Are these places for real? Two year waiting list for the dementia wing of a nursing home in Manhattan. What the F are we supposed to do with our LO's?

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Originally posted by Marjk:
Are these places for real? Two year waiting list for the dementia wing of a nursing home in Manhattan. What the F are we supposed to do with our LO's?

Marjk, I can't believe that one. Doesn't surprise me as must be the "golden" wing of NH. Is this where you're looking to place your mom -- sorry but haven't heard the latest news as to where you mother has been living.

Best to you

Yes, good Nursing Homes can have a long wait list. We have FIL on one now, and hoping that he will be called soon. Unfortunately the only way a love one will make it into the NH is one someone dies. See the problem with a good nursing home is they do take such good care of their patients, that it takes longer for them to meet their maker. Now with that said, make sure you put him on the list and call every month because the list can change rapidly.

Good Luck

Well this NH has only 22 dementia beds. They have a sister NH that has a waiting list that MIGHT be shorter, but it's not so close to me. Again, the problem with Manhattan is that there aren't really a ton of NH's and the NH's don't have a ton of dementia beds. Most people in Manhattan (i.e. ME) don't have cars so it's such a PIA to get anywhere.

She's still in the hospital, on the waiting list for the only decent behavioral NH that I know of in New Jersey, but she seems to be doing a bit better and I was wondering if she really needs the ridiculously expensive special NH.

Just venting, this whole thing sucks!

It's like you'd have to get on the waiting list as soon as you were diagnosed. I guess that there are some people who do things like that... I'm not silver spoon enough.

What do Manhattanites do with their demented???

damn! thats ridiculous and sad..well no surprise we know that there are many out there with this horrible disease...just keep researching it marj...i know its a bit more challenging with your mothers behavior issues but let us pray those are getting resolved at the hospital now...is pieberry in Manhattan also?? I can't remember...if not is there any available NH by her?? I wish you patience and luck...you have been thru so much.

kim

quote:

Originally posted by Lammie:
What do Manhattanites do with their demented???

I guess the wealthy ones hire many private caregivers. Others probably buy their way into these nursing homes. The rest of us have to send our LO's out of state. Luckily my sister lives in New Jersey. There are tons of ALF's and NH's there, although my mother cannot be in an ALF, she needs a NH. I guess this disease is for the very wealthy or the very poor. The rest of us get F*****!

Awww, Marj! I know how frustrating and scary this can be. Make sure you understand what the waiting list entails and how people are selected from it. My experience has been that the waiting list is not for people that are being discharged from a hospital after at least a 72-hour stay, when the discharging doctors insist on NH care. The waiting lists on the NH's I checked on before placing Mom were just for those instances when the home had an open bed and no one was being discharged from the hospital. Make sure you ask that specific question.

Also, the NH can select which patients they want to accept. The discharge coordinators at the hospitals fax your LO's records to the admissions department of however many homes you would consider using. Then the NH's let the hospital know if they have a bed for your LO. It's a complex process, but I found it very helpful to make friends with the social worker (discharge coordinator) at the hospital as well as the admissions people at the NH. This gives you an advantage when it comes time for them to "select" a patient for the next open bed.

Hope this helps! It's going to be okay.

Thanks DJ. I'm going to talk to the social worker at the hospital tomorrow. It's just so amazing that there are so few dementia beds in the nursing homes around here. One of the sisters at this nursing home is a patient where I work. She gave me her number and she's going to get me in touch with the "proper" admissions people. Hopefully she'll have a little pull. I feel weird asking a sister to help me get my mother ahead, don't even know if that's what she meant. Meantime we'll check out the places by my sister, but I have a feeling my mother will still need the behavioral place for awhile. I'm learning that this stupid disease has it's ups and downs, it's good days and it's bad days.

I HATE DEMENTIA

I know how frustrating it is when it comes to "good NH's" and their wait list. About a year and a half ago,,,I went to the "new state of the art" NH that opened up in our area.

Big,,,beautiful,,,all the amenities,,,,put Mom on the wait list,,,the list that nobody at the NH could give any type of "ballpark figure" as to how long the wait would be.

Ah,,but as time passed,,and no call's from the NH having an opening,,,,it was all still good,,cause Mom still had enough money to stay on at the ALF,,which is out of pocket pay.

So,,,after months of waiting to hear from the state of the art NH,,,I call,,,nobody knows a thing,,I was switched to 4 different people,,,that didnt' set will with me.

