Can you please share the realities of assisted living centers?

You've got some great advice in all of the comments thus far - I just went through this with my Mom during the past year so will add a few things:
- One rate or need-based: most ALF (assisted living facilities) use a need based fee schedule but more and more are going to a one fee system because it's just easier. You'll find that paying for a full-time or even 3/4 time in-home aide costs just as much. If possible hire an independent contractor known to your family over a company that "places" someone with your Mom. The company's do background checks but often send inexperienced and just plain lazy kids. They charge a lot but pay the kids minimum wage so they are not motivated. I had better luck asking around to my friends and family. Be sure to write up a contract that states the rules, hours, paid vacation, etc and that the aide is responsible for paying their OWN federal and state taxes! Often the "kids" just sat around and waited for mom to tell them what to do. I created detailed lists of things to do each day - fixing meals (do to WHAT to fix), changing bed linen, doing/folding laundry, etc... this way I could count on certain things getting done and knew exactly what I had to do.
- SMALLER IS BETTER! My mom went to a facility with 110 people and they were planning to put 2 people per studio apartment which would raise it 148 - with no increase in the number of aides. They liked my Mom so responded quickly when she used her "call necklace" but for some they really took their time; can't imagine what a mess an additional 30 people will create. I wish I'd looked at smaller home based facilities; these seem to be growing in number all over the country. Look for one that is licensed by the state, has full-time TRAINED & state licensed CNAs and a nurse on-call 24/7.
- Ask about their help for demented patients. About half of the residents of Mom's ALF had dementia and this was really hard for Mom to see everyday. These people really should have been in nursing homes not assisted living centers, so ask about their policies to relocate residents when assisted living is no longer appropriate. It also means that aides spend WAY more time helping a few really needy patients and have less time for others. I suspect that the dementia residents were still private pay so were allowed to stay.
- MEDICAIDE: If your Mom is on a fixed income she might need state assistance so ask if the ALF will accept it to supplement her monthly funds for rent. Generally ALF's accept it if the resident is willing to share a room but some will only accept private pay and one resident per room unless the residents WANT to share.
- IN HOME HELP: We did this for 3 years - i paid for someone to come in 3 days a week, 2 hours per day and later, a state program paid for someone a few hours a week. The problem with this was that they wait for Mom to tell them what to do. I had to step in and make lists of things for each aid to do daily. Once we got that clear, it was a great help. They fixed meals, changed beds and kept the place orderly. I still had to run her to appointments, do grocery shopping and refill her pill box but to know someone else was there helped a lot. Be aware that many in-home aides will not or cannot touch the patients meds. Special credentials and thus a higher hourly rate go along with this.
- VISIT IN PERSON at various times before placing your mom. This is really important and something I didn't do. I went to several appointments but they always managed to "hide" the dementia patients. I don't want to be cruel but once Mom got moved in, it's like a bunch of drooling zombies came out of the wood work! These were people with severe dementia who were wheeled around out of kindness but obviously didn't know what was going on. Had I seen them there is NO way I'd have moved Mom there. We made the best of it for several months until Mom got too weak and had to move to a nursing home. She's actually happier there - 35 people on her "wing" and she has a younger roommate to talk with and table mates that also have all their wits. She appreciates that she can easily see out into the hall and wave to people going by.
So -I'll save your eye sight for not... if you want more details, I've been blogging at help-4-mom.blogspot.com. This situation is really tough, it's almost like we wait - holding our breath - for something bad to happen (a sentinel event) to force a change in Mom's situation. I hope that knowing you're helping and caring is enough for now. Sometimes all we can do is make them comfortable and ensure they feel loved - no matter where they live. Best of luck to you and to your Mom.

I think you just need to look around some more. After checking out many places for my mom I found a smaller facility that met all of my mother's needs. They bathe her and take care of all her meds. When she needs to go to the doctors they will take her and provide a caregiver if she needs more assistance. You need to look for a facility that also offers more care if need be. The only problem is that they do charge extra for each additional item of care. Good Luck.....

robert: thanks for the practical advice...it is exactly what we all need whenever we confront another "bump" in the road!
Mom does use a lot of night lights and keeps her stereo on low. I know that little ailments have a way of becoming bigger at night. She keeps asking for someone to stay with her during the evening hours, but I think that she would become dependent on it.
It is a challenging situation. She wants her independence and own living space, but wants someone there whenever she wants. Not an easy feat.
I agree with you, increasing the paid caregiver to at least once a week will give her a chance to visit with someone else.
Thanks for your input!

robert888, you are spot on! All excellent ideas...a bit sneaky, but excellent

Hi Lilii. I noticed your comment about your mom at night. I think it can be tough on any person to wake up alone in a dark apartment. Is she averse to nightlights? Maybe not in her bedroom, but outside? You could put these on timers so she doesn't have to fuss with them each evening. Make sure she understand and knows about them though, wouldn't want her to wake up in the middle of the night and think that someone outside in the living room has turned on the lights!

Also, does she have some photo albums or other "thing to do" to pass the nights? My dad will wake up and look thru his digital camera photos and move/sort things around at his desk.

