My wife and I don’t know how to assess what kind of care her mother with dementia needs. Can anyone offer advice?

Hi all, original poster here. Thank you for all the immensely helpful responses and suggestions. Knowing the ADLs has helped a great deal, as have the videos several mentioned. I spoke about all this a bit more to my therapist, and he said this actually sounds like classic caregiver burnout. I’ve been handling everything to spare my wife the toll of interacting with her mom who is basically gone now. He reiterated that the signs and threshold have less to do with the classic events of falls, etc and more with what can they actually do on their own and how well can you actually help. And sadly with no other family here and many organizations closed down due to covid, we don’t have a lot of options except for a facility. The quotes for in-home care were out of her budget. We found a local memory care facility that assesses individual needs and abilities and keeps residents with other residents with the same level. I feel like this will be great for her socialization and mood while having the day to day professionally managed. Fortunately we have everything set up legally, so no problems there. It’s just sad to realize your limitations when it comes to keeping someone safe and leading a good quality of life for their circumstances. I think my wife and I are both dealing with guilt over realizing this, but the current situation is probably doing more harm to everyone involved than good.

Your wife and MIL are very lucky to have someone with your compassion and understanding on their side.

I'm glad to read that you have more in-depth investigations under way, because these should help everyone see where they stand right now. Your MIL is pretty young, her dementia doesn't leap out as any one particular type, she's physically able but clearly in need of a good deal of support in day-to-day life - very tricky.

While you're waiting for the further assessments, why not have a look at specialist dementia communities/facilities in your area and see what's on offer? I'm hoping that you'll find one or some that aren't just labelled "memory care" and stuck onto ALFs, but instead really are safe places focused on quality of life for able bodied people living with dementia.

Also, to help both you (endless patience can't really be endless!) and your wife (yes, her heart must be in her boots), look up Teepa Snow's online seminars.

Involve the doc. they can assess her or have a nurse assess her meds and level of care needs/options and progression of things. Is she mild,, moderate, how long these stages typically progress etc. You can also call your county's dept of aging for help too.
Id also look into getting her a tracking bracelet so she cant wander, or a door alarm that you can have the remote chime at your house, so you know when she's out the door. Winter is coming. You dont want her wandering without a coat.
You might look into adult day care. Will give you some respite and you know where she is during the day. I think you can go as needed. I dont think your locked into anything but you have to call and ask with covid. They will give a tour.
You can also get collage age kids who are doing nursing programs, OT programs to come in a few hrs to give you a break. It looks good on the resume. Even a retired person or cna to help if you need extended hrs or just need a break from caregiving. Good luck.

Based on what you have written, it sounds like you and your wife have taken the appropriate steps in having your MIL evaluated by a neurologist and in setting up the appointment with the neuropsychologist. The next big step is deciding what to do next. That is based on what is best for your MIL, of course, but also what is best for you, your wife, and your young family. It would be worthwhile to try to get a geriatric social worker to assist with next steps. You could ask your MIL's primary care doctor for a referral or just do an online search. In my experience, you have a few options.

The first option would be to have your MIL move in with you. Based on what you have said, regarding her not respecting the boundaries and given that you have a young family you are trying to raise, that is likely not the best option for the well being of your family. You already have a great set up in the fact that she lives next door to you. The next option would be to keep her in her own home but to hire a caregiver to be with her. You mentioned you do not think she needs constant care, so you could start with a caregiver to be present daily for the set periods of time. Is there a pattern as to when she generally comes over demanding your time? If so, this is when I would have someone come to be with her. If there is not a pattern, then I would start with the periods of the day when you and your wife cannot be available to help her. I will say, hired caregivers can be quite costly. Medicare benefits don't generally pay for this type of care, so it is usually paid for out of pocket. A social worker can help to determine if she might qualify for some weekly hours paid for by Medicare, however. Having someone come for set periods of time each day can be helpful in offloading the burden, but she might eventually need to transition to having someone with her around the clock. I have had some family members use baby monitors to watch their loved ones when someone cannot be there with them. Though not always the best option, it might be a good option for at least a while. In addition, many families utilize adult day care centers. This can be a great option to cover some hours of the day in which your MIL will have supervision and will also be socially engaged with other people in a structured environment.

