I know these questions are thoroughly discussed here, but I am feeling paralyzed--making this decision on my own, and feel unqualified and overwhelmed.
The main question is... whether to go with a more expensive AL facility that DOES transition to medicaid if money runs out, or go with a less expensive facility where mom could be self-pay longer, but that does NOT move to medicaid, and hope for the best?
A very short overview is that mom has dementia caused by NPH, normal pressure hydrocephalus, a form of dementia that does not necessarily follow the ALZ path. But, she is 85, and not in good health. I cannot really see her living many more years. I think she has enough for self-pay for about 5 years in a combination of AL and memory care--I think at this point she would be a mid-level support AL resident, but I would plan on that changing to needing memory care at some point, maybe soon.
The doctors will give NO long-term prognosis. They just don't know how long. I am, as so many are, terrified of running out of money.
She could be self-pay for another 18 months at the less expensive facility, even if most all of it was memory care.
My question: I have read many of your admonitions not to try to think too far down the road. I am also trying to keep too much emotion out of the equation--for instance, the more expensive AL facility has one-bedroom suites, and the other has efficiency apartments. Nice efficiencies, I think, but still just one room. Mom is and always has been all about her home--her decorating, her things; loves to just sit and enjoy looking at her beautiful room, and get lost in looking at all her things.
The more expensive AL facility is closer to my sister, and in the general neighborhood where mom has always lived. The less expensive one is on the other side of town, maybe 25 minutes away compared to 10. Worried this might mean far fewer visits from my sister. Also mom will be much more agreeable to moving "right down the street", though I know it won't matter in the long run.
It is possible--I am checking--that if mom moves from AL to memory in the more expensive facility, the clock is reset on the medicaid eligibility and she would need to be a self-pay in memory care for two years.
So, should I put her in the nicer and more expensive facility that will roll over to medicaid and re-evaluate after a year? And then possibly move her if necessary--say, if her dementia improves and it looks like a possible longer life?
Again, very hard to imagine my mom living more than five more years. Trying not to make an unrecoverable error in my choice. My gut says that it really doesn't matter, and that a re-evaluation will be necessary in a year or two no matter what I do.
I will no doubt be asking more questions in the next days. Thanks to any who wish to share their own experiences.
In the places that have beds available, once she is in place and needs Medicaid, then she goes to the top of the list
No matter what NH you pick, there will be some blips along the way. Be sure to visit often and at random times. Do NOT assume if she is out of her head one day that it's dementia. Always ask for urine tests to check for UTI and blood work to make sure it's not sodium, potassium or magnesium levels out of whack. All of those are common problems and can have you thinking dementia has taken its' toll. Pay attention to her seeming to be sleeping a lot more because meds to quiet patients may have been added. Every 1 or two weeks, or more often if she changes behavior, ask for a list of all meds she takes. So many meds have side effects and some are for staff convenience, not necessarily for the overall well being of the patient.
I would visit the 2 facilities again. Find out when is breakfast, lunch and dinner. Then go visit them just prior to eating and for a short while, during the meal. Observe how they treat the residents. Observe how the residents react to the meal. Observe the food that is given. Does it look like food? Are the residents agitated while they are being seated? How many per table? Then do at least one morning and one afternoon visit. Are they doing the activities that were promised at that time (it doesn't have to be that exact activity, but it should be something other than stay in their room. ) Do they confirm that the resident is eating? Do they confirm that the resident is coming out of their room for activities? How clean is the facility? In the facility my Mom is at, there is a guy with vascular dementia who will pick up any little anything off the floor and put it in his mouth. He was obsessed with food. Therefore, the floor had to be absolutely free of any material. Also observe any smell. If there is an odor, then they probably are doing something to mask other odors. Ask them about it. Watch their reaction to your question.
If your Mom watches TV, are there others that watch TV at the same time? See if the facility just does what they say they do in the literature. Watch for staff interaction with the residents. See what kind of residents they have on the floor. Is there something difficult to deal with that your mother does? Ask them how they would handle it.
