What if Mom passes her Assisted Living eval with flying colors but then after we move her turns out not to be as "with it" as they thought?

bridges: Sounds like your mother does best when she is around people (the more the better). You are trying to give her privacty, but maybe she just wants to be around other people.

A little motto of mine, Care4Mom2,: "Hope for the best but expect the worst, then anything less will be a plesant surprise". It's gotten me through some tough times.

Been through all the issues mentioned above and then some - including poo, AL, NH and even a psych ward visit a time or 2 in a short 4 month span. Mom could not handle being away from us and I knew that might be the case but after 13 years of caregiving we could not do it anymore. She ended up refusing to eat, got pneumonia, uti and severe dehydration and depression. So prepare yourself for the worst but HOPE for the BEST. No one could prepare me for all of that in such a short time span after I placed her in AL. Right now I am dealing with 8 dislocated disks that I did not even know I had because I had no time to watch my own health. PLEASE - find your parent help before you end up like me.

Bridges - I'd suggest you ask the facility how they approach the Medicaid application process & if the funding from medicaid is a guaranteed waiver. This is AL correct? If so, AL medicaid funding is done via a waiver of Medicaid $ (a combo of state & federal $ which is written into federal law to be for paying for LTC aka a NH). Most states do not do AL waivers. So your Iucky your state does BUT as its a waiver it's not always guaranteed. You don't want a costly surprise later on if you can help it.

About the application process. For my mom & MIL, their different facilities gave us a list of items REQUIRED to accompany the medicaid application. Try to get this list now so that you can get all the items without doing a last minute panic. Most NH admissions review the items to see of there's any glaring problems (if so they do not allow them to be "Medicaid Pending" so DPOA usually has to sign off on a contract) and then they send the application, the stack of documents and their bill for care to the medicaid caseworker assigned to their facility / zip code / region. Your parents awards letters are mucho importante for the facility as it lets them know what moms SOC (share of cost) or copay will be. The awards letters are a simple 1page trifold mailing from SS and most retirements that gets mailed around the holidays with info on $ for the upcoming year. It's easy to be one of those things easy to get misplaced. If you can't find moms, it could take 90 days to get another sent.....For my mom her awards letters had her monthly income at about $1800 a mo, & the NH was positively giddy with excitement as they know they are going to get a nice sum paid each month while the medicaid application is reviewed and thereafter. My MIL was poor as a church mouse at abt $600 mo SS only.

As an aside on finding a place for a parent, I'd really suggest to anyone looking for placement for a parent that IF you can get them qualified medically to show to be "at need" for skilled nursing care in a NH please try to do that. Medicaid costs are real budget busters for the states. States seem to be shifting waiver $$ that are for AL or 1-on-1 in home care to now go towards community based day programs like PACE for 3 or 5 days (these are more cost efficient) or eliminating some waivers entirely. Although PaCE is good, it is not 24/7 oversight, they still have all those others hours that family has to do or pay for. Medicaid for NH is dedicated funding by law so had to be available for those who qualify.

Thanks, all. Quick update: Spoke to Alzheimer's Assn yesterday and got some ideas. Appointment w/eldercare atty on Thurs. Contacted the ALF recommended by the daycare center director and the care team there is going to take a look at if she would be good fit or not but said even based on my description (and I was 100% honest, for which she thanked me) they thought she would fit in as they have a couple other residents in a similar condition. Explained how we could start as private pay, get the Medicaid application in and then if approved, transition seamlessly to that. Willing to work with us on costs. I'm allowing myself to be a tiny bit hopeful. Will keep you posted in the hopes it may help others too.

6 Bed ALs have a far better caregiver to resident ratio (1:3) and is more home like. Often they have end of life care, which will greatly reduce confusion for your mom.

Assisted Living facilities cannot handle residents with capacities that have decreased below what the facility is licensed to take care of. It doesn't help when the patient being evaluated at intake says yes to everything the evaluator asks. Primary Care physician records may indicate that the patient cannot be independent any more but those records do NOT and cannot indicate the extent of the patient's limitations -- that is a separate evaluation for many patients. Because ALF is almost always private pay, patients may be initially accepted, who sooner or later are too compromised to stay there. In these cases, caregiver families have to determine which is more viable -- hiring aides for the patient in addition to the ALF cost, or sending the patient to a nursing home. If this is all private pay, resources are exhausted quickly. Tough non-choices all around.

