Looking for MC resources in NYC

Chela Z

Hi everyone,

I just joined the group today. My mother, who is 96 and has advanced dementia, has been cared for in her apartment in NY (I'm in CA) for the past 4 years by a live-in person who manages her care, plus now 24-hour a day aides who come in and take care of her, helping her get to the toilet, making meals and reminding her to eat, reading to her, etc. This all fell apart about a month ago when several of her caregivers, including the live-in person, were diagnosed with COVID and were not able to come in. We were down to one person who stayed with her even though she was getting sick herself, and finally, after a positive COVID test, Mom went to the hospital, although she never developed symptoms. Given that the caregiver situation was in disarray, we put Mom in a MC facility, breathing a sigh of relief that she was in a place where COVID was being managed and where there was back up in the event of workers getting sick.

Well, as it turns out, the MC facility does not provide close to the level of care that Mom was getting at home. They check in on her ~2 hours or so. They don't make sure that she eats. They don't get creative when she refuses to take medications. She is now incontinent and she sits around in soiled diapers for 2 hours or more. Their protocol is that showers happen once a week (sponge baths other days). They have no way to watch her at night, and the first night there she fell. Is this typical of what to expect in assisted living/MC facility?

If anyone has any recommendations in NYC for a better place and/or someone who could help manage/oversee Mom's care at home so she could return, I would greatly appreciate it.

M1

Welcome to the forum, what a difficult position to be in. I have no personal experience yet with MC but no, this does not sound standard. If you cannot travel, can you tour places virtually? Sounds like speaking to the directors by telephone or zoom would be even more important.

There will be others here who do have experience to share. At 96 I'm sure any transition would be difficult but this sounds like neglect.

harshedbuzz

I am sorry you are dealing with this all and from such a great distance which makes everything so much harder.

A couple of thoughts-

1. A geriatric care manager could be a resource. These people tend to come from a nursing or social work background and can be your eyes and ears on the ground as well as an advocate and problem solver for you. 

2. It sounds like your mom's need for care is beyond the scope of a MCF which by law have to respect her autonomy and have standards of care lower than she requires, While MCF do allow residents to "age in place", as needs intensify the expectation is that you would hire extra care as needed. This is seldom spelled out on admission. 

3. To my ear, it sounds as if your mom needs a higher level of care. Perhaps a SNF would be a better option than a MCF at this point in time. While my dad died in MC, my aunt lived so long that the higher staffing levels and approach to hygiene in SNF became a better fit for her. Initially, she spent most of the day in the MC area doing their activities and having meals, but she spent nights and showers in the SNF wing.

HB

Michael Ellenbogen

All I can say is wow as you did such a great job proving for her and it is sad that you need to deal with idiots in this world.

 

A few people you may want to speak to

 

Jangir Sultan - Founder at Patient Advocates of NY

Christopher Perna - Board Member at Dementia Action Alliance

Allen Power - Geriatrician, Author and Educator

Teresa Galbier - Chapter Executive, Alzheimer's Association Rochester & Finger Lakes Chapter

 

One of this folks should be able to point you in the right direction. 

Marta

Michael - What idiots would you be referring to?

Chela Z

Thanks HB. It is good to have this reality check.

Michael Ellenbogen

The MC facility

DDNNYC

I'm sorry you and she are going through this.  Is there a particular reason for her to stay in NYC?  Does she have other family or friends nearby?  I ended up putting my mom somewhere outside of the city primarily for my convenience, but realized how much less crowded and busy places were outside of the city.  Much easier to get staff on the phone, etc.  I don't know if the end result would be any different, but just throwing that out there.  Good luck!

dayn2nite2

If she has to move anyway, why is she staying in NYC?  The most sensible thing would be for you to move her near you and you can oversee the facility you place her in.

I'm not understanding the need to keep her in a place where she has nobody to advocate locally for her.