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Wubba1108 Asked October 2019

When is memory care appropriate?

My 91 yr old mother has FTD (fronto-temporal dementia) and is mid-stage. She currently lives with us & has a home health aide 2x/week. Mom's executive functioning is gone, as is her short term memory. She has trouble with words and understanding conversations and tends to misinterpret 90% of what you tell her. She has a very inaccurate concept of time - doesn't generally know what time of day it is, or what day. If I leave the house for 15 minutes to go get my daughter off the school bus, mom thinks we've be gone for hours. She also doesn't understand how to operate kitchen appliances (including the fridge) and is rapidly losing the ability to operate the tv (despite having a simplified remote with only 5 buttons). She doesn't understand the concept of an answering machine, so we've taken it out of her room - and I don't think she can make phone calls anymore (though she will talk on the phone if a relative calls her). Mom can dress herself and can eat. But she can't find clothes easily in her drawers (the closet is easier for her to understand). She can walk (though very poorly and only for short distances). She still talks, but it can be difficult to understand what she's actually talking about. Her comments don't make sense a lot of the time. Mom refuses to go into an eldercare community. That's one topic she still understands and is very hostile about. Her doctor feels we need additional help with care planning so we hired a geriatric care manager and asked for help getting mom admitted to a facility. We've been told the problem is Assisted Living would require more independence than mom can muster. But the geriatric care manager has concerns that mom is "too well" for a memory care unit, as she's still mobile, able to dress herself, etc. The case manager worries that we'd be putting mom into an upsetting position of being surrounded by bedridden seniors who can't speak, talk, or perform any ADL's. She thinks it would be highly upsetting for my mom and just cause more hostility. This leads to my question - is this good advice in your personal experiences with dementia? I'm surprised that professionals (including her physician) aren't insisting on facility care. Lat week, mom thought a guy on the television was someone outside the house looking at her through "the window" (aka, the television). The week before she had a nightmare about a man with a gun and couldn't distinguish the difference between the conscious state and the dream state. She woke up insisting the dream was real and there was a man in the house with a gun. I can't believe the medical community isn't insisting we admit her to a memory care unit. But what I hear is that she's still physically too well and we need a medical event to occur. Then it'll be a cut and dry decision. Is this really how this plays out? We just let medically incompetent, paranoid, delusional seniors stumble around in the world until they break a hip or have a heart attack and that's when we finally do something? Or are we getting bad advice from a case manager that doesn't want to be the bad guy with my mom? Oh - and before it's suggested - NO, she doesn't have a UTI. We've been down that road at the doctor's office multiple times. She brain is literally falling apart. That's the problem.

robin4gsltw Oct 2019
Its up to you. Your decision. I am moving my mom this week to a beginning memory care. Because I want peri care. Most memory cares only habe 1 unit which means the higher functioning are in eith the ones who are aggressive or reach over and take food off their plate,etc. I am lucky to have this in my area. Most assisted living will take those with dementia if they aren't exit seeking. They would go out of business if not. Visit a few places and make your decision. You know your mom the most and are most qualified for the decision but both types of facilities will probably offer to take her.

lealonnie1 Oct 2019
I think you're getting bad advice, personally. I work in a Memory Care community as a receptionist, and my 92 y/o mother currently resides in a different MC community, so I can tell you this: very few of the residents are 'bedridden' and unable to move a muscle! They're all, for the most part, ambulatory and able to dress themselves. They are suffering from dementia and Alzheimers, some less severe than your mother, some more severe. My mother is doing fine there, and gets help with every single ADL that she needs help with, and socializes with others in the same boat she's in every day. Is she happy? My mother has never been happy a day in her life, so no, she's not happy. But she's no more miserable in MC than she was in Assisted Living, Independent Living, owning her own home, or when my father was alive.

You do the math. Do what's right for YOU and your family. Your mother needs a lot more help than you alone can give her, obviously. A MC facility CAN give her what she needs and keep her safe in the meantime. You can become the daughter again instead of the caregiver, and visit as often as you like. I suggest you personally visit a few places in your area to find one that meets with your approval.

Best of luck

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Isthisrealyreal Oct 2019
I am sorry that you have a care manager that thinks she/he can find a place where your mom will be happy. Not gonna happen, so forget about that goal. She needs to be safe, fed, warmed/cooled and have the environment to find some contentment, that is the best you can hope for in this crummy situation. She isn't happy now and she is in the best possible place to be happy if she was ever going to be.

My dad fell in the between facility category as well and he didn't have a truck load of money to go to the resort facilities that a place for mom tried to guilt me into paying for.