Will the facility that allows Medicaid help you file for Medicaid when the time comes?
At some point, when you ask questions, there will be something that makes you prefer one over the other, even though each one has their plus and minus. At least the ones that I visited, when I asked about facility xxx about facility yyy, they were able to give me useful reasons. Of course, I cross-checked their facts. Any significant lies and the facility was crossed off.
I am a little confused by your post. Is your Mom's memory impaired bad enough now that she shouldn't be living by herself? Why the move from AL to MC? If she is good enough for AL, then why not let her live where she currently is, then move her directly into MC?
About how long her money will last... How does your Mom's age compare to her direct blood relatives and how long they lived? Have any of her direct blood relatives have the same type of disease that she has? How fast was their progression?
If the facilities are still equal by the time you have seen all this, I would go for the one who would help you transition into Medicaid. Allowing the money to last longer is nice. However, finding a place that you trust that will take good care of your Mom is much more important.
...and as I experienced, the add-ons are a surprise. Watch when you sign the paperwork...there will be additional services for you to check yes or no, which some are included in the price they gave you and some are not.
P.S. If there are still some really huge red flags in either, go look for another facility, or go back to those you have previously crossed off your list and do the more in-depth visit.
P.P.S. Did you use any kind of referral service to find the facilities? If not, I suggest that you do use a referral service. They might come up with other facilities that you did not even know about, or in my case, a facility that had MC that was not advertised anywhere.
This was especially helpful—as silly as it sounds, I was not looking at the possible add-ons. One was the $25/visit copay for therapy. My MIL has better coverage and did not have copays, but my own mom will. And little things like transportation will add up. Thanks for your thoughtful response! It’s been a crazy time!
Even after all the talks we had and agreements we made and legal durable POA I've obtained, I am STILL "overwhelmed"! It almost seems as if the powers that be intentionally make it very difficult to find information about ALTERNATIVES to the expensive in the states facilities on the internet. And from what I have learned so far, these facilities have a whole list of ADD-ONS that increase the cost. The big $ ones are 1-memory care (which seems to be a BS misnomer), 2- whether they will need to dispense any medications, 3- Urinary incontinence, 4- Bowel incontinence, 5- if they will need assistance with bathing.
After seeing one facility advertise what I thought was a pretty good price, I contacted them for a quote. Once they added all the extra costs for the add-ons, I was shocked. From what I've learned so far, most facilities in Mexico do not hit you will all the ad-ons.
Renting a house overseas and hiring a full time live-in care-giver was another option me and my mom discussed. The would also be a fraction of what a facility here in the states would be. But either way, I'll probably end up having to move also, alleast for a while. The options would be move with her. In the case of Mexico, I could either move to Mexico with her, or to a border town in the US and have her in a facility just across the border.
The biggest problem I've seen is that there is very little information available to people wanting to find all of the alternatives. There seems to be very little incentive for people to compile information on all the alternatives and make it available to families searching for info. I feel that most places you go in search of information try to pigeon-whole you into the most expensive alternative without even mentioning other alternatives.
My mother get a significant amount of Social Security because of my stepfathers high wages that she was able to start drawing after his death. But it would only be a fraction of the cost of the typical expensive facility here in the states. My goal is to find an alternative that would allow me to pay most, if not all of her care with her monthly SS payment.
For those that think I'm just being selfish and only thinking of my "inheritance", it was my mom who said she did not want a care facility to drain her of all her property and leave me with nothing after her death. I have taken care of her for over 5 years now and been her only caretaker and not been able to work as a result. My mother took this into account when she told me how she wanted me to handle it.
The problem is, now that her dementia is getting worse by the day, she doesn't remember much of what we talked about. But fortunately, her health directives and POA she signed years ago gives me full control to do what I feel is best for BOTH of us. Still, making those decisions is going to be hard. I can't imagine how difficult it would be had I not had all those talks with her and made all the legal arrangements in the past.