So sitting and listening to some of the workers at Mom's ALF,,,why,,,they have a LO living at the "state of the art" NH,,,and guess what,,,out of 3 people,,,not one of them are please at all with the care that their LO is receiving from the State of Art NH.

The NH does take "medicade",,,and the aides who work where my mom resides are not young 20 something women,,they are all middle age women who they and their sibs could'nt afford to place their LO in ALF,,so NH was the only option.

Two of these ladies are looking into other NH's that are older & smaller,,,to place their LO's.

So,,,maybe this is a sign. Its most probable that you will have to go outside of Manhattan into "suburbia" and find a smaller more suitable NH for your Mom. The only drawback for you will be the transportation,,,but you will find a way to overcome that obstacle,,,I know you !

Do what you can when you can for as long as you can,,,and when its not enough,,rethink the game plan,,,and ask the Dr for more help in good placement. Keep us posted. Peace

It's not that this NH is "state of the art". It's just that there are so few NH's here and many of them are HORRIBLE! This one is fantastic, right by where I work and my mother can keep her physicians that she had when she lived home. I really want to be able to visit her daily. I am realizing that that is probably not possible anymore and it breaks my heart. She has no concept of time, but I do!

Oh Marj,,,I'll be keeping you in my thoughts and prayers that you get a massive streak of good luck,,and are able to get your Mom in to that NH. Please speak with her Dr to see if there's any way possible at all,,that he can get her placed.....Even if she has to go into a different wing than the AD wing,,,Best of luck my friend. Peace & Blessings

It's all about the money. It takes money to provide care. The good places have to keep the cash flowing.

Those that take anybody in off the street directly into a Medicaid bed....well, they cut corners for the care.

It's a sad state we are in. Most of the good aides taking care of our LOs...they won't be able to afford the good places when their time comes. What goes around doesn't necessarily come around.

In this country, money talks. I don't know if that will ever change. This is why I really want to get her into a decent place before the money runs out. The cost to care for someone with dementia is unbelievable. of course everyone on here probably already knows that.

I was getting a little desperate here and I checked out the nursing homes that I was told to "STAY AWAY" from. They also have quite a waiting list, but I'm sure since my mother will be private pay for a couple of years, they would love to take her in. I have a friend who does nursing home inspections for New York City and I have to trust her when she tells me to STAY AWAY! This is just so frustrating trying to find the right place for her.

I'm a little too nervous about the non dementia wing of a nursing home. She really needs the supervision and the care that the dementia wing provides. I know this for a fact. She couldn't make it in a dementia only ALF and she couldn't make it in the regular geriatric psych ward, she needed to be transferred to the dementia wing.

I really miss being able to see her on a daily or almost daily basis.

Has your situation changed -- or do I have you confused with someone else? I thought previously you only had 4 months of private pay at assisted liviing. Maybe it was somebody else?

quote:

Originally posted by Always Learning More:
Has your situation changed -- or do I have you confused with someone else? I thought previously you only had 4 months of private pay at assisted liviing. Maybe it was somebody else?

Probably someone else. My mother has long term care insurance plus her apartment that we are selling. We should hopefully have a good four to six years of being private pay. I thought it would be more but when I realize how expensive everything is, I knocked off a couple of years. My mother is still in the hospital. Slightly panicked about what will happen when she reaches her Medicare limit.

Marj,
This may be a stupid question, but I'll ask anyway.
Since nursing homes in your area are so full, would it be a possibility for you to move near her and find a new job near her when she gets settled into a NH?

Marjk;
I've been following your journey with your Mom. I also realize she has behavior issues. But since you really want her in this NH with a 2 yr waiting list, can she not stay in her apartment until her turn comes? Once she leaves the hospital? Since she will be private pay, maybe you could hire 24 hr care for her. Once the right medication regime is found for her, this might be possible at least until she makes it to the top of the list. I've kept the Diva home, and she had behavior issues as well. She was violent most times, angry, and just mean. It was for those reasons I kept her OUT of the NH for fear of what the staff might have done to her. Now that she's in the last stage, she's so much easier to care for. I have to admit, I did have caregiver blues sometimes, but I chalked that up to the fact that we couldn't really afford the best caregiver agencies. You get what you pay for. However, I was blessed to find some really special folks who understood ALZ and wasn't in it just for the money. Okay, this is way longer than I planned, but I'm sure you will come up with the right decision for your Mom and yourself.

Blessings!