The next option would be to move you MIL to an assisted living facility. From what you have said, she seems to be still able to perform most of her own basic ADLs but still needs some occasional help and oversight. This too allows for some continued independence but still some social engagement, structure and oversight.

The other option would be a memory care unit. Oftentimes these are within a nursing home, but there are some facilities that house these units separately. Your MIL might not quite yet need this option, however, as she seems to still be doing much on her own. If you decided to go with the above option of assisted living, you could look for a place that has the continuum of care in which she could start at the assisted living level and then move to nursing home or memory care as her dementia progression necessitates. The decision to move someone can be a tough conversation to have with the family member that needs to be moved. If the conversation is had at the start of the process and you allow her to be a part of the decision making of where she lives, there is often more buy-in from the person.

In my experience, her evaluation by the neuropsychologist can be very beneficial and help to shed some light on where your MIL's deficits lie and where she might need added assistance. Once this evaluation has been completed, you and your wife can discuss together what might be best both for your MIL and your family. It is obvious both you and your wife care about your MIL and want what is best for her. Ultimately, I believe you will both come to that conclusion together, though it can be a hard path to get there.

GDE; I just want to chime in here; my mom had vascular dementia.

When mom was about 88, she stopped coping. Gave us my SIL her check book and bills and asked me to visit once a week to set up her pills. Then we started getting phone calls about "emergencies" that were anything but.

To make a long story short, the best advice we got about what level of care mom needed came from the geriatric psychiatrists who saw her; one in the hospital after an episode of anxiety and high BP; one who saw her at the IL facility who strongly recommended the complete neuro psych workup that revealed a level of cognitive loss that we could not have imagined.

I encourage you to go ahead with the neuro testing--it will tell you a lot; but in terms of recommendations for the level of care, see if you can find a geri psych who will talk to you about medications and mom's day to day need for support.

Get a Neurologist for an evaluation. Dementias are not all the same. Treatment varies greatly, so it is important to get an accurate diagnosis. Is it caused by a stroke or tumor or infection? If yes, can it be reversed? Is it Alzheimer's or Lewy Body Dementia or Parkinson's Disease? Find a highly recommended Neurologist, by calling support groups for the various types of dementia and see if you get a couple of Dr. names that are repeatedly suggested. A little bit of investigative work can help a lot and possibly save tears and money. Best of luck to you.

Your MIL's primary care physician can schedule further testing if needed. They can also get a social worker or occupational therapist through home health to do an assessment of her needs and go from there. MIL may need more paid caregiver time. My mother and aunt take Aricept which for my mother(84) has seemed to slow down the cognitive decline. Aunt (91) not working as well. You need a geriatric physician, it makes all the difference.
My mother lives in a senior community in her own apartment. She has an evening sitter 4 days a week. My sister and I visit 1 day a week. So far this is a good fit and she has made several friends. I changed her insurance so she had access to a visiting physicians services. What a huge help.
Good luck finding a good fit for MIL.

My mother had two cardiac events last September, the doctors told her she was no longer safe to live alone. (I live an hour away.) She is a resident at a facility owned by Atria that is excellent in their care, food service and activities. I kept her caregiver since my mother was attached to her, she provides a second set of eyes and ears for me. I take my mother to all doctor appointments and other errands on ‘non Jane days’. So I’m in constant contact.
My mother is not social, she prefers to remain in her apartment to read, eat and watch TV, at least she is safe. I am shocked with how rapidly she has mentally declined, but again she is as safe as can be. She can still shower, take care of her hair, getting dressed, etc. but now doesn’t want to “fool with it” every day. Some days she is very clear headed even though her short term memory has seriously declined.
What does this have to do with you? Take the time to find a place that works for YOU as well as your MIL. Hire a companion/care giver if you can while she is in her new place, it will be good for her and you.
DO NOT keep her in her current home, it screams danger-stairs, access to come and go out her front door and ways in which you never considered possible. Prior to my mother’s move she was unlocking the doors every night so the paramedics could get in if need be. I installed a realtor type lock with a door key inside and gave the code to Life Alert, she still unlocked the doors. I certainly never thought of that scenario.
One day she left the toaster oven on for hours, burning the countertop. She stopped eating anything other than ice cream, coke and chips, even heating food in the microwave was too much trouble.
These are the things you won’t likely see unless you live with her. If you place her, she will be much safer and that will translate into less stress for your immediate family.
Your MIL will not get better, it isn’t her fault but it will impact all of you. How rapidly she declines is not predictable.
Maybe there is an Atria owned facility in your area you can check into. Ask people you know if they’ve heard of any good facilities, a social worker from the hospital recommended a few when I was looking.
Good luck to you.

