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Why are memory care facilities ran like prisons
allalone2day
Posted: Thursday, January 26, 2017 10:37 PM
Joined: 3/11/2016
Posts: 29


I am frustrated. My mother has been in a couple of different memory care facilities and I am thinking of moving again. I do not like the attitude the mangers give. They are in charge, It is there way period. They do not communicate well or even care about my needs as a caregiver and it is frsutrating. Each time I do all the homework and research only to find I missed things. This is in a mid level care. They treat everyone the same with the identical tag line" They have dementia and it is the disease"  No matter the questions, " its the disease". Seriously, how about individual care. Why are these places which cost a lot of money ran like prisons. Help!
dayn2nite2
Posted: Thursday, January 26, 2017 10:54 PM
Joined: 6/20/2016
Posts: 2028


What needs of yours are they not meeting?
SunnyBeBe
Posted: Friday, January 27, 2017 9:33 AM
Joined: 10/9/2014
Posts: 786


Are you talking about a Secure MC?  The ones that I have seen didn't seem like that to me.  They did have security for the resident's safety, since if they didn't they could wander away.  That's why my cousin was placed. 

It is important to feel as if your LO is getting proper care in the MC and that the staff and administration are on board with the LO as their top priority. My LO was in a regular AL and while it was a good facility, they had their issues.  Later, when my LO needed more care, she moved to MC and so far, I'm satisfied.  No place is perfect, but, if you can tell that they care and that they are willing to work with the resident, that helps. Plus, the staff should be trained to address the needs of the residents with more pronounced dementia.  

Have you met with the resident care director and discussed care plans?  Sometimes, a meeting to review matters is helpful.  Also, I think that a smaller facility has certain pluses. 

Have you considered a geriatric psychiatrist consult? Maybe, that could shed some light on any behavior that you or the facility finds concerning. 

 


jfkoc
Posted: Friday, January 27, 2017 1:02 PM
Joined: 12/4/2011
Posts: 17560


Please ask about staff training and get a specific answer. Do not settle for merely experience.
ndhme
Posted: Friday, January 27, 2017 1:35 PM
Joined: 5/31/2015
Posts: 1157


What is it that makes you feel the facility is run like a prison?

Is it because it is secured so the residents cannot wander away and get lost or hurt?

Is it because they have daily structure and routine set in place in which PWDs need to have a stable environment?

Is it because they:

get residents up by a certain time in the morning to toilet, shower and dress for the day?

get residents to set meal times to ensure they eat?

have set times for medication administration?

have set activity times?

have set quiet time for residents to rest?

have set times to start getting residents ready for bed?

What are the issues that their statement of  'they have dementia and its the disease' is bothersome?

And finally, what needs of yours are they not meeting?

As a caregiver/partner, I kept a routine at home to give my DH stable environment. 

 


rebecca2000
Posted: Friday, January 27, 2017 4:55 PM
Joined: 9/25/2016
Posts: 321


I've found it's best to approach issues in MC one by one, rather than sweeping generalizations that put managers and caregivers on the defensive. 

As a matter of fact, we are dealing with a situation right now that may feel familiar.  My FIL was placed in a senior behavioral health unit because of non compliance in MC (eating, meds, showering, pretty much anything they wanted him to do). 

My husband has been onsite in MC to improve compliance and is finding that ... yes they are on a regimented schedule but the real problem is the tone and approach of some of the caregivers.  It can be grating, most are women with high pitched voices, and their urging to eat, for instance, is along the lines of "you need to eat!  You should eat at least half of your sandwich.  Ok, time to eat. Try the soup, you should try that".  My husband said it was grating on his nerves!  My husband can always get his dad to eat, take meds, get dressed but him living with us is not an option. 

Its a decent facility, highly rated in our area, a good location for us so we can visit frequently. We need this to work.  So, we are working 1:1 with some of the caregivers, talking to them about how they can modify their approach, how they can achieve better outcomes with him. We are pushing for more training, and coaching caregivers 1:1, communicating our expectations in writing.  We've had so many conversations where I've said, "I can't imagine you haven't encountered this situation before.  What have you done in the past?  We need this to work. What do you recommend?  We pay you 6k a month, you are the experts. What do you recommend? "  We try to maintain a positive, collaborative working relationship with them - but be firm, consistent, and hold them accountable. 

I think moving has it's own problems - frying pan into fire and all that - although it can be a good option, and I would consider it if things don't get to where I need them to be. 


