Undermining comments within this forum

CharGo

I'm a little upset. I have come to this forum for support and insight from people going through the same or similar situations to my family several times before and I really appreciate the kind and helpful things people have to say. 

Yet almost always there is someone that feels the need to tell me that my LO with ES should be in an assisted living facility. 

My mother has a PCP, a memory care specialist and a elder care specializing therapist that ALL believe that she is not at that stage. It's so discouraging to have so many people who feel the need to negate the medical advice I have and simple curtail my mother's situation into "full time care". 

Myself and my mothers care team work SO hard to give her the support and tools to continue to be semi autonomous. The amount of time researching and implementing new techniques alone can be exhausting. I email or speak with one of these three care givers honestly every 3 weeks and her PCP, who is so amazing and attentive, gets and reads the reports on all of my mothers interaction with her other 2 doctors. 

Please, please can we support each other on our own individual journeys instead of admonishing and making grand statements about LO care needs. I've also gotten some great advice and some kind words on this forum which have really helped me through hard times, but reading so many response that are simply, "Time for MC" is just so discouraging. 

EDIT:    To everyone who has been encouraging me and kind in these post thank you. You are the light in a world of reflective surfaces. I appreciate every thing you have said and that you've shared your own struggles and experiences. You make me feel like I have a real community. 

To those who are also asking me for me to post the exact post or posts I am referring to, I am sorry but no. I deleted the threads. I will not post them again. I don't need to validate my feelings. I feel hurt. I feel put down. If you would like to judge my interactions or the intent behind the posters because that will help you to understand if I am over reaction or should moderate my own feelings, again no. These are my feelings and I deserve to have them. I need not provide you with any "evidence".  

Thank you for everyone who wanted to reach out and help me, whether or not I take your advice. I appreciate the desire to help. 

But just to be clear this wasn't about me "Not getting the answer ( I ) want" it was about a trend I see on this site, in my post and others, were people don't respond to the topic of the thread, they instead begin asking questions about their LO's safety and other capabilities which lead the OP to have to defend their original question... kind of like these comments have made me have to do...

EDIT: EDIT:      and yes... the person who made me delete my last thread has commented in this one. Thank you feudman  you are awesome, I can't say what it means to me to have you guys sticking up for me. 

EDIT: EDIT: EDIT: Currently gobsmacked at how the comments are completely missing the point of this post. 

zauberflote

Hi CharGo, you became a member before I did; I think I remember seeing you post, but cannot remember situations you've talked about, I'm sorry! Also I can't see much about your LO in your profile, which doesn't help my memory either lol.

Everyone on here is giving or has given to the utmost of their abilities, and some beyond their abilities. I'm glad you've got a team who's so satisfactory that you don't need to contact them very much (my average, and Mom was in MC, was more like thrice a week). Anyway, everyone understands the exhaustion, physical, mental, and spiritual, that comes with being a caregiver. Many of us have developed serious health conditions, or exacerbated existing ones, as a result of the stress of caregiving. Sometimes someone outside our situation can see an incipient disaster that may affect caregiver and their LO (and in the case of driving, innocent bystanders) alike, which may prompt them to a level of frankness which can be off-putting. My own mantra is, give thanks for all advice and then do as I see fit with it.  

CharGo

I will still defer to my medical care teams advice. thank you.

CharGo

See this makes me not want to post my own issues or problems. Thank you for tell me I am wrong and that I am not in contact with my LO care team as much as you are. I feel very supported

ladyzetta

I Am sorry you see it that way she was trying to help you understand she was not telling you that you were wrong, sorry if you disagree.  I do know it is hard to understand and be understood on forums like this I have ran into those problems myself. People try their best to feel the way you feel and most of them have been there done that. There is a lot of good people here helping each other please try to see that. Hopefully this is coming across in a nice way. Thank You.

hospicelover

Hi CharGo,

I started to post here several years ago and quit because of something some man said to me. I was being verbally and physically abused by my mother, who I lived with at the time, and came to work in tears for about 3 weeks because I didn't understand what was going on with her and he basically told me to get over it and suck it up. I quit posting after that. I came for support and didn't receive any. My mom was diagnosed with dementia several years ago and has been in a nursing home for the past year. She is now on hospice and is actively dying so I'm allowed to go see her in her room and did this past Tuesday and got to hold her hand and it had been over a year since I was able to touch her. I did everything I could to keep my mom home as long as I could but she finally got too bad and started wandering too. I was exhausted and on the verge of a nervous breakdown. I work full time and she could no longer be left alone. You will know when it's time to place your mother somewhere and don't let anyone else tell you what you should or shouldn't do. I only signed back up on this board so I could let you know my past experience and let you know I understand what you're going through and it's hard when you don't get the support you need. Best of luck to you in the future. The best advice I will give to you is to take care of yourself. I'm finally doing that now but it took me a long time to do it. I want you to know that I support you.

