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Oh well, i guess we will stay home. i did feel some relief with that decision. I'm not sure why. I think she is farther along in her disease than I wanted to admit. Took the weekend off and my eldest daughter stayed with her. The earth didn't shift off its axis! Someone wrote a blog about keeping mom at home, but can't remember who it was, but I think it's the right thing to do. Hugs to all you caretakers out there! tonio

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Great news n I hope u have no trouble getting your mom to go check the place out.
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Jeannie and lildeb: thank you for the advice. Ifound a wonderful memory unit for mom for what i feel is a very fair price. Now all i have to do is convince mom. I just cant continue going w/o sleep with her sundowners. i think my visits would be more positive that way. i tried to keep her at home, but the sundowners is just too severe. i tried everything, but to no avail. Keepin the faith! tonio
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The Area Agency on Aging is a great place for local resources to check out. They find out what type of services u r looking n extra resources for yourself. Anyone looking for resources from them check where blue area at top of this page n hover over with your mouse on the 'Caregiver Support' then you should see something, 'Find Agencies on Aging.' I think all u have to do is type in your zipcode n it should located one in your area if they have one. They helped me alot with resources.
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"Its always best to keep mom at home."

I don't agree with nikiaplaygirl on this issue.

I might agree to "It is often best to keep mom at home." I might be talked into "It is usually best to keep mom at home." But always? Uh-uh. No way.

Too many factors enter into it. Best for whom would need to be defined. And whether we are talking best financially or quality or care or preservation of sanity. Then, what are the specific care needs? Is dementia involved? What equipment is needed? What kinds of emergencies are typical of this condition and how can they be met? What was/is the relationship between Mom and the at-home caregivers? Was Mom loving and nurturing or abusive and cruel?

We have seen evidence over and over on these boards that it is definitely not ALWAYS best to keep Mom (or Dad or Spouse) home. Often? -- sure. Usually? Maybe. Always? No, that just isn't true.

I'm not trying to pick nits here, but it seems to be unrealistic to perpetuate the myth that home care is always the best option. It is hard enough to make a decision for placement when that is clearly necessary without having to find stereotypes that don't match reality.
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Home health would be about half the price of the fancy place and that is only at 8 hrs a day and 16 hours would be as much as the fancy place. Not sure what to do. Still wouldnt get any rest because of the sundowners and that lasts 3-4 hours at time. Also she started in at 6 am looking for a mortician cause she thought my dad had died this morning. Been dead for two years. I later saw her phoning for a long time using the tv remote! she was mumbling, this phone is a piece of junk. Really? tonio
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Its always best to keep mom at home. Dementia units charge for everything and believe me, what you're paying for, is usually not what your parent is receiving. Look into home health. I don't know if its less expensive than placing her in a home, but if it is, then you can have someone come in and give you a break. If you're not comfortable leaving your mom alone with a stranger, then you can have them come in to do your groceries, clean up, do moms laundry and keep mom busy, just so that you can breathe for a while. Unless your family is willing to commit to being educated about people with dementia and helping you out, you will need some type of help and a home health caregiver, if he/she does their job well, will give you a chance to breathe. You are in control of the decision, but what I know is that if you don't have a good support system and some type of help, you will burn out. Just giving you something to think about. Good luck and I wish you all the best.
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I work for an elderlaw attorney in Florida. There are programs out there to assist you in paying for the costs associated with Assisted Living Facilities and Nursing homes. Some will cover all of the costs. You need to check with a CERTIFIED elderlaw attorney in your area. The cost will probably be one months cost of the facility but you would be saving 60,000.00 a year for that one months cost to pay to the attorney. Well worth it don't you think? Plus you can protect most of the assets for after your parent passes.
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Igloo, I have been checking those area of the blue tab above this story. It seems we may have to do the spend down for our mnl his mom. Right now we r using a respite care at a church that cost $22.00 once a wk and it is a very nice place n the people r great. Lunch is included n mnl gets that center of attention sometimes their while they all participate in activities. I wish they were open on Saturday for I sure would had drop her butt off today. She has been in one of those snappy bite your head off moods n not just to me but to hubby too. Hubby asked me is she this way when I'm at work, duh.... sometimes. She may be tired from yesterday for we went up to Newnan n shop. She did very well for most of the day yesterday n I had to make sure she got out of the sun n into one of the stores for air n drink water to hydrate her. Cute little shopping area but they should had build canopies so people would have shade as they went out one store n into another. You can't have every piece of the day go great so, I guess apprciate the little ones as you get them.
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lildeb & helpme -on this site there are a # of articles about the different level of care and how the Medicare & Medicaid and long term care insurance system works. Articles are good but not near as much fun or insightful reading as the posts from those of us who are dealing with all this with our parents or spouses. lol.

