Welcome to City-Data.com Forum!
U.S. CitiesCity-Data Forum Index
Go Back   City-Data Forum > General Forums > Caregiving
 [Register]
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
View detailed profile (Advanced) or search
site with Google Custom Search

Search Forums  (Advanced)
Reply Start New Thread
 
Old 05-13-2019, 03:34 PM
 
50,107 posts, read 35,754,801 times
Reputation: 76078

Advertisements

Quote:
Originally Posted by theoldnorthstate View Post
I apologize that I may not have included enough information. I did not want to bog down the question with too much data. Hard to tell what is needed but experts do get clues from the data.

Mom now has advanced dementia (it has been a gradual decline). Probably vascular. She does not snap back occasionally or sometimes remember. Her self is gone but her spirit and strength remain. She has no clue who she is (sense of self gone) or who we are. She is in a memory care unit of a nursing facility (with tracking band) and has been in a facility of one sort or another for 6 years. We never thought she would make it to 92, the way she is going she may be there till 100 physically. With this dementia, I am not sure how much more there is to lose. But as things have evolved, there is always another lower level.

She is helpful by nature and curious. She puts miles on her wheelchair. Her mind remains analytical so she gets herself into situations hence the tracking band and "where is she now?" kind of thing. She is a handful for staff and they consider her one of their challenges. But she has been a favorite up until now I think. Compliant, friendly, sweet, tries to help but bound to explore or 'fix' things.

She has no memory except maybe something like 'muscle memory' as put a toothbrush in her hand and she can use it but she doesn't remember what a toothbrush is for example. Put her on the commode and she can use it, but she grabs the toilet paper putting it on her head. Therefore her self care capability is limited. She can feed herself with coaxing using her hands (sandwich cookie, etc) but I haven't seen her feed herself with a spoon in months.

So she is either wheeling around in her wheelchair or playing with her baby dolls. Her cognition is fuzzy in some ways but she thinks. She observes. She feels. She understands. But it is gone in a flash. She tries to talk but she hears herself and knows what is coming out is not what she is trying to say. She is sympathetic to others distress, I can see it in her eyes.

So...

She has clearly had a dementia downturn which makes it harder for staff because she can do less for herself but we are also finding events that seem like they should have been caught by staff and addressed/recorded. So lately sisters and I are seeing things that we wonder "Is this too much to expect staff to take care of"? We want to advocate for Mom but we don't want to hound the staff with unreasonable demands.

Example, I found leg wounds that were untreated, unreported and apparently 'unknown' to the staff. I requested they be treated and it turned out they were infected as well as bloody. To me, I shouldn't have been the one to find them. I shouldn't have had to ask for them to be dressed or that a doctor check them. I shouldn't have had to ask them if the wounds were reported or recorded.

Does this help with my question?

Is there a way I can find the balance between what should be the expected care vs unrealistic expectations?

Thanks much

Judy

No, that's not too much. The nurses may not notice unless she is on for skin checks/wound rounds (usually people with known wounds or high risk for wounds such as those with chronic edema) but the nurse's aides should have noticed during a.m. care and notified the nurse. Now they often have a hard time keeping dressings on in someone with advanced dementia, and some residents with advanced dementia pick at their skin and no matter what they do they can't keep the wounds closed...but the interventions should be documented. We had a resident once who they had to keep oven mitts on her hands to stop her from picking scabs.



So the CNA should have noticed, that should be expected, but I'm sure you know some are better than others. Unless the nurse has reason to see her unclothed it would be easy for the nurse not to know without the daily care provider reporting it to them, though. The doctor isn't always needed to check them, in many cases there is a wound specialist nurse who comes in and does the wound rounds weekly, and she is probably going to be able to address them better than the doc, who will most likely just prescribe an ointment and have her put on wound rounds. Do you or they know what the wounds are from? Are they actual wounds, as in pressure ulcers or internal cause such as chronic edema, or are they skin tears?


It is hard to find the balance. Even with my own mom, who has declined significantly ever since a recent UTI (she doesn't have dementia but she is very weak, losing weight and can't get up by herself anymore, while she was independent 3 weeks ago), she tells me some of the aides aren't patient enough with her and are short with her, and unless I'm yelling at the facility every day, often I just say "I'm sorry they aren't all nice, Mom". I'm trying to balance the fact she is in an expensive ALF now on Medicaid, and I'm already waiting for the phone call "Your mom is no longer appropriate for assisted living", so I have to choose my battles.
Reply With Quote Quick reply to this message

 
Old 05-13-2019, 06:11 PM
 
5,544 posts, read 8,267,330 times
Reputation: 11141
Thank you ocnj

that does help. My guess the wounds weren't reported to be placed in the medical notes. Her skin is so very thin and I think she bumped her legs into something which caused them to tear. Thanks for asking.
Reply With Quote Quick reply to this message
 
Old 05-13-2019, 06:16 PM
 
50,107 posts, read 35,754,801 times
Reputation: 76078
Quote:
Originally Posted by theoldnorthstate View Post
Thank you ocnj

that does help. My guess the wounds weren't reported to be placed in the medical notes. Her skin is so very thin and I think she bumped her legs into something which caused them to tear. Thanks for asking.