I was in your place 2019. Mom who will be 95 in June was a handful. Three years before placing her, she had caregivers. She only liked one and the rest were let go.
She didn’t like anyone in her house at night because she said they were stealing from her. She would have panic attacks and call911 thinking it was a heart attack. When the Paramedics were coming two or three times a week, they suggested it was time to move mom to a safer place where she was taken are of around the clock.
So began the search. After visiting 7 facilities, we chose one close to us. It was a new facility. Everyone was sweet and kind and her room was lovely. But after a week of her banging her walker to get out, pulling the aides hair, scratching them and finally escaping, I needed to see what was going on.
well, there was no activities or interaction with the residents as promised. People needed the restroom and no one was there. The placed smelled of poop and urine. Mind you, this was a brand new facility, and cost $7500 a month.
Well after a water main broke and flooded moms room, she was moved. Her mattress was ruined but did nothing. No communication! Message on phone said the night shift were busy but it was 9:00 am! We proceeded to move her after one month.
She is in a nicer place and she is very happy. More expensive but better staffed!
She has Vascular Dementia and Alzheimer’s.
My advice is visit the facility. Check references and talk to residents or families.
it is a lot of work, but in the long run, you will be happy you made the right choice.
Bless you and stay strong.
Even the most expensive facilities does not mean that it is the best care. I would suggest getting a facility that has fewer beds so that your parent will have better care.
I would like to say that all is well once you place your parent in assisted living or MC, but that is not the case. Staffing is a real issue right now and even the staff that is there is not very good. It takes a really good manager to make sure a facility is run correctly and it is difficult in the best of times, and we are living in the worst of times,
This AgingCare website offers organizations that can help you free of charge find a place that is suitable for your parent. I would suggest you use one of them. I think a residential group home may be something that you might like as it was mentioned before in one of the answers. It did not work for my parents, but I definitely think in some situations, it is a good route, although they are as expensive as well.
When you visit the facilities, notice if the residents are milling about and are happy and notice the staff and how they are working and if they are even available, if you can even see any of them. Try to also go back and visit on a day that they are not expecting you. That way they won’t have time to get everything all lined up to look perfect for you. Also, if it’s offered, go ahead and have one of their meals to taste what they are feeding them. Some of the food is awful and is totally inedible. Each facility charges a different amount for the level of care that is needed, and as the parent progresses, the skill level and charges will go up. it is not done on a yearly basis. Some facilities reevaluate every three months. Some facilities increase their fees several times throughout the year for various reasons and none of which are in your control. It definitely is a slippery slope and I don’t wish it on anyone .
I would also suggest that you go into each facility that you are investigating with a typewritten list of questions that you have figured out will be necessary for the care of your parent. I had 20 such questions that I did in conjunction with the department of health recommendations for the best facilities in my parents’ area. Make sure that there are hand rails all along the walls that go all the way to the dining room. I would also suggest using this site for various articles before you investigate facilities to place your parent.
Once your parent is placed in an assisted living or memory care facility, ask what products you need to supply for your parent. Not all facilities are the same and some of them well supply toilet paper, and some of them will not. That’s just an example. I have found that you will need to supply all towels and soap and sheets as well as toiletries.
I would also suggest once you, place your parents that you follow up at least once a week either by phone calling your parent or visiting in person and also making yourself known to the staff and getting phone numbers so you can register complaints as you will have them. I have not found a perfectly run facility yet, and had to move my father from an assisted living facility to another one because of very dangerous care issues. Just because the facility is very lavish., does not mean that the care is well done.
i can’t speak about Medicaid at all.
Then, dementia will never rewind and get better.
good luck!! Email me with any questions
I'll get back to you with the site name that helps locate these hard to find small places.
1) Dementia doesn't improve unless it's not dementia at all (UTI, complication from a comorbidity) so plan ahead for memory care.
2) Planning ahead (at least for the next phase) will save your sanity. Not thinking too far ahead means you will be reacting vs. responding to the next phase of your LO's dementia. There are many and they present differently in everyone so no one can know your exact situation.
