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Haven't had a chance to call Medicare with some of these questions...SO, #1 social worker whose purpose I am unclear about, came out with one of the nurses from hospice that I pretty much like. 1. Social worker was hands on lifting mom's legs to assist nurse in making it easier to wrap her heels. Is this appropriate? Hands on by social worker? 2. Prior to their departure I asked if they could take the drugs they had left and then had to "see/count" yesterday with them. They were not allowed/able to do that but COULD throw them out with me. I wasn't sure that was the wisest move on my part "just in case" they were ever needed....but I did have an idea: When mom was drinking the salad dressings I'd ordered a roll of tamper evident stickers from amazon and never used them. I suggested putting one over each pill bottle cap and that way they would know no one had taken any. This was acceptable so next time a nurse visits, we will do that.
The aides arrived and washed mom's hair today. I was TRYING to get some work done, so didn't watch the process and next time I saw mom, her maybe shoulder length hair had been pulled up into a pony tail which she would NEVER EVER DO. They did this with a regular rubber band. the look was sort of like Pebbles FLintstone. I feel as you know these aides are making decisions and doing things (ala the Irish spring bar soap presumption that it was acceptable), that they are taking advantage of a patient who is both somewhat deaf and has dementia. They are imposing their own standards and desires on her without anyone's consent. They do not ask. ANd there IS a blow dryer right there and available. SHOULD they be blowing her hair dry if they wash it? Should they be responsible for a task like cleaning hair out of a hairbrush? I did call today to ask who their supervisor is. It as just after hours and the person answering the phone did not know so I will have to call back. I want to be fair, but I still am at a loss as to what is reasonable to expect of them as well as what they expect from family. Do you think that it is appropriate or would I be asking too much to ask for a change of aides?

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It seems to me that instead of being present in the moment and giving guidance on what you want done, you are after the fact whining about what wasn't done to your standards. The nurse having someone else who was there help out...what a crime!! Did you say anything then? Clean the hairbrush or you'll replace the caregivers?? You might try being direct in the moment instead of your current approach of finding fault afterwards.
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gdaughter Aug 2021
Well don't YOU know everything!
I am trying to not hover over these uneducated individuals and take into consideration that I am NOT their damn supervisor and I have enough hats to wear without that or the stress. IT is NOT my damn job. They should at least be taught to ASK the patient if able to respond OR the family member if available about preferences or if something would be okay to do. I am TRYING to be sensitive to the thoughts and feelings of these individuals and put myself in their place. I don't need your sarcasm and attitude to add to my load and I do hope you get to experience some of what I have described first hand. I am simply asking others who have had relevant experience if they know what is reasonable to expect of an aide. I wouldn't expect them to clean a hairbrush if that was not typically a task they would be doing. ANd I do not feel I should have to constantly be present to observe them. They should be educated and trusted enough to do the job appropriately to begin with. I have enough on my shoulders without taking on the job of working as their supervisor when I am trying to keep up with my own job. You are another reason I am seriously considering getting out of and off of this forum. No one comes here to be trashed and slammed for what they are not doing although perhaps your suggestion meant no harm. I say again it is NOT MY JOB to be their supervisor. They clearly lack common sense and empathy. I hope they and you all get to experience similar care to understand what it is like from a patient or family perspective.
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GD, the thing about the hair...is totally unreasonable.

How is an aide supposed to that your mom woukd never wear a pony tail?

If she had come to ask you, woukd you have complained about the interuption?

The aide is not a hair stylist, so I think expecting her to blow dry mom's hair is unrealistic.
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gdaughter Aug 2021
Disagree. Patient's rights/desires/preferences which her family knows should be respected, and as someone else said more tactfully above, if she did not have a ponytail on arrival, she should not have had her hair put in one after. As much as many here have made it clear I can speak out proactively, I am not a mind reader, and they could as easily ask. And no, I would not have minded the interruption for that, in fact they could have called me to ask if needed. I never expected the aides to be hair stylists, just considerate human beings who might show some empathy and think of how THEY would feel if their hair was put up far different from their usual way. I didn't say they should blow it dry, I was only asking what was typical usual for this circumstance, particularly since there was equipment left IF needed.
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Hi,
You need to make your preferences known.
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gdaughter Aug 2021
Will be doing just that. Thanks.
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Aww, Gdaughter, I totally get the anger but from the outside it sure looks like it’s from this sad situation in general, not specific details. The situation is horrible. I’m sorry you are going through this!
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gdaughter Aug 2021
thank you for the empathy. It seems in short supply with most responding.
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If she didn't have a ponytail when they shampooed her hair, then one should not have been put in. And No, its not their responsibility to blow Moms hair dry or clean out the brush. Their job is just to bathe her.

