Home care no longer working, what comes next?

As I’m sure you realize already, caring for someone with dementia is inherently addressing questions that have no answers.

Although FIL’s thinking about his spouse becoming “even more confused”, whether that happens at home or in a care setting, or it really doesn’t make much difference. You as family know it’s happening, and progressing.

My LO, experiencing similar symptoms, interned a memory care unit on a locked floor in a very pleasant assisted living residence, last spring.

For the the first three months, she was agitated, uncomfortable, and a flight risk. At that point we arranged for a diagnostic evaluation performed by a geriatric psychiatric specialist who prescribed a very mild dose of a tranquilizing antidepressant, and it slowly but definitely helped her to relax and engage positively with her surroundings.

When she asked to “call home” she was allowed to call her home number and leave a message. This now occurs rarely, and the call is always to me, or a very close friend, and both of us can and do assure her that everything’s OK and she can stay where she is for the night.

Making “....life better...”? For my LO, that would be safety and kind caregivers and seeing us more often than she did in her old quarters.

The food at LO’s residence is very good and after a brief period of resistance she has resumed eating well. There is a small fridge in her room, and she snacks as she chooses, with supplements her caloric intake.

She goes to Mass on Sundays and one day during the week, and has her hair done, both on site, and enjoys doing so.

Some days she dresses and some days she sleeps most of the day.

You and the others who love her may not have yet come to full acceptance that her moods, reactions, and perceptions are most likely the product of dementia. While this realization is painful, it can help you make practical decisions about creating a safe and respectful future for her.

I live within a 7 minute drive to my LO’s facility, and my husband or I visit most days. The proximity is very comforting to me.

Visit several local memory care units, ask the questions you’ve asked here, and see what you feel about each. My LO’s facility does accept spousal arrangements whether both parties are impaired cognitively/physically or not.

As you decide how to move forward know that there are really no “good” decisions when confronted by dementia, so as caregivers, our job becomes choosing the best of the less than good ones.

Try to be as objective as you can in considering your options. Even as confused as you feel right now, you’re off to a good start with your questions and concerns!
Best of luck with your search!

Think MIL is passed an AL. ALs are limited to what they can do. Less aides because residents are suppose to do some things for themselves.
My Mom was in an AL for 8 months, transferred to LTC when money ran out and I applied for Medicaid. As soon as I walked into the LTC facility I knew that this was the place Mom would go. Large Common area. Large activity and dining area. Cleaner than she had been in the AL. The AL would not allow her to wear bibs, a dignity thing, so Mom always had food on her clothes. Also, there was many a time I had to bring to the aide's attention that Mom needed a change. (one thing I hated when Mom lived with me, toileting. So I was not doing it at the AL when she was paying 5k a month) At the LTC facility they used Bibs so Mom was always clean and odor free. Never had to ask an aid to change her. Seemed to be doing their jobs.

Now for Dad. Mom maybe eventually able to receive Medicaid. Your Dad becomes a Community Spouse. Their finances will be split. I gave this example on another post. These are real people.

Mr. R needed LTC. Mrs R was staying in the home. Their finances were looked at and besides SS and pension they had 60k in the bank. The 60k was split between them. So, his 30k was used to pay for his care and then Medicaid took over. Mom had the house, car, 30K and enough income to pay her bills. (actually, she never went into the 30k) Not sure how they split the SS and pension but she lived in the house until her passing at which time it was sold and proceeds went against Mr. Rs care.

You may want to check this out with Medicaid. Or find a lawyer versed in the Medicaid laws.

The next step is to get an assessment done to know what level of care she needs.

There are multi care facilities, independent living, assisted living, memory care, skilled nursing or nursing home all within the same building or compound. This way you don't have to move your loved one to a different location, they would be moved to the wing or floor that meets their needs.

You would have to do a little research to see what is available in their area. I have heard of spouses with different levels of need being able to share a room in the higher level of care area.

Depending on your FILs willingness to let others help her this may be great and maybe not, he could still love her and assist but the caregivers would be there to really provide her care.

He may find that having activities and peers will improve the quality of both their lives, but probably more his. Dementia is a brutal disease that spares nothing of the person. She will never get better and she will most likely get worse.

There are no easy answers for these situations, added aids at home may work for a while, but the longer you wait for placement the harder it is.

You should find a certified elder law attorney and have a family meeting to get POAs, living wills, wills, financial planning for Medicaid for both of them, if that is not already in place. A good attorney will walk you through the entire process and even fill out the Medicaid application. I recommend going to www.nelf.org and finding an attorney in your area.

Best of luck! Hugs, such a difficult time for a family.

Who is their medical and durable POA? Are their own children involved in this to any degree? If not, why?

