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With a vague reason that the aides were off today "or something" I got a call from the hospice nurse I am most fond of, who today btw I learned had worked her way up from being a nursing assistant to going to nursing school...she wanted to come out and see mom and would take on the role of nurse assistant for the day as well as tending to mom's pressure wounds. We had a very nice visit and spent some of the time chatting as she was able to better clarify the role of the aides and what they could/should do. And you can choose to believe it or not, but in fact she AGREED with my take on things: That there was good reason to NOT use Irish Spring soap on an older person with dry skin, and in fact they should be using product provided by the hospice agency or at least be asking about that prior to doing it (using a drying bar soap that may not rinse off as well. She also said they SHOULD HAVE ASKED prior to putting mom's hair into pony tail. AND that she could easily/happily put into the care plan that mom's hair was to be blown dry when they washed it. I told her I appreciated that, but that it was not necessary, just that there were to be no pony tails and that I would blow it dry myself. In addition since we spent so much time talking, I offered and she appreciated that I got the pills out and put them in piles of 10 for her ease in counting. We then used the tamper evident seals on all the bottles once she confirmed the counts and put them back in the bottles, so now it will make her job all the easier on future visits, as she can just confirm the seals are not broken. In addition my "clever" idea of putting a yoga mat bedside to prevent the carpeted floor from being soiled, was not so clever as it wasn't holding up well when the hospital table was rolled over it....I did recall a spare chair mat of heavy vinyl/plastic and placed that down instead.

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Ok so for 24 hours I cannot post and I’m constantly auto logged out - is there something wrong with the website ? Someone else mentioned it last weekend?
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Maybe it was the way GD came across why the post was edited, responses, deleted, etc.

IMO I find the uproar silly, in light of both parents have lived to a nice old age, aides have helped so OP does not have to do as much, yet upset over how her hair looks, they don't do this, yada yada, yada, instead of being thankful and focusing on the OP'S health and well being.

It's no wonder this profession has a high turnover rate with good help being hard to find.

Putting this in perspective, there is a thread, either above or below this one where a poster lost his mom this morning.

Take this for what it is worth.
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She was blocked? Is that why I could private message her back?
my account now is having trouble posting and keeps auto logging me out - so maybe there is a glitch -I saw someone else say it happened to them over the weekend.
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Once again I have no clue what is going on, but that's probably because I usually run when things start to get ugly
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Hi gdaughter,

I am so sorry to hear of your many troubles with your loved one in care and that this forum couldn't provide the support you needed.
I also don't know the 'Irish spring post'.
That being said,
I have noticed that many of us, posters, try hard to be helpful to others who also (like you) have such a difficult life caring for their own loved ones.
Not every answer provided to me is helpful, useful or even wanted.
Yet, I am glad to get some thoughts/perspective/ideas from others.

If something works (in my case) for my mother (whom I care for); then I am happy to share that info and want to help others in any similar situation (this forum).

Taking care of our loved ones is so very, very, very stressful and sometimes this site is used to just vent.
I think that just being the caregivers unites us in the: love, pain, guilt, happiness & sadness, pride & depression and occasional confusion that comes with what you and all of us on this site are dealing with on a daily basis.

There are so many unique situations which sort of explains why not every section or part of this forum might be specifically relevant to your care case.
It took me quite a while to even figure that out.

Thank you for giving us some good ideas in your post about the medicine seal broken/not broken and the office chair mat. I welcome all ideas and suggestions.

I hope the best for you and your LO.
-Bevel
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Maybe this is the answer to your question.... https://www.agingcare.com/discussions/why-arent-my-responses-to-all-the-know-it-alls-showing-up-why-should-i-even-bother-responding-469427.htm which was time stamped August 19, 2021... written two days prior to your original posting above.

You have two of the same subject postings active on the forum.

On another note, I've been on this forum for almost 10 years, and many of us here have been though numerous software updating. And we have seen how busy the forum can get. And no, I do not work for this forum. I have been on forums for over 20 years, they all have very similar formats and rules.
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I agree, sjplegacy. G
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Can someone tell me how I send a private message? I cannot remember and now my ask a question doesn’t work lol 🤦🏼‍♀️
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If there are "secret moderators" on the forum I've never seen any creditable evidence of it.
I've never been able to figure out the actual logic between what is allowed to stay and what is removed or edited, I have reported many posts that have been allowed to stay unchanged and I think the moderators here are pretty hands off of most activity on the forum. One thing that is generally not tolerated is name calling and personal attacks on other members, especially those who have a long history on the forum and have a track record of not causing trouble.
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Gd, I'm going to report my own post (this one here) in the hope that the moderators will contact you privately and explain how the forum actually does work. I'd be sorry to think of someone losing out on AC's useful resources unnecessarily.
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Freqflyer you, I suspect, are one of the Admin personnel especially since you seem to know so much about it and how many postings there are in a week. It's a shame people don't know how this really operates and now that my eyes have been opened my life will go on and be that much better. I'm sure my departure will be a relief to many. BTW I never thought anyone commenting had the ability to change what another wrote. Do you believe in Karma? I do. Thanks for attempting to clear up any confusion.
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gdaughter, none of the writers here have the ability to make changes to other writer's postings. That can only be done by the Admin personnel who run this website.

