Researching FACILITIES: Care Managers? Who to trust? What questions to ask? Where to begin?

Mollykazoo

My husband is only 56 and probably in stage 4. I understand that it's important that I research options for memory care now (or soon), because things can decline abruptly with early-onset AD. I got a list of "care managers" from the Alzheimer's Association hotline folks but they were careful to tell me that they "don't endorse" anybody on the list. The list is lots of just individual's names and I guess I worry that this is an area where there could be potential scammy behavior…?

I have no idea why I think that. Maybe I'm being paranoid. Bottom line is that I'm confused about how in the world to find the best possible place for somebody who is still young AND that will accept Medicaid, since we don't have the means to pay out-of-pocket for MC. Seems like sort of a unicorn situation I'm in.

Does anyone out there have experience/advice about using a care manager? Are they expensive? How do I find an actual referral for one that is good?

I heard about a local memory care facility that seems incredible. It has a shared campus with a montessori school, so that part of the programming is cross-generational with children and elders regularly interacting. They do not accept Medicaid (perhaps not surprising?)…

Feeling lost. I will so appreciate your input.

Molly

M1

Molly, I would suggest starting with your local Alzheimer's Association Chapter. they can probably tell you which facilities accept Medicaid, if any. Be prepared that the answer may be that none do. In some states, Medicaid only covers nursing home care, not memory care. But you don't know until you ask. Your local chapter may also know if there are any local grant programs that you may qualify for.

Good for you for getting this homework done.

clarinetist

Hi Molly,

So sorry you are facing this situation, but this forum is a great place to get advice. A good place to get on-the-ground info is your local Alzheimer’s Association support group. My fellow support group members recommended two care managers, and the one I have is great. Google Community Resource Finder, which is a combined Alz Assn/AARP site, click on AA programs and events, click on Alzheimer’s support groups and put in your zip code. Then touch go. You’ll get a list of support groups in your area.

Support group members are an invaluable source for all kinds of info. Through my support group, I found out about doctors, adult day cares and memory cares from people with first-hand experience.

Mollykazoo

I've found a local support group and it's on my calendar now.

Thank you both!

​fesk

Hi Molly,

You can also plug your zip code into this site and review the care managers in your area and their qualifications.

https://www.aginglifecare.org

I recently hired a geriatric care manager. I called and spoke with them first. Met with two. One wasn't a good fit, but I liked the other. And, yes, they are expensive. I actually liked the the person that wasn't referred to me better.

sandwichone123

I've seen lists posted of things to ask at assisted living or memory care visits. One thing that I don't see often that was important to me was about facility ownership. Corporations exist for profit and I hoped to find a place that was owned by one or more people, optimally locally.

My dh's facility also partners with a nearby (they share a back fence) daycare, which my dh loves!

Lholl

Hi Molly,

My family has recently worked with Care Advisors, who are specially qualified to help with placement, to research memory care for my 66yo mom in 2 different states. They are no cost to you but incentivized/paid by the community you end up joining.

We’ve found that despite them essentially working on commission, they are kind, compassionate, extremely knowledgable, and really advocate for you, even when it comes down to trying to lower costs or connecting you to travel nurses and other resources. They have gone above and beyond for us. They will know who accepts Medicaid and will go on visits/tours with you and ask the questions you might never think of.

Some are regional, some are national. Here is one example:

https://assistedlivinglocators.com/

Jeanne C.

The social worker with the memory care practice my husband was being treated at provided a couple of care advisor names. I used one to schedule a few MC visits. She was nice enough but I very much felt that she was particularly invested in pushing me toward a specific facility (where the salesperson was especially friendly with her). It definitely gave me the feeling that money was the driver and not my husband's needs. Just make sure you do your own research, too. In the end, I have a couple of options just in case. The plan, especially now that he's on hospice, is to keep him home unless he truly needs skilled nursing care. But I can only do that because we have fulltime aide.

CStrope

I thought I had done my homework, but am finding that the Memory Care Facility that my husband has been in since 4/1 was a very bad decision on my part. Here are some of the things that I wish I had known or figured out before placing him.

1. They have 20 beds, and had 4 openings when I toured. That should have been a red flag right there!
2. Ask what certifications their staff has and what the ratio of staff to resident is. DH's facility only has personal care workers, no CNAs! The "director" has her CNA, but absolutely no managerial training or skills.
3. Is there a nurse on site at all times, or how often does their nurse visit.
4. If no on site nurse, is the nurse that they work with on call at all times?
5. Do they allow residents to remain at the facility until they pass away, or do they get moved when they progress to a certain point.
6. When you tour and/or visit, go several times and at different times of the day. Are there other residents with visitors? I ask this because the majority of the people in DHs facility have been there quite a while, and most have very few visitors if any. That means there is no one that keeps an eye on things. I go once, sometimes twice a day, so I notice a lot of things that a family member visiting for an hour twice a year would never notice.
7. What does meal time look like? Especially since your DH is EOD, it is important that they recognize and adjust the portions and food choices for his age. DH is 10+ years younger than everyone else at the facility, but the staff prepares the exact same plate for every resident. I find that I'm taking snacks to my DH every night just so that he's not hungry.
8. Can staff members see what/where residents are at all times that they are not in their rooms? Is there an easy line of sight to the common areas and any other hallways where the residents may like to walk. My DH did a lot of pacing, and there were falls or incidents with other residents that the staff never had a full picture of what had happened because of the setup of the rooms and walls at the facility.
9. And finally, look around at the other residents. Do they appear clean, are they dressed appropriately, are they left sitting in front of a tv or alone in common areas for long periods of time. And does the staff seem to be interacting with the residents, or are they merely just providing the bare minimal needs.