I would also start trying out some more frequent aides to come to the house, say 2-4 times per week. If mom needs an excuse, just say it makes you feel more comfortable. The aide doesn't need to be doing a lot most of the day, but can definitely help to watch out for those "little things" that crop up.

This will also allow your mother and you to find someone before she needs a bit more intensive assistance. If mom is afraid of "strangers," it might be easier to first arrange for the aide to join you all for dinner, say she's a friend's friend. Let mom and her build up some rapport before coming in out of the blue. First go shopping together, you/aide/mom, and before you know it, it won't be "a stranger" showing up at her door every Tuesday, Thursday.

She dresses herself and takes a shower on her own. However they remind her of when food is being served, make sure she takes her pills, do housekeeping/laundry once a week, and generally just check up on her on a regular basis. If she doesn't show up to eat, someone will track her down and check on her. She uses a walker, and walks around the place at least three times a day. I get after her if she doesn't use the walker cause she stumbles sometimes. She also has a medical alert necklace that she wears 24/7 that calls someone there if she pushes it. They fix her TV when she screws it up, which I used to have to go to her house almost everyday and do myself. The handyman will do anything she wants him to do, including putting on new rubber skis on her walker when needed. None of these things are considered 'extra' and don't take up any of the points she uses. I have seen other residents there that have to be helped to and from the dining room, and I know they also will help them bathe and dress when necessary.

Nancy: so who bathes and dresses your MIL every day? This is the thing I don't get about assisted living, all the things my Mom would need most are considered "extras."
Can your MIL get to the cafeteria on her own, or does someone help her with eating? Mom would definitely have trouble getting to a cafeteria.
Doesn't it seem that there should be something in-between ALs and NHs? Or, some company should get smart and use a "menu" approach where a client can select and pay for the services that are most important to him or her. The few ALs I have investigated seem fine, but all the bells and whistles they offered, most elderly could not use.
...back to the drawing board.....

When we first started looking for an asst living place for my mother-in-law, we visited quite a few. The ones we liked were the smaller ones, where she couldn't get lost as easily. Since she can't see very well, that was one of our criteria for her. Then we would also talk to some of the residents already living there. That was helpful too. We checked the food, the employees, the rooms, the amenities, the services etc. If we got any bad feelings at all, we moved on to another place. She's paying $3200.00 a month, and that's with no extra points included. She is allowed 10 points before the money goes up, she's using about 7 or 8. If they had to bathe & dress her, she would be paying more. They have been wonderful people to work with, and are very accommodating to whatever we want to do. So far, so good. (she still hates it, but oh well....)

Yea, that spoiling thing does have a way of biting ya in the butt! lol. I feel your pain sista! Maybe some gentle explaining to mom would help. She might listen to the aid better than you. Sometimes info coming from a different place sinks in better.

thanks Bobbi...I will ask the company she works for if she is available for evening hours.
Another problem I have with Mom is that she thinks these people are available at a moment's notice...as if they are waiting there for her call. They need at least 3 days notice if not more. But Mom is used to getting whatever she needs...it's our fault for letting her get away with it for so many years! :o)

Dear Lilli, I don't know if you could afford it, but if your aid is willing, and since your mama likes her, and you seem to trust her maybe she could help you out more Maybe, she knows of someone that could help you out with the night thing. I'm thinking about asking the current aid for possible referrals because I have found that frequently, birs of a feather flock together. Someone of high moral charachter would be less likley to hang around or know those of lesser charachter.

Anne: Yes, I think that an aide may be the answer...thanks to all who suggested it.
Mom is living in her own apt. right now. She does have a paid caregiver who comes in once every two weeks or so to do major grocery shopping, etc. She likes her and I am glad because a few years ago she would never had allowed a "stranger" into her home.
Lately, Mom has been wanting me to stay with her at night. (She has had fear of being alone at night for several years.) She seems to think that bad things only happen at night. Also, less severe ailments seem to be cropping up on a daily basis.
I have so much drama happening in my own life right now that I am just hoping that she can stay well enough until I can figure out what is best for her.
When it rains it pours....
as always, thanks for your kind comments...you folks get me through the day, because, heaven knows, no one else wants to hear about our trials!
Lilli

I've got a better picture now of how much care your mother needs, Lilliput. in the center where my Dad lives, I see that the people who are in assisted living and need extra help (because they fall into that category between AL and NH)----have hired aides who come in daily to help them with all sorts of things----bathing , dressing, wheeling them to the dining room , and so on. So this adds another cost to what they're paying already to live there.

Or you could get some home health aides to come into the home to help you, and as Bobbi suggested, maybe Medicaid could help pay for that. It sounds like you're leaning toward keeping your mother with you for now, and that will probably work out well too for the time being.

Ad: Thank you for sharing your good experiences with an AL. It is good to hear that there is quality care out there.
I just got through reading some web posts on a site that reviews ALCs in my state. The ones that I thought were the best of the best had many negative comments...several were frightening. And these were from people who visited their loved ones frequently...can't imagine how the other residents survived!
I can see that Mom is needing more attention and care, however, neither assisted living nor a nursing home is the right placement for her right now.
I will "never say never" - but like you, I am trying my best to keep her out of institutions. There are just not enough checks and balances in place and, for what the residents are paying per month, these places should be like a resort.

