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gdaughter Asked July 2021

Nothing is perfect, agreed. But could we strive to come closer? What's acceptable?

So mom has been on the receiving end of aides from hospice daily for about a month now, for which I am extremely grateful....I am trying to be an unobtrusive observer to see if the nurses visit on short notice I might add, last week had any impact on the bath procedures of the aids who I don't think even when the nurse was present was done as well as it could have been. It is obvious that mom wants her breasts and her private parts covered. I realize I have mouth and I can use it...and will...but was hoping for a chance to discuss it with one of the two alternating nurses who was due to be here on Weds. She never showed...In any case here is a new scenario for your opinion....The other morning I had a fall. My bare foot managed to slip on a short set of carpeted steps and it threw me off course so that I slid down the remainder doing quite a number on my back, right side, at the waist. The pain seems to be easing up, oddly no bruising, but I was stupid and didn't put ice packs on till the day after. Day of, aides were due and I left them a note on the door: That for whatever my help was worth, they were going to have to manage without me as I had hurt myself and needed to rest; "Please leave any soiled laundry/linens on the floor in front of the washer." Polite, simple, direct I thought. Only to get in there today and find AGAIN the pile on a cushion for my pup's use as she likes to keep me company. It's basically a nylon net bag with zipper one can put old clothes or linens in to recycle. So gowns potentially wet with urine (not sure) and wet washcloths etc have made the innerds of our cushion damp if not worse. I NOW have a note on the cushion saying DO NOT PUT ANYTHING ON THIS CUSHION. This is in addition to the other little things like placing a drippy basin on a wooden desk top, not wiping feet off when coming in from wet ground (is this not just common sense/courtesy?) and the missing pillowcase. Am I being overreactive/hypersensitive? I just didn't anticipate the need to supervise who I expected to be experienced professionals. The weekend person even mentioned maybe mom does better with just one person...Of course there are other hospice programs to choose from in our area as well.

NeedHelpWithMom Jul 2021
So sorry to hear about your fall. It sounds dreadful. I hope think you’re feeling better.

It’s a shame that your instructions weren’t followed. You have certainly had your hands full.

I suppose all you can do is speak to them about what happened and hopefully they will get it right next time. Or ask for a new aide to come out. I did that when I wasn’t pleased and they sent someone that I was satisfied with.

Best wishes to you and your family.

Sunnydayze Jul 2021
I’m so sorry you are going through this. This is all very high stress. Healthcare workers coming in and out is is stressful enough alone. I feel your frustration. I cannot imagine managing all of this, working remotely and recovering from an injury. I’m sending you a hug and prayers. ~ Sunny
gdaughter Jul 2021
Thanks so much Sunny. Back is feeling better and I got much comfort talking to a friend earlier who had the same kind of fall a month ago.

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Countrymouse Jul 2021
I imagine that they thought the nylon net bag with a zipper on the floor was also waiting to go in the washing machine - in which case that would be the obvious place to stack the laundry. Your note will no doubt have solved this particular problem, but if not another solution would be to buy a cheap'n'cheerful plastic laundry basket for them to put your mother's used clothes and bedlinen in.

I'm sorry about the foot wiping. I can't explain this. It baffles me when clients are surprised that I change my shoes at the front door. Several have told me not to bother - my reply is to say in joke "ah, but you don't know where I've been!" - and one gentleman said, amused: "you know you're the only who does, don't you?" I agree with you: to me it is blindingly obvious that you do not stamp around people's houses, including their bedrooms and bathrooms, in grubby footwear.

Would you consider getting one of those oversized absorbent doormats that they advertise for putting an end to muddy pawprints?

A good place to put a wet wash basin is a frequent problem: is there a more suitable stand for it? I'm sorry to add yet another shopping suggestion, but a trolley or changing table (the sort for babies) would be ideal.

I'm sorry about your slip, hope the strains and bruises settle down quickly. Some of the anti-inflammatory gels are helpful, your local pharmacy can advise.
gdaughter Jul 2021
LOL...that's putting it in perspective...Muddy pawprints, I would tolerate! Fro canines are the best! It's the people I have problems with! I now realize why there is such a selection of door mats that say Wipe your Feet or wipe your paws because so many are so clueless!...Those super absorbent doormats are not very pretty but for the functional aspect, clearly a good idea...Also getting a basket for the laundry that may be how these aides were raised, might be of benefit, thanks for the pointer. I shouldn't HAVE to, but it will save me the grief and frustration so I can put it in the hallway, and engage the lock on the laundry room door. I must admit that since the pillowcase went missing, I am concerned that my clothes I have stored in there may be attractive enough to be taken as well. I have not made any accusations. But the pillowcase has yet to turn up either. BTW, yes, we were provided with a hospital table on wheels and they can and sometimes DO actually put the basin on that, but not always. I have put a towel on the desk (HINT HINT HINT!) which they typically now use if using the desk....Ice packs have been a big help with the back thanks, and I drove for the first time since it happened, yesterday. I also think the frozen hot chocolate a bakery cafe delivered after it was not brought in myoriginal order helped:-)
gdaughter Jul 2021
Thanks JoAnn....no I realize we can't have only one person only serve mom; the idea was that there would be one person (even if it varied) as opposed to two. As in, in mom's mind, she may be overwhelmed/out numbered by two people tending to her, that's all. right now two aides come daily, but there is one aide who is assigned weekends and holidays.

