Issues With My Mom’s Care Facility

JoJo1020

My 83 yr old mom, with moderate to severe lbd has been living in a specialty care facility since early Jan. She was very adverse to it but we told her to give it a chance. It is very expensive and we are paying for it out of pocket ($18k a month!). Of course we were over promised on what type of care she would receive and I was skeptical about all of the things they were promising, but I was keeping an open mind. They did put everyone on quarantine for a few weeks right after she moved in, so that didn’t help..but now that it’s getting back to normal I just don’t think she’s getting the kind of attention she needs. 

I have never dealt with these types of facilities so maybe my expectations are too high. There are some amazing aides that help her but there are also many that just go through the motions. When my mom pushes her pendant button, many times they don’t respond for awhile. What if there was an emergency and she needed help right away. She does ask them for some delusional things, but that shouldn’t keep them from responding when she needs help. Is that normal? She is completely bedridden and needs 2 ppl to move her from the bed to the wheelchair/recliner so she’s pretty helpless if she’s in bed. This definitely limits the options near us for her. They either need to have a Hoyer lift or 2 ppl to move her. I go almost everyday so they know we are keeping an eye on her and how her care is going. I am just wondering if we should move her - or is this pretty much how it is? I feel like I am constantly having to check/double check every single thing. The whole point of having her there is for the social interaction, 24/7 attention etc. Is it better to have her in her house with a caregiver? It just seems like it might be isolating for her. I just don’t know what to do

my3sons2.0

I recently went thru this with my dad. Don't keep her there with your concerns. We had several conferences with different staff regarding our concerns and dad's concerns but nothing ever improved. He waited sometimes for two hours for someone to assist his call for help. So unacceptable!My dad was so unhappy there I wish I I had never put him in there and kept him at home. But he was also a two person transfer and Icouldn't manage anymore. We were paying out of pocket too but that money would have been better used for additional in-home help.

M1

Just a thought,, have you asked for a hospice evaluation? It might provide some additional resources for her covered by Medicare. Wouldn't increase your costs. Sounds like she would easily qualify.

harshedbuzz

JoJo-

I am really sorry you are dealing with not having your mom's needs met. 

It's really hard to say. For one thing, this pandemic has decimated staffing at care communities of all kinds which means they are hard-pressed to deliver the levels of care you might have seen 2-3 years ago. I could see where this would result in waits if other residents needed attention- especially if she requires a 2-person lift. It might mean that this arrangement is the best available right now. If you brought her home, you might struggle to find staff to provide care reliably as so many have left the profession.

What kind of facility is it? States have very strict regulations about what services the various kinds of care must offer.  The contract you signed will spell out what is actually expected in terms of care. If she is mostly in bed, she's likely a candidate for skilled nursing rather than a personal or memory care. Most MCF will allow a PWD to age in place but require a certain level of ambulation and self-feeding for admission to the community. 

The cost seems a little high; are you in a VHCOL or HCOL area of the country? Or is this one of those corporate entities with plush decor? My aunt's place outside of Boston was $$$ but it was a religiously affiliated CCRC with kosher catering. IME, sometimes the fancier-looking places don't deliver as high-quality care as humbler outfits. My dad's MCF was not as fancy as the chain around the corner, but they invested in treating and training their staff well which made for better care. A friend's brother had a stroke and needed a SNF; his wife is a professor of nursing and went through 3 unhappy placements (all affiliated with their religion) that weren't great- I suggested she check out the SNF run by the county which is primarily for those on Medicaid and she was delighted by the level of care and attention he got. The place is quite spartan, but the care is awesome.

Since you are looking for the social piece which is very challenging for someone who is in bed or a gerichair, maybe it makes sense to bring in a paid companion to visit and entertain your mom. As nice as dad's facility was and even with social programing from 8am until 8pm, a few residents had visitors. We hired a visitor for lunches with my aunt on the days a family member wasn't able to come feed her lunch. 

HB

King Boo

It helps if you have visited other options to compare.  I tormented myself in the beginning after placement with questioning my decision.  After additional multiple facility visits, I realized I had chosen well the first time.

Don't torment your evaluation process with what ifs?  And the old activities/stimulation question.

Start with:

1.  Are her medical needs being met?  Is her skin being monitered for breakdown?  Are they catching potential problems before the bloom into a hot mess?  Is there weekly access to physicians, with specialists at least monthly?

2.  Are staff kind and patient?  Is the interaction positive?  (remember, some of our LO's cannot handle constant conversation and stimulation)

3.  What was my LO's baseline personality? (There's an amazing number of us, me included, who expect our life time introverts and homebodies to want to participate in every facility activity)  The question to ask is 'are they available if needed"

"Just going through the motions" - hmm.  This one bears closer evaluation.   If it is getting the needed act done, it's a huge step above neglect and not doing the work.  On the other hand, is it surly, or nasty?   

