This may be a hard question, but how do I determine what level of care my mom needs?

Maybe Assisted living...forgetfulness is common there. But be prepared to hear a sales pitch wherever you look. Don't judge just by what they tell you. Pay attention to what you see, hear and smell.

againx100: Perhaps you should revisit your mother's neurologist to see what his/her assessment is for managed care facility living going forward.

I suggest you look at facilities that can "phase" her according to her increasing need. Seems she will need a place with skilled nursing care and memory care.

I am in similar situation with mom 86, with dementia and incontinence. I can only speak to my experience. I have been looking at options over past few months and have visited two board and care residential homes, and two memory care facilities. Just yesterday I visited the last one. I learned that in my state of California there are forms to be completed by mom's doctor before she will be accepted at any place. So a doctor appointment is my next step. Then I can submit all paperwork to my choice of facilities. I have narrowed my choices to a board and care with max 6 residents, and MC with five cottages each with 14 residents. Both offer care through end of life/hospice care. The board and care is smaller and has better staff ratio and is less expensive.The MC facility is much bigger and has lots of activities. It groups people with similar care needs into cottages. They use an ADL point system to determine level of care. A nurse there evaluates the residents and determines the points/level. The more care required, the more the cost. So, as others have said, and I have taken their words to heart over the past few months, do all your research now. Narrow your choices. This gave me control over a seemingly overwhelming task. I'm with you in spirit!

The Assisted Livings here have 3 levels. We ended up bringing care in for my mother in law. Your mom sounds like she was and it was between level 1&2

Hi Againx100 - while I didn’t get a chance to go through all of the answers below, I’m sure someone suggested speaking with her PCP first - yes yes yes! I am a certified geriatric care manager and this is my life on the daily helping my families/seniors navigate these very issues. While your mom definitely should be evaluated for next steps, I will say that some of the facilities I work with now take their residents from start to finish through every stage of their aging, from IL to AL to more skilled or MC. It’s a really great thing and allows continuity of care without them being moved from place to place. Maybe make an appt with a care manager near you and see what types of programs may be available in your area? Your local Council on Aging or Area Agency on Aging may be a great resource as well for you. All the best!

Ok first STOP AND TAKE A STEP BACK AND BREATHE! Next, make an appointment with her Dr.
and see what he/she advise. Do you have sibling nearby? Or can you organize a phone conference?
This is much too big a decision for you to deal with alone.
You should also consider contacting APS {Adult Protective Services and ask them if they can hook you up with a social worker if her Dr. doesn't suggest it first. But, please GET HER TO A DR. FIRST.
Then, to give yourself extra peace of mind when everything else is under control, make yourself an appointment with a therapist just for someone neutral to talk to. This forum is great but sometimes people need face to face assurance. It doesn't mean you're crazy, it's just to give you a personal sounding board, sort to speak.

Good luck and God bless.

You could try getting her evaluated by a geriatric case manager; these are usually MSWs but many also have a background in nursing. Because they are not associated with a residential facility, they can often give you a more unbiased opinion of your LO's needs. They may also offer both short and long term options that you may not have known about. Try reaching out to your local Office on Aging to get the names of such agencies.

So sorry you are at this difficult stage but know that there are a lot of us who have been or are currently in this boat with you.

It’s much better to plan and select a place now, before an unforeseen issue forces you. You are aware of waiting times, so that’s another reason to start now.

I also recommend consulting an Elder Care Mgr (name may differ on your state). I spoke with two; they had had a comprehensive understanding of services in my locale (Central MA). One I paid and the other one facilitated an Alzheimer’s support group I attended.

My husband is insulin-dependent diabetic, has dementia, and needs help with most ADLs. Until I talked with them, I was unaware that AL places in MA do not administer insulin; that knowledge saved me a lot of time. They were able to identify the best place for my husband (a hybrid between NH & AL).

Making the decision to move your mother will never be easy; it will take a combination of love for your mother and self-love. I wish you well.