That's very common. Maybe check her bed, or her wheelchair where the leg rests attach to see if there are any sharp edges. If so, someone in rehab can cover them with sherpa or something else padded.
Reply With Quote Quick reply to this message
 
Old 05-13-2019, 07:10 PM
 
Location: upstate NY
36 posts, read 25,760 times
Reputation: 242
What you can find out online is the review they have received from your state Department of Health,yearly inspections are the norm.
A group comes in and usually stays 3-4 days and review all the records.
The leg issue should have been reported by the aides to the R.N. to be evaluated and medically treated,this could be reported as negligence.
Having said this,the direct care staff is generally the most overworked,underpaid industry,the facilities usually try to get by with the least amount of staff the state requires.
There is a huge turnover and like most things it's the residents that suffer.
I was a nurses aide for 15+ years and I don't miss it.
Reply With Quote Quick reply to this message
 
Old 05-13-2019, 07:40 PM
 
3,154 posts, read 2,029,905 times
Reputation: 9288
Quote:
Originally Posted by theoldnorthstate View Post
Thank you ocnj
that does help. My guess the wounds weren't reported to be placed in the medical notes. Her skin is so very thin and I think she bumped her legs into something which caused them to tear. Thanks for asking.
With respect, you may want to look into putting Mom into a Hospice program. In Illinois, two doctors have to sign off that they believe the patient has less than six months to live (the patient is re-evaluated every six months and can stay in Hospice for years if necessary). She will get better and more frequent care, typically Hospice services are in addition to what the nursing home provides, and the focus is on Palliative (comfort) care. The caveat is that she will not go to the hospital or receive care beyond first aid; for instance, if she were to develop cancer, she would not receive surgery or chemo (but at 92 with advanced dementia, who would want that anyway?). Something to check out if you are interested.
Reply With Quote Quick reply to this message
 
Old 05-13-2019, 08:05 PM
 
5,544 posts, read 8,267,330 times
Reputation: 11141
Quote:
Originally Posted by Curly Q. Bobalink View Post
With respect, you may want to look into putting Mom into a Hospice program. In Illinois, two doctors have to sign off that they believe the patient has less than six months to live (the patient is re-evaluated every six months and can stay in Hospice for years if necessary). She will get better and more frequent care, typically Hospice services are in addition to what the nursing home provides, and the focus is on Palliative (comfort) care. The caveat is that she will not go to the hospital or receive care beyond first aid; for instance, if she were to develop cancer, she would not receive surgery or chemo (but at 92 with advanced dementia, who would want that anyway?). Something to check out if you are interested.
thank you for the idea. I will run it by my sisters.
Reply With Quote Quick reply to this message
 
Old 05-13-2019, 08:37 PM
 
3,808 posts, read 8,694,396 times
Reputation: 5536
My mother passed away from Alzheimer's last spring. She was in pretty good physical condition for 79. She had no short term memory and no idea she had dementia. So she was completely belligerent to the staff when they tried to get her to shower or change clothes. (she was worse with me) I can totally where she could have sores they'd missed seeing. But I don't think there's anything over the top with your expectations.

You have my best wishes in a tough situation.
Reply With Quote Quick reply to this message
 
Old 05-13-2019, 09:22 PM
ERH
 
Location: Raleigh-Durham, NC
1,695 posts, read 2,507,603 times
Reputation: 3958
Quote:
Originally Posted by Curly Q. Bobalink View Post
With respect, you may want to look into putting Mom into a Hospice program. In Illinois, two doctors have to sign off that they believe the patient has less than six months to live (the patient is re-evaluated every six months and can stay in Hospice for years if necessary). She will get better and more frequent care, typically Hospice services are in addition to what the nursing home provides, and the focus is on Palliative (comfort) care. The caveat is that she will not go to the hospital or receive care beyond first aid; for instance, if she were to develop cancer, she would not receive surgery or chemo (but at 92 with advanced dementia, who would want that anyway?). Something to check out if you are interested.
I second this. Hospice was a godsend to us (although not perfect) when my mom was at the end of her life (cancer). I wish we'd pursued it earlier, but as it was, Dad refused to let anyone tell Mom she was dying. She had lung cancer that metastasized to her brain; tumor removal in Jan 2014 with aggressive radiation bought us almost a year (although knowing what I know now, I would NOT pursue aggressive radiation to the brain again). She entered hospice the first week of December 2015 and died January 4 here at home.
Reply With Quote Quick reply to this message
 
Old 05-14-2019, 06:07 AM
 
50,107 posts, read 35,754,801 times
Reputation: 76078
I don’t see how she will qualify for hospice if as OP stated in the first post she is “physically well and active”.
Reply With Quote Quick reply to this message
 
