Hi, it's me again.
I was thinking, if mom will need care as alz progresses, wouldn't it be wiser to have her live in assisted living and use her savings for that since it is about half the cost, then when money runs out, she will have to go on medicaid and go into nursing home. I don't understand why anyone with money in bank would put someone directly in nursing home when assisted living facilities care for alz patients, charge half of what nursing home costs, and is very dignified living. Am I right in this thinking? thanks again
maryann (again)

Maryann, my understanding is that assisted living is for fairly independent, early stage patients. Once they get to a stage where they can't really think for themselves, they need more intense care than that. By the time we even noticed that Mom had dementia, it was already too late for a place where she would only get a minimum of assistance. I am not sure if these places are the same in different states/countries. Maybe someone out there knows exactly what the difference is between assisted living and full care?

Thanks.

Martha

Hi Maryann,

(I'm Lynn. I post when I can. My Mom died 6 years ago from heart disease, but the real disease--the one that took her mind--was the onslaught of TIAs (tiny strokes causing dementia).

Although we were able to keep my Mom at home (we got her a separate apt in our apt building and got two aides), we did look into assisted living first. I never inquired about nursing home expenses, as she was pretty much able to manage, as long as there was assistance.

Here in my NYC neighborhood, there's a very lovely old hotel that was turned into a combined assisted living/nursing home. The architects managed to fully convert the building, yet still retain the striking 1920's "grandeur" of the lobby and old ballroom (now the residents' dining hall). I spoke with some of the residents and all seemed extremely happy there (well....as happy as you CAN be, when you suddenly need Assisted Living!!)

At the time, the cost for a room for my Mom in the Assisted Living section would have been $4,000 a month. So...you have found that the nursing homes are double this? :eek:

What we liked about the place was the fact that Mom could take advantage of the assisted living section (which involved trips to concerts, theater, etc) while she was able to. But, if she got worse, she could move to the nursing section (same building) and still have the same familiar environment. I think that Assisted Living homes that have this "switch-over" are real life-savers. They prevent the constant worry of that dreaded phone call from the building administrators, telling you it's time to find your mother a new place.....one that runs 24/7.

From my few visits to nursing homes here in New York (I did volunteer work in one), I decided that the move from our old family house into an assisted living situation would have been far less "shocking" for my Mom, who was still very much "with it", in many ways. And, with Mom's TIAs, there was no real timing anyone could give us on how long she might stay at each descending level. (Whatever the type of dementia--they all leave us carers in limbo. You just cannot "plan or plot" this illness.There is no way to time the decline.)

At any rate, it turned out that we got that apt. in our own building for Mom...so we never needed to make a choice. But, my own feeling is that my Mom would have done 100 percent better in Assisted Living--she was such an independent person. (SO independent, that, once she was in her new apt...our doorbells often rang. You'd open your door...and there would stand one of her aides...to say that my mother had insisted that she was just fine,and that, say, Sabrina should "go on home now, so you can enjoy being with your two children.!!!" LOL! And, Mom was so convincing that, in the beginning, they would both allow themselves to be escorted out!!! :D

Have you visited some Assisted Living places, yet? The location---how far away from your own home--will aso make such a difference, depending on how often you will visit. We wanted to be close enough so that if Mom phoned, feeling mentally or physically unstable in any way, we could just get a cab and go to her.

(The Medicare/Medicaid situation is insane, isn't it--being forced to spend down to poverty level. It cost such a huge amount just to keep Mom in this new apt (with aides) that in a couple of years we realized that we had had to spend half of her life savings. I'm so glad she was not aware enough by that time to see how she and my Dad's money had to be spent. And I was soooo glad that she'd taken her wonderful trip to China, just before she got ill!)

