My "whine moment today." What's yours?

Jeanette..I found a wonderful company where I ordered Mama a bunch of those gowns that are open in back and they are pretty to boot! I just got two more that have pretty butterflies on them...they are very soft cotton poly and wash and wear really well and Mama loves them....so let me know if you need the address for them..also when you order five you get one free..and the prices are very very minimal....

oh pam....I am so sorry to hear of your Dad's passing, but praying now for comfort for you that he is now whole again... (((hugs))) and prayers for you and your family...

Boni. hehe, that was a different rib infraction... the pool boy gads when will I learn I am not 26 any longer.

Veronica, awesome idea!! You must have been here early this morning when I was contemplating just cutting it off so I could clean her up.

hope, yes please :) thank you.

I think I just got a tongue lashing from Lisa, my carer. We've both been concerned about mom and her UTI but since she's now on hospice my hands are somewhat tied. They took a urine sample late Wednesday, I was told 2-3 days so I have did home remedies, which I honestly think are now working. Well, she called to check on mom and see about the test results. I am thankful for her genuine concern for mom.... but, she kind of chewed me out for not calling hospice and being forceful for the results. :( she told me she can't stand thinking someone is in pain... and I can? ... really, I just don't want to make a giant stink 3 days in. This is a fine line to walk... mom has been alert all day and eating pretty damn well. Man.... she did sort of make me feel like a total incompetent loser though. We still love her for her care.

Pam, big hugs of comfort being sent your way. You were a wonderful daughter. Your dad is at peace now. I know it is hard to be without them. I have a feeling that they will be waiting for us on the other side.

Pam, I'm sorry for your loss. Hugs...

Jeanette she's not cross with you, she's cross with hospice for not getting their finger out - after all they can dipstick a urine sample there and then for a rough idea, then send the rest for culture for details, can't they. But I know how you feel - I only have to hear the district nurse observe that mother's tail bone skin is bruised to be totally crestfallen for the rest of the day. Still hunting for a decent, practical commode cushion - why are all the designers in this field such complete know-nothing rubbish???

On the subject of access, washing and tidying them up in general I just want to check -

HAS EVERYBODY GOT A SLIDE SHEET?

I am so in love with mine that I am almost looking for excuses to use it. I marvel at it, going "wheeeeeeee!" every time I whisk her effortlessly up the bed or slinky it out from under her afterwards. So simple, so clever. Gladdens the heart (and that designer, to take back what I just said about them, should get a Nobel Prize).

Whine moment today is on behalf of paid HHA's on zero hours contracts and stupid wage rates, and what is their incentive to do the responsible thing and take the day off when they've caught a cold/flu (probably from a client) and shouldn't be at work? I sent ours home this morning, and told her I wouldn't tell the agency if she didn't. She knew she shouldn't be anywhere near mother (I wasn't thrilled that she was in the same room as me, to be selfish about it) and offered to do housework instead, but the poor girl was barely standing. I plan to let time pass so that her agency won't know which person I'm talking about and then take the issue up with them.

I'm hoping meanwhile that mother has got a UTI (ours - ours? Did I say ours? I mean HERS, for heaven's sake..! - is under investigation too). Otherwise her dementia is galloping, or she's having more strokes, or there's something else going on that I don't even want to think about it. She's so bonkers it would be funny if it weren't awful. Never thought I'd be tentatively sniffing at incontinence pads and wishing they smelled worse.

Pam, I'm so sorry to hear of your dad's passing. Sending you big hugs of comfort and good thoughts.

Yes, we just got a slide sheet. Silly me thought it was a barrier sheet.

Mom has been up all day and talkative yes, it most indeed lovely, but why? I'm not fussing, just noticing.

CM, did you read my previous post where my career bitched me out about not being super proactive about ma's UTI? It was the same day they accepted her to hospice? I've been giviner OT C meds while we wait. . Trust me, there is no need to sniffle those pads, your eye will melt...

Pam I am sorry to read of the passing of your dad. He is at peace now.