Unless you actually live with her then you will see her cognitive decline. I too thought my mom wasn’t in danger until I watched her boil an egg on the stove with no water in the pot. Looking back I will give you a million things I did not see. Constantly called me for things like my remote for the tv is broke. I can’t open the dishwasher ( she accidentally locked it) she couldn’t find her glasses, Mail was left in all places in the house. Would lose all her contacts on her cell phone then tell me she needs a new phone. Coffee maker is broke only 1/2 cup of coffee cones out. Would go through so much food, when I had to stay with her cause she hurt her back I saw her eat 2 breakfasts and 2 lunches. The amount of food she was consuming was unreal. She fed the dog sometimes 6 times a day and always said the dogs not eating then tried to force feed it. Poor dog would hide under the dinning room table. She was very convincing and I believed her until I lived there for a week then I realized she needs 24/7 care. I watched my mother do a load of laundry then put it in the dryer and check the dryer literally every 2 minutes after doing that 7 times I had to stop her.. I can’t understand how she can remember there was clothes in the dryer but couldn’t remember checking to see if it was done literally 2 minutes ago. Also middle of the night getting up to use the bathroom a million times sometimes a minute apart it’s unbelievable until you see it. She lost boundaries and can’t remember conversations you had about it. I visit my mom and stay for an hour and as soon as I leave I’m not even home yet (live 3 min away) she call my cell and says OH HI just checking in with you I haven’t seen you . It’s so sad. Spend one full day with her and watch her and you will see now that I gave you things to be aware of.. good luck

Firstly, so sorry you are dealing with this very hard situation. But congrats on your new family member!

It sounds like you are learning very fast & keeping your head. Well done.

Mother has suffered a health crises & quickly moved from independant to dependant. You flagged the big dangers: Falls & Fires. Another big one is FEAR. This can cause wandering (as mentioned) or the social/emotional need for constant company. (In my area a Grandfather went wandering with his new infant grandchild - Police involved - thank goodness no-one hurt).

An in-depth assesment by a trained Geriatrician or Psychologist can be of use when capacity or skill testing is required as the answers will correlate directly into quite detailed real life skills.

Whether this is useful for you now... as you have already seen a drastic drop in skills & already already know the dx vascular issues...

With vascular dementia, it progresses in a 'step-down' way - each TIA/stoke causing further damage.

It is possible that Mother's symptoms may remain stable for a time. So she may still be able to be managed at home, maybe with increased regular aides & attending a daytime memory care program.

But I think it is very wise to be researching & preparing.

When Mother's care needs become too great for the home environment, the options will be 24/7 aides or residential care (either Assisted Living or Memory Care).

She may be at the cusp or there already.

A Memory Care Assisted Living facility shrinks down your mom's world to where she can manage things a whole lot better. When she needs care with ADLs, she can get that care...........and with dementia, things can change SO dramatically SO quickly, that your head will spin off. She can become incontinent overnight and require Depends and daily bed linen changes along with help in the bathroom. Not to mention showers and getting dried off, etc. The list is endless, really. I don't know how on earth you can possibly manage the care of a newborn, a kindergartner and a confused mother suffering from dementia!! That's way too much for anyone to manage, in reality!!