Believe me I've been toying with the idea of bringing her back home, but we know that is impossible. She still has a real stubborn streak and she still refuses her meds, although she is getting injectible Risperdal now every two weeks. She still has her violent outbursts so home care is just impossible. It failed last time and actually getting her out of her home the last time was near impossible.

JellyBeans - I WISH! It's not so easy finding new jobs. I would be insane to leave my job now. I would also have to sell my apartment which isn't so easy to do right now. I'll just deal with the car rental to go see her and still get her on the waiting list. By the time her name comes up then we'll decide if we want to move her or keep her where she is.

Of course no one knows where she'll be or even if she'll be by the time her name comes up.

Marj - does the nursing home know you have CASH? When we began our "journey" we looked at an assisted living that accepted medicaid (one of the few who do). At first they told us they had a wait list of 12-18 months, but once husband and SIL went to tour the facility and were asked "where does mom live now" and they said that she owned a home... well... everything changed and they had a room for MIL if we wanted it -- because after the house sold she'd have the cash for private pay for 5+ years.

I'm going to call the sister from the NH and have a meeting with her. I'll let her know that we will be cash paying for a few years. I'm sure there are many though that are cash paying when they have only 22 beds. The not so wonderful NH would probably be thrilled to have cash paying residents. Believe it or not, the not so nice one is way more expensive.

To be honest, the hospital where she is now houses the behavioral NH. They have a "regular" NH on the grounds. My sister and I are really happy with all the places there so far. So if worse comes to worse, I just travel further to see her and I see her less often. Most people don't even see their parents as much as I still see my mother, but I'm used to seeing her daily or almost daily. At least speaking to her multiple times a day. I'm the one who has to get accustomed to this new relationship. I just got my hopes up a little that I could move her to be closer to me. But, that's what this disease does to us. It gets our hopes up at times just to be crushed.

Since she has behavior issues...I would just get her in anywhere to start. Hopefully, over time she will calm down..then you will have more choices and can move her to a more desireable place.

That could only be a year away with proper medications, etc. (hopefully). Your choices are going to be limited as long as the behavior is an issue...but over time, she may calm down anyway as the disease does change. So you can't spend a lot of time worrying about places that may not take her anyway.

Also I don't think changing jobs is the answer either. Things can keep changing...you're better off to stay put as she is the one who may need to change,and you probably have vacation built up, etc. Hopefully and understanding boss.

New employers would not want to put up with turmois from new employees -- ie you need to concentrate on your work, not be trying to learn a new job and dealing with Mom.

True. And right now no NH will take her with her very recent behavioral issues. I'm not even sure we're in the clear with her issues yet. The only good thing is that she really bonded with one of the caregivers at the hospital so she's being good for her. I'm going to hate to take my mother away from the one caregiver that she has bonded with, but she can't stay in the hospital forever.

My boss is very understanding. He has two parents plus an uncle in their 90's and he is the primary go to guy for EVERYTHING for the three of them. The chances of me getting another boss like this one are close to nil. He worked out my schedule with me so I can have off every other Friday in order to be able to go see my mother and have time to get work done for school. Come to think of it, the next time I complain about work, I'm going to shut up. I just realized how good I have it.

quote:

Originally posted by NinaC:
Marj - does the nursing home know you have CASH? When we began our "journey" we looked at an assisted living that accepted medicaid (one of the few who do). At first they told us they had a wait list of 12-18 months, but once husband and SIL went to tour the facility and were asked "where does mom live now" and they said that she owned a home... well...
everything changed and they had a room for MIL if we wanted it -- because after the house sold she'd have the cash for private pay for 5+ years.

Nina, I will confirm this happens in our area. Have a good friend who works in marketing for a large retirement facility where I live. She told me if patient can do cash pay for 2+ years they really look to fill beds with them before the almost out of cash people on the lists. These cash pay people jump up on the list.

As the old saying goes -- "money talks"!

Hello...Have you checked with her DR there to see if he knows of any residential homes? I knew nothing about them until Mar when I said something to ours. These homes here are funded my Dr's and managed by nurse's. Don't know about NY , but as far as money goes it is truly saving our butt's, since all the facilties I checked were like $5k a month and this is $2k, plus it is not a facility...

Was your Dad a vet during war time? It took me 6 months to get it but we got back pay to Feb of $8k and now she gets $1100 a month so with her SS I don't have to spend too much of what's left.

