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Diplomacy vs. Efficacy: My mom's decline since admission to a care facility
pearlhansen
Posted: Thursday, March 14, 2019 9:48 AM
Joined: 11/18/2018
Posts: 93


My mom has drastically declined since moving into a care facility 6 weeks ago. She has stopped eating and drinking, has been refusing care, and has lost interest in life. I think a major reason is that the staff routinely has failed to implement my basic care requests - such as opening one bottle of coconut water per day for my mom, as she can't open the bottles herself. I supply the coconut water, becuase my mom hates regular water. I think she became severely dehydrated, which led to her becoming delirious. I took a desperately needed vacation last week, and all hell broke loose. My mom started wandering into other residents' rooms, holding them hostage, and became combative to staff, going so far as to throw her walker at them. I had repeatedly requested - verbally and in writing - that staff incorporate the coconut water into my mohter's routine. Why did I have to keep driving over to the facilty (5 hours round trip) to get her coconut water bottles open, and why didn't the staff take care of it? I walk a fine line of not alienating or pissing off the staff, vs. ensuring that they properly care for my mom. Over the past two days since returning from vacation, I've been waking up in the wee hours of the morning, very frightened that my mom is going to die, not becuase it's her time, but because of what is essentially neglect at the facility. It seems they want to take a cookie cutter approach to residents, offering their standard care but not customizing it for a particular resident. I have a care conference in person with staff tomorrow, but I don't even know if my mom will make it to tomorrow. And even if she does, I have had conferecnes with them before, and still things don't get implemented. It's almost more work for me to micromanage my mom's care at the facility, than it is to take care of her myself at home. I thought this facility would be different, and it is probalby still better than most nursing homes my mom has been in. But it still seems that I need to be my mom's primary caregiver - I can't have her in a "care" facility and be released of the burden of managing all aspects of her care, and get back to my own life. I am all torn up about whether I didn't push hard enough for them to get her the coconut water, before I went on vacation. But I felt that if I pushed more aggressively than I did (I repeatedly requested in writing and verbally), I would lose their engagement entirely. And my mom is living there, with them, 24/7. I want them to like her, care about her, and want to support her. I don't want them acting out on her becuase they are pissed at me. It's a very fine line. How have other people managed situations like this?
Mimi S.
Posted: Thursday, March 14, 2019 10:05 AM
Joined: 11/29/2011
Posts: 6938


Pearl,
Opening a bottle each morning seems like a simple request. What is the institutions response? Being currently a resident in an ALF, I realize that the caregiver assigned to a certain section varies daily but there is a supervisor.

 

Is your mom in Memory Care? When you paced your mom what did staff say about the specific requests you made for her care?

 

Sounds as though staff could have used Feil's Validation Method.
jfkoc
Posted: Thursday, March 14, 2019 1:47 PM
Joined: 12/4/2011
Posts: 16459


I do not think you should have to walk a thin line at all. I am relieved that my husband did well at home because it would have run me ragged having him anywhere in this town.
citydock2000
Posted: Thursday, March 14, 2019 1:58 PM
Joined: 9/7/2017
Posts: 724


This is a perfectly reasonable request.  I would start calling every day when it should be done and asking if it was done.  And when you are on site, ask them to pull up the chart that shows that it was done and when it was done. Place notes on her door.  Email them daily. 

Disconnects between the management staff, who you make the request to, and the line staff, who carry out the requests, are common - there often aren't the mechanisms in place to prompt these types out-of-the-norm requests.  Not excusing - just saying it's not uncommon, but that you should be able to expect it.  We had a similar situation with thickened liquids, which you think they would be able to cover because of how common it is. 

 


zauberflote
Posted: Thursday, March 14, 2019 3:57 PM
Joined: 10/24/2018
Posts: 67


Oh boy pearlhansen this is a topic I could go on about all day. My mom has not come to such serious harm as yours has, and it’s horrible that your mother is the unwitting victim. Yes, open one bottle is such a simple instruction! You would think they could get that right. I am a somewhat combative person when in Mama Bear mode, and my diplomacy filters fly out the window. 

