. Even if she has difficulty participating. Just help her go through all of this. Be there with her. Do it together. That will help her. She’s not a child. Including her help her continue to feel like an adult.
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I have been to two care plan meetings for my parents at their memory care facility and not involved them in either meeting. My dad is coherent with short term memory loss, but he definitely knows what is going on around him. My mom is pretty out of it. The first meeting was about talking about my parents needs and letting the staff know more about them and what I felt they needed. The second meeting was more about how they were doing with the care they were receiving. Prior to the meetings I told my parents that I was meeting with the staff to go over the care plan and that I wanted to get their input. I then sat down with both my parents with a notebook in hand and asked them how things were going and found out any concerns they had about the care they were receiving. For example the caregiver was insisting my dad brush his teeth when he first woke up in the morning and this bothered my dad as he wanted to brush them after breakfast. I then brought this up in the care meeting and they adjusted the care plan to reflect brushing his teeth after breakfast. I have found if I make my parents feel like they have a say in matters and that their opinions count they are good with that. By not having your loved ones at the meeting everyone can be more candid and in my opinion it can be a more to the point meeting and not go off on tangents that a person living in memory care may be prone to do. After the meetings I then sit down with my parents again and go over what changes we made to the care plan and thank them for their input. I make sure to thank all the staff present for the great care they are providing to my parents. I have a good working relationship with the staff now so as things come up I can adddress them on the spot with the staff members.
Good luck.
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The first meeting that the MC on my mother's care I included her and even though she didn't have any input of her own she still felt as though she were included and felt validated. When they announced they were having the next resident council meeting I thought it would be the same. The second one was meant for resident's families to come and voice their opinions and concerns. I didn't realize this until we were at the meeting. They said Mom was welcome to stay but it turned into a rather of a disaster to have her there. One of the family members in my opinion got quite out of hand and started making some very negative statements about the facility. When he started naming names of staff he was having problems with I spoke up and stopped him as I felt management didn't have proper control of the meeting and the things he was bringing up should have been addressed privately. Meanwhile my mother is sitting there taking it all in. I have learned through out the course of her disease that when she hears anything negative she picks up on it and "goes" with it. Since we have worked really hard at getting her to like this new arrangement I did not want to jeopardize the progress we had made. In the future I am going to ask when invited to these meetings if it is only about the individual (she comes) or all residents (she doesn't). By the way several staff approached me after the meeting to thank me for speaking up to this man. That they had felt the same as I did but as employees (CEO was in charge of meeting) they couldn't say anything. Had I been an employee I would have felt the same way.
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Both of my parents were in various facilities over the years. Mom had Parkinson's disease and ended up in Assisted Living after a hip fracture. My dad had prostate cancer that spread to the bone and was in Assisted Living then eventually in Nursing Care. My dad ended up in hospice care for over 2 years. I never once took either to a care plan discussion (although, my dad may have attended one with me in regard to my mom's care, but he quickly passed the responsibility on to me as I was their POA and he didn't feel like he could make medical decisions any longer—had lawyer transfer this "power" from him to me, so that I could legally make medical decisions on her behalf).

I always prepared in advance for care plan meetings. I took notes of questions, took papers providing updated contact information, and legal documents or insurance changes, etc. Because my dad was under hospice care, I always tried to arrange to have his hospice nurse present at the care meetings—I considered us a team working to provide the best possible care for my parent.

Some topics such as a DNR, incontinence, etc., are difficult for a loved one to hear discussed. Having the freedom to openly discuss whatever issues are important on behalf of your loved one is crucial, and the time with the staff is very valuable. No one needs to be a distraction in these meetings.
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sashamarie Jan 2019
I do prepare in advance also. Asking my brother what he would like me to discuss. He has a personal health issue he is embarassed to discuss with everyone and the NH was not addressing adequately. He doesn't tell them what he likes to eat, he just won't eat. These are issues I can bring up for him.I wouldn't be against him being included for part of a meeting but strongly advise having some private time.
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When my dad was transferred from the hospital to a rehab facility, I included my dad. But he didn't have any dementia. He was able to make decisions for himself. He was just weakened from pneumonia. You need to consider your mom's temperament and if there is any form of dementia.
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Hi ,
I am my brother's POA and he is in a NH because of several strokes and vascular demenia. Some on the time he understands what is going on around him but will all of a sudden be in another world. He also has short term memory loss. The new person in charge of the Care Plan at this facility for the first meeting didn't include family/POA at all. Now she brings the staff members right to his room and starts a discussion with him asking him questions. He really doesn't understand what is going on and becomes nervous. They don't give me any paper work, it is handled like a cheering session. Pushing him to say how great everything is there. I get almost nothing out of it and he doesn't remember anything they said. Really a waste of time!
I do not recommend having a person with any memory problems attend one of these meetings. I had two meetings where I was the only family there and we discussed things I wouldn't necessarily discuss with him present. The nurse in charge gave me printed information and I felt the CP were worth while. I might add I am in MI and he is in FL so I make a big effort to attend one of these. I do communicate with several staffers in between.
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Gosh, I can't imagine my mom in the care meeting, either. Like Forrest Gump said: 'Like is like a box of chocolates,' From day to day...heck, hour to hour, I never know what I'm going to get as far as my mother's mood, behavior and memory-or lack thereof-is concerned.
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My 90 year old mother with mild dementia was at her care plan meeting and we couldn't talk about her memory issues because she refuses to accept it. She would argue over things, like saying she bathed/showered when she refused. So , it wasn't helpful to have her there. It may have helped her self esteem but she was late coming down because she hates to be moved. Once there, she was angry that we were talking about her instead of to her. We tried to address issues to her but she derailed them. So, since we were free to have the discussion we really needed to have, it was better that she not be there. She couldn't grasp the finery of the discussions and it was more stressful for her.
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You may not have a choice. I didn't. Different facility~~~~ so my late mother was in the Nursing Home, they call a family meeting (she was in the Rehab Unit and we expected her to transition to the LTC Unit), they had her in the meeting, they say "Ma'am, you're too well to stay here." THEY WERE DEAD WRONG. Less than 48 hours later, my mother suffered a stroke there and died 10 days later.
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1st time mom was there but next she only came for the dietian's part - later we had the meetings without her - it depends on her -

We finished with a lunch I brought with me so mom took it as a treat meal & forgot about what was said at meeting - most went flying over head & most of time she just nodded like she understood what was going on but didn't understand most - she was most interested in the dietian's input

If possible have all or part of meeting without them there
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