My mother is approved to receive in-home assistance from an agency 8 hours a day Mon - Fri. As she is deaf and recently survived a stroke. For months, I have stayed in her home to assist with appointments and other needs. I am her child, advocate, and assist with medical decisions, she is more comfortable with me present for these things. My mother also has lost a number of family members. Those surviving tend to announce their availability early mornings to spend quality time with my mother, which happens so sporadically. On the medical side of things, my mother has a number of specialists who schedule her for various labs, routine, urgent, and other visits. As several caregivers have quit in the past on short notice and due to unknown reasons, I frequently have to put my entire life aside to re-establish my mother's continuity of care accompany her to various intake appointments, and correct information provided to clinicians by past non-skilled caregivers attempting to speak on my mother's behalf.
This week, my mother had several urgent appointments and labs. The agency was made aware that my mother is not comfortable with the aides in her appointments. Also, the appointments usually occur hours before the aide is supposed to begin her shift. The agency was notified.
A relative (that my mother hasn't seen in years- HER SISTER) learned that my mother was ill and called to spend a day with her. Again, hours before the shift, I notified the agency. I also text the caregiver each time.
I've suspected this of her in the past, but the aide seems to blatantly ignore these messages to show up at the home anyhow.
I've asked the agency for a pause in service during my extended stay. They said it would be more difficult to "re-start" services, so allow a caregiver to come and just sit all day with nothing to do. I should also schedule my mother's medical care around the caregivers shift, who is not needed at the moment.
I'm frequently given a spiel about how everything my mother does requires advance notice. The caregiver should be there for social visits (though I or her adult relatives are present). I should also take the caregiver along for appointments, which should only be scheduled within this woman's shift.
My mother is essentially a prisoner in her home because of this service that refuses all flexibility for their client. This is completely neglecting the number of previous aides who called out without notice or quit. Leaving me with trying to pick up the pieces they've left out of my mother's medical info, appointments, service changes, or otherwise.
The aide even attempted to discourage my mother from receiving outpatient rehab because she can teach my mom exercises on YouTube. Or vitamins to control medical ailments instead of prescriptions AFTER the number of years it took to get my mother medication compliant. Or tells my mother to not leave her home to stay elsewhere when repairs are needed (for the hours, you see). Or forces my mom to eat oatmeal before getting her to the ER for actual treatments.
Now the agency is saying MY actions are placing them out of compliance with insurance. Then accused me of wasting the employees gas when they didn't pass along the messages or the aide ignored my text. Insurance doesn't know what the hell the agency is talking about.
And I'm stressed. The hell. Out. They are to help, not hinder and confuse.
I also feel like my mother is ripe for intimidation after staying with her over months and observing her dynamic with caregivers. Or will not hear when bad info is provided.
I HATE the idea that I have to schedule for the aide to time off months ahead when her stroke is fairly recent. If their aides were more responsible and respected my mother's needs, I wouldn't be so overwhelmed. Especially since the agency is adding more (ignored) points of contact to my plate.
I feel like I'm in crazyville. What the hell do I do?
Then, give us an update on how it's going.
I remember a member complaining about an agency she had. She made suggestions and they ignored her. Her mother was being cared for in the members home. Thevmother was bedridden. When they bathed her in bed, the aides got water all over the carpet. Any suggestions the member made were ignored. The carpet got ruined. Part of the problem was there was a language barrier.
Fire this agency now. And report them to your State Ombudsman. You may consider an Assisted Living for Mom. The law does not allow for facilties to do what these aides are doing. Their job discription may say what their job entails but if the client does not what that part of the service they can turn it down.
So sorry you have had such a bad experience.
Cooking for my mother is a strong "no". They have an idea of what and how they should cook for her, and ignore all her digestive issues. Laundry? They disregarded my mother insisting that they leave the laundry for her, because they wash and dry everything on HOT. This includes washing mop heads along with towels and wash cloths. Theyve even ruined her clothing because they feel separating laundry is a waste. I'm not sure if their culture manufactures their clothing from the same materials, but my mother's ask for at least cold water washes and gentle drying is considered silly. They also throw things in shopping carts and insist upon what my mother should and should not buy, even though they've been told she will never eat these items. Forcing her to eat what they feel is best...things she would never eat in her life...I'll say not even the skilled employees of the inpatient hospital refused to do that.
The last straw was the aides making assumptions and suggestions on our entire family dynamic to the point of insult though they have only been with us for a few weeks. False, delusional, and confabulated.
