MC and right fit

darcytg · December 2023

Hello Everyone,

I just got off the phone with the Director of the MC that my LO's likely to go to.

I asked how they determine whether assisted living community or MC community portion of their facility is the right fit for a PWD.

She indicated a visiting nurse comes to the home for a mini test and self reported (!) interview of what the person needs, family is welcome to chime in on the interview ( with the PWD present) . Additionally, they consider her doctor's paperwork. Her regular doctor didn't even have the neurology results on our last visit and I supplied them. Nowhere in the neurology test result documents was there any of the verbal information the neurologist had provided ( at our 2 very brief appts). The main things being: no driving, medication support needed and "you can't be alone".

I supplied the neurologist with my observations (provided in the format suggested by alz assoc ) discretely and prior to the appt where tests results and dianosis of AD moderate were given.

The Director of the MC community was completely unfamiliar with Tam Cummings and the dementia behavior stages. Granted, I'm over tired and not communicating as clealry as I like to be.

Previously, I had called the assisted living staff in the middle of the night ( because why not get info from the front line folks when you're awake and alone, right?) .They were kind and helpful and indicated that 1 hour aonth of continuing training is what the MC staff receive. Sure would like to know more about the topics and philosophy.

The Director indicated that safety is paramount. Currently, my LO hasn't wandered. I suspect that will change with the move. Here she has familar and unique to her sundowner routines. A new environment and not being able to smoke at-will, will likely make her stress much higher...for awhile.

What should I be asking and looking for as my .02cents are considered with respect to effective MC staff and assisyednliving enviroments?

No one was smiling on either the resiedence or MC side when I stopped by during a brief self respite over the Thanksgiving holiday while my nephew was here with my LO.

Appreciate any help you can offer.

Thank you.

Am I nuts or all this nuts?

M1 · December 2023

Kind of a red flag that she doesn't know Tam Cummings and the stages. I wonder how you could inquire further about this...maybe you could ask to see their training materials? Maybe talk to the director of nursing? maybe name drop a little more, such as mentioning the careblazers videos and Teepa Snow as well. If she's not familiar with those, id really sit up and take notice. I'm sitting here trying to think of a valid reason why she wouldn't know this stuff and am having a hard time thinking of one.

Do you have any information on other places that the POA may have screened, or do you have a sense of how this place was selected? I think it's important to listen to your gut instincts here, and if you didn't get a good vibe I'd pay attention to that.

darcytg · December 2023

M1, thanks for the response.

Your presence and words mean more than you can imagine.

I will find a way to make inquiries and hope that my LO's POA finds skillful best practices care more important than proximity.

A terrifying maze where I have little voice.

And my LO is in one of those spaces where cognition is higher than it has been. So she's very aware of the move and leaving her home and fearful....

Grateful for everyone here, so verybmuch and holding us all in peace, light and love.

Anonymousjpl123 · December 2023

I would expect more from the MC director, and if you are feeling so much hesitation, that means something. Has the POA checked out other facilities? For me, it REALLY helped to see more than one, not only to compare prices but to compare the feel, my comfort level, my peace of mind. It’s so not my style. I rely on others with a buyer’s skill set for cars, big household purchases, etc. But for this, I checked out a lot of places and read the fine print.

I would take quality of care over proximity every day of the week. I would also share your thoughts with the POA. Your LO is lucky to have you.

harshedbuzz · December 2023

TBH, I am not particularly all the surprised the director of the facility isn't all that familiar with the progression arc associated with various dementias. If this is a larger facility with both AL and MC (and maybe even a SNF/rehab) as part of a complex, this person is going to have an administration background rather than a medical or caregiving one. They're responsible for maintaining physical plant, managing human resources, balancing books and keeping the place compliant and safe.

Often the person to whom you speak before admission is the sales director whose job is to fill beds. Often they operate under a kind of bait and switch model because it's a rare family who realizes how much scaffolding they've been giving at home which leads to the opinion that mom doesn't need the higher acuity care of a secure MCU. The director may be assuming you would prefer the cheaper AL model that offers more independence.

The DON, nurses and aides are the ones who should know all about dementia. The one facility that turned dad down sent their DON to the house to conduct the admission interview. Most places want you to bring the PWD to them which can be a challenge but does weed out those PWD who aren't cooperative with caregivers.

When I toured, and it was a dozen places, I always asked the aides care specific questions. I also talked to other families in the parking lot when I could. They were always helpful and many had stories of places that didn't work out for various reasons which was useful to have.

HB

darcytg · December 2023

Harshedbuzz,

Thank you for your response.

My LO's POA has toured a few and had been talking about the place around the corner for some time. It is prettier and has better food and homier feel on the assisted living side.

The place is an age in the " community" and the MC section is called the cottage. In my very brief and emotional tour over Thanksgiving weekend the marketing person gave me the tour of assisted and MC cottage, did not offer to tour the highest level of care at their facility. I very much got the pitch and info on costs for the lovely apartment type rooms, as well as, the costs for MC cottage shared bath split room.

The person I spoke with on the phone yesterday was the director of the MC cottage. The place has no endorsements of any alzheimer's organization.

I will figure out who the head of nursing is and ask questions....not sure it will matter, as I am not the decision maker.

Please guide me as to the questions I need to ask. Thank you all so very much.

This is by far the hardest opportunity of my life and I feel I am about to throw my LO to the wolves.

darcytg · December 2023

https://alzconnected.org/discussion/comment/192651#Comment_192651

Thank you .