Also please note, there are times when there can be 50-100 new postings in a week, thus it is not easy to located a "prior posting". And there are times when someone posts in the "QUESTIONS" section and thought they were posting in the "DISCUSSIONS"... therefore thinking their post was removed. Hope this help clear up any confusion.
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Sorry for the confusion. Apparently this site is being operated by others who choose to block, delete, or edit at will if they don't like what they are reading. In an effort to reduce my stress some of which is generated by posters here, I will be participating less, if at all. You should all be aware. I did respond to your comment and it never appears to have shown up so I responded privately I hope to you among others.
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GDaughter, I'm so glad you had a good visit with the nurse you like and that you were able to get some issues resolved.

The bigger question that I think remains unresolved (I went back to some of your earlier posts to see if I could find some of the things referenced in your current post) is WHY is your mom now bedbound? Is this status what is contributing to the sores on her heels? Can hospice provide you with equipment to help mom get into a chair for some period if time during the day? Can they provide you with a wheel chair so you can get her outside for some sun and air?

And I re-read about your aortic dissection! Yikes! Are you doing whatever followup is required for that? Please don't neglect your own health.
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GD - I’m unsure of some of the things you mention above - like the soap? I must not have seen that post - I too would have suggested a very specific gentle soap and/or to speak with someone about it and suggested a few I have used for my mom. I am glad you got time with a trusted hospice nurse today.

Sometimes I think because all of our journeys are very different - as are our loved ones - people do find it difficult to help navigate when they don’t feel something would bother them. I have learned what may not bother me may bother someone else and vice versa.

I am sorry if you didn’t find support when you needed it or if you felt unheard - even if they didn’t agree or didn’t understand there is no reason for anyone here to be unkind. I too have learned on this board that I don’t agree with people all the time or rather I don’t agree sometimes how things are delivered - but I do my best to support whatever decision someone else has to make.

I too have had to open my home (which truly was a very private place that I worked hard my whole life to be chaos free) and had to open it up to my moms stroke recovery and care to every nurse - wound care - PT -OT - Speech - dr service - stranger after stranger - trial run on care givers - trial run on local agencies - social workers etc - let’s just say it - “it’s a parade every day” (though most have been amazing it still took a lot to get use too) - it was and somedays still is a huge adjustment “smack” in the middle of a gut wrenching tragedy to most family’s. This is hard - and if you felt treated badly - I apologize and I hope I have never done so.

Believe me to this day - every time someone spills the bath water - doesn’t wipe it and leaves dirt footprints across my white tile (that I actually somehow managed to find time to mop that week) - I have to BREATHE and somedays curb myself from having a tizzy lol (so no your not alone in wanting to throw yourself on the floor some days and have a tizzy) I agree we do not have help in our homes to create more work - but there are days I have had to also pick my battles as not to lose my mind. So believe me I know where your frustrations come from and they can come from crap healthcare providers and they also come from pure exhaustion - we have all been there! Everyone here should all have a level of compassion to see when one of us is losing it and venting - sometimes we just need to let them lose it - let them vent and just be there - sometimes we don’t even need advice sometimes we just need a little validation or even just allow each other to be broken. We also should never allow each other to stay broken. So we also sometimes try to give each other tough love and sometimes by text/email it’s doesn’t come off real well. Either way - I hope going forward you don’t feel anything other than supported (also understand if someone comes off hurtful- they also may be having a bad day and you may have to give them grace at the same time).

It’s okay to feel frustrated - so many parts of this is frustrating. It’s not normal life - we are all stressed and tired and grieving a little every day. Be kind to yourself always and realize we are all humans and humans all make mistakes. Just do the best for you and your mom and that’s all you can do.
Wishing you a good night and again a reminder that you will get through this🦋
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I am so glad that you got it all straightened out. I will assume the nurse will take this info back to the powers that be. I would really like to know how the aides are handled after this. I do feel there was some disrespect here. People can be vindictive though so watch for it. Where I live CNAs really don't have to worry about find a job elsewhere.

Please come back and tell us how it works out. Or, PM me.
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I don't see any way to view your prior post to have an understanding of this one. I don't really find this forum user friendly or it's just me not understanding how to navigate. I had an account here some years ago under a different name and had a similar experience, asking people with expertise and experience about specific situation and was blindsided by the personal attacks and opinions of angry people, so I quit for a year. This forum is useful for a few things and I'm grateful for those! There are some caring people here! I ignore the infighting with the irritated regulars that have to answer every question. They mean well. At any rate, I wanted you to know that it is possible that folks cannot see your prior question so may be confused. Good luck with everything! ❤
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HOpe you get to see my response above....
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Well, perhaps you missed prior question/comments by me...I as ASKING for people who knew., to elaborate from their own perspectives having had care for a loved one, what aides should or could do and if what I had witnessed was appropriate. I was slammed with arrogant, and for lack of a better word, snotty comments from people who think they know it all who were NOT at all supportive or kind, judging me and my behavior and how I SHOULD handle things if I am unhappy with the aides etc. I have since learned what a sham this whole forum is and so I don't expect this response to even be here for you to see. I have made a couple friends here and we have connected privately for which I am grateful. The comments I was hit with one person recognized as the way this site operates, and she felt badly for me so responded with a supportive private message of her own for which I am so grateful. It's too bad that this website is what it is because it could be an immense blessing to many and it seems instead it has no rules, just does what they want when they want, block or delete comments that don't support their goals and in short exploits caregivers by doing so. I am struggling to keep my stress level down and this site only seems to increase it by making me feel as if I must defend myself while others are quick to determine from my words my mood and so on. And then in the vein of caring proceed to tell me what I should do. Often slanted to an institutional placement (what a surprise A place for MOM who apparently OWNS THIS SITE).
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I can't seem to connect your opening sentence with the rest of your narrative!!
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