Things we’ve tried to get implemented for Mom: keep her commode chair clean. (when she moved in the toilet ROCKED) and was about 4” too low for anybody over, say, 50); flush the toilet because the commode chair completely hides the flush handle; keep wanderers out of her room (there was one in particular who was a bulldozer regarding where in the room he wanted to go, was most likely the one using her toilet, and was the one found nearly asleep in her bed, by me, after we’d eaten a meal in the family dining room; get a locking door handle to prevent that; give her cranberry juice in the morning and afternoon (to supplement fluids, rather than what they selected which was to replace her milk and coffee at meals with cranberry koolaid; maybe that’s the end of that list. Give real cranberry juice. Put it in a cup! She has never seen a juicebox and has zero idea how to use one! After all, she’s only been there 5.5 months. 

Management went thriugh a drastic overhaul of itself by corporate on Jan 1, and things are beginning to look up some. They now flush her toilet 2-3 times daily and keep the commode a good bit cleaner. But commode seats have an underside, and you’d think the cleaning staff would have been taught that!!! Mom has learned to deal with the intruders. The original offender did not come back for a ling time after I sent management a long video I’d taken from inside the bathroom. The locked door handle was “on order” by interim Director His Iwn Self on about January 2.....2.5 months... but Mom has gotten good at “entertaining”. She’s one of only a few on walkers, and 20 years older than the median age, so taking a 170lb man by the hand and leading him out without falling is not in her repertoire. I buy the cranberry juice. There is a note on the stash that informs carers to put the blasted juice in a cup for crying out loud. (Well, not quite like that). 

So... I think diplomacy will get you only a very short distance. How did your meeting go? Having to follow/mop up behind people whose nice salaries you are paying is just inexcusable. 

My 2 cents’ rant...


pearlhansen
Posted: Friday, March 15, 2019 12:26 AM
Joined: 11/18/2018
Posts: 93


Thanks for validating/giving me "permission" to not be diplomatic. Staff says yes, agrees with me, promises this that and the other thing, and it doesn't happen. I fear that I may not have stepped up soon enough with a more assertive approach. I fear that my mom may die as a consequence. Putting notes up myself is an amazing idea. I can't believe I didn't think of that. Thank you. I think that, among other things, I fear they will say something along the lines of, "well if you don't like it here, take her somehwere else." I couldn't find anywhere else and have no reason to believe anywhere else will be any better. I can't bring her back home - or can I? I am just exhausted. Also over the past two months, I went through a traumatic breakup, and after 9 years of remaining stable, the cancer grew, in those two months alone. I'm in a vulnerable place right now, quite overwhelmed, lots going on in addition to this - just a really rough patch at the moment. Bringing my mom back here will bring the shadows of my sister and father back here, and all the childhood abuse buttons will be pushed again. Plus I am out of money. I took out a big fat home equity loan, and I'm at the end of it, and can't borrow any more - as in, they won't let me. I don't know how to take care of myself and take care of my mom, when people don't step up and do their jobs. Anyhow, I'm embracing this idea of being a pain in the a** and calling every day and making sure stuff is done. @zauberflote What your mom went through is nuts! It's unbelievable what goes on in care facilities. We should be able to hand over our loved ones and just be able to be theri loved ones, not have to be micromanaging care day in and day out. If anyone is open to praying for my strength at the meeting tomorrow, I would appreciate it very much. It can feel intimidating and exhausting to have to face down a bunch of staff and be the only one advocating for my mom's care. Oh also, about the unit, she's in hospice. That's how she got in there. Maybe I should transfer her to memory care. She doesn't want to go to the hospital and have invasive procedures again, but I do wonder if they think of her in terms of "she came here to die," and if they are not giving her proper care because of that, like "it doesn't matter anyhow"?
Victoria2020
Posted: Friday, March 15, 2019 3:26 AM
Joined: 9/21/2017
Posts: 338


I 'd hang a sign about the water , ask THEM the best quickest way for you to be assured ,living a 5 hr drive away, it is done daily and THEN focus on  you. Address your health and money issues , they are important. Very.