My mother lives in a Memory Care ALF and isn't a 'danger' to herself, really. But she's SO confused all the time, she can't remember if she even went outside to sit on the patio. She needs help with lots of things, too, which she gets over there, along with other senior companionship and interaction that keeps her entertained. She can complain 24/7 about the other 'stupid morons' she has to deal with who are in much worse shape than SHE is............she loves to complain and she has plenty of company doing so!

I think a lot of people erroneously believe that a demented elder has to be either catatonic, eating Ajax or running down the street naked in order to be 'ready' for Memory Care, which isn't true. If your mother can't manage her life by herself at home, then she's ready for Memory Care Assisted Living. If you can't manage to care for her AND manage your own family's lives, then YOU are ready to have her placed as well.

Wishing you the best of luck!

I'm new here and I just want to thank everyone who answered OP so thoughtfully. You all have helped ME very much already. Thank you!

Too much to say, so this will be continued in a reply to this post.

Let me start by saying that every person's journey down the dementia path will be unique. Will they share some common symptoms and behaviors? Absolutely! While the link to ADLs is a good start, dementia is a very complex issue. Dementia is an umbrella over a number of different cognitive disorders. But, even when two people are Dxed with the same type of dementia, they will follow their own path. You have 2 children, one still a baby. Think of it like babies - each develops at their own pace. Some walk or talk early, some later. Some roll or sit up early, some later. There is NO timeline really. It's the same with dementia. Each will exhibit some or all of the "usual" symptoms and progress at their own rate, some faster than others.

Also, consider activities like self-care as long-term memories. Generally (it can be different for other forms of dementia) in the earlier stages there will be repetition, neediness sometimes, and losing higher level functions like bill paying/finances and following instructions (think cooking, using a remote or phone), or even being capable of understanding some dangers. Falls are not necessarily what you should be focused on, although preventing them is important. Self-care/hygeine have been long time activities, so like older memories, these are more likely to be lost later.

First inkling for my mother was repetition. She lived alone about 1.5 hrs from me, so it was primarily by phone I realized there was an issue. I knew nothing about dementia, but had to learn quickly! When I found she was having trouble with finances, I stepped in and took over (good that you got all the docs in place!) The car went at some point (also lucky for you doc was willing to report!) Since that required helping with groceries and other supplies, it became apparent she was no longer cooking. She would get into pickles by misplacing or not charging the portable extension. She managed to turn the ringer off on the wall phone (had to get a PD wellness check!) We tried bringing in aides, 1hr/day to increase if/when needed, but less than 2 months later she refused to let them in OR consider moving ANYWHERE, esp not to AL (which had been in her own plans prior to dementia!)

So, falls are not the primary concern unless she is/was unstable already. The stairs are a concern (I hated mom's stairs to the finished basement area!) While superficially things may seem okay, there may be lapses you aren't aware of because you don't live with her - closer than I was, but unless you can spend several days to observe, you really don't know what goes on!

The facility we moved mom to does an assessment of her capabilities and needs. This wasn't free - it was part of the commitment to move there, so you might not be able to ask for this at any place. When we hired the aides, the agency did send a nurse to do a GOOD dementia test, in her own place with us there. Medicare paid for it. She recommended a timed/locked pill dispenser and other suggestions. I'd inquire with the place already being used to see if they can do assessment and how much it would cost to have a daily companion (until you make the decision to move, she needs someone to keep her occupied, so she isn't interrupting your routines so much.) I wouldn't go live-in or 24/7. Start with a few hours/day and adjust as needed. You might need to go 6-8 hours, so she doesn't interfere with important daytime activities.

"...come to terms with the fact that she is only going to get worse..."
THAT is a fact! However, noting several times you mentioned she is progressing faster, has anyone suggested testing for UTI? UTIs do present oddly in elders, esp those with dementia. Mom's first after moving to MC led to extreme sun-downing. Subsequent ones have presented as night time bed wetting. ANY sudden or quick changes in demeanor or behavior should start with a test for UTI. Easy, inexpensive and can rule out UTI.