I was reading on another thread about a referral agency who is charging a caregiver a daily "admin fee" for having referred the live in HHA for 5 years...sounds like the caregiver does most , if not all of the paperwork, reporting, payroll, etc...and yet has this DAILY fee they pay an agency who referred a HHA??? I guess I am writing and emoting about something I know nothing about but honestly having done this now even for over three years I really get angry when I think I am perceiving someone is being scammed....I am so protective of caregivers now, I will almost come unglued when I even hear someone downgrading what I or they do, or even a discussion where anyone is acting like we are living off our loved ones, etc....I don't know why this has me so fired up this morning, but I have worked in jobs all my life that were physically, legally and emotionally intense and yet none of them compared to what I have been through as a caregiver...I was also searching for answers for our friend about her situation and ran into all kinds of services where it is not uncommon to be paying live in caregivers $1,900 plus per WEEK and these people weren't even live in and did not keep up the home, lawns, etc....I think families who deride caregivers and what they do should be ashamed of themselves......urge to rend my clothes and run up and down the street screaming....... ok...that is all...thank you for letting me vent.....

meant they referred to live in as providing 40 -50 hours a week..not live in..that was confusing....sorry...I need an edit button..probablya delete button too....but I fear that there are way too many folks out there who sense folks who are getting burned out, desperate, can get zero help from family members, etc...and they zero in on them (us) like a ravenous hawk circling overhead....it just really really makes me livid... ok..done now...I think.....

Hope, I get fired up many mornings, but mine is more related to siblings that prefer denial and take advantage and in so doing spend bucket loads of parents money to protect their inheritance!

And these situations is not a "whine"! This is major problem socially and legally! There is definitely something wrong with siblings that do this and a system that allows it to happen!

Oh that is true for sure...I know there is a horrible problem with the entire world taking advantage of the elderly, or people in end of life situations..period...but this particular issue was an agency who was doing nothing other than continuing a daily fee to a caregiver because they referred someone to them...so they are paying not only the HHA but also the agency...something just seems really off there...but like we know..something is really off regarding the inequity of the caregiver and their loved one who truly are there for the right reason...ie..don't care about an inheritance, hanging on to valuables, etc..only love for their loved one... and too few who care about it...other than the ones who truly care about their loved one and are either too tired or don't know where to turn.... just sad....

Country..yesiree! I have a slide sheet...I actually had to improvise when Mama first became bedfast...I didn't have HH at the time let alone Hospice..so I had to get busy figuring it out on my own...I had a heavy duty vinyl table cloth and so I folded it to cover the "important area" just above waist to near the knee area and it worked like a charm..in fact, when Mama ended up at the hospital soon after with pneumonia, they used it when the ambulance took her to the hospital and all the hospital staff marveled at my ingenuity.. (blushing ) but it did work great...it is a necessity in helping you turn someone gently (on them and you)....

And kudos to you for how you handled the ill HHA....I feel for them...because I know if they don't come they don't get paid and like you I am all too happy to let them go home and not tell, because Mama catches everything now and I can't risk it...but they should never send folks out who are sick..I'm not rude about it but you have to be proactive and I love the way you handled it..

Jeanette...I undestand your not wanting to go crazy on them at the first..BUT I can tell you sometimes you HAVE to get firm with them and tell them if they can't get her some held you know there has to be another service who will. Again, not really me to get so forceful with folks but I have learned the hard way that all of them will let things drag, slide, or simply get side tracked because they get sidetracked by someone else...so get on their butt about it...

I'm actually baffeled that as long as I have been telling the nurse that I thought Mama had a UTI they just poo poo'd it...Mama just seemed to take a turn quickly and when the nurse and everybody else just attributed it to end of life processes I was so thrown that she could have been doing so well after her tooth removal and then suddenly just spiraling downhill....but I had begun to just accept it but when the snow was coming and I knew if it snowed that much I would not be able to get up or down the hill nor would anyone else and so I called them and just told them...Look , I am certain Mama must have a UTI and I know yall about to close your offices and send everyone home and if I am right, I and she will be stuck on this hill and she needs help NOW...I told them I'd rather err on the side of caution and while I know you don't want to every take antibiotics too much because of the detrimental effect it can have, that i knew Mama well enough to KNOW she had a UTI, including the smell, her delirium, etc...the nurse agreed and called the doctor and within a couple of HOURS I had my cipro and within 12 hours of taking the first dose, Mama began being Mama again....

So all I am saying is that while we all want to be polite and contrite, etc. and not stir something up.I have just reached a point where I know I am the ONLY one on this planet who truly KNOWS my Mama's behavior because I, like you, am with her 24/7...you know in your heart she needs it...get on em....hope I'm not sounding like a rear end here...but when it comes to protecting Mama or worrying about being an ass to the hospice place...I will protect Mama every time...and I have some "former' hospice providers who can attest to it.. :) And I think the nurse was in fact upset at her employer...not you....I have found our nurses feel protective about our loved ones as well....