3) AL choice should be considered WITH memory care as it's the most probable next step. AL communities give memory care priority to their current AL residents over new residents. They don't tell you this, but they do. You are a cash flow to them and they don't want to lose that. If you choose a good AL/MC community, hopefully you or other family will be there often enough and audit the care being provided. Their sales people are lovely and will share the best case scenario with you.
4) Family visibility pays off. The more your family members visit, ask questions, complain when needed, the better care your LO will get. Sadly, the laws allow for a very high ratio of residents to care staff in most AL (California is 1 to 100) which is ridiculously high IMO.
5) Be wary of activities. They are only as good as the person in charge and the residents attending. In our case, they offered activities but they were poorly attended. Probably bc the residents wouldn't come out of their rooms unless prompted. It takes a very self-sufficient, social person to dive right into this. I was told that they would pair my mom up with another resident to go to activities with and show her around for the first few weeks. That never happened.
5) Do not go into a facility (unless its urgent) with thoughts of moving them to another facility unless you have tremendous cash flow - which you don't seem to have. Each facility/community charges a one-time non-fundable community fee: usually the equivalent of one month's rent. If you move, you will get hit with that fee again. They all do this. I don't know what it's used for. I suspect it offsets the time the unit was vacant.
I cannot speak to Medicaid, but I'm sure they have all sorts of rules and hoops to jump through that others here have answered.
Sorry to be blunt, but I'm an only child and have dealt with this system alone.
I can share that their policies and shortfalls in what they sell you can be mentally exhausting.
Good luck in your search.
https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph
US News World Reports: https://health.usnews.com/best-nursing-homes
US Dept of Health and Human Services/Medicare Compare Nursing Homes https://www.medicare.gov/care-compare/results?searchType=NursingHome&page=1&city=Potomac&state=MD&zipcode=20854&radius=10&providerRating_overall=5,4&sort=closest
US Dept of Health and Human Services Nursing Home COVID data (something else to check out, cases and % of residents and staff vaccinated or not; PS my mom's nursing home has 98% of the staff and residents fully vaccinated and boosted whereas some facilities where we live the rate is below 50%)
https://data.cms.gov/covid-19/covid-19-nursing-home-data
US Dept of Health and Human Services Nursing Home Quality data
https://data.cms.gov/search?keywords=nursing%20home%20quality
Good luck with this and hope you are able to move forward with a decision that works for you and your LO.
This is place does not transition to Medicaid. We choose this anyway because my sister, who is only 60, is allowed to live there. The places that transition to Medicaid do not accept anyone under age 62-65; I assume they need to keep the age high enough so that the resident doesn’t become a guaranteed Medicaid pay for them. Which I understand. If this works, perhaps they will transition together to another facility after DS turns 62.
This facility also has a memory care program that my mom can participate in if she needs, without being a full “memory care” resident. They are also starting a memory care day program on the premises. So everything great in theory. The place feels vibrant. That was an important piece for me.
While expensive, I found that most all of the places that offer what we hoped for are within a narrow price range anyway.
I looked at many places, but there were many more I didn’t visit. Hard to know when to stop the search. A Place for Mom, btw, was no help. After an hour on the phone laying out every personal detail, they said there was nothing available that fit my criteria. The man was nice, but it was a terribly frustrating waste of an hour. It is SO hard to get information!
I laid in bed last night and thought I am like the father fish in the movie “Finding Nemo”—all I can think of is, what if something bad happens?? I pushed myself to that place where (as someone said earlier)—I have done my research, and now just plain have to make a choice. And move forward. I am a Christian and believe that God’s hand will guide the situation, but I have to make a move forward in order for that to happen. So, jumping in!
Go to the search question section of AgingCare and type in Choosing a Long Term Facility: Tips from a Certified Nursing Assistant.
You will see an article written by a CNA, Donna K. Woodward. that gives lots of good information on what to look for when choosing a facility.