I think you would do well to look into a senior community for your mom. The likely reason she's always always coming next door to your house is because she's bored and lonely. She also wants someone to fight with which is common with elderly folks. It would be better for her to live in senior community. She would be around other people and they offer daily activities and outings. Human beings are not solitary creatures by nature. We all need socialization. Your mom needs it too but doesn't know how to ask for it. In my experience of working in caregiving for years is that in a situation like yours, it's always better when the family isn't right next door. Moving a companion in with her won't solve your problem. What will end up happening is the companion will become her source of complaint and she will vent to you about her incessantly. She needs to be in a senior community. I worked in a lovely place years ago which was an assisted living senior community. The residents all had nice rooms, took their meals in a big dining room, and the services offered were laundry, medication administration, and some assistance with hygiene if someone needed it. The residents were always going out on some supervised outing or another, or playing cards and bingo down in the entertainment hall. The place often got lively on the night shift too. Residents would host card games and little parties in their rooms for friends. It was really nice. Families visited whenever they wanted. Some of the residents still had cars. It wasn't a nursing home. I'm sure there are places like this nearby to you.

It appears that your MIL needs a companion/caregiver during the day - especially while you need to care for school needs and baby needs at the same time. Talk to home health care agencies to see how much it would cost for help for several hours each day. Alternatively. are there other people who can "fill" your MIL's day with their help: family members, friends, people from church, or adult day programs at senior facilities? She may not need help with her activities of daily living, but she obviously needs a person in her life during the day.

Look into memory care facilities now. They're experts at handling those issues, and they can stimulate people with dementia and really make the quality of life much better than you'll be able to.

Don't worry about the "typical" nursing home requirements, because memory care covers the gamut of issues. My mother is in a wheelchair, is incontinent, and nearly blind in addition to her dementia, so she's a classic nursing home patient. However, her place also has a 47-year-old man who seems mostly fine, seems to need no real care, but has either early onset Alzheimer's or a head injury that has made it impossible for his wife and two children under 10 to handle at home. There's also a retired neuroscientist who seems fine as well. He's told me all about his research, watches football, read a 600-page book I loaned him, and can dress and feed himself with no issues. He just can't live alone, that's all.

A good memory care place will separate the more functional people like your MIL from those who are low-functioning, non-verbal, or unable to really do much but stare off into the horizon. Don't choose one that doesn't do that. Look for one that has a lot of activities and doesn't just park everyone in front of the TV all day. Your MIL should be able to participate in things, but the staff should also be encouraging her to participate if she doesn't care to.

Look at several places, and they should be able to send someone to your MIL's house to assess whether she'd be a good fit for their place.

The alz.org website for Alzheimer's Association is a great asset, too. Dementia is a real learning experience for everyone.

See seems like a good candidate for assisted living. She still maintains some autonomy but she has companionship, help, and some oversight. You also can control visits when she is not right next door plus if she needs help - TV remote won't work, can't find her glasses, etc - there is someone to provide that help that isn't you or your wife. They will take are of medications but you'll still be responsible for financial, etc but you can do this on your own schedule. She'll probably progress to needing additional assistance so it's best to get something established now while she can better establish new routines to carry her forward. When you are looking for an assisted living situation also factor in the distance from your home to the facility. You will still make lots of trips to and fro and having it be a quick trip so you can just pop-in and pop-out without having to plan a trip is essential. This advice was given to me when I was looking for my dad and it has been the best advice I received.