Hope keep your clothes on there is snow out there.
I also read the post and was not clear how or what was being charged.
The agencies that provide caregivers from RN's down to house cleaners are businesses like everything else and have to be paid to cover their overheads.
These fees can take many forms but they are usually charged as an upfront fee from either the worker or the potential client. Other times the agency charges a set fee for providing the caregiver then the takes out state and federal taxes etc and retain a percentage to cover their own overheads. I know it sounds unfair and like a scam and sometimes of course there is abuse. However a caregiver is either an employee of the agency or is self employed when he/she either works illegally and is paid in cash or legally and pays all her own taxes and expences. It certainly doesn't sound right if a client is paying the agency $20 an hour and the worker only gets $12
Your hospice workers Hope are all employed by the hospice organization and depending on their contract they may be full time (with benefits) part time or per diem. Per diem is the worst situation because you never know when you will work but the benefit is that if you are found to be reliable and experienced it can lead to full time employment. I started at hospice per diem and after 8 months was offered a full time position. Some of the bath aides you have complained about may well be per diem and fit your visit in when they can. They may have other jobs so really have to juggle their time. Sometimes even hospice has to rely on agency workers to fill in and has to pay the same fees.
I do not believe the agencies are circling vultures looking for victims because they have no way of knowing who is desperate for help. It is all a mater of supply and demand and where I worked that area had far more demand than supply.
If I have got this all a*** backwards LadeeM will quickly put me back in my box.

lol...I will keep my bloomers on for now Veronica.

The way I read that particular post, it didn't sound like what I think of as a home health or hospice care provider...it sounded more like a "finders fee" situation and that was what flamed my fanny....I totally agree that the home health and hospice folks have all the employees to coordinate, services to provide, etc...but this sounded like someone who found an employee, similar to an employment agency, and was just continuing to charge a daily fee. the poster commented that they were doing all the paperwork, all the payroll, etc...so it is entirely possible I just didn't understand what she meant...so certainly if I did (and until I knew for sure I guess I could have kept my comments to myself)....hehe.....but that particular situation sounded "iffy" to me...

It is odd to me but actually all the HHA whom we have had..and actually we have had the same one each day except for a while with the other agency who would just up and send a random person here and there...but they all said they were per diem..I don't know why they told me, I never asked, but in summation, I do know that those ladies who come here work so hard...so I never want to sound like I think our agency is anything other than highly exceptional...that other situation just sounded , again..."iffy"....

Agreed Hope we don't know the exact details in this case. i don't understand about doing payroll paperwork. all she should have to do is her time sheet then the agency works out the rest. Won't waste any more time on speculation. yep keep you bloomers on are they big girl band?

OK. Spoke to the hospice nurse in regards to mom's UTI. She looked up the results and it was "moderate", she can see where they ordered cultures so they know how to treat it. Those should have grown over the weekend and tomorrow we will know what antibiotic to use. We shall see. Yesterday she was awake all day talking and being sweet. We even played a silly game of catch. Today she's very sleep... and yes, her swallowing is changing as well. While changing her today I noticed what seems to be 2 tiny skin tears near the tail bone. Tomorrow I need to speak to someone about how I go about doing this in the bed, yes the slide sheet is awesome it's the turning from side to side that I'm finding difficult wah and since she's lost so much weight the skin is very saggy in that area, couple that with the depends bunching up during the night... it's going to be a challenge keeping her behind safe.

I hope you will be firm with them and point out that her UTI may be partially to blame for her sleepy behaviour. FIghting an infection at her stage is hard on teh body - you (all of us) have to push them (staff) *hard* but politely - in this case I hope you will push them to start her on antibiotics immediately; in all probability if she's had them before, they already know what will work and what the culture is. The skin tears are troubling, they can go bad very quickly especially if your mom is in a diaper and frail with loose skin. They need to document and dress them asap.

Having been there / done that so many times, I find it so frustrating that people caring for their mom don't get the respect and immediate attention that is warranted - just because the patient is old doesn't mean they can slow down on that.

Cat, thank you. What troubled me, is according to hospice, UTI's are not part of it? It is going through her doctors office and he is the one who has to write the script. Trust me, first thing tomorrow morning I will be on the phone.

Mom is in depends now but only wets at night... they are tiny but def looks like what it could be. I agree they should just as diligent for an elderly person. I was so thankful to have help... it's been very hard figuring this out on my own. If it wasn't for this website and the wonderful advice, well...

Jeanette hospice should treat UTIs it is part of comfort care. Sometimes at the very especially if the patient is having trouble swallowing they will ask if you want to treat but no they should be on the stick. they can start something immediately and change after the cultures come back. Happens all the time.

Feel like a full-blown whinge but too tired. How can someone who eats so little produce so much poo? Is a mystery.