If you can't find anything about a house from her Dr, try (aplaceformom.com), they gave me a few houses to look at too.

Good luck, it is totally frustrating I know, and undoubtly it doesn't get any easier you just learn to deal with it.

Placement is such a huge issue--between emotions and money, it is a minefield. I have been told by both a NH and my elder law attorney that in a facility with multiple care levels, the NH beds go first to the people in their own ALF who need increased care. The attorney added that behavior issues make placement difficult. Yet, the private pay is a huge incentive. So, I guess, there are multiple factors as to who gets the beds. Hope it's your turn soon.

Intookst - yes my father was a vet. Someone just forwarded me the website to get forms. I hope she can get some money out of that for her care. Unfortunately I can't find any of my father's army papers. I have to remind my sister to call my uncle to see if he might have some or at least have more accurate information for us about actual dates of service. Every little bit helps!

Claudia - the problem with NYC is that there are SO MANY people here who are private pay with way more money than we have and there are so few beds here. We have a better chance of getting her in somewhere in New Jersey.

Unfortunately with my mother's very recent behavior issues, no NH will take her yet. The residential homes by my sister are huge, way too many people. I wish I could find one with less than 10 people but they all seem to have more than 20. It's sad because it would be so affordable if we could do that.

Luckily we are working with a fantastic social worker who is really trying hard to help us and she is a real advocate for my mother.

This disease just sucks the life out of me. Seriously, if my doctor ever tells me that I have AD - I'm jumping off a bridge.

Hi Marjk: I went through the same thing. It was hard finding the right place for mom regarding the severity of dementia & the fact that she was wheelchair bound & incontinent. All of the good places have a waiting list even on Long Island, go figure. I contacted Eldercare.com & then was notified by A Place For Mom. They were able to help narrow down the search. I had to settle for a place that was 45 minutes away from me. Good Luck with your search!

I know the place we find will be quite far from me, but hopefully it will be close enough to my sister. I've been working with A Place For Mom, but they keep suggesting places that we've already been turned down or kicked out of.

I'm off now to go visit her and meet with the social worker.

It seems like the weather always sucks when I have to take this long drive. Now we have the remnants of Hurricane Ida, UGH! I just hope that whatever place we finally find for her has public transportation close by.

To Marj - don't rush looking for those military papers. Based on what you've written here, I can tell you that your mom won't qualify for a very, very long time because of her assets.

quote:

Originally posted by Lammie:

What do Manhattanites do with their demented???

Give them licenses to drive taxi cabs.

quote:

Originally posted by Zheeeem:

quote:

Originally posted by Lammie:

What do Manhattanites do with their demented???

Give them licenses to drive taxi cabs.

LOL, that was really funny and unfortunately true.

quote:

Originally posted by NinaC:
To Marj - don't rush looking for those military papers. Based on what you've written here, I can tell you that your mom won't qualify for a very, very long time because of her assets.

Hello again, I couldn't find where you said about her assets, but there way is excluding your home & car it has to be under $88k a year, but you get to deduct everything that she spends now and has spent this yr...everything so it certainly couldn't hurt for you to at least call them, I wasn't sure we would make it either but after deducting all her stuff we did. All the VA can tell you is no:-) Money is money and I will fight very hard to get my hands on whatever I can to take care of her...Good luck again..

After we sell her home, we should have a good 5 to 7 years worth of money for her care before we run out. Of course that's provided nothing major happens (like running out of Medicare before she gets into the nursing home so we have to pay out of pocket for the hospital). I am going to try to speak to someone to see if I should wait to fill out the forms or do it now. A few hundred dollars more a month can be quite helpful with the ridiculously high cost of dementia.

quote:

Originally posted by Intookst:

quote:

Originally posted by NinaC:
To Marj - don't rush looking for those military papers. Based on what you've written here, I can tell you that your mom won't qualify for a very, very long time because of her assets.

Hello again, I couldn't find where you said about her assets, but there way is excluding your home & car it has to be under $88k a year, but you get to deduct everything that she spends now and has spent this yr...everything so it certainly couldn't hurt for you to at least call them, I wasn't sure we would make it either but after deducting all her stuff we did. All the VA can tell you is no:-) Money is money and I will fight very hard to get my hands on whatever I can to take care of her...Good luck again..

I don't think it's EVERYTHING you spend -- it's money for medical care. Assisted living at a facilty, yes. Home health aides, yes. Clothes, no. Prescriptions, yes, medical insurance, yes.