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?
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?
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.
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.
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