I think each of them need to be evaluated by their doctor to arrive at an understand of what level of care they need. I would make my plans from there. Concerning money, they will likely need to be personal pay first and then apply for medicaid if that will be needed. Thus, they will need a play that will take medicaid at some point.

You've had the major breakthrough: your FIL has accepted that your MIL's care needs are beyond him.

Memory care, dementia care, whatever it's called: the kind of facility you are looking for will have staff who are trained to reassure and engage with people whose dementia has disoriented them in time and place. When your MIL becomes angry and frustrated because she "knows" that she needs to get home and she can't make sense of her environment, it is frightening and heartbreaking for your FIL and with his mobility problems it is practically difficult for him to manage her as well. I won't forget trailing after my mother as she roamed the house we'd lived in for four years, unable to find her bedroom, adamant that she didn't live there, and telling me I was "maddening." If I'd known then what I understand now, sigh... But at least I was physically able to prevent her from going out of the front door in her nightclothes at one in the morning.

Your FIL was correct to be concerned about a change in environment earlier on; but developments have overtaken them. Your MIL is *already* "lost." A change in environment now won't make her any more so. Will a memory care unit make her life better? It won't restore her comprehension, no; but when you say "only" make her safer, safer is not nothing. It will make her feel more secure, and she actually will be safer, and there will be less strain on FIL and therefore less risk of his leaving her by dying before she does. I wouldn't knock it.

Nobody will force MIL to participate in activities if she doesn't want to. Encourage, assist, motivate, yes; but force, never. I can't know what's available in your area; but just as an example, in the facility where my mother stayed for respite breaks the dementia care unit was on the ground floor, built around an open air atrium with a walkway around a garden. Residents could walk freely around the common rooms inside, and out into the fresh air; but they could not exit the building: doors leading out of the unit had keycodes which residents couldn't operate. Quite a lot of research has gone into the design of dementia care facilities and you can expect it to be pretty good. This particular facility was exceptionally so: if a resident was trying to exit and becoming agitated, the support worker was trained not to prevent them but to accompany them and then calmly redirect them back inside. I would've loved to move my mother there permanently! - but that's another story. Leadership is everything because attitude is everything. I think and hope you will be impressed by how skilled and knowledgeable dementia care teams can be.

The next step is to go and visit some facilities that offer dementia care; ideally ones that can also accommodate FIL so that he has a choice of moving with his wife. In your place I think I'd research online, shortlist three to five, visit them, then visit them with FIL.

a lot will depend on where in laws live and where family lives

is it possible in laws need to be moved closer than a plane ride away ?

do folks have paperwork set up naming one or all children as power of attorney both financial and medical?

as for actual placement, does FIL want to stay with wife as she slips further into dementia? There are couples at mom's private pay memory care where only one spouse has dementia

you may want to contact your county agency on aging for a needs assessment for MIL - in addition to larger facilities there are residential homes housing 6 people that oftentimes work well for dementia and are less costly than AL

you are not in a crisis yet but that could change in a moment, so gather as much info as possible and get a plan in place

no move is easy but you'll want it as least hectic as possible

as for actual memory care, mom's facility lets the residents roam as they want - it's their home - there's good and bad in this - I don't like other residents coming into her room - men have fallen asleep in her bed and they can be aggressive so staff doesn't do enough to redirect them - I once watched one man for upwards of 40 minutes go into every room in mom's hallway, strip and come out in clothes from every room he entered - he particularly likes the women's underwear

they prefer to keep the residents in the common area during the day except for those that are later stage and require more nap time
no one is forced to join an activity and some can't sit still or participate anyway
there are too few caregivers and many residents including mom have private caregivers during the day

Lastly, no one gets better - dementia progresses and with it, falls occur, UTIs occur, pneumonia occurs
I've lost track of the number of passings in the past three years but mom has had 5 or 6 roommates in that time