I am in the same situation my wife 79
has dementia and other health issues. When she broke her wrist a few months ago she spent 30day in a care facility it was the worst care and a horrible place I will never put her through that again. The dementia was diagnosed just 3 weeks ago but explains a lot. She is declining very fast. I will continue to care for her as long as she knows who I am and where she is. Obviously some days better than others. Her doctor refuses to authorize care and insists in that terrible facility. Looking for a new doc now. When it comes down to it all that is needed is companionship food diaper and bed changes. For the cost of these jails I can do a better job. Since she is my wife I am on the hook for all expenses until I am broke. So many things to consider.

Memory care units usually handle a wide range of dementias, from mild to severe. Dementia progresses differently with each person. People of all levels of dementia are mixed together. The advantage in a facility is that they will arrange activities that are appropriate for their clients, with art, music, excursions, etc. Your mother might find some people she likes there. My mother did. Professional staff know how to handle incontinence and the other ways that people with dementia can decline. It takes a village...I would speak with the facility you have found if you think the staff seems freindly and professional, the place is well managed, and it is near you so that you can visit often. They may have to put your mother on a waiting list. If your mother is capable of getting involved in the decision, it's better if she also wants to go there. You may have to have a talk with her about what you are capable of doing. Visit her as often as you can, and you might be able to take her on outings or sit with her outside in a garden on a nice day, have a meal with her...but at some point, if she is like my mother, she will prefer to stay close to "home" and will not enjoy outings. Sadly, with dementia, it is likely that her condition will decline. All the best to you both.

Take a look at an “activities of daily living” checklist for reference. After you do your research of what is available now, plan to anticipate her future needs. Being “in between” classifications is good. The adjustment of the move as well as the “settling in” will determine what you will be working with and you can fill in any gaps as you start your journey. A resident that is on the different end of the spectrum can be tolerated and avoided by careful observation and your daily visits. Find a place, bond with staff and visit regularly.

This is the hardest decision ever. Take a friend with you to make a decision. A second pair of ears and eyes helps. Then, before signing anything go outside, go down the street get a cup of coffee, discuss it with your friend then most of all pray about it! The answer will come to you maybe in a voice, maybe in a peaceful breeze, maybe with a word that is spoken from a stranger. Then you can know that your decision is good. That is how I made mine.
Prayers

Last yr we took mom to a geriatric Dr. They explained how the home would provide needed environment to help with dementia. The sooner she moves in the better so she can reap the benefits of the activities, plus regular meals, regular check ins. Many patients improve by being in the constant care with enriching environment. I have seen positives.
The Dr hooked us up with a social worker who gave us the name of an advisor. This person knows the places and took us around to a few we picked out. She really helped us. I had had difficulty getting tours set up due to covid. But she got us in every where. When she finally met mom she said she would need higher level of care in AL and maybe MC. In hindsight she was right.

Things can go quickly. 6 mo in she moved to a different wing for more acute AL. 2mo after, to the next building for the highest functioning MC (1 of 4 levels).
Then we moved her to AL in new facility that takes Medicaid and does aging in place. The advisor helped us find that place too. Mom is in their highest level of care unit. She went from highest functioning to lowest. We were a bit worried at that move but within a month she is now in a geri chair with hospice visits every day. I wish we had known about this place from the start but we did what we could with what we knew.

Your mom seems to need MC. If you can get help like we did it would make things clearer. Someone to shoot questions to who knows all the facilities and knows elder care well.

Start now for facilities that seem close (MC) or may be needed in the future because when the stuff hits the fan, it'll be too late.

She sounds like a AL/MC person. My mom has memory loss, and physical issues, and does really well at AL. Each place is going to be different, but many ALs are a cross between AL/MC. If they have a MC wing, sometimes you can start in AL and if it progresses where she needs more help or wanders, then MC.

If facilities offer multiple levels of care, you can usually start at the lowest and move up when needed. The nurse at the facility will assess them and tell you.

I'd start now and take her with and see which one she gravitates to.

Lots of good advice. We are now in AL. I had been looking, casually, for several years. First online, then visits, and finally nitty gritty meetings. When it finally became obvious that a move was necessary, it was much simpler to check back with my few preferred places before making a decision. Our place is adequate, probably as good as any in the immediate area, but we came in determined to redefine in a year. We are under a month to month contract, rather than buy in, which permits this. I would say plan for the worst possibility; it can happen quite suddenly.

