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

You need more people to help in caring for her. If you or your spouse were sick, injured or hospitalized... who would care for her? It would be better to enlist help from other family members, friends, members of faith group, and even paid sitters to help with her care on a regular basis. Then, you and your spouse could reclaim some of your time for "couple time" instead of it all being "caregiving time."

Most people with dementia tend to do better with a consistent routine in a consistent environment. Change is difficult for them. Try to set up a consistent routine for your loved one and keep the areas she uses as consistent as possible. Routines also help others who care for her to know "what to do and when to do it."

Check Social Security Administration online for qualifications for Medicaid. If your loved one qualifies, set up an appointment to get her signed up. Make sure to have all supporting documents at the appointment.

Is or was she married to a Veteran? If so she may qualify for Aid and Attendance.
Check with your local Veterans Assistance Commission.
Or you can contact the VA in your area.
I hate to disagree with the assessment that she can carry on ADL's
She may be able to get dressed, feed herself and brush her teeth but those are not the only ADL's that they should consider.
Can she shop, prep a meal, cook a meal, clean up?
Can she carry on housekeeping, laundry, cleaning?
If you or your husband are helping her what would happen if you were not there to do what you do for her?

Use her funds for sitters.

I heard that it is better to file for Medicaid and let them reject you, rather than assume that you don't meet the qualifications.

The problem with this attitude is that you are just adding to the already overwhelming backlog.

However, until you file and get rejected, you won't really know what is preventing her from being accepted into Medicaid.

Also, you need to be careful with what you consider successful ADL.

My mother could wash herself, however she needed help with turning the water on and off, and had to be watched getting in and out of the bath area. She did not wash herself completely (partially because she could not reach all the areas). In addition, because we live in a warm climate, she could just put on her Depends (she couldn't bend down and put them on herself) and work on the other parts of her routine. By the time that was done, she was "air-dried". Yes, she bathed by herself. However, she could not complete the task without someone being there. Depending upon who it was, some people considered her able to bathe herself and others said not able to bathe herself.

Yes, she can feed herself, however does all her food have to be in bite size pieces because she doesn't have the strength to cut her food or cuts her pieces so large so that she tears at the food once she takes it to her mouth? Does she prefer to use her hands instead of a fork, knife or spoon? Are you unable to take her to a restaurant because she would make a mess like a toddler around her?

My opinion is to consult with an elderly attorney or with any of the people who help fill out forms for elderly Medicare and turn the form in. If you get rejected, at least you will know why.

P.S. Medicare does have a home health care benefit. It isn't much, however, it might provide you relief for some part of the week. Her doctor would have to authorize it.

You are pretty much doing full time care for her just as you would a child, but unlike a toddler, you can't pick her up and pack her up and take her with you.

There might be an adult day care where she can spend some time during the day. I don't know what the pricing might be. Some do drop ins too.

You could have a senior companion (often the word angel is in the name: visiting angels...) give you a day or night or whatever off when you need it.

Are there other family members who can help out? My husband is my MIL's only relative, but is that your situation too?

Unless something else takes her first, she will probably have to go to some type of care. She could get delusional, paranoid, combative, and completely uncooperative.

Chiliv: File the Medicaid application now as nothing "will figure themselves out the way they are supposed to."

Having 3 people in a marriage is difficult. That's all I have, prayers to you and yours.

Elder Law Attorney can help her with Medicaid.

Take her to PCP, ask for a " level of care needs assessment", tell PCP that you need referral to a geriatric case manager, usually a licensed social worker to further help you and your husband with options both for now and later and, to help you start the Medicaid application process now. You may benefit greatly from conferring with an Elder Law Attorney who, will charge a fee, but who knows the INS and outs of coping and caring for elderly relatives. Also be sure of who is the designated POA for decision making for her. If she falls or you observe any other changes in her behaviors, mental status or physical status, call 911 and have her transported to ER , then work with social services there to have her admitted somewhere for rehab or some other purpose and basically refuse to allow them to send her back home , tell them you cannot care for her 24/7 and cannot provide the safety care she needs. This is IF your husband, her son, will concur . Get counseling for yourself and the two of you if he will go to try and address the marry issues you already are experiencing.

I would continue to try to get her medicaid. That is usually based on income, not on your disability.

There are programs that can help with in home care. We have one here called IRIS, but I believe there is something similar in every state. She can choose whoever she wants for caregivers (including family). They will provide the funding for not only her care, but things she might need in the home and outside therapy or activities.

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.

<<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!

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!

Your husband is probably fine with the arrangement because his mom is being taken care of ....by you. You need to go somewhere for a couple of weeks. Visit a friend or family out of state and let your husband take care of himself and his mom for a while. He might have a change of heart when he realizes that he can't do what he wants to do.

Has your MIL been formally diagnosed with dementia by her physician? If she has that, I don't think you will have a problem getting her eligible for Medicaid and placed.

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.

No one on this forum will view you as “mean.” You’re struggling to cope with a difficult situation. Everyone understands this.

Speak with a Medicaid specialist and see what they think will push the process forward. Once your MIL is approved you will be able to breathe a sigh of relief.

I would even start researching facilities in your area. Your MIL isn’t a fully independent woman. Her situation will become worse, creating more stress for your family.

What resources have you looked into other than Council on Aging? How about seeing if there are adult daycare programs that she may be able to attend for a few hours during the day?

Perhaps you could hire someone from an agency or seek out a private caregiver to stay with mom on a regular basis.

Best wishes to you and your family.

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.

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.

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.

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?

Have you contacted your local Council on Aging or Senior Center to see what Assistance they can provide? Or what referrals they can offer for support? I would start there.

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.

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?