The agency pay is abysmal, so they are free to leave for usually factory employment, leaving my mother without services for weeks last minute (with no complaints of insurance compliance), but pressure the hell out of us when someone takes the shift. I should have yet another avenue of advocacy and multiple points of contact added onto my responsibilities.
I want COMPETENT help. I came here to see if the agency was dispatching aides at random,but seems like they are more interested in legalizing their employees and ensuring they receive full pay.
I can't manage my mother, her healthcare, her administrative dealings while trying to accommodate this agency and their caregivers getting away with throwing extra items in shopping carts that my mother hasn't even asked for.
I won't even get started on the financial exploitation by shopping for themselves instead of assisting my mother through the store. Yet we've had several in the past changing my mother's utility bills, presenting receipts of bras and glasses purchased that the aides have decided is the price my mother has to pay to compensate for gasoline used for a less than 3 mile transport.
These things are beyond their range, and I was seeking advice...not lectures on separating.
And before it's mentioned, I'm hands off during these times. I'm not even present. Yet, my mother feels uncomfortable refusing them because she's uncomfortable with confronting someone who may not leave her home after a disagreement.
I'm glad none of you have had this experience. Your worlds sound so perfect and accommodating. If you have never had experience as a CODA, please hug your parents.
I was seeking help. I appreciate those understanding how crazy this predicament actually is.
I will stick with Reddit.
What you describe is similar to what I went through as my mother's sole caregiver when I finally hired in-home help. Unless you've experienced this mess as an adult child, it's hard to relate. Yes, it seems fortunate to have this care, but you wouldn't have brought it in unless the situation was very difficult, right?
When problems arose for me--someone being cruel to my mom, another repeatedly feeding my mom when she had major bowel issues for which I, along with an aide from the very same agency KNEW to not give her certain foods, etc.--I stuck with the agency nonetheless. They were wonderful people overall. I just gritted my teeth when the aides I didn't like showed up, and I welcomed the others like they were my saviors, because that's what it felt like to me in my exhausted, spun-out state. Eventually, I learned how to anticipate the agency's scheduling patterns and knew which aides usually signed up for which day (or rarely, night) shifts and was able to cancel those shifts well in advance, politely and without saying why. The fact that I cancelled and took on all the day's or night's work alone, rather than wrangle with certain people, is probably something you understand.
As with all caregiving, I had to let go of wanting it to unfold fully how I wanted it to go. On the plus side, I learned excellent care tips every single day from the really helpful aides. So many who do this are truly great at their jobs. I'll never forget a few of them. I hope you have some of those quality people. They could balance out the hassles you are dealing with regarding the other helpers and with the system of in-home care itself, in general.
No aide is randomly assigned to any case without a clear set of hours and a viable care plan. Aides are there for personal care, medication reminders and light housework cleaning the areas the patient uses including bedroom, bathroom, and living area. If meal prep is on the care plan, it will be on the care plan. Aides do not administer medications or change a client's care plans offering unsolicited advice.
A registered nurse will do the admittance, assessment and other professional tasks.
It doesn't sound like you are in the United States since aides must follow a scope of practice set by the Department of Health and the Board of Nursing.
This is unusual.
I brought the caregiver along when my mother had doctors' appointments because I did not want anyone alone in the house. Since my mother was unsteady, I felt the travel logistics were more manageable with another person with me.
When my mother had visitors the aide stayed in the kitchen while my mother visited her guests in the living room. If there were some chores to do in the kitchen they would take care of it. And I was fine if they were on their cell phones if there was down time.
Urgent appointments beginning before an aide's shift should be understood by the agency.
For conditions requiring specialists, if the office calls to say they have suddenly availability for my mother the next morning (instead of waiting three months), I will definitely do that. I can't see anyone subjecting their parents to delayed care just to convenience an aide's schedule.
And privacy for a social day with her family shouldnt involve an agency reprimand. In fact, my mother's insurance provider says those are expected. Especially since those are not often at all.
The suggestion from insurance is to consider changing agencies which I will certainly look into.
I personally would want to go to doctors with Mom. The next best think is a portal. I think this agency is over stepping and I would be calling the insurance company to ask about their criteria. An aide does not tell the Client what to do. If Mom does not want oatmeal, she does not have to eat it. If she does not want an aide in the doctors office with her, that is her right and her doctor needs to honor that. There are HIPAA laws and its her right not to have the aide present. And visitors, they should be able to come and go. While you are there or visitors, the aide can leave the room and find things to do, like laundry, some light cleaning like the kitchen, the bathroom, her bedroom. Or just take advantage of having a break if the agency says they must be there.