Wow. Reading the experiences that people have gone through makes me so grateful for the place we moved my MIL. She lived with us for almost a year and a half, after living alone (widowed) for 10+ years. The last 2 she started to decline, to the point that my husband was staying over at her house twice a week, so she was never alone for more than 1 full day at a time.

While she lived with us her mental state declined precipitously, to the opint that we could not leave her alone. Fortunately, we have a neighbor who works at a hospital as a care coordiantor. She had also gone through a similar experience with her own Mom just a couple of years before. We had identified about half a dozen places and begun to visit them. We were looking for memory care AL, and initially had a preference for (1) Catholic (due to MIL's faith) and (2) non-profit - because we thought they would provide better care.

Boy were we wrong! The Catholic places were by far the most expensive - no doubt because full-pay could help to support all the retired nuns and priests residing in them. And when these residents acted up (as in a priest walking the halls half undressed) the staff made light of it and failed to address. They also had an attitude of acting as though they were doing us a favor to even consider my MIL. Seriously??? When she's private pay at full cost? I don't think so.

My neighbor sent us in the direction of a for-profit, privately owned (not part of a chain) facility that offers day care, memory care AL, and NH care. We wanted the option for MIL to move to a higher level of care when needed. The CEO met w/my husband for over 2 hours at the initial visit, AND had all costs and services PRINTED and available in a nice package. (The 3 Catholic places we visited had NOTHING in writing to provide! Hmmm.) There was a short waiting list - which ended up being just a few weeks - even shorter than initially planned.

MIL was resistent but we didn't offer her a choice - said that the doctor said she needed therapy for her balance/walking (she'd fallen twice at our house). Now 4+ months later, she's made new friends and is engaged in various activities. The facility's design (just 20 residents) and philosophy coincides with our own wishes for such an option: structured daily activities, getting her up and dressed at a regular time, out of their rooms into groups (unless not feeling well) and scheduled activities, good quality meals.

There are 2 EXCELLENT aides who "run" the place during the 1st shift, along with other staff that includes a cleaning person who's always picking/cleaning up and an activities director. We have noticed some staffing issues during shift change in the afternoon, but expect this. No place will be perfect, but we are very happy that we found one that meets her needs so well. The one bit of advice I'd give is to move beyond your assumptions to consider a wider range of places; and to visit as many as possible, to get a feel for what's available. The more you know the better you'll be able to make an informed, and hopefully good, decision.

Oh - and one more thing. Due to our location, we were able to look at places in two different states - and found one state's offerings to be much less than another's. If you have that option, I'd check that too. The (non-faith based) place we settled on ended up being less than HALF the cost of the first Catholic place we checked - while also 1000% more appropriate in ts design and services. !?!

Bridges, there are many good points made above. I wouldn't get too stressed about the what if's, because it's not always a terrible thing if a dementia patient has to be transferred to a different facility in order to accommodate their needs. However, it is best to find the best fit the first time around, if possible. I'd be very candid with the facility from the get go. Question costs, especially, if you are private pay. I wouldn't want to have to get her settled and then have to pay a lot more for extra assistance to keep her comfortable.

I actually experienced what you are afraid of happening. I had my cousin placed into regular AL because her doctor said she could not longer live alone. She qualified based on her assessment. At the time, she was fine, but soon thereafter, she progresses and that facility was not able to accommodate her needs. The final straw was her wandering, even though she was in a wheelchair, but she also had problematic behavior due to the dementia, that was outside their scope of care. She resisted getting out of bed, bathing, changing, eating, etc. and was much more confused than we had expected.

So after a few months, we had to transfer her to a SECURE Memory Care facility. It was smooth and didn't seem to cause her any upset. She actually seemed relieved to be there. She made fast friends and seemed to be more comfortable there with people who were more like her in their abilities.

I would check the Memory Care Assisted Living in your state and see what they provide. It must be different, depending on the state. In NC, the Memory Care units that I know of handle dementia patient needs as long as they do not need skilled nursing care. They handle patients with double incontinence, wheelchair bound, bed bound, resistant, needing total care of hygiene, bathing, dressing, feeding, etc.

I wish you all the best. Please let us know how things go.