There is another article on Senior Housing Options for Dementia Patients that is also informative. It is written by Marlo Sollitto.
but having said that I was in the same spot with both parents not long ago. My sibs had died and I was three states away dealing with elderly parents who were crashing on many levels and could not be at home. At the time I didn’t even know if they had any money. I had looked at some facilities in the area, one stayed in touch with me as they want to stay booked up, mom had a bad fall, went from hospital directly to assisted living. Dad had moderate dementia and I was able to bambozzle him into the same place a few days later.
There is no perfect situation in these places. This place was more expensive but They’re all understaffed no matter how much you pay. In my case I was lucky. These folks did pretty good by us. After mom died dad moved into memory care in the same facility. He has since passed away after I moved him to my home state.
I don’t want to sugar coat it, it was still the toughest couple years of my life trying to wrangle all this.
I haven’t posted here in awhile but this site and many good people here were a great help to me. Good luck to you.
Choose the facility that you believe will provide the best care. Look past the pretty dining room and activity schedules and make sure they are providing warm and thorough care. In my case, I chose an ALF that was very close to my house but I had to monitor the care more than I anticipated. If I could have the opportunity again, I may have chosen a facility further away where the level of care was more consistent.
Your mom has a good chunk of money to pay for a long time in a facility. Pick the one you think is best for how she is now would be my priority. You don't know how or when her condition will decline. With my mom, I know AL is temporary and at some point she will need MC or skilled nursing, depending on what goes first - her mind or her body??
Best of luck!
A community of moderate to severe would be very hard on my mother too, and she would not participate in things. 😢
None of the assisted living places in my area accept Medicaid. Residents have to move to nursing homes if money runs out.
If you are interested in using Medicaid, select that place.
Do all of the places that you are interested in have openings at this time? No wait list?
No one knows how long a parent will live even if they have serious medical issues. My mom lived to be 95 with Parkinson’s disease.
You mentioned about your sister visiting your mom. Have you discussed it with her?
Yes, discussed the visits with sister. My DS will, I think, enjoy just being a daughter and no longer a caretaker. That may change over time, but we will cross that bridge when we come to it. Hubby and I will be retiring to a cheaper home in a cheaper town in the next so years, so will have our “last place” and we will evaluate then. Our east coast town is incredibly expensive for care.
You're experiencing "Analysis Paralysis" right now, which is maddening. Here is an article on that very subject which may help you:
https://www.healthline.com/health/mental-health/analysis-paralysis
Best of luck to you!
The opinions of others often lead to even more confusion. Your long missive tells me that you have already thought of everything and are now on a hamster-wheel circling and circling. You are stuck at the barrier of "But what if" and let me tell you, having faced down a diagnosis if Lewy's for my brother, helping him to decide when and where to move, you cannot guess at all the "what ifs" you are missing until they pop up. And they WILL.
I can only tell you what I would do at this point. Your Mom is comfortable in her "own home". That is what was important for my bro as well. Therefore we chose the 2 room place for his last lovely things. He died 1 1/2 years after moving in, not having used the funds he had for at least 5 years. He was 85. We went with what would make him comfortable THEN, knowing he could live long and run out of money, hoping that at that point it wouldn't matter so much to him anymore. But it was all a guess. Then came sepsis from a small sore on his shin, and that was that.
You just cannot predict the future, and your writing shows us that even when there are choices, those choices aren't easy to make for someone else. Think about Mom and think about what she would want NOW, while it still matters to her, and go with that--would be my best guess.
I sure do wish you good luck. Try to look more that you are lucky to have these good choices.
Having survived cancer of the breast about 35 years ago I remember the CHOICES being the hardest part. Knowing you have to make the choices and live or die by the consequences. And the opinions of others just made the choices and options made it all the more difficult. I know how hard this is and I wish you the best.
And watching others’ AL fees be raised significantly without notice. Scary. 🙁
And a very good observation—that if she lives long it maybe won’t matter so much to her anymore. it would be another downsize of her remaining things, and maybe not so hard. Or she might not remember it anyway.
Thanks again! Good food for thought.