Providers with Agendas / Vulnerability

Hala

If anyone has some feedback they think may be helpful to my situation, I will appreciate it. 

My mom has dementia. She (92 yo) and my Dad (95 yo) live in assisted living. This facility has notified my two siblings (neither of whom work any longer, but do NOTHING to help) and me they no longer feel they can provide the level of services they need.  They are recommending a locked facility for mom and skilled care for my Dad.  Mom and Dad have been married 72 years.  My mom will not let my dad out of her sight. She does not wander.  She is verbally aggressive at times and, also at times, will push Dad or slap at him to get his attention.  She relies on him a lot and refuses to go anywhere without him.  

There is a nurse in the facility who has done everything she can to paint my mom as worse than she is.  The relationship I had with her became testy when I asked to see nursing notes and she wrote something false and I asked her to correct it or add a note re: my disagreement (I observed what happened; she didn't). She likes her power.  

Just recently my folks applied to move to a local nursing home - the people there were very positive about their being admitted - until they talked with this particular nurse.  It sickens me she can sabotage chances and that these folks have as much power as they do and so little regulations.  I work as a professional disabilities advocate and I know what can happen.  I also know that my bias is affected by this fact: if Mom and Dad are separated, it will kill Mom...and I can't handle that.  My siblings couldn't care less - that is a whole other story. 

I know there are some extremely wonderful people who work for providers. Unfortunately, sometimes they don't last because they see they need to get out or "the system" kicks them out due to their not serving the status quo.  

There are so many, many issues happening.  What I am finding is that I literally am alone with this - there are no resources that I can tap into 'out there' that can take a wrap-around approach to what is happening and all that is involved. And that is what is needed - a wrap-around approach.  So, I come to this forum. Surely I am not the only one who has been in this situation and I won't be the last. Something has to change long term for our elders and for the people that do give a darn about them.  If you have found yourself feeling like you are all alone, what helped you.  I am getting counseling, for which I am grateful, but it doesn't touch all bases. I am so overwhelmed and tired.   Thanks in advance for any thoughts.  

dayn2nite2

Whether your mother relies on him or not, they need to be separated because your mother, by pushing and slapping at your father, is abusing him.

It’s abuse, plain and simple.

And why would telling the truth about your mother’s behavior be regarded as an “agenda” by you?

Hala

Thank you for your response.  

It's an agenda because she uses words that embellish what has actually occurred.  She also has flat out lied.  This facility has a new memory care unit and they want to fill it.  

We are working with my mom's primary to see what medications can help. Also, there are many other things that need to be tried - including more activities (structured) for her. There is so much isolation for both of them. 

I am not saying that is it "OK" for the verbal aggression or the pushing (on arm; not when he is standing or walking) or light slapping. I do not, however, see it as black and white (as "abuse") as it seems you may be seeing it.  I am not saying how you see it is wrong. I am saying I see it differently.  I know the particulars - including my father's wishes.  I know the relationship they have had.  I know the dynamics Dad sometimes brings to the table as well.  There is a lot to consider. If I felt my dad was not safe, I'd be taking different steps.  And I may have to at some point, depending...

I do appreciate your comments.  I hope others will weigh in too.  I want to keep as open mind as I can about what needs to happen for my folks.  However, I am not sorry - at all - that this nurse's 'care' for my parents is on a time limit.  

Quilting brings calm

You mention a need for more structure for your mom.  My understanding is that type of structure occurs more frequently at an MC than at an AL.  My parents live in an AL.  They do have activities, meals, housekeeping, laundry , medication management  …. But there’s a lot of time spent on their own in their apartment.  They are free to skip activities and meals,  without much questioning by the staff. 

Your parents are very elderly and possibly do need more care than the AL wants to provide.I have heard that an MC is better for a dementia patient than a skilled nursing home.  Unfortunately for my mom, she will need to go to a nursing home that accepts Medicaid when the AL can no longer handle her.  They can’t afford to pay the MC fees for her  while my stepdad lives in the AL. 

I depend on the staff to tell me what is going on because I’m not there every day ( really only once a week) and I can’t really believe everything I hear from my parents.  Today my mom told me my step-dad isn’t eating much besides cottage cheese and  applesauce.  The nurse is at meals and she told me he’s cleaning his plate and also asking for cottage cheese and applesauce.  He’s using that to help him swallow. Meanwhile my step-dad says he doesn’t like the food.   My thoughts are that the staff has a more accurate picture of them than I do at this point. 

towhee

Hello Hala-

Yes, there have been instances mentioned before on the forum where facilities wanted to move a resident from their AL to their MC and family felt it was too soon and that there was a money motive. From what you have said here though, it sounds as if your mom does indeed need a higher level of care. Also, they are suggesting that your dad move out to a nursing home, which would lose them money. Unless they own a nursing home? 

