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Roles - mom, me, facility caregivers?
Posted: Wednesday, January 9, 2019 9:08 AM
Joined: 1/5/2019
Posts: 46

Mom is recently placed (last 3 months) full-time in an Adult Family Home.  She is a higher functioning with VD -- so she is aware when she doesn't get her pills on time, the food she is supposed to eat, etc.

I am her sole POAs and the only one of the family involved in her care (longer story, but she and I are both okay with that -- for now at least.)

So she will complain to me and the caregivers.  She has stopped talking to the caregivers because she does not trust them to take care of the situation nor well.  I do realize that not 100% of what Mom is relaying is actual fact -- but the overall issues are real as I've experienced some myself while I visit.

So she complains to me.  I talked to the caregivers and the three way cycle/tug-of-war has begun.

My question: what are the roles each should play in her care?  Meaning, what is mom's role? What is my role? What are the caregivers role?  


D in law
Posted: Wednesday, January 9, 2019 9:47 AM
Joined: 4/24/2017
Posts: 513

Transitions take time.  Your Mom has only been there a short time and is adjusting.  You and the caregivers role is to make her feel safe while she gets acclimated to her new environment.  This takes time, and takes communication between you and the caregivers-without being too overbearing (I know that's hard when it's your Mom!) 

Should you see her needs are not being met in meeting with the staff and watching what goes on when you are there, then perhaps this particular setting is not the best place for Mom.

Good luck to you.

Posted: Wednesday, January 9, 2019 10:19 AM
Joined: 1/17/2016
Posts: 873

My mom was in this position too with VD and in an assisted living community.  I do know some of the communities have stricter rules on meds, etc. because they have to document everything.  By the way, my mom drove some of the caregivers nuts in her first community as she wanted to know what each pill was for.  She knew she needed them, but was more comfortable when they could tell her what she was taking.  Sometimes I think she just wanted to test that they know what they were giving :--).

Either way, when your mom is explaining to you what is or isn't going on, I suggest you simply tell her that you have it handled.  Try to keep these conversations shorter and redirect her to the weather, television shows, etc.  It is easy to get into the loop of trying to fix things when lots of times there is nothing to fix.  If mom looks clean, well fed and mostly stable then all is well.  Again, if I could go back in time, I would have said, "yep mom, I got you covered."  This will leave you with more positive energy for what may be coming in the future.

Posted: Wednesday, January 9, 2019 11:21 AM
Joined: 9/7/2017
Posts: 788

maybe you can give us an idea of the types of issues she complains about?  I think it kind of depends.
caregiving daughter
Posted: Wednesday, January 9, 2019 2:43 PM
Joined: 11/27/2012
Posts: 2022

Caregivers role in a dementia facility are to keep the resident clean, fed, safe, and entertained. The latter with help from either a formal activities person or for a small home, the owner. They should also be able to identify issues promptly that require clinical support. Clinical or behavior issues should be communicated to family asap. Your role is to be the advocate for your mom in every single situation. This means ensuring the caregivers do their roles to the fullest and respond if folks are not doing their jobs. Your mom should be able to come to you for anything and everything. The tough part is you have to distinguish which concerns to act on and which you do not. For example, when my mom said that her neighbor down the hall stretched her neck out the window and brought her head back into the building into her room, I listened and then changed the subject. Wild yes; however, my mother could still accurately recount a squabble among residents or another residents taking her things. I always tried to bring smaller items to the caregivers directly. Repeated concerns or larger issues I would bring to the attention of the social worker that was assigned to our family. Once or twice in several years, I did need to bring an issue to an administrator. I never included my mother in any of those direct conversations. Regular care meetings were scheduled (I think every three months); however, I never included my mom. It would have been okay if she was there. It just would have been awkward and out of place to talk about her weight loss or behavior issues in front of her. She thought absolutely nothing was wrong with her.
Posted: Saturday, January 12, 2019 11:53 AM
Joined: 6/24/2012
Posts: 291