My mom went from needing mild assistance to really bad dementia. The AL had a memory care unit and before moving her in we were clear on what they could assist her with. I was still worried she would not be receiving enough attention especially moving in a new room. So, I had an outside agency come in to care for her. First it was 24 hour for 3 days then it went down for 3 days a week where it stands today a year later. Now she's has adapted better.
Before this she was on the cusp of getting kicked out of the AL for her behavior, accusing staff of stealing then yelling about it loudly at dinner, etc. When in the MC she had falls and they told me I should get 24 he care again or have her stay with me. Whoa nelly!
We / parents pay for specific services and living at AL or MC. Ask exactly what the contract entails. If it does not serve the needs of your mom, call or look up Alzheimer care in your area and then look up their ratings on the state complaint site.
My mom's AL and MC started to lag with their services because they were short staffed. Stay on them! Also, I found out calling the Local ombudsman for that area can help too. Not to complain about the facility but to direct you for the predicament you are in. You are your mom's best advocate! And if you are like me and start to get really burned out with administration part of her care, I just remember I probably did all these odd things as a kid but my parents took care of it and I'd like to think I turned out 1/2 way normal.
Good news is there are facilities with memory care that can care for her so a NH is not her option now.

Bridges it doesn't sound like AL is right for your mother especially if there is no memory care attached to it. AL expects the person to be relatively "with it". Mom had dementia and needed to be reminded of meals etc, but she got herself up, went to the bathroom and dressed herself. She knew where she was. She was in the continence care program, but that wasn't to help her go to the bathroom, just to provide depends and a place to put them, etc. Had she become more confused she would have been moved to memory care.
Good advice given above. I'd check with an Alzheimers Assn or similar. It would be traumatic to move her to AL only to have them tell you in a month or so that she had to be re-located.
Those of us who have had to move our loved ones several times can vouch for how traumatic it is for them to adjust to a new environment (not to mention the amount of physical work to move furniture and possessions several times.

Thank you Carol. I never would have known what to do if we had not gone through this process. It has been an incredible experience, and yes, there are good places out there. I just visited a friend's husband yesterday at just such a place - a nursing care facility.

I love my parents deeply and know now that it is my turn to be there for them. My sister, sadly, is not capable of providing such support. But, that's OK as I know I"m there for them on all fronts.

We moved our mother to AL from IL about 6 months ago. She fell on the first night there and had to be moved to rehab. for one month until she recovered from a broken bone. It was very confusing to her. But, the good news is she has now settled in to the AL unit, and is very happy, while the rest of us sleep better each night knowing that she has a "Call Button" and staff available 24/7. That said, we have supplemented her care there by adding some private aides during the day time hours to help her to execute plans, to get herself to activities and to bring her "off campus" to other places from time to time. It is expensive, but worth every penny, because it gives her personal companionship and provides a more solid grid of care. The AL staff appreciate this extra layer of care. It is likely that it will assure she remains in AL for a much longer stretch of time, rather than reaching a point where they ask for her to be moved to a nursing care unit. Best of luck.

tigerdaughter1, your journey shows how dicey the whole thing is. Many communities have wonderful care facilities, but even then some facilities are better than others.

Some areas of the country seem to give people no choice but bad and worse. That has to change - it's unacceptable. But now is when most people need help.

My heart breaks for those who have so few choices. You, my friend, have found a creative way forward. I'm so happy for you!
Carol

These are all excellent suggestions. I'll share our experience with multi service facilities. Three years ago, my parents, of their own free will, moved into a multi service facility. They had planned this for some time and "did not want to be a to burden" to my sister and me. The timing initially couldn't have been better as mom always managed all the bills, and utilities kept being shut off because she forgot to pay them. When they moved out, another family member helped me clean out and downside their home, with some help from dad too. We found checks that had not been deposited, insurance bills at were unpaid etc. And, jewelry mom said that had been stolen.

I had my initial gut feeling about the place the moved to almost from day one. It looked lovely but there was a superficial feeling from the staff. They moved into the independent wing an all was fine for the first 8 months. Although the initial fees they were told, quickly escalated for "their need to increase inline with business needs. " I got that but not every few months.

Then mom started to not want to go to breakfast. I received a bill of $6 every time mom wanted her eggs or just toast brought to the room. Even if dad walked it down for her. Then she started to fall. I had just been down the week before Xmas and two days later she's falling nightly. Taken to the hospital each night, and finally, during one fall received 9 stitches in her head. I was back down immediately.