 

{Cranberry kool aid instead of the real stuff, wow, that will help with UTIs. Tapes a rib eye picture to a Big Mac box , yummy!  Tapes a picture of Pierce Brosnan to....}


Iamnumberfour
Posted: Friday, March 15, 2019 6:31 AM
Joined: 2/29/2016
Posts: 1264


My mom was in a SNF for rehab after a fall. It was challenging and required the carrot-and-stick approach. When she was admitted, I brought a detailed plan of care with me that explained her normal routine and her injury; I am sure that was put in the chart to be never seen again. I made it clear at the outset that there were to be no changes in medication without discussing them with me. Within 24 hours, they had made some very significant changes. Brother was there that morning, told them in no uncertain terms to stop the new orders, and said 'you had better do it now. I am the good cop. You don't want my sister 'Iam' to have to address this.'  A day or two later, I found her dressed with the sling for her broken arm tossed on the bed. This necessitated another conversation and I made several laminated signs with words and picture showing a broken arm. 

I tried as much as possible to be pleasant and engaging, learn names, ask about workloads, families, etc. I brought candy and coffee. Workers in these facilities mostly do care and mean well but are overworked and understaffed...but that is no excuse for incompetence or gross disregard for your instructions. So when I had to be, I was very firm.

I don't know why opening a bottle of coconut water is so hard; I think that people in these facilities get very wed to their routines. I like the idea of a sign to remind the caregivers.

You say that your mom has declined drastically since moving to the facility. A period of adjustment is normal. She may also be experiencing some depression over the change in circumstances, perhaps even delirium from the change in routine. Since this is an acute change, have you asked to have her evaluated for a urinary tract infection? UTIs can be silent in the elderly, except for mental status changes, and dehydration can certainly contribute.

If your mother is otherwise physically healthy, perhaps the MC unit would be a better fit. Staffing ratios should be better, and the staff should have training on how to engage her and head off problem behavior. I recall from your previous posts that finding the right place was difficult, but I wonder if your quality of life would be better if you had her in a facility that was closer to you.

Yes, we should be able to rely on the facility and revert to being family members, but vigilance is necessary. In particular, regular family visits are essential to show that the family is aware, involved, and advocating.


MimiMinder
Posted: Friday, March 15, 2019 6:54 AM
Joined: 4/23/2018
Posts: 99


You mentioned that your mother has declined in the 6 weeks she has been in the care center and later indicated she is in hospice. I assumed that hospice providers would want to do everything possible to bring comfort to those in their care - and by extension, their family members. Unscrewing a bottle of coconut water each day seems like a minor thing. Keeps her hydrated. Keeps you happy. A win-win that takes no time at all. 

Maybe the facility would be agreeable to a CWC (Coconut Water Chart). The first care partner who interacts with your mother each day could open the bottle and initial it. Care facilities pass pills, help residents put on support stockings and take showers, and other things - like opening bottles! Your request seems right in line with doing what the resident needs help with. 

If a hospice placement was the only way to get her into the facility, is it possible to discuss other options? Maybe reevaluate and see if memory care might be more appropriate setting? 

Good luck advocating for your mother while also taking care of yourself!

 


Quip
Posted: Friday, March 15, 2019 9:27 AM
Joined: 2/25/2019
Posts: 13


pearlhansen   - So sorry you're having to endure this.

This sentence in your first post summarizes this experience for many of us I think:

I can't have her in a "care" facility and be released of the burden of managing all aspects of her care, and get back to my own life.