Imho there is nothing like going and visiting a # of places in the area where your parents will be living. See what your community does that is considered IL - independent living, AL and NH or other SNF "skilled nursing facility".Go to the real expensive ones too as well as those located in more low income area and see what your $$ supposedly will buy. Do you really want to be underwriting the payment on the huge and manicured lawn and entry way and the big atrium? Just so much of AL places, for me, are all about selling the visual prettiness of the place to the family as all this is about capturing the private pay market for as long as possible. In most states AL is not within the Medicaid payment system so it is all private pay and expensive. Just a few states do a Medicaid waiver for AL . From what I've heard those that do waivers have waiting lists usually based on preference given to those that are closer to being at the income and asset level needed for Medicaid NH acceptance.

For my mom, her IL (which is in Texas and was private pay) sounded like what LindaGS described as AL. My late MIL, her very, very old NH which was paid for by Medicaid, was really more of an IL as she had her own apt (this was in Louisiana). So they can be very different based on community. My mom's IL was part of a "tiered" system that went from IL to AL to NH and did hospice within the NH. The IL was a 48 unit 3 story apt building and they went downstairs for 2 meals a day and the activities was in another building. The AL and NH were in a whole other huge building that you could walk to easily from the IL. My mom's IL was for profit (but underwritten by a protestant ministry) and part of a larger for-profit group that also does senior retirement communities that require a $$$$ buy-in.

For AL & NH, what I've found is the residents rooms are basically all the same as there are set federal standards on that; a big difference is how they do a community rooms and how the nurses stations are set up - like is the dining room just used as a dining room and there is a separate activities room. The older places are bigger and they have rooms for both dining and activities and the residents can spend more time eating or doing a crafts project as there is no rush to get the place cleared. For whatever reason, NH residents all mill around the nurses station. My mom has been in 2 NH: 1 was a long hall design with a central hub in the middle for the nurses station. There was always tension as there just is never enough room. Her new place is an X design so the nurses station has lots more room and the residents do seem to visit each other more.

Be realistic about what you can & cannot get your parents to do with minor or major motivation (or threat or legal) on your and your siblings part.This site is filled with posts from folks who are worn out, burned out from taking care of family and just cannot figure out how to get out from under the burden that well meaning caregiving has turned into for them. Caregiving for the elderly or for family with dementia is never easy and it is not for everybody. You have to often be bitterly realistic to yourself about if you can and what their needs truly are.
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Regency homes are a graduated care system. They have lovely apartments that are fully accessible with a nurse on duty. This is the independent living. Assisted living is the same apartment or a studio apartment which comes with a housekeeper and 3 meals a day in the dining hall. Then graduated care comes along with fee for services such as hair cuts and medications and laundry service. Next level has to do with dementia. They track you down and make sure you make it to meals. When you can not eat independently in the dining hall and tuck yourself into bed, you can hire a nurse to visit you three times a day to feed, bathe, and tuck you in or you can move to the nursing home wing. Once you do gaga things- like leave the hot water running over night or your bedroom door open to the patio in the middle of the night-- they insist on the nursing home wing.
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Always nice to be able to help them stay independent and in their own homes where they feel more comforable
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IL is independent living. Strictly speaking, it's a lifestyle choice, not a medically necessary living arrangement. In some areas IL is synonymous with 'retirement living'. However, in the IL communities I'm most familiar with about 80% of the residents didn't move because they were just sick of cutting grass, they moved in because of a health or cognitive issue that made managing things at home impossible (or at least burdensome). People can stay in IL much longer than they'd be able to remain in their own homes with the same mental/physical health status. Living in IL vs AL is much preferred by most people. Ask some questions about this when you're shopping for communities. Some shuffle people off to AL pretty readily (or even boot them into the NH), others are much more supportive of helping them remain independent.
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DidI get this right ... AL = assisted living, NH = nursing home, MD = medical doctor. Not sure what IL means? Is it interim living? Or? And can you elaborate how you get into an IL firstly? Does the doctor help you do this or is it thru Medicare? I'm new to this. Thank you.
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I am new to all this as well. Have u check with an Area Agency on Aging in your area? They helped me with respite care places several other resources. However, you will need to check their crediability n such for the best care. I would see if you can check their ratings of the places of NH and assissted living business too. several people here put a lot of helpful information for us newby's to learn n investigate for r selves to make sure its the best for r love ones n what we can afford. Thanks.
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I don't totally disagree about non-profits, but don't assume that they're all in it for philanthropic reasons, so the care must be better. Some are wonderful, some only so-so. Don't eliminate for-profit communities from your search. Communities that are run well attract good employees and hold onto them longer and that means better care. The best community in our area is a for-profit. It's managed better than the rest and it's reflected in its reputation. Plus, some communities inexplicably have non-profit status. In our area, one of the Erickson developments (who have scads of gigantic, profit-generating communities) is designated as a non-profit. Obviously not in the strictest sense of the term!
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The non 4 profit are few and far between. Out of curiosity, is your's a catholic nun run one or supported by a foundation that underwrites the costs? Non denominational?

