Made an attempt at placing mom in a memory unit; the monthly rate was listed as $3,100 a month. The cost today is 5,000.

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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


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.
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.
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.
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.
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.
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.
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.
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.
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.
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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