I also try to walk the line between looking out for my mom, and pissing off the admin or staff.  Lately, I've been sending an e-mail, followed by a phone call - leaving a message and then calling back to talk to a human also.  STILL things do not get implemented.   No tips on how to make it work, just empathizing.

Take care.

Quip


selkirk60
Posted: Friday, March 15, 2019 10:23 PM
Joined: 1/11/2018
Posts: 70


It's so hard to have a LO in a care facility.  They will never provide all the care we want, and they will never provide care exactly the way we want it done, or that we would do it - if we could do it.

My mother is in hospice in a memory care.  I have had many similar frustrations - why can't they give her a banana every day, why is it a battle to get cranberry juice, where did all her socks go, etc.  

But, as I finally concluded, and as the hospice social worker told me,  sometimes good enough is good enough.  It's all we can do.  They keep her clean, fed, clothed, diapered, and show more humor and patience than I ever could.  Yeah, it's not perfect.  Yeah, she doesn't take in enough fluids. And I do believe that some of the staff truly care about her.  At every facility there are exceptional staff and just-average staff.  With the wages of caregivers it's a miracle there aren't more problems. 

I don't believe there's much they could do (or neglect to do) that would really hasten her death.  After all, she would be dead already if she weren't there.  And she's in steady decline. Progression of dementia may be what is really happening to your mother.  It's not a pretty thing to see.

Is it really about the coconut water?  I hear so much grief and pain and guilt in your post. You've had a hard road and made sacrifices for her.  If this facility is what the budget allows, maybe you've done all you can.  Is it good enough? Only you can answer that question.  But remember why she is there in the first place.  Your life has to go on. 

Sending good thoughts your way.  

 


elisny
Posted: Saturday, March 16, 2019 9:39 PM
Joined: 3/16/2019
Posts: 3


Like zauberflote I could write a book about this topic.

You wrote "It seems they want to take a cookie cutter approach to residents, offering their standard care but not customizing it for a particular resident."  

Exactly.

Some people (even one of my siblings) just don't get it.  I have spent two years, on average 7-9 hours per day, serving as a companion and advocate for my mother who is in a "skilled" nursing facility.  It is supposed to be the best in a very populated county in Florida.  If this is the best, then the bar is so low you would stub your toe going over it.  

I knew I would have to move across the country to be with my mom after a visit when I inquired about my mother's hearing (she couldn't hear when I wasn't directly in front of her.)  The staff were unaware of any issue.  The doctor stood 18 inches in front of her and asked if she could hear him.  I took her to an ENT doc and he removed about 3/4s of an inch of wax from each ear.  Voila, she could hear perfectly fine.  ** This is just ONE example of MANY.  The bottom line - based on two years of continuous observation: Unless an issue is in the treatment plan or is acute (e.g. bleeding, a fall), do not expect staff to notice it.

Now that I have moved across the country -- and visiting every day, I know my mom gets a fair amount of attention.  Not great, but fair.  That's what it takes.  And . . . even then, simple instructions like your "coconut milk" are a battle to get done, certainly consistently.  I strive to be nice about it with floor staff, and vent my frustrations through management.  I also praise the aides at every opportunity.  The ones in this facility work hard, and most are quite lovely -- the one big plus of the place.

I don't know what state you are in, but Florida has statutory resident's rights (look up "FL 400.022"), a Long-Term-Care Ombudsman Program as an advocacy program, and an enforcement agency, the Agency for Health Care Administration (AHCA) where you can file complaints.  

In addition, Federal Law provides for many of the same rights (here in Florida, these are also enforced by the AHCA), and requires each facility to have a Grievance Official.  

Check out: https://ltcombudsman.org/issues/residents-rights#what

My suggestion:  Ask who the Grievance Official is.  (If it is like the facility where my mom is at, there was none -- though they do now, after I filed complaints with the state.)  If there is one, file a complaint with that person, in writing (email if possible).  If that doesn't resolve it, go through your Long-Term-Care Ombudsman or similar program (assuming there is one), and if that doesn't work, file a complaint with your state's version of the Florida AHCA.