It is much easier to begin a search now rather than wait till there is an immediate need. I placed my parents in an assisted living facility that had 5 levels of care including memory care. We all felt comfort knowing my parents wouldn’t have to go to another facility if the level of care changed.

I found visiting facilities when I know I can still handle things at home to be the best time to visit because if they try to pressure their services, it is easier for me to say no. As with any major decision, I always state I never make them without considering my options for a day or two. Depending on how low their census is may determine how much pressure they apply. You may even find he best choice has a waiting list.

As with any decision, there will be a lot to learn about your options. The more facilities you visit, you will realize you have more questions than you thought. Most will invite you to a meal, or even some of the activities. This is a great way to observe them in a more natural setting. If nothing else, you will find some to eliminate. You never know when an emergency placement might be necessary and it will be that much easier if you have at least ruled out some of the choices.

As other have noted, this is very hard. But also looking ahead at what she will need and how it will be paid for is good to consider. Some facilities have it all in one place: Nursing Home and MC so one could start out in the NH and move to MC. These facilities often are Medicare and Medicaid qualified, look for that if at some point her resources will likely be depleted and Medicaid "long term nursing home coverage" will likely be needed. Moving within one facility rather than moving to another facility later is often so much easier, easier on the LO too.

One key question is (for you and a geriatrician, good to establishing a relationship with one over one's general primary care MD), is she "safe" and which ADLs or IADLs can she do fully independently not and what is likely 6 months from now or next year? The more she cannot do safely, independently and consistently (toilet, transfer, manger her on Rx schedule, shower, dress, clean, cook, walk, make sound medical or financial decisions) and what medical conditions does she have, more serious then more need for RNs and MDs on site; the more Nursing Home and perhaps MC is needed.

My 85 year old mom has dementia, but often sounds and is quite lucid. She easily gets confused, confabulates (makes up, fills in gaps in memory often with totally made up stuff), has a host of behavioral issues and many medical conditions; and basically is bed bound (she can w/lots of effort walk about 10 feet with a walker)... but it is totally unsafe for her to shower on her own or do much of anything on her own. So a nursing home, with a MC "wing" when/if needed, had to be my choice and one that Medicaid covers as at $15,000.00 per month she blew through what little money she had the first 6 months. But private pay got her into a quality facility and there was no need to move her to another place later, thankfully.

Good luck with this. This is so hard.

Good Morning,

Whoever is on the front lines, basically yourself who has seen any changes firsthand and provides that information to your Mom's primary care doctor. If there is a Geriatrician in the neighborhood or a Neuro-psych doc that's even better. Some of the psychiatrist for the elderly can be nuttier than the people with problems. Make sure you run all of your mother's doctors. You can check them out with your State Medical Society online.

I was/am in the same boat.

You could start with a one day a week morning respite "medical model". A lot of the newer facilities especially in the South are setting up different tiers of care.

I'm not sure what region you are from but some have the following: short-term rehab care, long-term care, VNA, day respite care, nursing home, assisted living, palliative care and hospice. Basically, once you arrive here, it's their final resting place.

Presently, Mom is at home with me in a 1st floor modified apartment with all the bells and whistles--hospital bed, railings in the shower, shower chair, lifeline button, censor on the door with camera if Mom sneaks out, etc. We cannot afford an Assisted Living (AL) which in my opinion is real estate. You pay for a room/studio apartment and everything is a la carte--laundry, prescriptions filled/dispensed, CNA dresses Mom, walks Mom to meals, gets her ready for bed.
All cost $$$. If Mom falls and breaks a hip, there's the door, the AL cannot provide that level of care.

This is today, anything could change with the drop of a hat--I found a one morning a week (4) hours per week "day" respite center. One morning a week is all my mother has the energy for. I drive her to and from, although they do provide transportation. She receives physical therapy and speech therapy, continental breakfast and a hot lunch. There is an RN on staff at all times. The ratio is 5:1 meaning for every (5) patients there is someone supervising. They paint, plant, etc. Some people are totally out of it, others are more responsive.

There is a fee plus a co-pay for therapy. Also some have sliding scale and/or grant money.

In all honesty, if my mother attended more frequently I think she would backslide as she is not in the same category (at least not now) with others who are so far advanced with the Dementia.

My mother has Lewy Body Dementia which fluctuates by the minute, hour and day. One days she's good, the next a different color.