I found a board and care facility that he could afford. He wasn't happy, but his needs were met and I was close enough to help him and do enrichment activities. I learned that no matter what, he was going to complain about everything. I had him in a rehab that costs a fortune and he griped, he didn't want me to be happy if he couldn't be. So prepare yourself for the guilt trips and gripe trips.

You are obviously a well balanced person to see that your children come 1st. Stick to what you know with your mom and steel your heart against the bomb that will go off when she is moved. Because it will blow no matter where she is placed.

I would look into continuing care facilities and find out how they determine when to increase care. Then you can start with the lowest level required by her needs assessment and it can increase as they deem necessary. This will happen in one facility and save you loads of headaches.

I don't know where you read the reviews, but my experience is that the reviews are based on a questionnaire that is designed to give the facility high marks. I wouldn't trust reviews ever again and I caution others that are using them to decide on a facility.

You will have to take the time and go visit and talk to the employees, residents and their visitors. It can be a lot of time up front but you will know that she is in the best place for her. Visit multiple times and have meals there. This is the best way to know what the facility is like.

Best of luck and let us know what you end up doing.

Longears Oct 2019
Sounds as if the terms "memory care" & "skilled nursing facility" are being blended together or used interchangeably.

Memory care would be a safe environment where mom can get help with meds, bathing & other ADLs while being offered & encouraged to participate in activities that keep her mentally & physically stimulated. The unit would be locked to prevent wandering & the aides & nurses would have extra training in dementia care.

In a SNF the level of care provided is even higher. Clients can do less for themselves & may not be able to participate in activities. This level of care might be provided in a separate unit of the memory care facility. In my experience most of them are in a separate unit of a nursing home.

Bottom line: you know your mom needs to be placed. For memory care or SNF admission she will have to have a physical & mental exam. She will be evaluated for what she can & can't do for herself. The facility will require the equivalent of a doctor's order for her admission.

How to pay for care will possibly be an issue. My Mom's memory care facility did not have any Medicaid beds. When she/we couldn't afford memory care anymore, she had to apply for Medicaid & move to a nursing home.

Hugs & best wishes for an outcome that works as well as possible for all of you!

Kathymoore55 Oct 2019
Sounds like your Mom and my 91 YO Dad are in about the same place. I have been researching MC facilities in Austin, Texas with the help of "A Place For Mom." The thing to look for is "programming." Do they tailor a program to the "individual's needs and history (hobbies, career interest, etc)?" That is #1 on my list because it keeps them busy, but provides routine that is interesting to the individual. This helps deal with the extreme paranoia and the boredom that leads to creating scenarios they believe are real, but are not. Additionally, is there space for the individual to roam, but remain secure. This is hard to find because it is hard to keep track of 40 patients, but 2 of the 5 facilities I toured have found a safe way to provide this. This is really important so they don't feel like they are being held hostage, but at the same time feel safe. One facility did not have 24/7 nursing care, only week days, so I ruled it out even though my Dad is physically in pretty good shape for 91. Finally, ask about the staff and how long they have been working there. My favorite facility had chefs that had been there 15 years. Most of the employees had been there more than 5. This tells you something about the people and the work atmosphere in the facility. Important, but last on my list was "overall appearance" (cleanliness, maintenance, etc).

Dad has the resources for any of the facilities, but at this point, my brother is struggling with the process of going to court to take power of attorney as Dad refused to give it, and is now no longer competent to do it. I feel that the longer we wait, Dad is missing out on a more peaceful purposeful life.

Hope this helps!

AnnReid Oct 2019
This exact situation occurred when we sought placement for my LO. She was so beautifully groomed, seemingly “present” during conversations, and alert to her surroundings that several people thought I was the potential AL resident and SHE was MY caregiver (no boost for my ego, for sure).

Very soon after placement, the cracks appeared in the fastidious facade that she’d cultivated her whole life. Barely a month into her stay, she was moved to the third (locked) floor, and became a permanent resident there.

The second floor had observed wandering, behavioral issues, and significant emotional swings during her stay there, and determined that she was clearly unsafe. The third floor was in fact inhabited by mostly silent clients, but she seemed almost oblivious to them.

Now, after over a year, we who love her know that the third floor is the right place for her. There are still behavioral concerns at times, but we are blessed by the services of a gentle and very capable psychiatric physician’s assistant who has been a constant source of support.

She has come to enjoy our 20 minute visits several times a week, and takes part in religious services and mealtimes when she chooses.