Every facility I've had experience with sees everything through the lens of the bottom line. They see scenarios like: #1 Mom pushes at Dad, frail dad overbalances and falls and breaks hip. Totally uninvolved children blame facility and sue. Facility loses money and reputation. #2 Family of prospective resident tours facility, hears mom cussing and sees her slapping at dad. They drop facility from their list, facility gets bad reputation. They fail to give accurate information to a new facility, new facility is blindsided by situation they did not expect, chaos ensues. New facility (nursing home/rehab) does not refer any patients to AL ever again. In any of these situations the state licensing board might get involved.

When you see the interaction between your parents you are seeing it through a lifetime of knowing they love one another. Facility staff only see the behavior in the present and are viewing it thru the lens of facility capability and liability. They may not understand dementia, and they may have past issues with abuse. Or quite honestly, they may not like you or your mom.

It is hard I know, but you have to do what is best for each of your parents. Perhaps you might talk to a disinterested knowledgeable third party for advice, someone who could evaluate your parents needs without a money motive. You might look for a memory care on the same campus as a nursing home, or get your parents separate rooms in a separate wing of the same nursing home. Many nursing homes have great security.

You want a wrap around approach. You are more likely to get that at MC. Or, more likely to be able to put it in place if you have a ton of money for additional care, or a ton of time or both. I got a lot of support from reading this forum and from in person support groups. It is not easy and I never got good at it, but you have to choose what is really important and let some of the rest go. I agree with you, there is no one place to go for help. Every new caregiver is out here searching, trying to find the same needed resources over and over again.

I hope the medication for your mom will help.

harshedbuzz

Hala-

This is a difficult scenario all around.

TLR. Your mom likely needs memory care. Your dad might be a better candidate for Personal Care. Where I live these often occupy the same building or campus which means dad could spend time with mom but would have access to activities for those who have not had a cognitive shift. He would also be able to get breaks from mom if needed. The shadowing behavior you describe sounds benign enough but can be soul-sucking when you are living it. That said, I have heard of the spouse who doesn't have dementia moving to MC to be with a husband/wife in similar circumstances.

Context: You seem to have a lot of anger- much of it justified. Obviously, there's the anger at dementia. But you also have the dead-beat siblings on your plate. Please be careful that you don't transfer and focus that anger on someone who is just doing their job.

Given your description of your mom's behavior and your parents' advanced ages, they are no longer candidates for a hospitality-model AL. Staff may be exasperated with a family who has not proactively made a change to a higher acuity of care especially as it impacts your dad. In note taking, the nurse is creating a paper trail that will prevent her from being booted from the sort of corporate MCF that cherry picks residents. Also, these facilities work together all the time on placements, so she may feel she needs to describe your mom in certain terms to protect her professional reputation- no one would take her seriously if mom's existing behaviors ramped up as she settled in her new place if no mention was made of them.

Even if the nurse is having a go at you and isn't just your BEC (b*tch eatin' crackers), the sooner you get away the better for your own mental health. There's no point in letting her live rent-free in your head. 

I know how angry I was when my own dad was denied admission to mom's first choice MCF based solely on one of his mixed-dementia diagnoses being associated with a potential for certain challenging behaviors which he didn't have at the time and never developed. Long story short, he ended up in my first choice and had exceptional care. 

Cobbling onto what towhee mentioned. There are instances places that offer AL/MC do bait and switch. It's a thing, for sure. But this is most often a result of a family wearing rose-tinted glasses thinking their LO might be ready for AL when that cruise has already sailed. The folks at the AL/MC know this and will agree to a trial in AL knowing full well that the family is likely to figure this out on their own in the coming weeks. 

I saw this happen with my one aunt. She'd been home with her daughter for several years providing major scaffolding for ADLs. When she went to AL, she wasn't able to show up for meals when served, couldn't keep up with conversations at the table or follow the games played with other residents. She was ignored by others at best, a couple of ancient meangirls even bullied her. It did not go well.