So sorry you and your family are going through this with MIL. You will get some great suggestions here. So glad you have gotten all your legal ducks in a row and you are quite right this is not going to get any better. I'm rather disappointed that your MIL's MD was so not a bit more helpful. Perhaps getting MIL to a geriatrician or better yet a geriatric psychiatrist would be more helpful as they have access to resources which they hopefully will share. Not sure where you are located but frequently the larger hospitals have dementia specialists associated with them. In NJ we have Penn Med and Meridian Healthcare.
It is time to begin the rather daunting search for a good facility for MIL where she can get care and attention she deserves and you and your wife can be just family when you visit rather than stressed out caregivers. Two major factors go into play in finding a facility: funding and care reputation. Funding: does MIL have enough funds to go into a facility of her choice as a private pay for 1-2 years? ALs generally do not take Medicaid and some of them require really large entry fees. Remember that Medicare is a health insurance and will not pay for custodial care even though the need for that care is due to a medical condition. Will she need to apply for Medicaid, which is largely federally funded but state administered? Each state is different but in NJ this can be a long trip so get ready for their 5 year look over her (and thereby your) financial shoulder: bank statements, social security statements (1099s) , birth, marriage, death, divorce certificates, mortgage statements..... you get the idea. If you are like most of us you have no idea where all this stuff is so start looking now.
My suggestion is visit each facility you really like 2-3 times, at least once with no announcement. Rough on the staff yes but you might get a more accurate picture of what life is really like there. And remember covid19 has put a damper on activities and reduced staff in even the most wonderful facilities. If you are visiting an AL with MC attached don't for a minute believe the statement "and she can age here with us and live the rest of her life with us." Get that one in writing because for the most part, it's not true. If MIL ever needs nursing care on a prolonged basis an AL even with MC, will probably not be able to keep her. ALs were created for people who only need an "assist with activities of daily living" and MC frequently just is an extension of that with more concentration on memory care activities. They don't have much staff that are trained in nursing so you ideally want to get a place that has a long term care /skilled nursing (LTC/SNF) section attached to it and you want a written quarantee in the contract that she will have a bed in that facility (medicaid or foundation paid) when her private pay runs out. Don't sign any contracts until you have your attorney review them.
When you visit facilities use your ears and nose as well as your eyes. Sniff the hallways - it should smell clean but not highly perfumed. Listen to the sounds of activities - how does the staff address the residents and what tone do they use? Is there a lot of interaction between staff and residents? And of course, wisely use your eyes. Don't be overly impressed with the chandelier or the baby grand piano in the lobby. You are paying for that chandelier and if Mom has not had one in 80 years, she doesn't need it now. And how many times does someone come to entertain the residents by playing the baby grand? Can residents who play use it?
Of course, check out the Medicare rating section but generally they only rate LTC/SNFs,
Good luck in your quest, keep us updated and let us know how we can help.

Are you familiar with IADLs (Instrumental Activities of Daily Living) and ADLs (Activities of Daily Living).
Read about these a bit. They are useful to medical professionals when deciding what level of care is needed.

Here is an Aging Care article that can help. It explains who can do the assessment and even includes an assessment checklist. Also google the terms to read a bit more but this is a good article to get started.

https://www.agingcare.com/articles/activities-of-daily-living-why-this-measure-matters-186853.htm

A couple of things you mentioned in your post to consider.
A new baby in the house taking your attention might be a source of anxiety to MIL.

Also this “can’t remember discussions about finding a time to come by for help and gets mad when we try to talk about them.”

You are absolutely correct, she can’t remember and such discussions will only lead to more upset. Watch some Teepa Snow videos on YouTube. You can learn techniques to redirect MIL and help her transition from her problem of the moment to another train of thought.

Also try to check out the book “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. It might influence your thoughts on facilities. Another book that is often recommended is “The 36 Hour Day” by Mace and Rabins.
Edit: Sorry just noticed the last book had been recommended already.

It sounds like you do have good ideas on getting info and plans in place.

We had a family friend who lived on his own after he was diagnosed with dementia. He had regular hallucinations that children were jumping on his bed. This scared him and he ran into the street one night and fell, suffering a fractured hip, which he never recovered from. Your MIL may not be at that level of progression yet, I’d keep in mind that falls might not just result from poor balance and weakness. My LO had some hallucinations too, but hers were pleasant and she never was frightened by them.

Maybe, her doctor doesn’t realize that the truth is important with an assessment. They don’t base needs on the magical thinking that the patient may have. That’s why really observing her for an extended time is important. That way you know the truth. She may not be aware of her issues or may be embarrassed of them,