Quilting brings calm

Char .... you sound like you have your loved ones care well in hand.  Thats a good place to be for now and hopefully for some time to come.   Zauber’s journey is much farther along than yours proven by the fact she’s had to be in contact with her LOs doctors many more times a month than you and has had so many challenges as a caregiver that she was forced to ask for assistance.She’s not telling you that you are wrong at all. She’s trying to give you the benefit of hindsight of people who waited too long to get assistance.  You are not at that point yet and that’s a great thing for you.  We are all at different points and opposing views are helpful even if we prefer to hear only people who think exactly like we do.  

I hope your future with your LO gos smoothly.  I hope that you will continue to read posts even from those of us that have a different journey than you. 

CharGo

Hospicelover. Thank you so much. I really appreciate it. You have no idea how much it means to hear that. 

I'm doing my best right now to ignore all the other commenters on here that are literally doing the exact thing I was expressing was harmful to me in my original post. Support and understanding in this is vital to my being able to pick myself up and deal with this incredible hard journey. 

While other people here are trying to see things from the side of the other commenters and explain to me why they might be saying these unintentionally hurtful things, you chose to see me and how this is effecting me. Being a caregiver involves so much giving to other people and not making yourself a priority. So hank you. Thank you. Thank you.

I have been so upset all morning because of this and I am so glade I decided to make this thread instead of deleting my account, which is what I was initially going to do. You make me feel like maybe there isn't something wrong with me. 

I am so sorry that someone chose to invalidate your struggle with your mom like that. We know that we just "have to deal with it" we reach out to others to help us deal with it and to feel as though someone else cares that we are dealing with it too. 

I'm so glade you got to hold your mom's hand. I absolutely can't imagine not being able to see my mom and help her with a the silly little things she needs for over a year. I can't even imagine how strong you must of had to be this whole last year. 

Just know that I appreciate you and I am 100% happy that you took your time to come and give me your support. You are amazing. Thank you. 

dayn2nite2

Just tell people what you want to hear as a response and those who can muster up the sentiment will tell you what you want to hear.

The rest of us will leave your posts alone.  

Arrowhead

What is right for someone else may not be right for you. The opposite is also true. Try the advice you think might work and ignore the rest.

zauberflote

Dear CharGo-- actually I am jealous of your smooth-running team. I wasn't meaning to put any value judgements on your caregiving. I am sorry that my words gave you sadness. You are absolutely right to ignore those comments which make you feel badly; I agree with other posters on that.

jfkoc

I tried to search in the archives ...all I came up with was your last post which was 8/20 and dealt with financial and legal matters. I only skimmed the posts but did not see any mention pro or con about memory care.

Would you share the date of the disturbing posts?

I have been a member here and have posted for close to 15 years. I know of two members in that time who were really not nice. I know of one other who is usually too blunt for my taste but even that person speaks from the heart.

I will go out on a limb and say that the suggestions for memory care were based on an opinion that your mother was no longer able to be safe on her own. One remedy is facility placement the other is to bring in a lot of outside care.

I truly hope you continue here because we do care about you and your mother and because you are going to get information that you are simply not going to get anywhere else.

We want you here, we want to be supportive and we want you to feel supported but I can not tell you that all posts are going to be sugar coated or even worded in a manner that is acceptable to you but do stay and throw out what you do not like. Please.

hospicelover

You are welcome CharGo and you response to me has made my day. I do understand where you’re coming from and have seen my mom going from just forgetting to constantly repeating herself and then becoming very combative and accusing me of horrible things because of her hallucinations. I did go through a lot of verbal abuse and some physical abuse too. At least when she would act up in the nursing home they could sedate her. I couldn’t. I saw her again tonight and feel so sorry for her. She tries to talk a little but her words are not clear at all and I can’t understand her but I talk to her and hold her hand. I’m not sure she really knows me but seems happy I’m there. She is now bedridden and is eating and drinking very little. I don’t think she has much time left. Like I said before, you will know when she needs extra help. I knew when I had to place my mom and it was because she started wandering out of the house looking for some girls that she said she was watching but it was just one of her hallucinations. She used to have a lot of them. I took care of my husband when he had cancer but caring for my mom with dementia has been much harder. Enjoy the time you have with her. I’m just so happy to be able to go in my mom’s room now and sit with her and hold her hand and talk to her while she’s still somewhat alert. It sounds to me like you’re doing a good job and take care of yourself too.

feudman

jfkoc wrote:

I have been a member here and have posted for close to 15 years. I know of two members in that time who were really not nice. I know of one other who is usually too blunt for my taste but even that person speaks from the heart.

By golly Judith, I believe that very poster has contributed to this thread; can any others identify the post that's inappropriate? I wish either its author or the moderators would remove it before it offends the OP.