I sincerely hope you are able to find a place about which you feel confident in their care soon and that they adjust easily.

HB

GothicGremlin

Man, I feel you, Hala, and I even have the MIA brother who pokes his head up once in awhile solely to cause problems.  It's draining.

About memory care, assisted living, skilled nursing ....  My sister has early onset Alzheimer's, and when she was diagnosed, I knew zip about Alzheimer's and everything that goes with it. And worse, I didn't know which resources were reputable, and which weren't - but hey, we're all responsible for it on the final, and it's 100% of our grade.   We really are on our own here.

From what I've learned over time, chances are high that your mom (like my sister) is farther along the dementia road than you realize. And I agree with HarshedBuzz, your mom probably needs to be in memory care.

My sister is in memory care now, and it's a highly structured environment. Peggy continues to decline, but her stress level is so much lower than it was at home. She has few choices to make, which means her environment isn't overwhelming to her. Before I placed her in memory care, she paced a lot, she was stressed and frustrated because she couldn't figure out what to do. In her words - "I don't know what to do or how to do it".  It's not like memory care is utopia, but at least she's not frustrated every day.

As for the dynamics between your parents and staff, I don't have anything to add, but I generally agree with everything the other posters have said.

Things that have helped me? This forum - there's a wealth of knowledge here. I also have a therapist. I chose her because prior to becoming a therapist, she was a social worker who dealt primarily with Alzheimer's patients and caregivers. She's been hugely helpful to me.  The last thing - my MIA brother? I just ignore him now. My "team" is made up of a cousin, and two of Peggy's best friends. We share info, we make sure one of us sees Peggy almost every day, so we know what's going on inside at memory care.

janhu

@ dayn2  -- wondering if it's accurate to say that dementia patients are "abusing" others when they have little to no control over their actions?

Quilting brings calm

Janhu-   Recently there was an attack at a group home in my area for the developmentally disabled. It was resident on resident attack, he used his hands and feet. 3 people were injured, one of which died a month later from her injuries. 3 counts of attempted murder, one of which was upgraded to murder.  The man had lived there 3 years. He was found unfit to stand trial. 

So yes, it would  still be considered abuse even if the resident couldn’t control their actions  

 https://newschannel20.com/amp/news/local/woman-dies-after-attack-at-forsyth-group-home

harshedbuzz

janhu wrote:

@ dayn2  -- wondering if it's accurate to say that dementia patients are "abusing" others when they have little to no control over their actions?

Behavior is behavior. Abuse does not require cognition. 

The OP does not elaborate whether this handsy behavior has always been a part of her mom's personality or if it is a new symptom of dementia. My dad was verbally abusive and controlling prior to dementia; it was an aspect of his personality well into the disease process which made the it's the disease talking mantra offered here of little value to me personally. 

At the end of the day it really doesn't matter, if mom shoves her 95-year-old husband and he loses his balance it could have catastrophic consequences for him and also for the PWD who uses him as a kind of security object. 

JJAz

". . . verbal aggression or the pushing (on arm; not when he is standing or walking) or light slapping. . ."

 With dementia, these are VERY dangerous actions because they are often precursors to more aggressive actions.  It doesn't matter how gentle the person was prior to dementia because they are a different person now.  That being said, I am so sorry that you are dealing with 2 elderly parents who are in such decline.  It's overwhelming to face the inevitable future when you feel unsupported. 

janhu

What is the official definition of abuse?

Abuse is an action that intentionally causes harm or injures another person. This can refer to physical abuse, psychological abuse, mental abuse, or child abuse

https://www.law.cornell.edu/wex/abuse

mommyandme (m&m)

https://jnnp.bmj.com/content/suppl/2010/06/17/jnnp.2009.190934.DC1/JNNP_patient_choice_June_2010.pdf

Above is an article I just found about research on carers who have been the recipient of aggressive or violent behavior.  In the report they call it “abusive behavior” since the patient probably didn’t actually intend to abuse their carer.  Although they do term it as abuse throughout this article. 

Of course, we can agree to disagree. Regardless its aggressive for sure.  

Quilting brings calm

Hala - what is your situation as of today?  Have you made any changes to your parents’ living arrangement?  Please don’t get hung up on intentional vs unintentional.   Regardless of intentional or unintentional, you can’t really have a conversation with your mom that will make her stop slapping at your father, due to her dementia situation, What can be done is separating them so as to prevent  your elderly father from being hurt or losing his balance and falling.