Thank you for the responses. And yes, I made sure to get durable POAs in place when she was still lucid (Feb 2020) and not on any meds (Donepezil currently) for finances and health care a while ago when the first missed credit card payment happened and when she forgot about going to routine doctor appointments, so everything on that front is covered thankfully and my wife and I can keep her finances secure and prevent any large, impulsive purchases. I think you’re both absolutely right that we see the care facility situation coming sooner than later. I think it’s been a hard thing to grasp considering she doesn’t yet display some of the classic issues that warrant moving to a facility, ie, falls or inability to bathe/use the bathroom. But your point about all of our safety is well taken. Proximity can help, but we don’t want anyone at risk due to a fire. Fortunately her pension and Soc Sec could cover a memory care facility; it’s just a matter of transitioning some loans out of her name so that money can go to it. Her delusions have gotten more “specific” for lack of a better word—the small boy at the top of her stairs who tells her that her daughter (my wife) is mad at her, or the man who came by and knocked a picture off her wall, or her ex husband walking around her yard. She’s progressing through the beginning stages very quickly, and I think facility care is the next responsible solution for her safety and given our limitations as non professionals. Frustratingly I asked her primary care doc about an assessment and she said, Why? What’s the point. If she knows it’s happening she might just be on her best behavior and if she isn’t, what is the assessment going to tell is that we don’t already know. I wanted to reply that we’d know if she was safe or not despite not having had any falls or started any fires, etc, but ultimately didn’t. And her primary who is aware of the decline hasn’t said she needs a certain level of care she isn’t getting. So kind of mixed messages since the doctor also took away her driving privileges, by recommending that to the state. I think my wife and I are just going to have to come to terms with the fact that she is only going to get worse and needs professional facility care despite her not overtly seeming like a danger to herself or others. I was just recommended the 36 hour book the other day and will be sure to check it out !

I think that you do know that you are looking at placement sooner than later. I think that 24/7 care in the home may not be possible due to cost, and hope you are now exploring costs in general. I worry about your Mom being in a condo where she is not just in danger of falls (which you feel she is not at risk for) but of starting fires and etc. If you live close, all are at risk.
I wish you good luck. Your descriptions are so complete and I know that you do see what is coming. Mom is quite young and she may need long term care for some years. I think I would not waste her assets on 24/7 care in her home as it will eat through resources quickly unless those resources are pretty endless.
I am hoping your Mom's POA and paperwork for everything is all in order, for her dementia now would make a POA done now out of the question, and guardianship would be needed.
I sure wish you good luck. with a new baby you are clearly the meat in the middle of sandwich generation in terms of everyone needing you quite a lot.

Hi there. Welcome. I'm sorry to read about your MIL. You'll probably get a lot of responses on this. Everyone is different, but, I'll just say what I discovered when my LO was diagnosed with dementia seven years ago.

Besides the early stage, it's really not feasible for a person with dementia to live alone. The brain damage changes so many things about the way they think and their reasoning is greatly decreased. That's why they can do things that you would not expect, like, wander away from home, leave a stove on, eat nonfood items, mistake medication, soil their clothes, not bath, etc. They are also prone to depression, anxiety, delusions, hallucinations and sleep disorders. My LO used to call me a lot. I couldn't figure out why, until it was clear that she was afraid. She would tell me that things in her mind were changing....she felt like she was dreaming and was scared. She needed me to reassure her. That's one reason people with dementia want to be near loved ones. They need reassurance and comfort.

There may also be lots of repeating. Over and over. It can be challenging. Have you read much about dementia? I might check out the book, The 36 Hour Day.

You could get a professional person to assess your MIL to see what her current needs are. It's important that the get the true picture of how well your MIL is functioning. Even though, she's next door, have you actually stayed in the apt with her continuously for 24 hours? I'd do that so you can see just how she's functioning. I'd observe how she's really doing.

I'd keep in mind that most people with dementia progress and the level of care that one may get in a regular AL may not be enough. Memory Care may be needed. If you are looking at facilities, I'd ask about that. If you're thinking about hiring some help. I'd ask if they have experience with people who have dementia. That's important. Also, since she knows you are next door, it may be a big job to keep her from coming over when she wants to for any caregiver who is staying with her.

It's smart to plan ahead. I hope you find the answers you need.

Need to add that you might want to make sure your MIL has signed DPOA, HCPOA and Advanced Medical Directives. These are helpful in managing her care and financial affairs. If she hasn't signed them, I'd consult with an attorney immediately to see if she is still able to do it.