funkygrandma59 Jul 2021
I don't want to sound mean here, but if you're still having issues with the hospice aides caring and bathing your mom, you have to take some responsibility, for not speaking up to the aides themselves(not waiting on the nurse)and making sure they're doing things the way mom and you want them.
You weren't happy with the aides a while back, and I would have thought that you would have found your voice by now. The aides are not mind readers, and as you have found out, being an "unobtrusive observer" just isn't cutting it.
My husband was completely bedridden and under hospice care for the last 22 months of his life. I was by his side EVERY time the aides came to bathe him, making sure they were doing things the way he liked it. And if they didn't, I let them know right there and then. I never waited to speak to the nurse, as the nurses are not in control of the aides.
You are making this much harder on yourself and your mom, by not speaking up when you're not pleased with something they do. You have to remember that they see a lot of patients in a days time, and I'm sure everyone wants things done differently, so they don't mind being reminded how mom wants things done.
You HAVE to be the voice now for your mom. Quit making excuses as to why you shouldn't have to, or why you don't want to speak up, and make sure things are being done the way you and mom want them.
Perhaps it would be less stressful for you to only have the aides come 2 or 3 days a week instead of everyday. I personally have never heard of hospice aides coming every day. They only came twice a week for my husband, and I was never given a choice.
So, put your big girl panties on and, start addressing the issues with the aides when they happen. Quit putting off what should have been handled a month ago. You can do it. They don't mind, I promise.
gdaughter Jul 2021
IN my real job I DO SUPERVISE AIDES of a sort, they do housekeeping only and for the 30 years I have done my job well, I have been sensitive to and respectful of these people, and so I strive to be with the hospice aides. So I DO NOT FEEL it is my job and is indeed the job of the Nurse who IS their supervisor to do that. I am not being paid to do that, but totally agree with my speaking out, in fact to both the darn aides and to their supervisory nurse. I have enough on my plate, but see my job also as you pointed out as an advocate for my mother. I wonder about printing in a large font basic rules for them and any aides to come or sub. I am not used to dealing with this stuff, nor is anyone and I think hospice holds some responsibility for not making clear what the process is if there IS an issue. No one is typically used to this role. ANd no one cares that YOU have never heard of aides coming every day. NOW you have. My mother is incontinent and difficult, and so it is essential for the aides help on a daily basis. ANd you have no idea if these particular aides will mind or not. Frankly, I don't care if they DO mind. If I wasn't also trying to work remotely and recuperating from the fall, I would be investigating other hospice program options now wiser to it all, or asking for a change of aides. I am also further agitated after today when the weekend aide who comes alone called before 8:30 to announce she would be here between 10 and 10:30. Dad kept shutting the front door which I opened for her ease on arrival, and ultimately said "She was already here". Which explained why I thought I was losing my mind on going in the laundry room and finding wet washcloths and towels and knowing I had put the last load in the dryer last night before I went to bed. On top of it, the day prior the two aide team had yet again, in spite of my note saying to put soiled laundry ON THE FLOOR IN FRONT OF THE WASHER, put it on a net cushion filled with an old mattress pad for my pup, potentially making it unnecessarily stink of urine. I have since posted a note on the cushion to make THAT CLEAR. Back to today/yesterday, this aide who came earlier than she claimed (I get it, but then why bother calling in the first place?) left an empty sack form briefs or pads filled with soiled disposables, open sitting in the open. GOd forbid my father would have disposed of it himself, he had ME to ask, but the aide could have easily asked for a grocery bag to put it in, knot and dispose of. I will be addressing that with her later I'm sure. There just seems to be a general lack of common sense and respect for others and their homes. Do I need to put a sign with a downward arrow toward the door mat that says"This is a doormat" Please use it to wipe your shoes before entering. We do not have a maid service and someone to clean up behind you. We are struggling enough to take care of our loved ones. We need help, not more work generated. Thank you for your cooperation.
Grandma1954 Jul 2021
You should speak up if the CNA is doing something that you question.
You mom should be covered when they are bathing her, changing her, or even moving her in bed or to another spot.
DIGNITY. RESPECT. COURTEOUS . These are the ways a CNA should treat your mom. If this is not happening you have every right to contact the case manager and inform them what is happening and ask that the CNA treat your mom as they should.
As to your request that soiled items be placed in a particular location should also be brought to the attention of the manager.
Yes the CNA is busy but this should not change the way they treat patients.
And as you point out there are other Hospice and you should remind the case manager of that fact and just for your own curiosity ask how quickly a transfer could be done if you feel it is necessary. Just to see what they say to that
gdaughter Jul 2021
I love you gram. Thanks. That's the response I needed to hear. It's still all a bit new to me. My own organization makes clear to people who to contact and what to do if an issue, and I have negotiated many more than I wish over the years, but we have done so with kindness, respect, grace, and tact...or at least that is always the goal. I know well every person we care for however little or much, and none of what we do is hands on btw, makes a difference. Every person just wants to be treated with those traits you mention. BTW, Originally I met with a social worker who seemed to rub me the wrong way and a nurse who rotates with another involving mom's care. The social worker changed without my having said a word to anyone and when I asked there was no real explanation...I've got my work cut out for me. And btw, had one of those I supervise gone to a home where the primary caregiver had a fall/accident and couldn't give her help to the usual degree it is a circumstance where my staff would have notified me and any other relevant staff who would have followed up to see if there was anything more we could do to help.
JoAnn29 Jul 2021
I think that if you ask that something be done a certain way, they should do it. Its call courtesy on their part. I see no problem since the home is yours.

The having one person is not going to work. One person cannot work 7 days a week. You could ask for the same one during the week but u may not be able to get one on the weekdend.

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