The very purpose of this site is to support other members. And we all agree when we join to make supportive, positive posts and not attack others. As a member, I apologize to the OP for this uncalled for post.

JJ401

CharGo, your post and the replies you are complaining about are not visible to me now. I did read your post and was thinking about a reply, but when I came back to post my reply, all I found was one old post and this one.

I have no idea what caused the removal of the posts as, when I read them, the replies were polite. Not getting the answer you want does not make a reply impolite or wrong. 

This is a message board. It has people at all stages of the journey. What is appropriate for one stage may not be appropriate for another. But, when people farther along in the journey point out something, it is often wise to consider whether it applies to your loved one. You are free to reject it as it might not apply,  but you should not do so before actually considering it.

harshedbuzz

Hi CharGo-

I am sorry you came out of the exchange feeling bruised.

Perhaps, as dayin2nite2 suggested, you should tag as SO seeking only posts that support the choice you are making. If that's what support is to you, signal that to others. 

For me, "support" looks more like Devil's Advocate (like letting a PWD drive because you don't want to be the heavy, or like information (Teepa Snow videos, Medicaid planning) and times when it is just a listening ear and virtual hug. I hope you can get what you need from the forum.

While your medical team knows your situation almost as well as you do, we here have all lived some iteration of it on a 24/7 basis. They have studied, we have lived it. 

Placement is a gut-wrenching decision. Especially when there have been promises extracted not to do so. Sometimes people who come here are looking for something akin to permission to hand over the day-to-day care of their LO when they can no longer provide appropriate care. 

HB

MrsAnnabelLee

I have to say I've always found this forum to be supportive. In fact, I've often said it is the place on the internet with the least amount of snark I've ever visited. 

When people suggest memory care, think of it as trying to support you as the caregiver and the PWD as well. We don't stand to gain anything by what decision you make or don't make. We are all just out here doing our best and trying to help others through the litany of impossible decisions we all have to make. 

CharGo

Feudman. If I could find you, I would hug you and buy you a giant steak dinner. Thank you.

CharGo

Jenleepft this is exactly the kind of quiet hurt I was hoping to give a dang voice to! I know I felt very shut down and depleted by these same kind of interactions. I know a lot of people haven't had the same experience on this site and that is so wonderful for them but that doesn't mean that people who have should need to just ignore or get over our feelings in regards to it, and that is what I mean by quiet hurt. 

If you ask for advice or tips from people who are dealing with the same thing, you just want tips and advice on those things! Unsolicited advice on the advancement or dangers of our own LO's disease isn't helpful at that point. Frankly its a bit condescending. 

I'm sorry you don't feel like you can post and get useful tips or advice in a place that was literally made for just that purpose. I hope that knowing and seeing that there are other people here on this site who have experienced the same issue will encourage you to try again. Because hey if there is at least you and me here trying that means there's got to be more of us out there quietly dealing with the same thing. We do got this!  

jfkoc

I think try again would be good. 

There is little that can be done with out seeing the post that concerns you so please give us a "do over" in your post in question.

Marta

The first two responders to Char's original post were both PCP's in Internal Medicine, with spouses with dementia, I included.

I suggested that Char's Mom was not safe living alone, based on the original posting, and that she might need medication oversight by a person rather than a machine.  Mother had had a GI bleed due to medication mismanagement the year before.

The other PCP suggested that technology was not the answer to Char's question about medication management, and that electronic gadget skills are often the first to be lost.

jfkoc

"I will not post them again. I don't need to validate my feelings."

My suggestion to re-post was  only to give us a second chance to better respond to your need. If you want to leave it lie OK but please do not leave us and next time just report an offending post  or maybe just reply to it 

mommyandme (m&m)

I’m pretty sure there are two sides to this pancake.  Judgement can go both ways and so can support.  I have never thought that there were two camps, placed LOs vs at-home LOs.  I do not choose to judge anyone or to feel judged by anyone here.  We’re all just doing the best we can with what we have, right? 

Some of us have gone through more extremes than others who may or may not get to share in that kind of battle.  Regardless of our battles we all have wisdom from said battles.  Doesn’t mean someone’s wisdom is superior or inferior to another’s.  From my experience, wisdom is learned and we can all learn from someone else’s.

If someone exclaims “your loved one needs to be placed!”. I read it as if they had an awful experience that struck them in the cranium with a 2’x4’and they want to stop the same trauma for us. That I truly appreciate regardless of my circumstances. 

Let’s face it, our circumstances ARE different...like fingerprints.  Even though we might use our fingers in a similar way they are NOT the same. 

I’m thankful for this forum, thank you for all the wisdom you’ve shared with me.  I will take what I need and leave the rest, no offense.