Similar to you, dealing with the facility is actually more difficult than watching my mom's decline.  I wish she would come live with me, but that isn't in her playbook at this point.  Given she is in the last stages of her life, she is afraid of change - which I understand.

Best of luck to you.  

 

 

  

 


paperrockscissors
Posted: Saturday, March 16, 2019 11:18 PM
Joined: 1/7/2017
Posts: 102


Oh my, what a timely post for me. I just moved my LO into a facility last week. The caregivers are super friendly and sweet and I really like the place in many ways, but I already have some similar concerns. It's all so new. I'll see how they handle my diplomatic micromanagement before getting more obnoxious, but in the meantime I'll be spending many hours there to observe what's happening so I can present an updated/clearer care plan. I had also begun to leave notes, but also found that some new caregivers weren't reading them.

One of my big concerns is that the change has exacerbated the AD symptoms. I knew to expect this but sort hoped it wouldn't happen! Is it temporary in some patients but not others? The notion is always that the dementia gets worse with change, but there's a part of me that thinks maybe the old routine was, to some degree, covering up changes that were already happening.

The other thing is that we chose to go to AL, but I'm beginning to think that memory care is not far off at all, which will mean another move, although probably in the same building. Argh.


ghostdog
Posted: Sunday, March 17, 2019 8:48 AM
Joined: 2/9/2015
Posts: 561


On dietary issues I've had the most success when it is written on a script by a medical practitioner as a dietary restriction or requirement.  In this state, where dementia care is mostly MC AL, this is how you get the facility to implement this as a "requirement" and get it written into the care plan and the med charts.  For us, still sometimes a bit more hit and miss than I would ideally want but mostly effective.

Perhaps a doctor could write a script for open coconut water to be available daily to prevent dehydration



Victoria2020
Posted: Thursday, March 21, 2019 6:21 PM
Joined: 9/21/2017
Posts: 338


Revisiting this I was thinking - it probably is an issue of departments in the home - their responsibilities- versus the seeming impossibilities of opening a bottle.

Dietary does food and drink and measures it, Nursing does nursing and measurement of out go. So maybe the Doctor ordering the kitchen to get the bottle on the morning tray will solve it as suggested by ghost dog.

Like when the utility was in front of my house , 4 guys for 2 hours, waiting for the other union to send the guy who had the screw any of them could have used.


MN Chickadee
Posted: Thursday, March 21, 2019 9:15 PM
Joined: 9/7/2014
Posts: 692


Interesting and helpful perspectives.Victoria you make a good point. Some CNAs might not be familiar with coconut water. They may equate it with cracking a Pepsi or something like that. I suppose giving any resident something to ingest comes with double checking and safeguards to ensure they don't give someone an item they shouldn't have and maybe they either aren't sure or assume it's someone else's responsibility.
mostlyme
Posted: Friday, March 22, 2019 1:56 AM
Joined: 12/17/2018
Posts: 73


Pearl, how are you doing?  How is your mother?

I found myself nodding continuously while reading your post.  I don't understand why so many places are like this.  It doesn't make sense.  

Thinking of you...


NC caregiver
Posted: Friday, March 22, 2019 5:56 AM
Joined: 2/7/2018
Posts: 827


I don't have experience with facility, but I do have major challenges these days keeping Mom hydrated!  You mentioned that your Mom can't open the coconut water herself.  If you pre-opened it to loosen the tops would she be able to open?   Or pour it into something she can manage ?    I agree that the facility should do this but was trying to think of a "work around".   Mom likes to have a small coke daily & I unscrew the top & then close it back so she can feel like she opened it herself .

I wish you well & hope you can find ways to relax & take time to care for yourself.    Tragically our loved ones are going to decline despite best efforts and it is hard to accept this .  Mom is slipping from stage 6 & painfully close to the final stage .  


 
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