I feel so much empathy with everyone on this board going through all these similar situations. I remember not knowing WHERE to turn and having to do so much extensive research that I should have been awarded a Ph.D.! (...the "D' standing for "Dementia"!!!) Yes....extracting each bit of information I needed along the way was like falling down that "White Rabbit's hole straight into the world of "Jabberwocky"!!! Aaarrrggghhh! :confused:

I'm sure others here will have more specific info to answer your question. A lot has changed since the '90s, when I first wandered through the maze. Wish I could help you out more.

take care...and hello to those who know me (and to those who don't!)! Lynn :-)

Hi Lynn
I actually live in Rego park in NY and work in NYC. My close friend checked out Sterling Glen Assisted Living which is right near my apt. (it's in Kew Gardens) and said it is unbelieveable. They are right by the Grand Central Parkway and my plan would be to take mom out of the Assisted Living and bring her to her house in Mineola NY on the weekends. This would be down the road since my dad is still doing okay (at 89) and she is in early stage - so I am just gathering information. Can you tell me the name of the place in NYC you were talking about? Maybe I can get the information if I need it in the future. This situation is causing such stress in my life - I worry about things that didn't even happen yet, and the different ways I can handle them, and the scenarios play in my mind over and over and I get more distressed. It's hard not to do this, but I am trying. I live in a small apartment with hubby in Rego Park; parents in mineola, we visit every Saturday and I help with laundry and shopping. Nursing homes are a big rip off and it is very annoying to think of the cost. I also feel that a live-in is very expensive (about $3200 a month) and that would not be a nurse (believe it or not a nurse $50 an hour, yes $50 an hour). I don't know how she would react if dad goes first; that moment will change my life forever. I hope I don't just fall apart. I have two brothers who live near my parents and I hope they do more than they are doing now in the future.
thanks for listening, and I would love the name of that residence in NYC>
maryann

Maryann,

Here in NV they have several different types of assisted living homes, residential senior homes, and then full nursing assistance homes. It would depend on the level that your family member was at as to where they would be accepted. We have several alzheimers facilities that patients with dementia from the first stages that only effect small parts of their daily routine and life to the extreme end of the "imposter" stage. A few can handle the full range such as the one that Twinlynn mentioned that is in NY.
My mothers physical ailments that were causing the dementia would have caused her to be placed in one area, and my father with the alzheimers memory and retention issues only would have him placed in a separate building. They had been married for over 50 years and never apart once my dad came home from the military, I was not about to tell them they cant be together in the end so moved them both in with me and this is where they both died.
Different states and even cities handle the elderly issues differently... You will need to see what facilities are in your area, but what I did discover here in NV when I was looking into the situation that medicare will only pay a portion of any facility depending on the amount of assets the person has, and they go back sometimes 2-3 years and question transactions. Medicaid will not pay if the person owns any property or has income beyond their actual required financial obligations. So basically you have to be homeless and pennyless to get medicaid, oh and the fact that my father gave 23 years of his life to the protection of this country, fought in three wars, and received the purple heart did not help him in this. It actually did more harm because he qualified for the assisting living facility that is 2 hours away from our home, but moms condition was to severe and she did not qualify for that home but did qualify for a home that was government approved 3 hours in the opposite direction from my house. So basically it would take me 7-8 hours to get one or the other to each other when the time came for them to say good-bye. Oh and if that was not enough the real kicker that had me storming one day is that medicare and medicaid accepting facilities here in NV require that you fill out an application, and then you will be notified if the person is accepted. One place actually said that they require that you are on the waiting list for at least 3 months and they also required documentation supporting the illness and care that would be needed. My moms illness was a rollercoaster ride and they wanted me to tell them what type of care she was going to need three months in advance? Heck I couldn't have told you what was going to happen with in the next hour concerning her health.

I wish you luck and the strength to restrain from choking anyone from frustration. It frightened me enough that at 40 years of age and in perfect health, to sit my teenage children down with me and my husband and explained our wishes, and we even made arrangements that all our entire life's savings wasn't spent on our decline. It is sad to think that is only seems to get worse.

And hello to you also Lynn :-)

C

All of these responses are great. We went through the gambit of researching levels of care for my Mother (pulmonary patient, not AD). We visited assisted living facilities as well as nursing homes when we were trying to figure out what she needed. The assisted living facilities that we checked out generally had active social programs, shuttles to stores, etc. There was a dining room for common meals, but the residents were responsible for their own apartments/rooms, and nobody checked daily to see if they were taking their medications. If the residents wanted cleaning services or special care, everything was an extra charge. The resident's apartments/rooms did have emergency call buttons designed to provide security for the elderly. They told us that my Mother wouldn't qualify since her health wasn't good enough for assisted living. A few of the better ones were willing to take someone who would eventually need nursing home care, and even had affiliations with nursing homes already established to guarantee that there would be a placement when that time came.

