Memory care/Assisted Living and private pay/Medicaid

Daughter80

Hi,

I will be touring about ten places that have both AL and MC in the next few days and I’ve already seen another half dozen. 

I found one nice place that had both AL and MC but was only for residents with dementia. They accept Medicaid long term care so my mom could move in and stay until the very end.  This was a nice place but mom is much higher functioning than anyone I saw there. I would guess she would decline rapidly in this place even though she would be cared for well.   

The hard thing is my mom is young. 67. And still pretty lucid, social and verbal.  

I have found other places with AL and MC that are amazing but they are private pay only. I have yet to find a really nice place that would eventually take Medicaid. Mom is blessed and could afford private pay for anywhere from 4-8 years depending on price. I want her to be in a nice place that she might be able to enjoy if at all possible and I am thinking to just have her in a private pay place until money begins to run low then move her. Is this a bad idea since it would likely involve moving her later?  She almost could do AL at this point but I can see how she might need MC. I feel like she is borderline for both. 

harshedbuzz

Daughter80 wrote:

Hi,

I will be touring about ten places that have both AL and MC in the next few days and I’ve already seen another half dozen. 

It sounds like you have a wealth of facilities in your community. It's great to have choices. 

I found one nice place that had both AL and MC but was only for residents with dementia. They accept Medicaid long term care so my mom could move in and stay until the very end.  This was a nice place but mom is much higher functioning than anyone I saw there. I would guess she would decline rapidly in this place even though she would be cared for well.   

This is the nature of any MCF that allows residents to "age in place"-- there will be a range of ages and abilities that skew female, older and further in the journey as many families opt to keep their LOs at home until that is no longer the best available option. The other piece is that in many places there is considerable turnover in MCFs; when we placed dad in my 2nd choice (the first, a veterans home, had a 6 month wait-list) there were 4 men in his "neighborhood" but by the time he passed 7 weeks later 2 of them were gone. One had a stroke and was moved to a SNF and the other was moved to a MCF nearer to where his daughter lived. 

The hard thing is my mom is young. 67. And still pretty lucid, social and verbal.  

It's hard to imagine your LO in such a place. Doubly hard when it's a LO who has EO dementia and looks so much younger than others in a prospective community. We families tend to have rose-tinted lenses about our LOs and focus on their relative strengths when the reality is that we need to make care choices based on our LOs at their worst-- the sundowning, confusion, suspicions or what have you. 

Sometimes a person like your mom will adapt and over time think of themselves as staff. One of the ladies on dad's wing was always beautifully coiffed and dressed. I often saw her calming down another resident who was often fretful. Imagine my surprise when I was told she was a resident. The gentleman whose family moved him used to oversee the dining room. He'd owned a restaurant previously and used to seat residents, bus tables and "supervise" the servers.

Another thought is that sometimes a facility that does MC and either Personal Care or AL can be flexible about moving between the two groups. My aunt was in a CCRC for years. She had vascular dementia and remained her delightful self- warm, kind, gently funny and very social. When she first arrived she had a suite in MC with a better staff ratio for her needs but spent most of the day in the AL area doing crafts, activities, lunch and outings. Maybe an arrangement like this would suit your mom. 

I have found other places with AL and MC that are amazing but they are private pay only.

I toured some places that were amazing, too. Be aware that sometimes corporate facilities put their efforts into sales- lovely decor rather than the staff training and retention that would make for better care for your mom. The other piece to these sorts of places is that often they house both AL and MC and always tour you through AL and may even promise a place there knowing they'll move your mom to the MC side as soon as she shows signs of "not fitting in". It's a kind of bait'n'switch. The other piece to these kinds of places is that they do tend to cherry-pick their residents for MC accepting only those who are well-dressed, docile and cooperative. That was not my dad; in fact he wasn't accepted at a CCRC MCF that would have been my 3rd choice. It appealed to mom-- they had a lovely grandfather clock and sweeping staircase in the foyer but the SNF associated (should he run out of money or need rehab after a hospitalization) was grim.

 I have yet to find a really nice place that would eventually take Medicaid.

I focused on quality of care and landed in a place that was a little "lived in" looking but that had great staff.

Mom is blessed and could afford private pay for anywhere from 4-8 years depending on price. I want her to be in a nice place that she might be able to enjoy if at all possible and I am thinking to just have her in a private pay place until money begins to run low then move her.

This is a strategy. It was one suggested to me by one of the fancier places I toured. I would shop MCFs that accept Medicaid and find out what their actual, often unspoken, policy is. Near me it's 2-3 years of self-pay required by their business model. 

Is this a bad idea since it would likely involve moving her later?  She almost could do AL at this point but I can see how she might need MC. I feel like she is borderline for both. 

A lot of PWD seem to have one foot in each side for a time. But care needs to appropriate to your mom at her worst. Have you spent any time living or staying with her to see how her dementia impacts her at different times of the day?

My aunt was like that by virtue of her pleasant personality. Her evil sister was thought to be "AL material" but crashed and burned. In AL the assumption was that residents were able to do their ADLs and show up for meals without prompting. She sometimes showed up to early or late. When she was on time for meals or activities she couldn't keep up with the residents who hadn't had a cognitive shift and was shunned and even bullied by them. It wasn't pretty. 

Daughter80

Harshedbuzz,

It definitely sounds like you have a lot of experience. Thank you for all of the insight.  I really think my mom would need tons of support if in AL as she really can’t find her way anywhere even inside her two bedroom apartment. She lives with her sister currently. She really would be a high level person in MC. She would be early stage 6 from what I have read. The most difficult thing is that I have toured and will tour so many places and only two took medicaid. One was awful. The other place that was nice only had 15 residents total. And of those only 2 would be in the “level 1 of 4” care. They called it AL for level 1 but really it was all in a secured facility and only for patients with a form of dementia so it really was MC. I guess I was a bit hopeful that she could at the very least, be social since that is something she loves and I’m afraid this place wouldn’t be good for that. 