I am so sorry you are going through this. So many are and have gone through this unfair thing called dementia. The stages my Mom went through sound so much like what yours is going through. I learned how to join her world when I was with her. Something her 2nd husband of 15 years couldn't do. He had zero patience with her confusion...she wanted to go " home", she wondered where her brother was, that had passed 10 years earlier, one night she called me to ask who was in her bed because she "was not married". Obviously, this situation with mom and her husband was not healthy for either.
After I moved my mom to 3 different memory care (smaller residential) homes...I finally found a near perfect one. Moving her caused more confusion each time. I thought each one was near perfect...I didn't really pay close attention to the other residents, before the last home. Please save yourself time and energy by watching other residents during lunch, etc. when you go check out a new home for your LO. Some don't talk at all, some think they're the keeper of the other residents, etc..
If your parents own their home, check with a trust attorney about putting it in a trust to pay for one or both parents care. If either one was in the military during time of war, they can get approx $2,000 a month for their care through the VA Aid and Attendance. But their is a 3 to 6 month wait on this, retroactive. Unfortunately, I didn't have this site to look at and get info from. My Mom passed away in January. Her husband passed away last Sept.. She lived in a wonderful memory care and he lived 5 miles away in Assisted Living. We got them together for holidays and some weekend days for drives, dinners, etc.
I took moms favorite movies on DVD and favorite music on CD, her favorite photos and pictures for the walls, smaller pieces of furniture, so she felt at home. Everytime I moved her, she could take less and less...but always trinkets, photos on wall and photo album I made with one photo per page with explanation of each family member and their family (grandchildren). As caregivers go through the album they learn about the residents family/ names and that's a great thing! And you can go through it with her during visits. When my mom wants to talk to her brother, I simply tell her that we will call after dinner, or he is at work and we'll call later....in 2 minutes the subject us forgotten, but mom feels at ease. He passed away 10 yrs earlier and not a wise thing to tell her over and over.
Good luck on your search. Find someone like through "A Place For Mom" or individuals that do this for a living, to help with your search, financial guidance, etc..
You and yours are in my thoughts. I wish you the best.

I believe a memory care facility would suit your mom well. My dad is at a facility that has Assisted Living on one side and Memory Care on the other. My dad is in memory care. He’s able to join in with most Assisted Living activities. They are trained to recognize and meet his needs. He is thriving now. I’m able to visit as often as I’d like. Be sure to do your homework though (do a tour, meet the staff and aids that would be working with your mom, read online reviews, talk to families of residents, ask for activity calendar, ask for weekly menu, ask to see kitchen, check state reports, etc.)
No regrets here. My entire family now agrees that this is the absolute best solution for not only my dad, but for all of us.
I wish you and your family a peaceful solution and all the best.

Okay. This all depends on the facility you place her in. An AL facility may or may not accept Medicaid. A NH would. An AL can be covered via private pay. So can a NH. An AL would have activities to choose from. A NH would too. Neither location would direct residents/patients to do anything. Patient would have to decide. Your father can share quarters with your Mom at an AL. He may or may not be able to in a NH. It'll all depend on what you do.

My friends, Jim and Beth, needed to go together to a memory care apartment. Beth had frontal temporal dementia, was incontinent and starting to wander at night, needing 24 hour care. Jim had short term memory problems and could not process that his wife was changing. I had found a facility with a choice of a one bedroom, two bedroom or efficiency unit on their memory care floor. The one bedroom size would work perfectly for them. They needed to be together because as soon as Beth wasn't with Jim, she was looking for him.
We tried in-home care first, but it was over $13,000 a month. Their memory care apartment would be around $10,000 for the two of them.
Fortunately, I found a place that gives good care and the head nurse gave me valuable advice on what was happening with Beth and what I should do--when she needed a wheel chair, when to start hospice. After 18 months of regular pay, they would accept whatever public financing was available. Beth only lived another 5 1/2 months before she could no longer swallow and passed peacefully in her sleep in October of 2015. Jim is still there and I can continue payments for another 18 months or so. All the money from the sale of their condo went to his care. Liquidating his investments was next. He will be eligible for Veteran's benefits when he becomes poor enough. This place is giving good care for him, too. He is physically healthy and happy. He chooses not to participate in the activities they have for the residents, preferring to sit in his recliner and watch tv--the old Gunsmoke and Mash episodes being re-shown. A medical person checks him once a month, I see him once a week. Staff bring him his meds on time and remind him of meal times. So, it is possible to have both go together if you can find a place with enough space for a couple to be together. I had to check 8 or 9 places before I found this one. What luck that they not only had apartment size I needed, but provided excellent care as well. In the 2 1/2 years it took to get Jim and Beth to go to this place, the man in charge of leasing--JJ--and I became friends. He left shorty after Jim and Beth got there so he could help care for his own father. JJ's wife told him he should get his real estate license. So he did and works for one of the top real estate firms in the area. When I finally got Jim and Beth's condo empty, fixed up and ready to sell, JJ became my realtor. So before I ever needed someone like this, he and I become friends and then he can play this role in my life. He gave me advice on what I might want to do--room by room--how much it would cost, who could do the work and how much value it would add--then an "as is" price. I went with the "as is" approach so the new owners could decide for themselves how they wanted it to be and purchase it for a cheaper price, too. The guidance I have received in taking on this care for my two friends is almost magical and I am very grateful. Good luck with your decision and search. It can work out!