Can you please share the realities of assisted living centers?

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.

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.

Wow - Lilli.. I wish there was some magic word but... sometimes all we can do in these situations is help as much as possible and wait for some event that forces action. I hope it doesn't get to that point for your mom. My mom also wants to return "home" but it's not possible. I have this conversation with her EACH time I visit. I've come to expect it and I tell her the same thing each time, it's not safe, you're too weak, you can't be alone -then I change the subject. She WILL NOT UNDERSTAND so all I can do is let it go or I'll go nuts. All you can do is control how you'll respond. Based on my experience, I'd say that you should expect to hear this for a long time. Sorry but they want to be where they were happiest and they don't realize that the people that made them happy are gone; they associate happiness with the place.

Are you SURE living with you for a while is impossible? Invite her to spend a couple of nights and see how she feels. She might complain all the way to the front door and then she'll be fine. If you arrange something to occupy her while you're out, ensure she can work the TV, has a comfy chair - she might be okay. I had Mom with me for a couple of months and it was great. I had her help me with meals by peeling potatoes, drying dishes or folding laundry at the kitchen table. She was her old self during that time and we laughed a lot. She didn't mind being alone during the day while we were at work and was even able to do a few things without us, it helped her feel like she was contributing. If you can't have her there, don't feel bad. It takes a lot of patience from everyone.

As far as wanting to go "home", you can tell her it's not safe. I use a similar "mantra" with my own Mom. You could tell her the ALF there is full, that she can't afford it, that they won't accept medicaide - anything to make THEM the bad guy not YOU. You can also put problem solving back on her - ask her who will take her to the doctor, to the pharmacy? You'll probably be met with silence.

My mom is in a nursing home and it's actually a much better place than the assisted living facility. Mom's and most of the residents are in wheelchairs, not bed ridden. Most are in their right minds but have arthritis, parkinson's or other ailments that make it impossible for them to live alone. Mom calls for help when she wants to move from her wheelchair to a recliner or to the bed. She also calls for help to get to the toilet. They have a regular schedule for showers and grooming and for meals - and help residents get there if they can't make it themselves. There is on site physical therapy and occupational training to help residents do as much for themselves as possible. Mom does what she can but when she can't do something for herself all she has to do is ask. I'm actually happier with her treatment at the nursing home than I am the assisted living facility.

Regarding her mental state, has she been evaluated for a urinary tract infection? Is it possible to give her a low dose anti-anxiety med or anti-depressant? This might help ease her anxiety about being alone at night or moving in with you.
Good luck!

Brutus - while I don't agree that Lilliput is thinking just of herself, my question (to anyone) is why is that bad? This may sound awful, but sometimes it seems like caregivers - spouses, kids, etc. - are encouraged to think of everyone *except* themselves. Everyone has a life and that life should be worth living. Just because you are now caring for someone else doesn't mean your life should end.

In this situation that so many of us find ourselves in, I think that the needs of all parties should be acknowledged and considered. True, many times the caregiver's needs cannot be met, but at least figure out what they are and think about what can be done.

Compromises should be made by everyone. The person who needs the care shouldn't get everything their way just because of the situation they are in. No one should.

In case anyone wonders - I'm caregiver (with my brother) for my 63-year-old Mom with Stage 5/6 Alz. She and my brother both moved into my home a year ago and it has been very hard on me. I work all day and then go home and deal with everything there.

By the time I get home, bro needs a break, although he is really good if I come home late or go out with friends. (I'm very lucky there.) For the most part, Mom gets whatever food she wants (within reason), chooses TV shows, decides if she wants to take a walk or stay home, etc.

Now Mom has started going to adult day care 2X per week. She doesn't like it and wants to quit. We still insist she goes and gives it a fair chance. This is her compromise for us.

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...

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.....

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.

That has also been my take on assisted living one place that I heard of they checked once in 24 hrs the people living-you might have to actually take you Mom to a few so she see's what really goes on someone might have told her how great they are and until she see's for herself she will not believe her family most elders think their families are not telling them the truth.

