Expetations from Memory Care prior to meeting with them

John2.0.1

I've posted several times about issues my mom has related to panic attacks when her delusion is telling her that she's not where she lives but is somewhere else like the train station and needs me to "Come get me right away" when she is actually in her own room. She needs me and me alone to help her to recognize her surroundings.

And other similar issues. Is it really unrealistic of me to expect that MC when they do their hourly check-ins that they will checking on her emotional state, be able to tell if she's starting to become agitated or anxious and act to head it off before it becomes a crisis?

Due to her Parkinson's mobility issues Mom has also injured herself trying to go to the bathroom on her own, not pressing her pendent button. Is it unrealistic of me to think that when the aids check-in they will offer to help her go to the bathroom then? If they just leave mom will try to go to the bathroom on her own in 30 minutes and possibly injure herself.

In preparation for a meeting I want to call with the MC bosses, does anyone know of a resource that defines in detail what one should be able expect of a memory care unit in terms of trying to head off a crisis or deescalate mom's panic attacks without the need for my intervention?

How much additional training should I expect aids in memory care to have vs typical AL aids in terms of anticipating problems and heading them off?

Mom is very bad at expressing her needs or immediate future needs and mumbles all the time. I think aids are not taking the time to understand if mom's mumbling are an attempt to express a need or just mumblings.

I've done some Googling and have not been able to find any document that really spells out what my realistic expectations should be of the MC unit. What I've found mainly is extremely general.

I'd like to go into this meeting armed with knowledge on what's reasonable for me to expect or not expect from mom's memory care.

zauberflote

John, it is possible your mom has a formal Care Plan. This document can be added to at any time. I'd say, if you'd like them to do various things, ask for a care plan meeting and just say that you'd like these specific things added to it. The regular toileting is a perfect example. Something I learned from doing it All Wrong Every Time-- don't go in "on the offensive", rather go in as a member of the team who sees some changes that would be helpful.

My mother was the consummate hostess-mode-er. Until the last few months, she would showtime for the aides checking in. "How you doing Miss Dorothy?" "I'm fine thank you!" ....even if she had a bursting bladder, it would not occur to her at that second of personal contact. Also, she didn't use the call button (which was at the bed anyway) but 3-4 times in 17 months. Her place was so chronically severely understaffed that I heard the call button board in the nurse office sounding off for minutes at a time, but there was no-one available to even check it. 

star26

In my experience, you need to specifically tell the staff what you want done. This should be discussed in a regular care plan meeting and put in writing. Sometimes a reminder sign in the resident’s room for the staff is needed, depending on what the reminder is.  You’re dealing with staff that is likely overworked and underpaid and the fact is, this is a job for them and she’s not their mother so they are likely not thinking in the same proactive and thoughtful way you are. 

  

Staff training can vary a lot from one MC facility to another. It’s recommended to ask what training program a MC uses (if any) when shopping for MC facilities. Some MC’s may gloss over the question by saying they hire experienced staff or that they have their own non-specific in-house training methods, others use known training programs and philosophies and they are eager to discuss it. Staffing ratios and staff turnover rates can also clue you in on what you can expect from any given MC facility. All MCs SHOULD be a big step up from AL in terms of dementia knowledge: re-directing, therapeutic fibbing, de-escalation, and just generally not being fazed by typical dementia behaviors which include residents being confused about where they are, residents being prone to anxiety, and residents not being able to voice their needs. When you mentioned in a previous post that you were frequently being called for these issues, I found it odd because this is common MC stuff.  If her panic behavior is that off the rails that they can’t handle it, or so frequent that they need to assess and potentially de-escalate every hour or every day, they should be setting up and insisting upon a medical consult rather than calling you to manage it. Even if you are able to talk her back down, the fact that she is repeatedly and frequently getting to that panic point is not good for her.   

Do you think she is spending too much time alone in her room? Is she engaged in activities that occupy her mind enough?  Would she be better served by a MC unit that is also a SNF so that they are able to pick her up when she falls and they are more medically-oriented?  

John2.0.1

She is supposed to have a care plan that was written when she was on the AL side but we need to write a new one because she has changed and she has more available services. She has only been on the MC side two months. I was surprised that things that I know were on her older AL care plan were not being implemented on the MC side. Several items but what sticks in my head is that since my mom gets up once or twice every night to pee (and sometimes hurts herself) they were to proactively get her up in the night to help her go pee. But they aren't doing it.