The “quiet hurt” I may feel from reading will not be cast out to any of my fellow hurting people that are dealing with this hurtful situation we have been gifted with.  

I care about all of you and your LOs, strange maybe...but true.  

CharGo

Marta wrote:

The first two responders to Char's original post were both PCP's in Internal Medicine, with spouses with dementia, I included.

I suggested that Char's Mom was not safe living alone, based on the original posting, and that she might need medication oversight by a person rather than a machine.  Mother had had a GI bleed due to medication mismanagement the year before.

The other PCP suggested that technology was not the answer to Char's question about medication management, and that electronic gadget skills are often the first to be lost.

Wow okay, so even though I had made it CLEAR that I did not want or need to explain the context of the original post for the spirit of this thread to be understood and appreciated, you still feel the need to come on here and bully me into speaking on it.

 

All right fine.

 

 

Let me start by saying; yes, those are some bullet points from my post. My mother did have a GI issue in early 2020 and the Pria was a solution that myself and her DOCTORS came up with together to solve the issue of her medication problem, BUT my question in that post had nothing to do with that or how well my mother used the Pria device to dispense pills.

 

She does nothing but take the dispensed pills out of her cup at her scheduled times I have programed, which she has been doing perfect and without any issues since the machine was setup (by me... not her) 6months ago. Please look up the Black & Decker Pria pill dispenser if you need more information on how this particular device works.  

 

My actual issue/question was that she kept unplugging it (as well as her internet modem, the router & landline telephone) because she gets bored and she enjoys rearranges her furniture and the layout of her apartment (aka side table where all those four things are located together). So you see what I was actually asking was if the community had any opinions on getting a wall lock for the outlets in question or if anyone had any other suggestion to keep her from moving those items around when she gets the wild urge to interior design. 

 

Your implication that my mother was having issues with the mechanics or taking of her medication in her home was unfounded and ill-informed to the situation. 

Your assertion that the solution that our family, her doctors and her therapist had all come up with together as a team was not adequate enough for my mother was an over reach and not mention it was quite condescending.  

 

Furthermore, Marta as you have chosen to come onto this thread to specifically repeat the comments and conversations we had on a previous post which you must be aware upset me. I do not believe that at this time you are in anyway attempting to help or support me. So I would like to ask that you please no longer comment on my posts or interact with my comments. As I will do the same for you. Thank you, but we do not agree and we do not need to. I am sure other people would appreciate your input and approach; I am not one of them.

 

Today I am choosing to advocate for myself. Honestly, that I am in an argument online right now is so stressful and I am so disappointed in all of this. I did not want to have two side of the story figure out who was wrong or right here. Honestly, it does not matter. I was simply trying to give voice to a scenario that had happened to me more than once and which I had seen happen to others in their posts and seeing as people have actually responded to my OP with their own frustration and stories it clearly is not just a me issue. 

ladyzetta

Dear Marta,

I saw those post and I was wondering who and why they were deleted. I thought they were very helpful, post that I would have loved to see when my thought between home and MC were coming and going. Not that that was what was in question but I also saw it that way. We are here to help and support each other, sorry not everyone sees it that way.  

jfkoc

My actual issue/question was that she kept unplugging it (as well as her internet modem, the router & landline telephone) because she gets bored and she enjoys rearranges her furniture and the layout of her apartment (aka side table where all those four things are located together). So you see what I was actually asking was if the community had any opinions on getting a wall lock for the outlets in question or if anyone had any other suggestion to keep her from moving those items around when she gets the wild urge to interior design. 

Is this still the question you wanted answered? If so this may help;

https://www.homedepot.com/p/Ideal-Electric-Plug-Lockout-44-782/304058654

there are other options online

JJ401

If this were my loved one and I was considering a wall lock, I would be concerned that if loved one had access to scissors that he would try to cut the cord so he could move the appliance. While that is not something my loved one would ever do (in the before times), it is not out of the realm of possibility now. Once my loved one has decided to do something he will keep trying to do it until he can be distracted.

jfkoc

good point....my husband would probably go and get the loppers........

CharGo

Still 100% missing the point. I feel so, so un heard hear. Even less understood. I DO NO WANT HELP FOR MY PREVIOUS THREAD WHICH IS WHY I DELETED IT AND STARTED THIS NEW ONE! but obviously... this is futile. I give up. there is no hope or help to be found here for me. I will hold off deleting my account until tomorrow on the off chance something miraculous happens. I have now spilled frustrated tears in my office two days in a row not over my mothers disease but over a website. Cool.

jfkoc

I regret that I have missed the mark. I did try. We are always here if you decide to come back.

mommyandme (m&m)

CharGo:

What I’d like to know, if you’d be so kind to share with me, is how is your mother doing now?

Did you find a remedy that worked? 

I need all the help and advice I can absorb.

Thanks