I would not complain about this. The next time they come just say nicely "when your done washing Moms hair just leave it down and I will blow it dry". I don't remember the in home aide drying my Moms hair.

From a person who herself was OCD when it came to my Mom, I think you do expect too much at times. I have agreed with you on things like covering Mom up but sometimes you have to let the little things go. You are putting too much stress on yourself.

When it comes to pills, they have to be disposed of properly. You can not put them down the toilet. You are not suppose to throw them in the trash. I don't understand what you mean by giving the pills to the nurse but not throwing them out in case they are needed. Needed by who, Mom or used by someone else? If someone else, this is a no no. The prescription is for Mom. If they are not used by her passing, the Nurse is to remove all medication and see that it is disposed of properly. If you are talking about Mom using them eventually, why would the Nurse keep them elsewhere till needed? If they aren't being used for now, put them in a cabinet.

Putting a sticker on the pill bottle is not going to solve the problem. The Nurse will probably still count the pills. What I suggest, is the next time they order them ask if you can have blister packs. Then they see how many pills are left. Do you keep a record of the pills you give Mom? Name of pill, amount, time given and initial. If not, I would. If the Nurse gives Mom pills, she should be noting it to.
Here is a form. First one on the left is a good one.
https://www.freeprintablemedicalforms.com/preview/Medication_Log

I am assuming you keep a record because they have to know how many pills have been taken to know what is left in the bottle. Duh right.

Before I ask for new aides I would ask what their job entitles. What are the procedures. I may tell the supervisor that you feel they are not respectful to your house. The dripping water on the rug, putting a decorative throw pillow on a wet spot that may be pee. Yes OCD me would not like this either. They are not suppose to make more work for you. Like the towels. Is there a door in Moms area. My bathroom is small so each bedroom has a towel rack that goes over the door. Put one of them up and ask the aides to hang towel there. Or use a clothes drying rack.

Writing this reminded me of when Mom had an accident at the AL. I went in and her sheets had not been stripped. The aide had thrown Moms comforter over the sheets like she was covering up the mess. Yes, it was soiled too. I did Moms laundry so I took them home but I did mention it to someone. I was told later that aide should have stripped the bed and took the sheets to the laundry to wash them.

I really do sympathize with you. But sometimes you just have to let things go. I would have changed Hospices weeks ago.





Writing all this reminded
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gdaughter Aug 2021
I responded earlier with thanks for your understanding. ANd that I am considering a change of hospice providers so the change in aides would be moot, but as I said as well, I would very much miss the one nurse who I am fond of. Though this all for mom's best interests, not necessarily mine. They are making more work and stress for me although I am sure some here would be quick to point out I am generating my own stress and need to let it go as you said. But some of this is just too unacceptable and lacks respect and dignity for my mother. If I wanted her to be treated like a meaningless piece of crap, we could have stuck her in nursing home. The aides by the way ONLY USE A TOWEL ONCE and consider it soiled...often it is not, unless they have wiped the excess barrier cream which is pink onto the linens. But see, I have let that go. I throw them in the wash and if it comes out it comes out, if not, maybe next time. I am done scrubbing what mess they have generated.
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Who’s taking care of YOU?

Has your professional position taught you how to decide that living at home safely as long as possible may have been exceeded in your own situation?

You must be totally exhausted. You are asking more than I would ask, but your priorities are vastly different from mine. My mother had a short bob as soon as she went into residential care and everyone told her she looked 25 years younger, and never again did we consider shoulder length hair.

If my mother had had a problem with her heel, and in fact she had a pressure ulcer that was the size of the Grand Canyon), and if it was being cared for correctly, I wouldn’t have cared if it was the Parish Priest, the mailman, or ME that was holding up the leg, as long as we’d all washed our hands before we did it.

I don’t think it’s necessary for you to change aides, but can anyone here possibly convince you to give yourself a break? Have you ever had a client that reminded you of yourself? What did you tell them? Did they listen?
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gdaughter Aug 2021
I had a discussion with a friend last night who has had some interactions with her husband's team (he has since passed of lewy body dementia) and has a particularly negative feeling in re to social workers. I have never provided care to anyone in my 30 years the way these recent individuals have.
I only wrote the latest question to gain knowledge from others who have been in similar situtations not to be told how I should feel and react. SHE IS MY MOTHER and I will tend to her with the same sensitivities and concerns I would have for anyone including myself. I am very sorry I posted and will be leaving this forum shortly. Now i know why so many others have done the same. I have a right to object to the uncaring social worker assisting and in fact it was her attitude that I objected to most. But when all of these issues are tallied up more than anything I increasingly think it's time to dump this hospice care provider even though it will sadly mean losing the good nurse we have had.
I hope you get to experience the care you claim you wouldn't mind.
ANd no, I have not had a client that reminded me of myself. I have had the pleasure of working with many family members who appreciate my understanding, empathy and sharing of higher standards. They know our agency's reputation and that they can trust us to provide good care even if it is not personal care or hands on but housekeeping.
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If you are worried about cleaning out the hairbrush you obviously have too much time on your hands. You might try to redirect you "efforts" to explaining what you would like done for your mother instead of focusing on something so minor. Is there a reason you could not assist in the monumental hairbrush cleaning? Had you told the caregiver that your mom doesn't like ponytails or that you would prefer she blow dry your mom's hair instead of letting it air dry?