After we realized that Mom needed more care than Assisted Living, we tried home health care aides from two agencies. My parents saved a lot of money over a nursing home, but the aides weren't all that great. A few times an aide didn't show up. One of them got into a fight with my Dad (that's another story) and I tried to mediate from 450 miles away. The aides didn't want to spend their days or nights with a seriously ill woman, and my parents weren't happy to lose their privacy. (The agencies had difficulty finding and keeping employees in this tough job, and the women who helped by Mom had become aides by participated in a welfare retraining program.)

We then started hunting for a nursing home. We visited almost ten, and they ranged from ok to awful. They also had intensive health screening, since there are different levels of care. Some of them wouldn't take patients who were so seriously ill that they might die (they had a term for it, but I've blocked it out). It was clear that the staffs were trying to do their best at all of them, but they sure can be depressing places. The lounges were full of sleeping patients in wheelchairs in front of blasting tvs. Worst of all was learning about the waiting lists at most of the better ones. Some of them also insisted that you have the financial ability to pay for as much as a year before Medicare kicks in. They didn't actually say that you'd have to find another placement at that time, but some of them clearly did not want Medicare patients or limited the number of Medicare patients they would take. By the way, be sure to get the list of extra costs at either Assisted Living or a NH. We learned that everything is extra -- if your parent wants tv, haircuts, laundry, a phone, etc., plan on supplementing Medicare, since the patient's Social Security or other income will go directly to the NH except for a very small monthly allowance.

Eventually my Mom went from home to the hospital when she went into a coma, and then was released from the hospital to a hospice. After being in the hospice for several months, the hospice transitioned her to one of the better NHs that was located near the hospice. The hospice had "connections" with the NH, so my Mom was able to jump the line -- she didn't want to leave the hospice since the care was so good, and hospice people are so wonderful that they didn't want to upset her. They were very caring with her, knowing that she was terminal even if death might not be as imminent as required for hospice care.

I was advised by an Alzheimers worker, by the way, that when the time comes to place my husband, I should look for a NH that specializes in AD patients. She said that they will have special skills and experience in dealing with AD. For ex., she said that in a regular NH with corridors, they've found that an AD patient will walk to the end of the corridor and just wander into the patient's room at the end of a corridor. In a newer NH designed for AD patients, she said you might see corridors around a secure courtyard for sun and exercise -- and patients will be able to pass and find their own rooms as they walk around the circular hallway. As another example, she said that rugs in NHs may have big patterns to avoid spots, but that the patterns can be distressing or cause problems for an Alzheimers' patient with depth perception problems.

Hi Maryann,

My mother did well in an assisted living facility only because there was limited nursing help available at extra cost. Mom had already lost a lot of ground before I moved her there and she needed someone to give her few medicines to her, to do her laundry, and to clean her sunny 1 bedroom apartment. Had she been confined to a wheelchair or needed someone to take her to meals, I could have paid for that extra assistance. The corker and reason that Mom had to leave that lovely place (~$1600/mo + $150 for the extra help) was that she began to wander at night and she one left the lobby at 9pm, went out the door, down the driveway, and was found about 45 minutes later by an employee who knew her and who was driving to work. The street Mom was walking down had no sidewalks and it was dark. Frightening what might have happened.

Her next residence was in a locked facility, but she didn't even notice. About 6 months later, she forgot how to walk so was in a wheelchair and no longer able to escape. She just slowly declined for the remaining 20 months of her life.

Hope you find the answer to your dilemma!

Hugs - Barbara in VA

Hi marypar,

My parents have not been in any type of care yet. But I have visited 1 nursing home and 3 assisted living/ad care places (2 buildings, the ad patient could not come out, but if another parent was living in assist.living, they could go visit the AD part). I also, visited a alzheimers only place. They had 2 different buildings. Both with lock down, and each building was for a different range of level of Alzheimers patients. I really liked that idea.

In Texas, the nursing homes cost about the same as the other types of homes. I would say anywhere from 2,500 to 4,000 per month. Depending on the niceness of the place and what extras they need at the time. Like: incontinence, meds, etc. Of course things like beauty/barber shops were extra. The other things are just added on as they need them.

It is best to just check all the ones in your area. But I would say probably only Alzheimers places. Unless you are going to have to put your mother in early - where she would feel out of place and really need to go to an assist.living with lots of extra care (just cannot be a wanderer).