My MIL was in a local assisted living home for 2 years before we brought her back home. We visited the home several times and had lunch there before she went to live there. This facility is set up with a bedroom unit that had one or two beds with a bathroom attached. She had a room mate (2 beds in the room). This gave her forced company since she is not out going and shy.

My MIL had her hair done once a week (she paid $7.00) and had her nails done once a week ($4.00). We took her to doctor appointments. Any medications were given to her by the staff. A main dining area was where they ate. There is also a "breakroom" with a full kitchen that they are allowed to use. Laundry was done by the staff or the resident could do it themselves.

There were activities scheduled almost every day. Bingo, exercise classes, movie night, etc.

Every Sunday she would come home for the day. The reason she went there was a safety issue. She could not be left alone anymore.

She is ready for more one on one care, and we are giving it our best shot of keeping her out of a nursing home. And in hindsight, we would have hired a companion for her, but have had a good experience with the assisted living center.

I don't know what your mother's income and resources are but you could see if she would qualify for home and community based services through Medicaid.

That has always been my concern...that there wasn't much assistance in "assisted living." Right now my Mom has her own apt. With a lot of help from us she is doing well for now. But she keeps talking about these assisted living centers as if they will cater to her specific needs. I try to explain that they are expensive and we will still have to do a lot of the things we are doing now for her.
I know for a fact that she will not like eating in a cafeteria or dining room. (she would have difficulty getting there anyway.) I would still be doing errands for her and taking her to all her appts - so there is no advantage to AL.
The few centers I have contacted, love to tell you about all the frills (exercise room, library, activities) but very few want to do the not so pleasant things that would relieve the strain on seniors or their families. I am disappointed that there are only two choices when it comes to senior care: assisted living or nursing homes. Mom does not fit in either profile.
So I will continue helping her live independently until it is no longer possible. I just wish I could convince her that AL will not provide for many of her needs.
PS (you would think that spending between $3,000. and $5,000 per month would provide a little more care at these facilities...I think that it is just another way of fleecing the elderly....just my opinion...)

All the above is excellent advice. I have just one more suggestion. Once you have spoken to reps and think you've found places you're interested in....DROP BY UNANNOUNCED! Do not make an appointment. I also suggest you stop by at mealtimes to get a picture of what kinds of meals are being prepared and what kinds of assistance to you see people getting. Oh, yea, just one more suggestion....drop by unannounced again...

There is no real criteria for a place to call itself an assisted living. What one provides may defer substantially from what another will provide. You just need to start doing some leg work and contact the facilities in the area.
The assisted living my mom was in provide 3 meals / day in a dining room, laundry, and social activities with transportation. That was about it. If you needed help with personal care you had to hire that privately. Same with MD visits, etc. -- family had to do this or you had to hire a private caregiver. In some facilities you have to be able to get to the dining room, activites etc on your own power -- either walking, with walker or if you are fully mobile in a wheelchair (no one is going to come to you and transport you anywhere).
Before you start looking at facilities with her and doing alot of legwork, just start calling. Ask the admission person lots of questions and see if what your mom needs would be provided at their facility. Only then look at the ones that are helpful (will save you a ton of time in the long run).
Good luck, it is a hard thing to sort out.

Hi Lilliput, From what I understand, it can vary from one assisted living place to another. Your best best is to call the one(s) that your mother is interested in, or else that you have found to look into. You can set up an appt. with a marketing rep who will take you on a tour, meet with you, and answer all your questions. The centers that I have seen don't charge extra for use of the exercise room, etc. Many of these centers are currently adding in the service of transportation for the residents to appointments, shopping, etc. They charge a nominal fee for this transportation, but often it is provided free if within a certain distance of the center. You could start doing research on the Internet by "googling" assisted living in your area. Most of these centers have websites which will give you lots of info. These senior living centers are getting better and better, with more amenities, and "smarter" ways of managing the costs.

With mobility, heart, and swallowing issues, it sounds like your mother would be able to be placed in assisted living, but the marketing people can tell you for sure what your mother's options are. If your mother's condition got worse, she would be moved over to the skilled nursing area further on down the road.

I want to comment also on the "emotional" aspect to what you're going through with your mother saying she wants to move "back home" to assisted living. It could well be that your mother loves you so much that she sees that the demands of caring for her are putting an increasing burden on you.....and that she is motivated to do this for you. Right now it might feel like your efforts have gone unappreciated, but from what I've seen in my own experience and in others', our elderly parents still have a lot going on in their hearts and minds---even with dementia type conditions ( can't remember if your mother has any dementia) ---- and they still love us just as much as we love them. There is still that part of them that wants to care for us too. I just have a hunch that she is pleading to do this because of her love for you.

Best of luck with this, Lilli.

...also, personal care, such as bathing, grooming, dressing, etc? Do they provide these services?