Mom says that she wants to move into an assisted living center back in her home state.
She has mobility, heart, and swallowing issues. My understanding is that meals are not served in rooms or it costs extra. Mom would not be interested in the amenities such as an exercise room etc. Also how to residents get to doctor's appts., go shopping, or pick up prescriptions? Mom seems to think all these things would be taken care of for her. But, from what I have read, you are basically paying for an expensive apartment with some 24hr assistance.
Could someone give me the straight story? thanks.
Lilli
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.
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.
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...)
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 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.
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.
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
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)
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.....
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.
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!
- 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.
It is frustrating for me because there really is not a good fit for her. At an AL facility she would not be able to get to the cafeteria on her own. She can get dressed, get to the bathroom, and bathe...but cannot do long distances without assitance. ALs are so picky about mobility - if you cannot get around easily, there is very little or no assistance. (once again, for what you are paying, there should be more "customized" care!)
Mom does not need a NH facility because she is of very sound mind and does not need to bed ridden.
And her apt. now is not the happy place it seemed to be for her when she first arrived.
She has stated adamantly that she does not want to live with family.
So what do I do?
I am getting calls in the middle of the night with complaints of various ailments. I take her to the doc, suddenly those problems magically disappear or she starts complaining of new ones. She goes on crying jags and when I offer various solutions, none of them is the right one. As the saying goes, I feel like I am "straightening deck chairs on the Titanic." I put out one fire and another springs up.
Lately, she has been pestering me to hire someone to stay with her at night. I worry about someone being in her home for long periods of time unsupervised, even IF I could find someone willing to do it. Mom is always worrying about spending money on herself, yet she's okay with hiring this expensive baby sitter to sleep over and basically do little else. I finally had to put my foot down and tell her that this is not a good solution and that maybe giving assisted living a trial run would not be a bad idea. Her immediate response is "I want to go back home." (btw, there is NO ONE there to go home to and NO ONE willing to take on the responsibility.)
Should I let her go back to her home state and try to find a good AL facility. How will I care for her long distance? If there is no one checking in on her, they will just leave her to her own devices.
To this day, Mom does not realize how much we do for her - don't want a pat on the back - just want her to know that it will not be the same there as it is here.
What do you do if you are a realist trying to help some one who lives in a constant fantasy state?
I am exhausted.
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!
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
Doreen: thanks for letting me know that there are caring environments out there. I did try to get Va benefits for Mom....after mounds of paper work, they said she made a little too much in income (Mom said that she did not realize that she was "wealthy" :o) Your ALF sounds like paradise compared to the few I have investigated. I will have to look further...so much drama happening in my life, I barely have time to breathe!!
thanks to you both....this forum is my life raft of sanity...
Lilli
There should be an Area Agency on Aging, or an Aging and Disability Resource Center near you. Here, those are the names that are most helpful. There is also a CARES unit that's part of the Dept of Elder Affairs nearby, probably covering a county or two, so it's reachable.
I go to Google and put in a couple of words, like ADRC Aging Disability for example. Then Scroll ALL the Way Down and see "Search Within Results" bar - In There, I put Senior Healthcare or Assisted Living or some other one or two word phrase.
Why? b/c you get Too many results and too much chance to get hijacked by spammers if you put in too much at first. Google is awesome b/c of this narrowing down feature.
As far as living with you, Yes, that is wonderful too, but don't try to go it alone.
Medicaid may pay for Half of the ALF care, for example, but they often pay for ALL of Daycare - Which can be All it Takes to lift the load for you. While you work and care for your kids, she's taken care of, occupied, and there are trained medical people watching her reaction to, and giving her on time, her meds, etc.
That's truly the best of both worlds - mom at home at night/weekends and cared for during the week by professionals, so she is not isolated or subject to fall or get disoriented when you're out.
Mobility is a difficult subject to understand. I saw someone said they prefer the nursing home b/c they get more help or are not bedridden.
Actually, the Law says they can be in assisted living only if they're NOT bedridden - but the big places with Apartments don't give nearly as much help as small ones. And they don't know if people eat well or have a UTI until it's Obvious and they're declining.
Nursing homes can be much more neglectful than the ALF where the senior has access to the few, Known and trusted caregivers. But they are great for those that need Nursing care, with very little ability to help themselves.
Our first resident could not lift his head, had to be fed, was on Hospice. He could only stay if he was on Hospice or if he could transfer with help, within a short time. So we fed him well, paid attention, made him less fearful and showed him we were there for him.
This man weighed 103 lbs and was out of his mind almost daily, seeing things and all. The nurse said do Not get attached to him - he is on his way out, 3 days or 3 weeks... He wouldn't last a month. That was September 2009. Last week, at 145 lbs, he was laughing and dancing with his wife at a party! I'm so Thankful to be able to do this work, and I believe God gave me this job and calling, through the heartbreak of my dad dying because he feared death less than a nursing home....
It's about Quality of Life for seniors and their caregivers. You are all heros because you try your best to help your folks and I thank you for that.
Doreen