Lovely Nephews 1 and 2 called their Granny today. Which was great except that for overhearing her say "I've been in bed for a few days, I expect you heard, but I'm better now." I wonder if nephews realise quite how nuts she is? LN1 said to me "but I wanted to know how you are…" but since I'd just spent five minutes describing the bedlam round here I thought that pretty much covered it. HHA definitely has flu; she called and I told her not to come in. Second HHA agency then called to ask could they come an hour and a half early? - that would be, no. I'd just got her back to bed and did not want her woken straight up again. I have been tearing around like a blue-arsed fly mopping up poo and changing sheets for a straight eighteen hours now and she hasn't even got diarrhoea. And if she was properly incontinent she wouldn't be able to hold on to urine in the faint hope that there will be, somehow, if she waits long enough, a fourth option better than commode, bed pan or weeing in her pad, and then she wouldn't pee an entire bucket load, overwhelm the pad and soak her fresh clean pyjamas and her carefully made bed. Aaaaaaaaaaarrrrrgggggggghhhhhh…!

I need to be careful of what I wish for, right?

oh shoot CM... I agree... Aaaaaaaaaaaaaarghhhhhh

We looked at moms bottom closely this afternoon.... looks more like crease marks than what my worst nightmare imagined. Whew.

Veronica, hospice does not treat UTI's. ... not here anyways. This is our first dealing with hospice and a UTI. Mom's 3rd in the past 2 plus years. She's had a strange cough today... like her saliva wasn't swallowing so well. Not gurgling.... just a cough like it went down the wrong pipe.

sigh

Mom is in bed snoring... which is my clue
Cm, this is properly scaring me.

Jeanette, yes, they will get the crease marks in their skin and at first it can look like a tear, but my words regarding a bedfast person are BARRIER CREAM......I slather that stuff on each time I change her and I'm telling you it is one of the best defenses to them getting tears or sores....

I agree with Cat...I would push them for a script....I know you are sick of me saying that, but our hospice ALWAYS handles the UTI issue....Mama does not even have a doctor outside of the hospice one anymore, but just like the other day before the snow...the nurse was able to get the script pushed through at my request..they did not even do a culture...because I know her behavior when she has one...and I promise I don't take giving antibiotics lightly..they can be detrimental to give them so much that they destroy all the good bacteria in the colon, etc. but I have also learned that mixing a probiotic in one of her ensure shakes each day counteracts the huge amount of loose poo during a course of antibiotics...also helps with that issue period....I buy the pharmacy brand and make sure I pick one that has the same formulation as the name brand ones...open the capsule and mix it in with their shake, some juice, whatever...the doctor confirmed it was fine to do this..it has helped immensely with the loose poo issue....

You know, it is sad, but looking back at issues that truly were things that needed attention, the bad tooth turned abcess, the UTI's that were causing delirium, all of it...they acted quickly once I threw a fit if I felt like they weren't moving on it...I know how busy they are, I know how hard they work...but for me...that is what we are on hospice for in the first place...and after seeing Mama lie here in pain while I heard all about the red tape, oops I forgot or I thought so and so called ..sorry....I had to have a literal melt down and let them know if they couldn't do it, I would be happy to find someone who would...and it got done...I am all Mama has and if people want to call me a "b" for being proactive..then they may call me one and get over themselves.... in all honesty I get along great with the HHA and the nurses..I know it's not them...it's the blessed red tape and just flat out person dropping the ball somewhere in the office....I have had to show my arse so many times in the past three and a half years it is ridiculous..but I am still here...and better than that..so is Mama.... :)

one kind of funny sidenote..our nurse ..after I had my last meltdown over the abcessed tooth issue, told me she didn't blame me one bit...she would feel the same way..I knew she was trying because I had heard her on the phone talking to the office...who was always forgetting this or that...anyway..the nurse told me..."Wow, who knew you had that much fire in you??" :)

Hope, thanks for the information about the probiotic...it makes great sense because the antibiotics can take out the good bacteria too!!
I finally got a call from the home medical professionals and I am resting a little bit better that that will be underway. I still feel like everything is so precarious though, a scary rollercoaster ride with no safety bar!

Katie....it really has made a difference for Mama...after I researched so much information on all kinds of stuff and knowing the probiotic capsules are to replace good bacteria...I thought why not at least try it...and it helped not only the diarrhea that often occurs during and after a round of antibiotics, but it also has made an amazing difference in the loose watery stool that her constant diet of ensure and juices causes....I can tell Mama is much more comfortable too...and mercy knows it is helpful for us as caregivers...I would think it would also help reduce at least to some extent , issues with skin breakdown...anything that can help, right??