I'm pretty ocd on stuff and NH is still is pretty maddening to deal with. Remember they have to be recertified for Medicaid annually (well it's that way for my mom who is in Texas) so keep up with paperwork as you have a very short # of days to get all required documents in. All the states are facing shortfalls in income, so if you're late on getting paperwork in, they will remove them from the "granted" roll
as it shows the state is doing what it can to remove "not needed spending"

One thing I'd suggest you do at one of her care plan meetings is go over each and every page of her binder to make sure they have the right paperwork on her - not so much the medical but that they have the correct funeral home to contact, if she had a DNR that is is signed off by whomever it needs to be (often it has to be a new one with the NH medical directors signature), that the correct SS and insurance numbers are down. And preselect a hospice group and have that request in her binder. Doing this when you are not under pressure is just so much easier.

And also the paperwork if they are allowed to do certain things above the normal
(I don't live close so on her personal needs trust fund I've signed off on to allow for the activities director to buy stuff for her) that the paperwork is all correct on that.
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normamargaret, thank you for posting. All these response's are very informative for new caregivers like myself. At present mom and dad do not want to go to AL or NH's. So we , my sisters and I are doing to duty....very new life style change for me the son. Anyway, I was wondering if you could post some of those not-for-profits you spoke of, so we may try to be more prepared when the time comes to use them...thank you once again.....newtothis.
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This is an amazingly informative post by Igloo. She certainly explains how the system works--I blundered through it and am still having to fill out forms and go to meetings to maintain the status of my loved one in a NH. But I am so relieved--I found a wonderful not-for-profit. I advise everyone to be aware of the not-for-profits in your area. They create a very different and caring atmosphere. We are very happy with our choice and my loved one who is 92 has made a wonderful adjustment.
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My experience with A Place for Mom is that they are all about Assisted Living Facilities and that is the information you get as they are getting a placement fee from them. When I first started looking for my mom, I wanted a "tiered" facility - one that goes from IL to AL to NH and has a hospice unit so that she did not have to go through the upheaval that moving her would entail for her. Everyplace that AP4M sent info on was all about private pay AL. Which is fine, but keep that in mind. She did go into a IL at a tiered facility and then moved into the NH (on Medicaid) and bypassed the AL stage.

You should think about getting your mom into a NH as it will likely be soon that she really will need that level of skilled care, rather than AL. When they are living at home, getting this done is difficult to do as most NH admissions come from their needing "rehabilitation" after discharge from a 3 day minimum hospital stay and the rehab unit is within a NH. Then after the Medicare paid rehab days, they move into the NH and have a detailed medical history to back up the need for "skilled nursing" and can then apply for Medicaid to pay for the NH.

For those living at home, they often just don't have the documented needed medical that passes Medicaid review for NH care.

