Where to begin and how to proceed with M.I.L. with dementia living with us over 3 years?

You need now to do the Medicaid applications for placement. There really is no way around this, so just do it. And no, nothing will "figure itself out" here. You will need to act. If you need to fudge how much self care she is capable of then DO THAT. This is real life here. You will be sacrificing some of the best and most free years of your life to caregiving unless you take charge of this for yourself.

ChiliV
Here is a little convo to have with your DH.

DH, I think we should hire a caregiver for MIL.

Instead of having to pay the caregiver, we could let her live here in exchange for her services, of course, she would need to keep the place clean.

We could throw in three meals a day and let her buy the groceries and do the cooking. We will have to pay for the groceries. MIL could go with her, she will enjoy the outing. We will let her use our second car if she is a licensed driver, strong enough to get MIL in and out of the car and can get back here before the ice cream melts or MIL has an accident.

She will need to be a good planner, make sure MIL doesn’t get too tired, has her meds on time, gets her potty breaks, is especially observant during the sundowners.

She will need to keep a tight calendar to work the doctor appointments in around her other chores.

We will have to make sure this caregiver doesn’t want to have friends over or celebrate holidays here or visit any extended family as that would be too disruptive. After all, she could plan all that and then MIL have a bad day and the caregiver probably wouldn’t have time to visit anyway.

She needs to be a light sleeper so she will hear MIL when she needs a potty break during the night.

She won’t be able to take any time off as MIL needs daily care, no sir, this is not a 9-5 job. it will take a special person to do this job.

This caregiver is going to be so happy on the job because MIL is nice and quiet once all her needs are met and the tv is on her station, etc. etc.

Thats when the caregiver can rush to get some of the household chores done in order to earn her room and board.

I sure hope she’s not one of those planners or gets overwhelmed. we need to make sure she will realize that “things will figure themselves out the way they are supposed to.” Or we will just have to replace her with another caregiver who isn’t so mean. 🤨

What’s that DH?? The job is already taken!! I guess I missed when that happened.

Welcome, Chiliv!

How does MIL's SS money get spent?

Can it be used to hire sitters to give you some time to get out?

Your spouse is probably “more patient than me” because he is doing less and the MIL arrangement has less impact on him. A man with a shed can ignore the house.

Find a way to get out more yourself, and increase what he is responsible for. With a bit of luck it will increase his sympathy for you and decrease his patience for sitting this out indefinitely. That’s more productive than arguing, and better for the marriage. A part time job for you, so that you can afford more in-home care?

My Mom was in her last stages when I placed her in LTC. She could brush her teeth if toothbrush was handed to her and feed herself. What she could not do was dress herself, bathe herself, groom herself and she was incontinent. Before LTC she was able to walk with a walker but LTC chose to have her use a wheelchair because she was a fall risk. The also needed 24/7 care. These are the six ADLs...
The ability to bathe, dressing, toileting, transferring (getting in and out of bed or chair), eating, and continence.

Your MIL does not have to fit all of the ADLs. Dementia alone and needing 24/7 care is a priority. If you have not gotten a formal diagnosis, get one with a Neurologist. Get to Medicaid and get that application started.

<<My spouse seems more patient than me that “things will figure themselves out the way they are supposed to”.>>

So how much actual hands-on caregiving work is HE doing for HIS mother?

Give the "things" a jumpstart in "figuring themselves out" by taking a trip somewhere by yourself. The "things" will quickly be kicked into gear to start making changes once they realize you are NOT part of the solution!

What state do you live in? Most states' Medicaid only covers LTC, which is assessed as medically needed by a doctor. Doesn't sound like your Mom would need this, yet. Please find out what your state's Medicaid actually covers.

I agree with BarbBrookly to use her SS funds to pay for extra help, if this is at all possible. If your Mom has a medical issue that requires a trip to the ER, you can discuss the option of transitioning her into a facility directly from discharge. This may or may not be an option.

Of course he is more patient since you are doing everything, not him, he should be the one doing for her not you.

Where are your husband's siblings, might be time for them to step up.

Ohhhhh, dear. Yet another in the endless parade of (almost 100% female!) woe-is-me-ers who have FOOLISHLY painted themselves into the miserable corner of dealing with SOMEONE ELSE’S MOTHER.

1) Why in the name of Heaven did you ever allow her to move into your house? Major mistake # 1, as most everyone here will tell you.

2) Having made the first, and biggest, mistake, WHY did you not have a big sit-down discussion with your husband, clarifying that it would be HIM, not you, doing the nannying of Old Mom? (Actually, it should not have been a discussion, but a firm declaration: “She is yours to deal with. Period.”

3) Having failed to do the first two things, why are you still dithering? Ultimatum time. SHE goes (into some Medicaid place; others here are right that it is an income thing, not a can-she-brush-her-teeth thing), or YOU go.

Grow a spine!

Medicaid is an income based program. The fact that she can still do some activities of daily life shouldn’t make her ineligible for Medicaid. They will do a 5 year look back to see if she qualifies. Call an elder care attorney as they can do the paperwork to get her Medicaid approved.