Fixing the care plan is THE reason why I want this meeting but I'd like to go in with reasonable expectations on what to request/demand.

John2.0.1

Another thing is training. The aids are supposed to have training on dementia. When they check in on my mom do they ask if mom wants anything  or just check that she looks OK?

Do they engage with her?

"How can I help you right now?" "Would you like to go to the bathroom?"

Listen, really listen to what mom mumbles and probe if it's an actual request.

Not just say "How are you?" and when mom needs a bit to think, wait and let her think. Don't even ask "How are you?" because the inevitable answer will be "OK" even if she's not OK.

Ask what she needs or wants and give her time to answer before running away.

A problem I have is that I don't see the aids interactions when my mom when I'm not there. When I am there and they come by I believe that they assume there is no need to ask if she needs anything because I'm there. I don't know what happens when I'm not there.

I will say that in AL vs MC, I have observed no real difference in how the aids engage with my mom but that could easily be because I'm there.

Cynbar

I have been inside a number of memory care facilities, and I find that the quality and quantity of care varies widely. There isn't a manual that applies to all. Make a list of your expectations and bring them to the care meeting. Ask to see her current care plan, and request that your concerns be addressed there directly. See what they say, and see if you feel things improve. For what you are paying, you should be satisfied that your mother is getting a high level of care. As I have mentioned before, quietly observe everything when you visit, watch how the staff interacts with the other residents. You did say before that the other residents generally look content and well cared for, those are very good signs. \And remember that a dementia patient cannot reason the way we do, may well refuse care even when asked in the nicest way and then have to go to the bathroom 5 minutes later (my DH does this, I'm an expert here.) I do think they shouldn't be calling you to manage her, that's the easy way out for the staff. Good luck. It sounds like your gut instinct may be telling you this isn't the right facility for her, but see if things improve after the meeting before making any decisions.

John2.0.1

Thanks. At some point I will likely call a couple memory cares and ask about similar things. Maybe before. Maybe after. I need to think more about my list of things.

jfkoc

You need to carefully read the contract and you want to know exactly what staff training is initially and ongoing.  Ask what the difference is in staff training AL/MC. You also want to see a copy of their license to see exactly what services they must offer

Iris L.

My mother did not have dementia but cancer.  She would not ask the sides for help but would wait to ask me. 

Me: why didn't you ask the aide?

Mom: I didn't want to bother her.

You have to get over the idea that your mom with dementia is going to rationally be aware of what she needs (help in going to the bathroom) or that she will verbalize to the aide.  The aides can't just ask, "how you doing?"  It may be time for them to toilet her every two hours.  "It's time to use the toilet."  

If you watch a few Teepa Snow videos, you will get some ideas about communicating with a PWD.

Iris

John2.0.1

I missed answering a question above on whether my mom spends too much time alone and in her room. Ever since everyone was vaccinated it's been harder for me to get Mom on the phone and so I believe that she spends a lot of time in the common areas. I don't know how much she interacts with others but at least he's got some stimulation and company. The facility managers tell me she's doing well. But given the number of times when we've spoken on the phone and she's clearly not well, I wonder how much distress she might be under with them not realizing.

zauberflote

Iris' comment could well apply to many (especially) women of a certain generation. Mom had dementia, and still would tell me she hated to bother the nice ladies, surely they were busy with their own things. She'd lost her earlier concept of "I'm paying for it, they can darn well make my bed!"

Some on here, me included, find ourselves a trigger for our LO's worst feelings to be poured out on the one they love. I'd get pics or videos from time to time of Mom clearly having a good time with the (younger, male, enjoyed flirting with the sweet old ladies) activities director at whatever activity was up. My avatar is Mom only 4 months before her death, clearly having a whale of a good time. Granted, I'm the one who took the pic. Granted, as soon as the ice cream social wrapped up, she wanted to go back to her room so she could "talk to me", which by that point meant her trying desperately to articulate her thoughts, mostly failing, and becoming more and more distressed until I managed to change the mood-- or staff would peek in and say hello, which would reboot the systems. 

Some have even watched their LO thrive in MC where they had not at home. 

So when staff tell you she's "doing well", she may well indeed be doing well until she has a mood turn or perhaps you call her and (like my mom)  her memory draws back to the good times which aren't any more.