The facility recommended a full time aid, which we got. BUT, we were only allowed to use aids from one agency, vs. having the option to evaluate which agency we wanted to use. Expenses from the time the arrived starting at $3500 went to over $20,000/month. They also suggested separating mom and dad. That would have been the end of them both.

In addition, mom lost 45 lbs in less than one year. Dad held his own but was worried.

After my regular visits, calls, and requests for information, especially from the doctor they had visiting them weekly and taking blood tests every other week (I never received full reports from the head nurse who said they didn't keep records, or doctor, who said the facility had all the records), it was suggested we leave.

Not knowing where to go, the facility nurse suggested a few places. They were hell holes and places where I wouldn't even allow my dog to stay. So, I got to fast work researching and visiting places where they were in FL and back home up north. At the very last minute, I found a lovely independent living facility who offered us a 2 bedroom suite that was large, sunny and happy in feeling. Dad easily agreed as I openly explained expenses... he's always worried about a penny and rightfully so.

We moved in, and I found two amazing aids on my own. Oh, the agency that we had to use at the other facility said they had aids who were reference checked and on their game, but we found otherwise. They slept, one wanted to know if she had to take mom with her when she ran an errand or what she should do if she had to smoke etc... several were excellent but the majority... well, let's just say I named one "the biker chick," and leave it at that.

The move to independent was great. Mom loved her new home proclaiming it was "cozy" after a week. Dad loved it too. Our aids were working beautifully and we were working as a team to find more so we could manage a schedule that was not a burden and was comfortable for everyone.

Then, the new facility mangers changed, the quality and amount of food degraded, and dad's lost nearly 20 lbs. Our aids are upset about what's happening at the facility as they keep an eye on things for me and I double check when there every other month. So, we're on the move again but this time back into a rental home, which is beautiful and MUCH less expensive.

I now, basically, am running a side business which I laugh and call mom & dad, Inc. (not really a corporation but it feels like it). Since I also have my own business, I know a lot about running an enterprise. We now have 6 aides, one there all the time. Others are there to take mom and dad to doctors, a fellow to help dad feel like he's not surrounded by women all the time and they can't wait to get mom and dad back into a real home. Our costs will also drop by another $1,000/mo and that includes food and other items. One aid said she wants to bake bead at night so dad and mom wake to the smell of fresh bread every morning.

We've made sure the house is handicap accessible, bathrooms, small ramps for one step up into the house etc.

I've gotten the education of a lifetime these past few years. I now leave my visits with mom and dad with a smile on my face, knowing they are safe, happy and in good care. That includes doctors (which I've also changed and didn't get into here ). At the original place, I'd cry all the way to the airport. I hope this helps!

If she enters an ALF, and has the "poo issues" mentioned above, it is only a matter of time before UTIs, then septic, than c-diff, than MRSA, etc. occur. That's why they will discharge her back to you.

I agree that being honest is the only way to go. Finding an assisted living facility that offers different levels of care is ideal. If they have a memory unit, they could move her there when the time comes. The only way you'll have 24 hour supervision is a nursing home and she doesn't sound as if she qualifies for that kind of care.

In most AL situations, you can pay for "extras." So, if your mom needs a CNA to check on her several times a day or some other service it is available but not in the original package. This varies greatly by region and by facilities themselves.

Make your choice as carefully as you can and be honest with them (maybe when your mom isn't present).

This is a good move. It's time to take care of yourself while you are still part of caring for your mom.
Carol

I recently placed my mother is a Assisted Living Memory care that can provide all levels of care. It seems to be working out pretty well so far, but you do have to accept the fact the people in the facility are primarily dementia patients so there are some real characters running about. At first, I felt like I had put my mother in a loony bin, but I had to overcome that and look at the level of care she was receiving there and appreciate it is really offering her a better quality of life. Living on her own had just become a bad situation on so many levels that I didn't even realize.

Even dedicated memory care units in an assisted living facility may not provide enough staff and if she becomes difficult to deal with they won't even put a diaper on her based on my experience. There are few choices out there but you may want to consider a residential board and care where 6 people are cared for in a homelike setting

Wherever you place her, you will need to check in on her frequently

Memory care is not for the faint of heart, I'm afraid to say

Bridges - after five-plus years of dealing with, at first both parents and now just my mom - I think I could just about say anything to anyone. I also have a severly disabled son - so after years and years of advocating I've become a pretty tough cookie and can't much be bothered with beating around the bush. But then again, I still refer to "it" as poo - lol!