My mom was living in her home and moved into IL, then after a couple of years moved into NH. I basically forced her to move from her home - she wasn't happy about it but it needed to be done. She probably has Lewy Body Dementia. Her gerontology MD is part of a group who also are the medical directors of some NH's. They were great in understanding the need for NH placement rather than AL - now I do think a lot of this for my mom was easier because of her advanced age (in her 90's) so NH is gonna happen eventually. What her doc did was change her meds from Exelon pill to patch - as the patch needs more "skill" to do; she had a heart med added to give her a chronic care condition; her weight was monitored as a change in weight of more than 10% is a critical care issue and she had been on Megace for 6 mos and no lasting weight gain; and did bloodwork often and monitored her H & H again because this is a critical care issue. So basically building her documented need for skilled nursing so she could get into NH. She saw the docs every 4 to 6 weeks and as soon as the weight loss was @ 11% the order for NH needed was done. There is no way a family medicine doc is going to know this and what the latest requirements are from the state for NH acceptance but the medical directors at a NH are. Just being old or having dementia is not enough to require NH. The docs who are medical directors at a NH know what needs to be done to pass the review. Get it? Good luck.
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Ditto to what 'lovemyjobin ALFs" just wrote. There's an extensive checklist evaluation that should be done before you are quoted a rate for AL. The person giving you a tour should be able to ballpark it for you, but only after a true evaluation is done can you be given a concrete rate. And, understand that your Mom's needs will change and re-evaluations will be necessary if they change significantly. The staff keeps a log of care given, so you'll be able to see if her needs increase. Good communities don't take residents whose needs they can't handle and they want to be clear about care needs with families right from the start.
I concur about A Place for Mom. They can be a great place to start, but not every community lists with them. You may be missing out on considering some of the smaller communities, many of which, in our area, are the best ones. Start talking about it with anyone and everyone in the areas you're looking. See what the general opinion is about the communities you're looking at. A place can get an undeserved bad rep, but usually, if you consider more than one opinion, you'll get a general feel for the best communities in the area.
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I work in Marketing at a senior living community and as policy, every resident is assessed prior to being admitted to the community or signing a contract... That way the staff knows what to expect as far as personal needs so both the community and the family are confident that their loved one's needs are being met. Likewise, the family knows what to expect as far as any additional care costs...

A Place for Mom and their advisors are great, but you have to keep in mind that they are also compensated for placing your loved one in a community that pays to have A Place for Mom tell families about them... There are plenty of great communities that don't have a contract with that company so don't sell your Mom short by giving your complete trust that one of the communities they've pointed you is the ideal choice. I would advise you to utilize their service, as it is free to you and they are a great resource, but also do some research on your own so you can decide for yourself.

I'm sorry you may have felt misled about the pricing, but I hope it doesn't deter you from the idea of an assisted living community. I commend you for deciding to care for your Mom yourself, but please also know that many communities offer short-term respite stays... So rather than your daughter filling in while you need a break, you and your daughter could take a weekend trip and relax with some quality bonding time. It's important that you take care of yourself too! We have several families that bring their loved 2 or 3 times a year so they can take a two-week respite. Sometimes they travel, but sometimes they just catch up on things at home. Their family members really enjoy it too, because they can socialize and participate in different kinds of activities.
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The baseline price doesn't account for extras that most people, inevitably, will need to have. It costs more to parcel out the pills, more to get someone to make sure they take them, etc.
My Dad is in his last days, after living with us ten months. I know it was the right thing to do for him, AND it is exhausting beyond imagining. Even with help. Dementia makes the behavior so predictable you are on alert all the time. I wish you all the best, I truly do. Had I understood what we were all in for, I would not have taken him into my home. But at the time, I didn't see the full picture: just what a "dutiful and loving daughter" SHOULD do. The cost to my health, to the rest of the family, and strain on my husband so outweighed the good it did my father.
Line up paid help to pitch in before there is a crisis. I didn't and wish I had. Don't discount the impact this has on the rest of your family. Do what you need to stay healthy ... If you are scrimping on sleep and eating badly, burning the candle on both ends, just to keep things afloat, then stop and reassess. Don't assume your daughter is on call to back you up all the time...find other resources, or she could start to resent you before either of you sees it coming.
Truly, good luck. Sending love your way.
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It's not uncommon for ALFs to state one price and then "discover" that more care is needed which causes an increase. That's why you have to do your homework and know the right questions to ask them. If you go with the "free" placement agencies know that they have contracts with the facilities they show you and when you place your loved one they get a fee from the facility. Obviously they are not going to steer you to any ALF that not going to pay them.
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I am attempting to get guardianship of my mother in South Florida and I am in Georgia and my brother in Tennessee. My brother and I have looked at two places near where she is, I have looked at three places here in Georgia, and my brother has looked in Tennessee. There is a variety of prices. What I have found is A Place for Mom on the internet will help you to get a reliable help and place and within the cost, you can afford.(for all not just females) They have been a great resource help for me and they are nationwide. It is important to find a place that will treat her right when she gets to the point that she can’t tell you. This has been so hard to get help when you’re in another state. I wish you all the best and taking care of you parent is a wonderful experience. The earth will keep shifting as medicare rises with aging parents to take care of.
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