Hello,
I see such caring and support here, that's wonderful. But there's a lot of variation in senior care and much of it is so profit-motivated. I can tell you a lot about Assisted Living, most of it very good, from personal experience.
If you move your folks in with you, that can cause more problems sometimes - but you love them and want to help them. I know more about Florida than any other place, but Medicaid and VA are National programs, administered at the State level, so they're pretty uniform.
Why am I talking about money when you asked about care? Because the reality is, mom will get what care you can Afford to give her. You must factor in your health and your own family's well-being when you're counting the cost, too. If you have kids, they can be seriously affected by the time and attention you pour into caring for your mom, and can be short-changed. It can also be a learning experience for them and for you, and prepare everyone for the fact that life is transformational and nothing is forever, but that as things change, we can respond in loving growth for ourselves and those around us.
So please contact someone who can help you with benefits - if your dad or stepdad was in the armed services, she can get VA Survivors' Benefits. The veteran themselves get more, nearly $20,000 per year, but the surviving spouse (even in some cases divorced if they never re-married another person) can get over a thousand a month.
Medicaid has a program in most states similar to Florida's (my home state) that pays about Half the cost of Small ALF care. Here, it's called the Diversion program (designed to divert seniors from being forced into a nursing home) That's a Godsend b/c Smaller is Better. It's like living at home with family. The seniors Become a family, watching out for each other. They have company, a social life, activities (when it's done Right, mind you) and this can be so much Better in a smaller place.
Three things are Key when it comes to senior care:
Nutrition (Assisted Living Facilities of all types must have a menu by a registered dietician but the taste and quality vary widely) At Angel House, my non-profit Home-ALF and senior advocacy, we spend 2 to 3 times as much on food, because we feed only whole grains, unrefined sugars and fresh fruits and veggies. That's costly but so Improves the Residents' health!
Activities and Socialization - again, the law dictates a schedule for offering it but we can't Make them participate. The important thing here is that the place is small enough to Notice who likes what and to tailor the activities so that all will participate and have fun. We take our seniors to local south FL attractions (even if it's an hour or two away) and we have parties, BBQs, pot luck, go to concerts in the park, pet therapy, music by entertainers in our home (we have a piano & computer with webcam and skype).... Whatever is fun and stretches them so that they feel accomplished, independent, adult, and have as much freedom as we can safely give them. A degree of isolation is unavoidable, but they feel much more a part of things here. That gives them hope and dignity. They can talk about whatever is on their minds, whether it's bowel movements or music, and be understood and accepted by their peer family.
And HealthCare with a focus on Home
Our doctor visits monthly, more often if needed. Nurses come in between, and the podiatrist is there every other month. Physical & Occupational Therapy are paid by Medicare, if the senior has an advocate who knows the ropes and how to get it for them. This keeps them stronger, more active and healthier. At the same time, it is fun for them, and they love the extra attention. Not all ALFs do these things, and surely not to the degree we do.
But they should. And that's why I'm ready to form a group of smaller ALFs to Show them how they can enrich their programs without breaking the bank and budget. Imagine if we get Ensure by the Pallet instead of the case, and do more creative activities with the savings?
We have to be much smarter than the big places to compete with them, but we win every time for the seniors with hands-on individual care at the small places.
Please let me know if I can help you find something. I'm here to help.
Doreen

Lili, I apolagize if you took offense to my post. I do understand as I am the daughter of an ailing mother who has two sons living in the home with her yet I am the one who gets the emergency calls (she lives in Maryland, I in Virginia 3 hrs away). One thing that I have learned along the way is that 1. As long as others know that we will step in to clean up the mess, they will continue to let us do so. 2. As much as we love our parents, we can only play the role of caretaker but for so long before we, our families and our lives suffer. It is difficult always being looked at as the dependable one. I know that my brothers have the attitude of that's all right, we know that Bobbi will fix everything. Have you asked your sib why it is they're not stepping in? What would happen if you notified your sib that you're at your breaking point, you have your own crisis to deal with and you can't do it anymore (just curious). It sounds like you have a lot on your plate right now. Having your husband loose his job and possibly you loosing your home is devestating. I guess only you know where your breaking point is. I will keep you in my prayers. Again, my heartfelt apology.