Old 05-14-2019, 06:56 AM
 
4,407 posts, read 3,418,613 times
Reputation: 14168
Quote:
Originally Posted by ocnjgirl View Post
No, that's not too much. The nurses may not notice unless she is on for skin checks/wound rounds (usually people with known wounds or high risk for wounds such as those with chronic edema) but the nurse's aides should have noticed during a.m. care and notified the nurse. Now they often have a hard time keeping dressings on in someone with advanced dementia, and some residents with advanced dementia pick at their skin and no matter what they do they can't keep the wounds closed...but the interventions should be documented. We had a resident once who they had to keep oven mitts on her hands to stop her from picking scabs.
So true. It's not like you can tell them "Don't pick at that scab, it won't heal." The patient simply doesn't understand. All they know is something is irritating them and they pick at it.

Quote:
Originally Posted by ocnjgirl View Post
It is hard to find the balance. Even with my own mom, who has declined significantly ever since a recent UTI (she doesn't have dementia but she is very weak, losing weight and can't get up by herself anymore, while she was independent 3 weeks ago), she tells me some of the aides aren't patient enough with her and are short with her, and unless I'm yelling at the facility every day, often I just say "I'm sorry they aren't all nice, Mom". I'm trying to balance the fact she is in an expensive ALF now on Medicaid, and I'm already waiting for the phone call "Your mom is no longer appropriate for assisted living", so I have to choose my battles.
This is absolutely true and something I learned going through Alzheimer's for 17 years with my Mom (half of that in a nursing home -- yes, she lived for all those years after being "bad off enough" to be admitted to nursing care so be prepared).

Everything is not going to be perfect or the way YOU want it. Partly because your/our expectations are not realistic, and partly because no facility can have eyes on a patient 24/7. Hell, neither can a relative. When I went to visit my mom at home when she was still living with my dad, and he was caring for her, I would find her in a wet diaper from time to time. He was very diligent with her and still couldn't keep up with it because it's hard to know exactly when a diaper is wet (unless it smells like urine) and he had to manage cooking etc. It's not like his eyes could be on her 24/7 to jump for a diaper change. Plus as an older person his sense of smell wasn't that great.


Quote:
Originally Posted by ocnjgirl View Post
I don’t see how she will qualify for hospice if as OP stated in the first post she is “physically well and active”.
Ha, that was my problem with the first post.

Curly brings up a good point. Hospice can be approved for patients in late-stage dementia even without a "6-months left" diagnosis -- because there is no standardized 6-month window for these patients. They are just on a steady decline but because organs (heart, lungs) might be OK they can hang on in this state for years. My mother was on hospice for about a year and a half the first time -- about 5-6 years before she died. Then she stopped losing weight so they took her off hospice status.

OP, here are the criteria:
* Patient must have a severity of dementia of a Reisberg’s Functional Assessment Staging (FAST) scale of 7C or higher. The FAST score is a way to estimate how advanced the Alzheimer’s is. To have a FAST score of 7C, the patient should meet the following criteria:
*Can’t walk without assistance
*Can’t dress without assistance
*Can’t bathe without assistance
*Bowel and bladder incontinence
*Can’t speak more than 6 intelligible words/day or no meaningful verbal communication
Also, the patient should have had one of the following comorbid conditions in the last 6 months:
*Aspiration Pneumonia
*Pyelonephritis
*Sepsis
*Multiple progressive stage 3-4 decubiti
*Fever after antibiotics
*Unable to maintain fluids/caloric intake to sustain life: weight loss of 10% of body weight in 6 months and /or albumin less than 2.5gm/dl.

The following general changes that indicate a worsening will support the end-stage diagnosis:
*Falls
* Infection (UTI, URI, cellulitis)
*Uncontrolled pain or other symptoms
*Psychosocial issues
*Hypotension with systemic BP less than 90 or postural hypotension, edema, ascites, pleural/pericardial effusion and weakness


The provider should assess the patient and if the criteria above are met, consult hospice. Hospice has aides that will come in to help with bathing, nurses that help with medications and comfort, volunteers that may bring a pet or a musical instrument, chaplains to provide spiritual support and bereavement specialists to help the family with the death.

https://www.medicaleconomics.com/med...eimers-disease

Last edited by wasel; 05-14-2019 at 07:07 AM..
Reply With Quote Quick reply to this message
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.

Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.


Reply
Please update this thread with any new information or opinions. This open thread is still read by thousands of people, so we encourage all additional points of view.

Quick Reply
Message:


Over $104,000 in prizes was already given out to active posters on our forum and additional giveaways are planned!

Go Back   City-Data Forum > General Forums > Caregiving

All times are GMT -6.

© 2005-2024, Advameg, Inc. · Please obey Forum Rules · Terms of Use and Privacy Policy · Bug Bounty

City-Data.com - Contact Us - Archive 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37 - Top