Hope you find the very best place for the $. I am still looking for my father a place for the future. Take care. Wannabe

Well, I work in Assisted Living.. front desk. I know most of them won't accept people unless they can care for themselves. They usually have a limited nursing staff.. over here, we have aides that just make the rounds. Some residents have aides 24 hours.. but I'm sure pretty pricey. I'd suggest if you want 24 hour care, go with a nursing home.

You just might have a really good plan there IF she is able to care for herself pretty well. Assisted living usually requires that a person can walk unassisted, bathe, etc. They won't have the same kind of watch over her to make sure she doesn't wander away but maybe she does't need that right now. We found that the cost of a nursing home (not the best and not the worst) was about $5,000 a month. The problem is most nursing homes only maintain a couple of Medicare beds and there is a long waiting list for those which is usually people who already live there and their money is about to run out. It's a really complicated topic. I wish you the best. Attorney who specializes in Elder care issues might be a good resource.

Maryann -

Sorry for not being able to get back to you sooner. Rego Park? I know Rego Park! :-) Good old Alexander's! Is it still there?

The name of the once-hotel--now Assisted Living place is "The Esplanade", on West End Avenue between 74th and 75th St. (Or is that 73rd and 74th??) (With my lousy memory, I am scoring up points every day now, for early admittance to the place!) LOL! :-)

It's been about 9 years since I actually visited the residence, looked around and got prices....so my costs info is rather useless! (You can see if they're on-line.) But I have to admit that from what I see (and I walk my dog past there every day or so, to entertain the residents who sit on the outside benches), it appears to be be pretty "upbeat" for an elderly residence. (Of course, I haven't seen past the dining room, lobby and social area (for concerts, quizz nights, entertainment, etc.)

I notice that the residents who need more care tend to have aides with them to take them for a walk, sit outside, etc. And I don't know if the aides are connected to the Esplanade or not. All the staff I've come across treat the residents with courtesy and dignity.

Their dining area, with windows onto the avenue, is bright and very elegant--and that's because it used to be a Ballroom, when the Esplanade was a fancy hotel!!

Some residents seem perfectly fine, mentally--they go in and out, shopping, etc. Others are obviously suffering dementia and are with someone.

I love the fact that they have park-type benches all along the front of the building, as West End Avenue is a lovely, broad street, with trees, flowers...and lots of people-watching opportunities. Lots of "kibbutzing" going on (if you know that expression?) Sally might not!

The Assisted Living residence that you've already seen sounds ideal, though. So close by! I grew up in Malverne--and I did the NYC to Long Island "shuttle each weekend--just like you--out to Mom's each Friday for a weekend of shopping, paying Mom's bills, walking, laundry, Chinese take-out, etc! I had my twin to go with, so that made it sooooo much easier. (My ex-husband rarely joined us!) And, my Mom was on her own--my Dad died in 1977. I'm 59, by the way.)

It was a very sad, very confusing, very anxious-ridden time. No matter how much stuff you read up on this illness....you still have to play it by ear. Just when we thought we'd thought of EVERYTHING--guess what?!? We hadn't!! LOL! And, no one, but no one, can understand what it is like watching a parent, spouse, sibling mentally disintegrate day by day, unless you have been there. You learn mental strategies to cope--and the one my twin and I used was humor. My Mom always had a great sense of humor...and retained it throughout her illness. But the humor I'm referring to was the sort of "sick" humor (I always think of it as my "Jewish sense of humor") that my sister and I shared, to diffuse the worst of the situation. Kinda hard to explain....but it helped us.

Shay had a very important suggestion. Get an Eldercare attorney! Healthcare is such a confusing maze....and at least you will have the legal angles covered. By the way, there are people you can hire, privately, who will take over the healthcare work FOR you--navigating through Medicare, Medicaid, prescription costs, etc, etc.

Your parents are lucky to have such a loving, caring daugher! Sounds as if you've already done so much for them. Please keep in touch and let me know how things are going.

Lynn :-)

Hi Lynn
Alexanders hasn't been there in many years. Now we have a nice big shopping area there which includes Sears, Marshalls, Old Navy and Bed Bath and Beyond (all where Alexanders was). I am also 59. I will check the Esplanade. I also have an elder care attorny who set up the Durable PofA, Health care proxy, the will, and the Life Estate for my parents. I am going to post another thread since something came up over the weekend and I would love opinions (about mom and my brother). thanks again for your help.
maryann