Just a suggestion based on my experience w/my Mom. Call your local Alz organization and explain your situation. They were tremendously helpful to me and recommended a facility (well-known to them and highly rated), w/graduated care, including hospice services.

My Mom, now 94+, moderate dementia, huge fall risk and now wheelchair-bound has been in this lovely, small facility for 18 months. She has received excellent care, is healthier than she had been for the previous 3 years and is very content.

Best of Luck to you and your Mom!

Thanks, Rainmom, I appreciate the straighttalk. Just wish you were the one who had to break it to the lady at the daycare center instead of me. :-(

Bridges - I'm gonna be blunt about the poo. If your mom can't wipes her own bottom without getting poo on her hands and under her nails - she doesn't belong in AL. The poo thing will go from bad to worse and one day you're gonna find her with poo in her hair, on her cloths etc. I was still questioning moving my mom from AL to a NH when our own paid caregiver (a condition that we had to supply a caregiver so mom could stay at AL while we found a good nh) anyhow - when our caregiver called me and asked if I could bring over a nail brush and nail scissors. Seems mom changed her own depends and pretty much managed to get poo everywhere. I've never seconded guessed the move to a NH from that moment on.

Yes, it has different levels of care, but there is no memory unit. The weird thing is, Rainmom, I've said all along she's too out of it to be on her own at an ALP, but it's the director of the adult daycare center, who loves my mother to pieces, who is the one who is pushing me to do this. She says I'm negative when I say my Mom's ADLs are not good enough for ALP--"I wish I had 30 more people like her in my program," etc. etc. But she sees the fun, social side of my mother. She doesn't see how she functions in the home setting. She swears my mother has never peed on the floor or missed the bowl and peed on the toilet seat or the back of her pants at the daycare center--well, she has for sure here. Not every day, but she has done it. And she wipes and gets poop under her nails unless I supervise her toileting. And then she will wash her hands but not notice it and there it will stay until I *do* notice it and pick it out with a toothpick. (ick) I can't imagine a roommate wanting to live with someone like that, or someone who is constantly talking about wanting to visit her sick mother, who has been dead over 60 years.

I mean, why go through the time and trouble of getting the free evaluation if I already know deep down in my heart she is not a good candidate for it? Yes, I am burnt out and would love to have her in a nice place, but she can't afford a nursing home and yet is too "rich" to qualify for Medicaid. I'm spending her down but by adding an aide 10 hours a week since March the $ is flying out the door at an alarming rate and I'm frightened. I can't do this much longer without becoming sick myself and yet there seem to be no options for someone who's too self-aware for a Nursing Home but too impaired to live on her own. It is so sad and so frustrating.

First off, don't sugar coat anything with the AL people. Be up front regarding the worst of your moms condition PRIOR to moving as they will find out eventually and being honest to start out with may save you a move in a short time later. We put my mom into AL from IL after a fall and a three week rehab stay. The folks at rehab told us mom needed a nursing home environment but my brother and I didn't believe them. After all mom had been doing okay in IL up until the fall - we figured what they were seeing was mom being off due to the rehab setting and she'd be back to her old self once she went home. We did make the change from IL to AL - it was in the same building, different wing - recognizing that she would be better supervised and help would be available, saving us some work. Long story short - mom made it ten days before her first fall and ended up in the ER. She went back to AL the same evening but fell two days later. At this point AL asked us to move mom out. So, as I see your situation if the AL folks see your mom needs more help after she moves in - best case scenerio, they say she needs additional services and that will likely mean more money paid. Worst case scenerio, they ask mom to move out. So take a good, hard, objective look at your moms abilities and likelihood for quick decline and make a decision erroring on the cautious side. Good luck!

Are you considering facilities with multiple levels of care? So as she declines there is some higher level of care they would move her to?

Be up front with the AL about her bad days. You don't have to do this in front of her, I assume you have been in contact and making arrangements on your own?
Many ALs can accommodated those with memory problems, but if the one you have chosen doesn't then you need to find a better fit.