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?

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You know how seniors seem to know when they are being evaluated and put on an Academy Award performance to "pass" the eval? I am to the point where I have "seen the light" and would be thrilled if Mom could go to an ALP. But some days she's good, some days she's bad, some day's she's really, really, really so bad that she's practically ready for the nursing home, not ALP. What if an ALP accepts her based on her passing her eval, but then after the big, traumatic move there she crashes? They send her back to me in worse shape than before she started? They recommend NH placement? One move is traumatic enough for an Alzheimer's patient--I don't want her to be frightened and confused. I mean, some days here (in her own apartment in the downstairs of my home) she can find her way to the bathroom and then 1/2 hour later she tries door after door after door to find it because she's forgotten where it is. Sometimes she remembers to take her cane with her, other times she doesn't, and then she is "counter surfing" from the living room through the kitchen to the bathroom. I mean, I can't watch for that kind of stuff 24x7, but the people there aren't going to be doing that either. Yet, at the daycare center, she's great--really happy and social and, above all, functional with just a little bit of guidance. I just don't know anymore. Anyone have any ideas? (People have been suggesting ALP to me for a long time but maybe I've waited too long?)

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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
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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!
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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.
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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!
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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?
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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.
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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.
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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.
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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.
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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.
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