My mom has no official dx because she will not cooperate with the neurologist.  She also will challenge the nurses about her meds to the point that she has grabbed the meds keys and barricaded herself in her room with furniture against the door.  She often makes them sign a paper with their phone number in case she needs to call them later about her meds.  She does not ever use her life alert button.  She has no idea that she could get help that way even though they go through as part of the routine every week twice a week.   And at the doctor's office she will confront him to tell him that he is making things up because she no longer takes medications.  (She does not see bottles on the counter because they are locked up in her med box... so no bottles no meds).   My role is advocate for my mom when she needs it.  But the staff need to navigate her ways and and if I am too involved mom will never let go and trust them.  So these periods of issues arise but don't last for long. But they do recur.   Remember that the staff at these places change like the seasons.  These people are overworked, underpaid and at the mercy of ridiculous schedule changes.  This affects our loved ones because the continuity that would help them just is not there.  Full time hours at these facilities are rare so these staff members are working other jobs and can't just 'fill in' when someone at mom's place calls out.  It's a very imperfect system.  

For about 1.5 years I volunteered as an Ombudsman.  My role was to represent the resident and his/her concerns.  The nursing home that I visited was really excellent, but staffing was the hardest part for them and it directly affects the residents.  All of these places put bonus systems in place for 100% attendance and other ways to keep staffing levels stable.  But, it is very hard.  

Then there is the division of labor issue.  There is nursing, aids, and housekeeping.  So if the nurse sees that my mom's bathroom is a disaster she can't clean it.  I get it.  But could she call housekeeping?  She could.  But does she? And Can they come?  sometimes.  If the aids see that she is anxious can they call nursing?  Yes, they can.  But sometimes they are 'on the clock' and can't check back on her.  And if housekeeping comes to mom's room while she is in there, she will scream at them to leave or sometimes politely tell them that her room is fine and that she will clean it herself.  Can they come back when she is out of the room?  Yes and they do.  but sometimes they can't.  

I liken all of this to leaving your child off at school.  I remember my child's principal telling me once, that you need to fill in the gaps that he/she will not get at school.  So if that teacher was not covering a part of the course that year... you should make sure to do it.  sounds insulting, but she was really just leveling with me and being realistic.  So if your mom needs something and it isn't happening and the place is overwhelmed... then we need to figure it out.  Remember, it will never be perfect.  But I strongly believe that it takes all of us as a team and letting the staff know how much you value what they do goes a really long way.  

I hope that in some way this helps you figure it all out.    


Posted: Saturday, January 12, 2019 7:18 PM
Joined: 1/5/2019
Posts: 46

Thanks to all for your comments, guidance, and advice.

Yes, it's a hard adjustment for all.  One of the reasons I moved mom was so she could be closer to me, the new facility will do Medicare after two years private pay, but also I picked a smaller place for her since she wasn't getting the attention she needed at the other places.  Now I'm finding out that even though it's smaller, it's much better, but still not great.  

It's so hard because the costs are exorbatant and one would think the care would be better given the cost -- so unfortunately I am saddened by this reality.

She is fed (although she doesn't like the food, they have a hard time getting her diet restrictions right, and frankly I wouldn't want to eat some of it either -- I realize the caregivers are chefs, but it just doesn't look yummy.)  She is bathed and she has clothes -- so her basic safety is taken care of.

And yes the caregivers change out which distresses mom -- she doesn't feel like she has stability and it overwhelms her.

I wish I could use the line, "I've got it covered" -- but since she's still in middle stages of Dementia she wants to know the details and will remember and ask again.  Even when I say "I'm working on it" she asks what I'm doing and who I'm talking to about it.  I'm fine with that as I want to make her as comfortable as possible.  

I have been getting better at distracting her, I agree that seems to be the key.  I've also found a simple "I'm sorry" works well.

I have an in person meeting with the administrators this week (to continue to talk about all of this in a polite way and ask about the emergency preparedness plan.)

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