Also, exactly why are you annoyed that a social worker assisted the nurse in rebandaging your mother's dressings? Although these people are professional caregivers, they are human and may need an assist.
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gdaughter Aug 2021
I am a clean person and I hardly have too much time on my hands. Seeing a visibly filthy hair brush when personal care IS THEIR ASSIGNMENT doesn't seem like an overstretch of their responsiblilites, but then dirt doesn't seem to bother you at all. NO caregiver can possibly tell any aides every damn detail (as if they'd care) about their loved ones preferences HOWEVER THEY could be sensitive enough to ASK family that is in the vicinity or reachable before taking it upon themselves to do that. Not to mention with a blow dryer present, blowing it dry to begin with. ANd not that it's any of your damn business, I do not think a social worker should be hands on in the age of covid or otherwise, I have no problem in the nurse being given a hand and have done so myself, but I AM FAMILY. The social worker should stick to her assigned tasks god only knows what they are. She certainly didn't inquire as to how me or the family was doing with the caregiving or attempt to offer any help.
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I mean no offense, but it sounds like you’re a micromanager. It’s true, nobody can look after your mom better than you, but you admitted that you were trying to get work done, and the caregivers were obviously trying to not involve you and give you a break.

If you want things done a certain way, perhaps create some helpful lists, therefore you won’t be bothered, and things will be done to your very high standard.

They’re just human, and trying to be helpful. I mean, my caregiver rearranged my MIL’s furniture when she cleaned it on Monday and I had to spend half an hour putting everything back to rights, but that’s ok. She just didn’t understand that we have it this way for a reason.

I would try be PROACTIVE and make some helpful lists, rather than being REACTIVE and breaking in new aids that I doubt you would like better.

Best of luck!!!
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gdaughter Aug 2021
I don't think I am I micro manager but perhaps more attentive to details and perfectionistic/sensitive. ANd I still think policies and procedures are very poorly explained if at all by this hospice. Expectations. Perhaps the list would be helpful and I could put it in a sheet protector and hang it visibly? I'd like to think new aides would be better. These aides made no attempt to establish rapport, though I sense they are trying a wee bit harder to keep her covered as is appropriate. Thank you for the idea.
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Why have the aides if you're going to question everything they do? Aren't you glad they're there to help you?

Are they mean to your mom or you? If not, what's the big deal?

Your mom has Dementia. She probably could care less how her hair is done as long as it is nice and clean, Isn't that what is important?

Relax and let the Aides do the job they're getting paid to do.
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gdaughter Aug 2021
BUT they are NOT helping me except in one way for which I am very grateful. I am NOT questioning everything they do even if it seems that way. One minute this is the criticism and the next person blames me for not speaking out at the time to make our wishes known.
I don't care if you think my mother with dementia has awareness of things or not. I CARE DAMMIT, and I will not have her treated with the disrespect and lack of concern these aides continue to show toward her, her privacy and her home. The aides are NOT doing the job they're getting paid to do, that's MY POINT. I am working too hard and shouldn't have to, and would not have to if they would. They don't care. I can only imagine the condition of their own homes the way ours is disregarded. I am tired of finding discreet ways to make things better...for THEM and their work habits/behaviors. I have further investigating to do, but if I learn that with an MD's order we can arrange and be compensated with hiring privately, I will do so. Hospice has helped with one task, and otherwise has been nothing but a pain and hassle. At least with this one and this set of aides.
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She really has had a lot of problems with aides. Not covering her mother as they bathed her was a big one. Asked to throw wet towels in the laundry room right down the hall instead of the floor. Water on her rug when they bathe. They seem to have no respect for her house.

I think she has a right to a point to ask that wet towels be thrown in a laundry room just up the hall.
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gdaughter Aug 2021
Many thanks for your ability to grasp the bigger picture and the context. I feel a deep obligation and desire to be protective of my family members in spite of the antagonistic relationship we have had through the years. BTW, the towel issue was resolved as some suggested, with my getting a large plastic basket/hamper. Came in very handy when going to the laundromat when the washer gave up.
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