It gives me (4) hours without worrying so I won't come home and find Mom on the floor. I, too, am thinking what is the next step? Take notes, or whoever is in the trenches should fill you in on anything.

Also the Veteran's Aid & Attendance is something worth checking out if your mother and/or father were Veteran's.

If you could have a plan in place beforehand so if something happens at 2AM as seems to be in my case you are not stuck scrambling. These things are hard to face and a lot of the "places for Mom" you can check out online--virtual tour. Start a folder, notebook and collect portfolio brochures. Check these place out at night too. Do a walk-through.

They took a poll of people who were on the Board of Nursing Homes (NH) and Assisted Livings' (AL) and asked "Would you like to live here"? No one raised their hand. Everyone wants to remain in their home--myself included.

But, it can't always be done if your mother's care outweighs what one person can provide. Look around now, ask around. Call your Church, a Social Worker, an Elder Attorney for a free one-hour consultation and especially speak with the Nurse Practitioner at your mother's Primary Care docs since they are more thorough and spend more time with you than the docs.

Perhaps you could bring in the VNA for homecare. Have the PCP write orders and start with that.

These things are difficult but I hope I gave you some hope. I will pray for you and your mother. Happy 4th of July--have some strawberry shortcake with
whipped cream!

It's more about what she can do that will determine if a facility can meet her needs. Go visit a few and talk to them about her abilities. They will also ask about the kind of help she needs throughout the day. There's no pressure for you to place her, but you would get a good idea of what level of care she could have.

The other thing that will determine facility is how she will pay. If she's self pay, then you just find a facility to tell you what level of care she needs and pay for it. If she's going to need Medicaid to pay for her bed, you're only option may be Nursing home. Some states do have some assisted living type arrangements with Medicaid, while others do not. Another reason to talk to a couple of facilities.

Ah…you are having the same difficulty as I had. There is no standard. If you have an elderly person who appears to function fine 90% of the time, then when the dementia is at its worse, they need a lot of 1 on 1 care….that is a very hard fit.

I kept visiting and asking a lot of questions and visiting and touring with and without my Mom. She ended up going to respite at one of them and that was an eye opening experience which helped me further understand and narrow the choices.

Let the facilities ask you the question about level of care. It helps them determine the cost. Facilities vary a lot in what they provide, what they are licensed for, and what happens as the dementia gets worse. When you are interviewing these facilities, remember they are also seeing if they want you. Remember you will be talking to sales people so you will be getting the “rosy” picture with the potential for lies and false promises.

Don’t think in terms of level of care as this is a subjective measure facilities use for billing. Think in terms of what does the facility provide, what happens in an emergency, what other residents are there and what would happen in the future.

If a facility is too impatient with your questions, mark them off the list no matter how highly rated they are. You need a facility that will work with you, not one that forces you into their mode of operation.

I am in the middle on your comments now, I chose a facility that has an Assisted Living and separate memory care unit. I placed mom in memory care at first but realized quickly that it was not the right fit even though she does have dementia. Most of the residents were non-verbal which was not enough stimulation for her. I moved her, after one week, to the ALF side. It has been about 6 weeks and she is certainly more stimulated but the care is not as 1 on 1 as she received in memory care. I am giving it time, working with the staff to see how we can adjust to her current level. I will say that having a “mid-level” option would be great, something for moderate levels of cognitive levels but with a higher level of care. For now, I am staying engaged to help as the staff works to figure this out. It is a different room and staff when the time comes to move to memory care.

Your mother is worse than my step-mother who we just moved from AL to MC. Why? Because she is on rapid decline and it is better that she acclimates herself before the shade rolls all the way down.

Perhaps you should trust the people who are clinically trained, it is obvious that there is a significate problem, one that you need to come to terms with and accept.

You seem to be wanting to come up with reasons for not accepting the obvious.

This is not about you, it is about what is best for her, long term.

I understand my brother was like you are, coming up with as many excuses as he could, well, she was in MC for 1 month and said "Thank God you had the common sense I did not". Translated, she is where she needs to be.

Good Luck, make the right decision for her.