Inflations is hitting and perhaps you are in an expensive area, but have you compared pricing between similar care levels?    Is this a skilled nursing facility?   Beware spending down in a facility that cannot continue to provide care after the money is gone.   Not always possible, but if your money is spent at a facility that accepts Medicaid, most skilled nursing facilities will then keep the resident on Medicaid after the money is gone.  Spend it at a free standing facility that does not, it leaves you in the less than desirable position of finding a new place with no money.   Just a though.  
What do you mean by 'specialty care facility'?

JoJo1020

Thank you so much for the help and insight! Her current facility is a hybrid snf/assisted living. There’s a RN for every 4 patients and various aides etc., They are meeting her needs medically, but she’s very unhappy and I find the operation disorganized. I’m so afraid to move her, only to find out it was better then a new place we move her to. There’s a place nearby that is only for dementia patients  (they have 3 tiers of care for dementia) which gets very good reviews, but my mom is in denial about her dementia. She thinks her wheelchair is temporary and that she’ll be walking again as soon as she gets the “right physical therapist” (she hasn’t walked on her own since early Oct). I’m tempted to try it and just tell her there are different wings for different types of patients and her wing is more for independent residents (even tho she needs help with everything except eating). It’s just so hard - and I don’t have any experience with any of this (much like many of you!). Thank you for listening and for your help! I appreciate it so much!

King Boo

So, the approach you are 'tempted' by is the correct approach.

This is a disease of cognition.  If your Mom requires the care level she is at, depending on her 'OK' for a care plan is a pathway to disaster.  She can no longer reason, process or integrate information.

That's your job now.  Care decisions.  It is your job to present the answer that brings the most comfort to her.  

You have the double whammy of a physically involved and a cognitively involved LO.

The way will be revealed as you research and visit you other options.

Of 20 facilities I visited, I would have used only 5.  And there was definitely a good 'fit' feel along the way - along with a good game plan to absorb the eventual decline.

Is this a USA care facility?  State regulations dictate facility classification.  Many CCRC's have AL/MC and SNF - with differing monthly charges.  

JoJo1020

Thank you so much for your insight. I really appreciate it!!

JoJo1020

Yes we are in the SF Bay Area. The place we are looking at is run by a company called Silverado and it is only for dementia patients. They have care for early stage, mid-stage and late stage, along with a geriatric physician on staff and skilled nursing services.

jfkoc

I see two Silverados listed in the Bar area. Both look lovely but you need to get to the nitty-gritty.

Finding the best placement is a frequent topic her and hopefully someone has a link to the discussions. 

The first step I alway recommend is to get on the phone and ask what the training program is both initially and ongoing. Get a specific answer. Do not settle for "we have our own". Next ask to be sent a copy of their state license. This mabdates what they are responsible for doing. Then go online and see there inspection reporst(s).

It will n ot matter how pretty the facility or how good the food is if the groundwork does not hold up.

towhee

Hi JoJo- King Boo and harshedbuzz gave you a lot of good advice.

You asked what is normal in facilities. From my experience and things I have heard from my alz support group I will say this-

1) There is often a disconnect between what the facility says the staff will do and what the staff actually does. Sometimes staffing levels do not turn out as promised, simply because they have trouble hiring and keeping staff. Since they have trouble keeping staff with the wages they pay, so if someone is adequate they don't push them to be perfect because they don't want them to quit.

2) I don't think you mean a staff ratio of 1RN to 4 residents- Do you mean 1CNA to 4 residents? 1 CNA for every 4 residents is a very good ratio, much better than the 1-7 in my LOs SNF. Even so, they cannot answer a call bell within 5 minutes every single time your mom calls. In the SNF I am familiar with the target was to answer within 10 minutes, and if it took more than 15 the call was supposed to go to the floor nurse, who was supposed to check, and if it took more than 30 minutes for the bell to be answered it was a mark against the CNA. But the CNA might be escorting a patient to a meal, or be taking someone to the toilet, or changing someone, or giving a shower, or getting someone in or out of bed, and they were not supposed to leave a resident in the middle of something. Most of the residents were not capable of using a call bell, and staff had a routine with their residents that they did not like to interrupt. So you often got staff who would pop in, turn off the call light and say they would be back. Sigh-  And yes, if a resident calls frequently for no real reason, that resident will start having their call answered more slowly. From my experience.

3) SNF care is 24/7 but it is not One to One care.

4) I would place your mom where her physical needs can be met so she does not have to be moved.

5) Happy is sometimes impossible

JoJo1020

Thank you all so much for the help! I really appreciate it. I raised quite a ruckus yesterday over multiple issues that we were encountering and today I’ve been called at least 8 times by the Exec Director, Nursing Director, Activities Director and Chef.  We are having a care conf on Thursday to discuss this further. I will keep an open mind- if they truly are sincere about turning some of this around I may give them a little longer. Still setting up appts at other places just for my own knowledge and as alternatives.  Thank you again for all of the good advice and help!