My gut is saying this place is the least awful, on the surface.

And it's so difficult because I and the POA have very little direct communications without my LO present.

We had been going the route of 24/7 in home care and due to circumstances beyond the POA's control have had to find a place outside my LO's home.

With my LO's anosognosia all routes have been creative and hard.

Beachfan · December 2023

Hi darcytg,

I don’t know the nuts and bolts of your situation, but here’s another 2 cents. I spent 2 years researching, visiting and phoning facilities for DH, “ just in case”. I had hoped and planned to keep him at home until the end. Long story short, I narrowed the selections down to 3, one of which was within walking distance of our home. The other 2 were about 40 miles from home, one way. Those farther away were stand alone MCF’s. They did nothing but care fore Alz/dementia patients. He was placed, after 11 1/2 years at home, about 1 hour away. His home was a cottage with 16 residents when full. He had a private room with 1/2 bath (was only in the room to sleep). The monthly cost ($6200.00) was all inclusive and private pay. It was quiet, clean and cozy. He was able to “age in place” there, and with only 3 1/2 days of Hospice, he passed there in April after 17 months. He was clearly well cared for and well loved, as were all the residents. It broke my heart that I didn’t keep him at home, but I have no regrets about his placement. Truth be told, the placement was more for me than for him. He was content from day one and I was able to regain some semblance of living. Best of luck with whatever path you follow.

M1 · December 2023

Just another two cents: fit does matter, depending on the stage of the disease. I had to place my partner under duress in April 2022 after threats of violence and not recognizing me, not being able to provide safety on our farm with multiple hazards and not being able to hire home help that she would accept in a rural area. My first choice facility wouldn't take her because she became agitated and violent when the hospital let her withdraw from narcotics which she takes chronically for scoliosis (that's another story and a nightmare). The facility I placed her in was relatively small, and I did not account for the fact the she is a lifelong introvert and clautrophobic--there was not enough space for her to be able to distance from other residents. She was extremely unhappy, and I had other chronic communication issues with the staff also. But when I realized the impact of the claustrophobia last winter (about this time), I asked my first choice facility to reconsider and moved her in April of this year: it has made all the difference. She is still not completely content, still asks me about going home, but light years better because there is more space, indoors and out.

darcytg · December 2023

Thank you M1and Beachfan for sharing your experience.

Today I conference call meet with my LO'S niece and POA to begin discussing relocating my LO across country.

Have no idea how things will work out.

All I know is this is scary. I'm running on empty due to lack of sleep, excercise, nutrition and stress. My thinker is alow and muddled.

My LO has had several days of "presence" and seems to be crashing now.

Peace. More later

darcytg · December 2023

Update...

Don't know why i am compelled to update, yet here I am.

MY LO's now waitlisted for 2 facilities near her family....3 to 6 months.

Meanwhile, moving forward placing her near her current home within the next month. After that I hope to stay and suport transition for at least a week. Not sure I could bear moving her and getting on a plane the next day and not sure how to hang around and titratie the visits.

Back to figuring out what the chosen facility's philospohy and training, etc are... hoping my initial experiences are not indicative of the whole picture.

Thanks for listening and being there.

I deeply wish I could take my LO home with me until she can be near her family.

Emily 123 · December 2023

Hello Darcy,

I ask these questions:

What are the staffing to patient ratios and the credentialing of the staff? What's the credentialing mix they staff for? Do they have patient's families using private nurses/aides for care or are they able to handle it themselves? Usually there will be more staff on during the days. Ideally you want an RN on staff, preferably acting as the healthcare coordinator, with LPN's, med techs and aides as support.

Ask them to list what the facility considers 'nursing care' that would require a transfer to an SNF (skilled nursing facility). What percent of their MC patients have transferred to a SNF in the last few years?

Example of things that might fall under nursing care: Pressure wounds, requirement for hand feeding, need for pureed foods, two-person assistance for transfers or use of a Hoyer lift? Memory care's tend to fall under special needs licensing but don't always have 'non-ambulatory' licensing, so it would be preferable not to have your loved one in an 'MC Lite' that doesn't support end-stage healthcare issues like the need for feeding or use of a lift. Facilities are licensed by their state's Department of Health, and they may publish inspection reports-see if you can find them.

This is Virginia's site:https://www.dss.virginia.gov/facility/search/alf.cgi

Also ask them if there are services they can't provide because of staff shortages.

What are grounds for asking a patient to leave, and if that happens do they assist to find new placement?

What happens when the private pay funds run out?

Are both showers and baths an option? What is the bathing schedule?

What are added on costs?

Is there in-house medical care? podiatry? Dentistry?

How do they deal with food preferences?

jfkoc · December 2023

and...communicate as much as you can in writing

jfkoc · December 2023

darcytg · January 4

Thank you Emily and jfkoc.

I have passed along your suggestions.

Things have changed rapidly for me here.

I developed pneumonia and am going home after I'm no longer contagious.

My LO is headed toward 2 moves in the next year. One from her home and another to be near family when space is available near them. I wish I could hold her hand the whole way.

My short run as a 24/7 care giver as afforded me an education, awareness and appreciation that no other opportunity in life has given.

Now what do I do with this bizarre gift?

Not sure how to remain connected with my loved one. Hoping to find a way.

Hoping I heal well at home.

To everyone here, thank you for being here and sharing. This is an amazing place.

MC and right fit

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