You will know when you are ready to do the sit downs with the facilities. The day will come. You are already on the path there. So just trust your instincts. Meanwhile you are posing the correct questions, and thinking the right thoughts.
There is a bit of a movement now with some facilities, and this will get better with time I think, to have an intermediate level of care between that needed for memory care and ALF. It has a bit better staffing and is locked facility, but is otherwise more like ALF.
Just try not to guess, watch and the decision will be made when the time is right. I surely do wish you the best.
And feel free to visit facilities. Let them know that the time isn't now but you recognize it is coming. Let them know you don't want calls, but you would appreciate a sit down talk with folks. If pressure is felt recognize and tell them, and tell them not to do it.

My mom is not as advanced as yours (she's not even incontinent and needs no medical help at all) but she's in a SNF/memory care already. No way could she function in AL and even an AL/MC place didn't offer enough help for her. There are several people at her same level in her facility and they are all friends and they do lots of activities together. Each facility has different levels of care, and they assign each resident their level based on regular assessments of their needs and functioning.

From your description Memory Care would be the best option.
Tour several communities and see what the MC is like. Some have several MC "sections" or "houses" that while in the same building have different décor and feel about them so they seem like contained units. The staff tries to keep the residents that are more active involved and those that do not wish to participate in activities can find a quite place to be.
Is there an Adult Day program she can go to a few days a week? This would get her involved and meeting new people. This might also "bridge" the time between now and when you are ready to have her move into the MC that you choose.
The move to MC will be much more difficult for you than it will be for her.

Hi! I am going through this with my Aunt right now. She is 73 and sounds very similar. Her case was so “in the middle.” The bathroom memory issues and her inability to fix herself a small snack qualified her for MC. There are levels and the building is quadrants of levels. So everyone in her quadrant will be also a moderate level two. She will be in the common area with other levels but only to eat and do some activities if everyone chooses to participate. I was relieved that she would be with people on her level. She moves in Thursday. Good luck to you and your Mom!

Find a memory care that separates the residents in regard to their level of cognitive abilities.

My mother's MC had three levels of care -- very independent, mid-ground abilities, and low abilities. She started out with the mid-range residents which made up the majority of the people there. They could feed themselves, participated in activities, and could come and go to their rooms or some needed a higher level of physical care like my mom who was wheelchair-bound and incontinent. They were all in the same enormous common room, but one group was at one side of it, and the other was on the other side. The independent folks had their own private room with a TV and coffee and such, but they were free to come and go throughout the facility.

Mom never really participated in the activities all that much -- more due to her vision and hearing issues than her level of cognition -- but the caregivers kept her in the common room all day with everyone else, because just being around the activities and other people was stimulating for her. In the last months of her life she was with the lower-level folks because she was sleeping a lot more and really wasn't eating on her own any longer.

Don't look at memory cares just from the outside. Really tour the places, ask if they have different levels of activities, and see if they just keep everyone together or not. I looked at a couple of other places for Mom where everyone was bunched in together -- including a mentally disabled younger woman at one place(!) -- and they were clearly catering to the lowest common denominator in that they parked everyone in front of a TV. My mother's place only turned on the TV for a half hour after dinner each night, and otherwise they had a different activity every half-hour or 45 minutes to keep things lively. It was an excellent setting, and they were able to care for her all the way until she died.

As long as there's any dementia beyond the very earliest stages, I always recommend memory care because they know how to handle dementia patients and it's so very much more than merely doling out pills and helping people with dressing and showering like assisted living, plus people with dementia don't make friends in AL as easily, if at all. Skilled nursing is for patients who are largely bedbound or wheelchair-bound and can't really do anything, including activities. My mother started in SN (a long story), and it darned near killed her because she was neglected. She wasn't sick and incapable of doing anything, so they didn't really pay attention to her. She had dementia and heart problems, but everyone else in there had had strokes or was rehabbing from surgeries.

I really recommend contacting APlaceforMom.com. They were invaluable in helping me find the best match for my mother with her memory care place. You'll get bombarded with phone calls from various places at first, but it gives you a list of places to check out. Once you tell them to stop calling, they have to stop, and they do.

She is continuing to decline, so she will fit the MC category sooner rather than later. Better to go that route than to have to struggle with the same sort of decision a few months or a year from now. She won’t really understand the differences anyway. Sorry you are going through this. It’s never easy.