You sound as though you are focusing on the right questions, and looking toward the right direction. “Professionals” can provide very helpful input, but you also have to have confidence in following your gut when entrusting the care of a vulnerable and cherished LO to someone who is not family.

againx100 Oct 2019
I find it strange that memory care is worried that she can physically dress herself, etc.

But her mind is a mess and it sounds like MC is the right place.

Does the facility have a regular nursing home too? Maybe place her in one of those rooms, then when they understand how bad she is, they can move her to MC?

Grandma1954 Oct 2019
Memory Care has a wide range of residents at varying degrees of "altered mental status"
Memory Care would be for someone that requires more help than someone in AL but the important thing is most Memory Care facilities are LOCKED units.
If your mom might wander off then placement in Memory Care would be appropriate.
When I had my Husband in Adult Day care it was at a local Memory Care facility. They took residents out at least 1 time a week for lunch, there were other outings scheduled for day trips. Obviously the ones that took these trips were mobile, with or without walkers or wheelchairs. So they were not all "bedridden unable to talk" Many were able to do some ADL's to one degree or another.
I think you need to tour a facility or two to see for yourself what they are like.
It might also be a good idea to place mom there for Respite for a week so you and your family can take a little vacation and MIL can see how it is.

Is it possible that placement in a Memory Care facility will eliminate the Geriatric Care Managers position and she is looking out for her job more than the client (you as well as mom)

cwillie Oct 2019
I think the definition of memory care differs from region to region, where I live it is designed to give appropriate extra support to those people who are still mostly physically healthy and once they need a higher level of care they are sent to a nursing home.

elaine1962 Oct 2019
What is memory care and what is the criteria for getting help for it?
haileybug Oct 2019
Memory Care is a special care unit that is locked. It is for people with dementia or alzheimers they may wander or need extra care.

When a doctor is referring a patient for long term care, he will state what level of care they need. Alf, SNF, MC, etc.
Wubba1108 Oct 2019
Jode, I think you're misunderstanding the point of my post. My husband and I are absolutely on board with a memory care facility. We require no convincing in the matter. The one that is uncertain is our case manager who feels mom is too physically well for a memory care unit and will become depressed being surrounded by bedridden individuals who can't walk, talk or do much of anything. I didn't anticipate getting that feedback from a geriatric care manager and want to know if it's normal for a professional to try to hold you off on admitting your parent to one of these facilities because that's what we're experiencing and I expected it to be the exact opposite.

BarbBrooklyn Oct 2019
Wubba, I'm so sorry that you are in the middle of this awful journey.

So, at least when we looked at MC for my mom, there were communities that had differing levels of care. There was a wing for folks with mild to moderate dementia ( they were conversant, went to activities and ate in a large common dining area. No one was bedridden. There was a different wing for Modwrate to severe dementia patients. I dont recall anyone being bedridden. They were a less cognitively competent group. There were special "stations" like an old fashioned kitchen , nursery, tool shed, etc set up with activites that were simple.

Are you in an area with very limited choices? Did the GCM come highly recommended?
Wubba1108 Oct 2019
We have two options in our area that are highly rated. We will be visiting them soon but that's because I requested it. Our case manager was leaning more towards Assisted Living. We had to explain multiple times the frequency of mom's need for assistance before the care manager agreed that AL won't be the right fit. But the case manager is still uncertain as to whether mom will be happy at a memory care unit and I'm just surprised she's not more gung ho about it. I mean, this is her job - she's paid to place seniors in these places, so it's weird.
jodedwards29 Oct 2019
My question to you is, what has to happen to make it the right time? If you find the right memory care community she will be in the right environment to thrive. Make friends and be social. I would research a few in your area. Be sure to ask the right questions, like ratios, training, programming, etc. When you go into the community does the staff smile and say hello, how do you feel walking in? are the resident's engaged? are they smiling? What is their hiring process? Can I stay for lunch? It doesn't matter how physically well or unwell she is. Its where is she is mentally and how a memory care community can meet her where she is, not where everyone may think she should be. Trust me there are places out there that would be perfect for your mother that are vibrant, lively and full of life. I know of 4 off the top of my head.
Roseformom Oct 2019
Where are these four places? They sound wonderful. I'm in CA and have not found any memory care as you describe as vibrant, but would love this for my mom. As of now, mom is in memory care, but is in better shape than everyone else. She is moderate severe in dementia, and able to socialize and walk. Almost everyone else is in wheelchairs, a lot older, and cannot talk. And, there are no day trips. It has some outdoor spaces, is clean, decent meals, and nice staff. It's the best memory care I've found in my area and it's not cheap. I wish we could move to where you are.

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