MN Chickadee

My mother with Alz was about 70 years old, physically healthy, and the highest functioning resident of MC when she moved in. She also looked much younger than she was so she stuck out. But it worked fine. The residents of MC will ebb and flow. They come and go, so she may not always be the only one like that forever. Eventually another lady moved into my mother's place that was at a similar level and they were two peas in a pod. And it was ok mom was higher functioning. She would help the staff and seemed to enjoy being useful. She set the tables for meals, folded laundry, helped others with their crafts. And before too long she declined and was not higher functioning. It can happen rather quickly, so I was really glad we had her in a place she could decline in place. Things can happen suddenly with dementia. In my mom's case the Alz started causing seizures. She also started having falls in stage 6 which is common, basically inevitable.  She never broke a bone but many do and that can set off a chain of events.  Strokes, falls, UTIs, all kinds of things can cause unexpected declines so it's good to be prepared. 

If your LO is truly stage 6 the odds of her living 8 years are pretty low though not impossible. You may have the option of choosing a non-medicaid facility for the next couple years, and if her health has declined it may be clear she won't live long, or you move her to a medicaid eligible facility then. Many places have unwritten policies on this and you have to ask. It's often at least one year of private pay, sometimes two years and then they will let you stay and accept Medicaid even if it's not advertised.  We moved my mother to a second facility in late stage 6. I was bracing for the worst, because the initial move in mid stages to the first facility was very difficult and took a long time for her to adjust and settle in. The second move in late stage 6 was a breeze, she hardly noticed she was in a new place. Now in your mother's current stage I would prioritize a place that has well trained staff, a good staff to resident ratio, and dementia specific activities. Our place had a wonderful activity schedule with many outings, exercises, music and lots to keep people active. A good staff will make it work no matter how with-it she is and get her engaged. A not-so-good staff will make it hard no matter how many peers are on her cognitive level. 

Daughter80

Thank you so much MN Chickadee for sharing and the information.  I visited a few places that were private pay and some that took Medicaid. The ones that took private pay were recommended by a friend of a friend that actually works in MC across the entire city where we live. She gave me her top three and they were amazing. The staff just loved on the residents unapologetically. It makes me cry to see the love and care they had for these people. I so appreciate you sharing that if we had to move my mom we could and it likely wouldn’t matter. Honestly your words saying mom likely wouldn’t make it 8 years is comforting.  I would prefer that for her. I know that sounds awful, but I pray she can go quickly because I just don’t want to see her suffer. 

Thanks so much  

May flowers

Our situation was just like MN Chickadee - my FIL was the highest functioning - he could do all his ADLs, was mobile without a walker. He did find others similar to him and it worked out just fine. He actually seemed to enjoy it quite a bit, more than here where he was bored to death. Even though he didn’t always participate in activities, he enjoyed just being around others near his age and chatting some. It was interesting to visit them - they always were out in the commons area and most would be dozing, then one would pipe up with a story or something and several more until it got quite lively for a bit, then they would doze again. My FIL found a lady friend/walking partner and they did laps inside and outside the facility (with a caregiver).

Harshedbuzz makes a very good point about caregiver training. A facility is only as good as the caregivers and if there is high turnover that is a red flag IMO.  We experienced that and the MC went from great to pretty bad very quickly. 

Daughter80

Thanks May Flowers. Hearing others stories really does help so much. My mom can still converse like an almost normal person. She can dress, bathe, toilet, eat all on her own but needs reminders for everything. I think after today’s visits I have found a place. It is either AL or MC. They will do an assessment next and we will go from there. The hardest part is imagining leaving her in one of these places. No matter how good they are she seems to be so lucid when she is with me and that freaks me out. Was your FIL lucid when you loved him?

May flowers

Yes, he did everything - dress, bathe, toilet, shave, brush his teeth, button his shirts, tie his shoes  - all with reminders. He could carry on a conversation once prompted and talked to the activities director a lot about his past (mostly his childhood and work).  He was still able to use his phone to call us. He was just on the verge of not being able to use the remote. 

He was off an on lucid.

When we moved him our thinking was it was better for him to go before he had a major crisis and that he would adapt better. We were fortunate that he adapted quickly and never complained about leaving or coming home. The only phone calls we got were him not figuring out how to turn down his radio volume. He never did find his room, he always had to be escorted.

Daughter80

Wow. That sounds a lot like my mom. I pray we have an easy transition. It was kind of easy finding a nice place and that made me feel good. Just knowing she would be well cared for. But I can’t imagine leaving her any of the places no matter what. It just breaks my heart honestly.

May flowers

It is very heartbreaking. Praying you will have a smooth transition and she adapts quickly. Some adapt better than others, I don’t know that there’s any way to predict. We told my FIL the night before the move, and we told him a fiblet which was the doctor wanted him to go to the place so he could get some medical care. He was nervous but not too upset. After we showed him around, a caregiver whisked him away to meet the other residents so we could leave without a scene.

dayn2nite2

Personally, I would go for the facility that will keep her into Medicaid and to the end of her life.  One move, she doesn't get uprooted later in her disease where it may cause agitation.

My mom was 67 when she went in the NH, was by far the youngest and she was ambulatory and pretty functional (basically just needing supervision to make sure she didn't get into anything unsafe and needing help in the bathroom sometimes) when she went in.  The activities staff would have her help them set up for bingo, decorate for events/holidays.  She thought she worked there for a time.  The other residents accepted her like they did their similar-aged peers and she regarded the NH as "home."  I felt like it was home, too.  I was there about 3-4 times a week and knew all the staff, the other residents and even some of the other families.