This is your Mothers home. Aides are there to help her not manage her life like this. By law, if Mom does not want to do something, she does not need to.
Just my opinion, but maybe its time for Mom to go to an AL. She will get her care but have freedom. Visitors can come anytime. There will be activities and outtings.
I must first say how very blessed your mother is to be able to receive in-home care 5 days a week and 8 hours a day. That is almost unheard of these days and shouldn't be taken for granted. Instead of fighting the system, why don't you embrace this gift your mother's been given and do everything in your power to make it work for all involved.
You can of course set the ground rules for those who are caring for your mother, but then just allow them to do their job while you take some time away to rest and destress, as it's more than obvious that you're under a lot of stress.
I know and understand that you want only the best for your mother, but sometimes just "good enough" has to do if it keeps us from losing our sanity.
And since the aides aren't there on the weekends, that's a perfect time for friends and family to come spend time with your mother if they want without disrupting her time with the aides.
To me it seems like you're making this situation more difficult than it has to be, so I hope that you'll take some deep breaths and remind yourself how blessed you are that you still have your mother and that she is able to receive more in-home care than most folks do.
And might I suggest that during the week while the aides are there that you step away and do something for yourself that you enjoy so you can be the very best version of yourself for all involved, including yourself.
God bless you.
My bedridden MIL was in LTC in an excellent but affordable faith-based facility on Medicaid for 7 years. Are you able to consider facility care for your Mom? If not, why not?
The company exists to meet the client's needs and requests (to the point that they are able). You, or mom, or whoever hired this company should change the schedule to better meet her needs, or cancel services.
Just because you are there, or a family member drops by to spend a day, does not negate the services of in-home care. It is not assumed that the family member will provide cares for that day. And be considerate; no one likes last minute changes or cancellations regarding their work schedule.
If you don't like these aides, don't agree with how they are providing care, or don't find the schedule agreeable, then cancel the service. But when you do need the services of an in-home caregiver, it will probably not be easy for you to get what you want, because you are a difficult client. The home care agency has LOTS of clients. They can pick and choose. They will not acquiesce to your detailed and difficult last-minute arrangements.
I know you feel overwhelmed. Make a decision right now. Does your mother need in-home help? What does she need help with? Does she currently have caregivers she likes and are effective? If she needs help, and you have been lucky enough to find someone who can provide the help she needs, then keep them on and find a schedule that works for you. It may not be 40 hours a week.
Then, schedule medical appointments on days and times when the caregiver is not scheduled.
Are you providing care for your mother? I don't know why it's a problem for the caregiver to show up when you are there. If you are providing care and don't need extra help, then dismiss the service.
Of course, caregivers will try and promote their services and get as many stable working hours as they can. Wouldn't you? Just be fair to everyone and decide a workable schedule, and YOU keep to the schedule. They don't need to work 40 hours a week if you don't need that. But, don't keep changing it every week. No one's going to want to work for you.
If you are there during the caregiver's scheduled shift - stay out of the way! You don't need to micromanage (unless they do nothing). Your criticism of their methods is not welcome. Take this time to do something for yourself.
And neglect that they are unskilled, do not receive information from the agency about her conditions individualized needs, and that the aides actually refuse to follow the actual plan of care...
And learn that meds have been changed because the aide says "she doesn't have depression", "she can't walk at all", "she's not having indigestion", "shes not getting stronger", while keeping her on the sofa all day... Stay out of the way of that..
I should see the panic in the aides face when my mother has a medical exam resulting in the need for a higher level of physical therapy because she is stable now, and not respond to the aide as she states: "What about my job? If she is getting better, I can't get hours".
I should just...stay out of the way and NOT suspect the manufacturing of job security instead of my mother's best interests?
And allow you guys to respond as if we are frequently calling the caregivers off, when my issue was the agency freaking out on the occasions that my mother wants a few hours for privacy. They couldn't even back off when she was in the hospital for 2 months.
I had insurance intervene at that point. The agency was told to back off. This behavior continues.
Per your words, none of this should be reported
Got it.
Thanks so much for your wisdom.
I just don't have a good gut feeling about this agency anymore.
It truly feels as if they are discouraging opportunities for my mother to rehabilitate or engage socially.
I'm fine stepping aside for those whom actually assist my mother. I just want to ensure my mother is safe and happy as well.
Hopefully I'll have more options for different agencies by the end of the week.