Rockym
Posted: Friday, January 27, 2017 7:47 PM
Joined: 1/17/2016
Posts: 904


We are changing ALs this week.  When my mom went to check out the new place, they all talk all high pitch voicey.  WTH, my mom called them out on it since she doesn't want to be talk to like a child.  These are grown 80 something adults and it is demeaning to speak to them as if they are children or worse yet, loud as if they can't hear.  My mom doesn't wear hearing aids and hears just fine... why are you talking so loud to her?  We are right next to you.  Training, training, training!
allalone2day
Posted: Sunday, January 29, 2017 10:00 PM
Joined: 3/11/2016
Posts: 29


Yes, I understand that these facilities are secure. That is not the prison. The prison I am talking about is that never ever does the facility take into account the individual that is living there. They, meaning residents, are all lumped together for everything. From the way they speak to residents, the way they feed them, the way they medicate them or not medicate them, the way they check on them and attend to their needs or just ignore them and say "IT'S THE DISEASE" 
I am tired of it all. I have visited at least 30 facilities and every single sales person, regardless of title is exactly the same. Yes to everything, they care, they treat everyone like an adult and an individual and it is "ALL BS". They are all the same. 

 

1-items to bring into your own room, your own room that you are paying a very high price for. They want to say a blow dryer, a iron, a heating pad is a danger. Maybe to some, but not all and if my loved one can handle and function okay with these items no way should they be taken away.

2-communication. Speak like an adult. Do not talk down to them or treat them like a child. Do not ask a person who has no bathroom issues at all if they wet their pants or had other issue. Over and over even thought never has there been an issue. Learn, pass along this to other shifts and be a professional. 

3-Food. These people pay a lot of money. Stop saying gourmet food and choice of food them serve them poor diet poorly cooked food. I am sick of this. Just because someone has dementia does not mean you can take advantage and think they do not know the difference. I ave spoken to dozens of residents who think the food is horrible. Dementia can be treated and helped by the proper diet, continuously. Don't preach care and feed poorly prepared poorly dietary food. I have eaten at several places and some may be okay, consistent-no way.

4-laundry-wash it and iron it and fold it. And stop losing it. Even with labels it gets lost. Most of all-DO NOT WASH ALL LAUNDRY WITH SOMEONES SOILED CLOTHES. This is a health hazard.

5-Medication-I could go on forever here. PRN is complete and total BS. I cannot understand how any medication is PRN for dementia residents. I always get the same story, our staff is trained to look at and read the resident for signs of stress, anxiety, pain, and other signs and base their own intuition on when to administer medication. First of all, every single care staff and nurse has a very different way of reading someone. Once a person is read or understood, why not share that information with other staff members and have it be consistent across the board. NEVER IS-NEVER-ANYWHERE. Doctors orders for this, doctors orders for that. Can you increase or decrease or adjust, get an order. My loved one had skin cancer removed and I asked for a clean band aid--GET AN ORDER-seriously. Orders for every little thing. 

6-therapy-mental-is it too much to ask for a call and have someone discuss the sessions with the POA. To be told they cannot provide me a phone number to call and not to have them call me is criminal. 

7-therapy-physical-is it too much to ask for some minor adjustment over time to better suit the resident. Some treating them all like a heard of cattle and just going thru the routine.

8-games- how about actually adjusting this to someones capability. Why is it always the simplest of things. Maybe some need that, but not ALL. Learn, understand, care for that PERSON. They are an individual.

Finally, I could rant forever. I pay between $6,600 and $8,500 a month. These places act like they are the best in care. They are all an industry, in America we have taken dementia and made it a business. Capitalism at its best. Sickening. I have interviewed dozens and dozens. Moved my loved one 3 times. THE SALES LINE-LET US CARE FOR YOUR LOVED ONE SO YOU CAN ENJOY THE TIME YOU HAVE LEFT-LIARS-The amount of work I have to provide to get doctors, dentists, hair appointments, medications, therapy, and follow up time after time after time. If someone has a name of a great care facility in Illinois let me know-heck, any state let me know. I have paid the best and found them to be inadequate at basic living essentials.

Example- my loved one fell, while a care partner was in the room. All she did was ask if she was okay. The rules of the facility were to observe and note. My loved ones gait was fine, no issues, minor complaints. I went to check things out myself. Immediately when I entered the room I asked how they were, said their hand hurt. I looked at it. It was broken. I am not a medical genius or trained professional. I took them to a hospital and got a cast and sure enough broken. Yes I complained and the person that night care staff was fired. So, did the head nurse follow up-no. Did the administrator follow up-no. Their own rules state they would look at her body. Did anyone notice that their was a bruise from top of hip to below the knee, a giant deep bruise. Not a single note and no one noticed. This is at a place that has excellent reviews-excellent ratings from all sorts of people and places. Highest expensive place around. I held over a dozen meetings in less than a year to get them straightened out. To get them to care and do their jobs. I have meticulous  notes, daily for months on end. It is insane how much work this is. I understand some people just drop and go. They are safe and secure. Safe and secure from who-when the very staff hired to care cannot do their job. 

--this is a business and I am sickened by the lack of care, lack of real results. Personalized care that is for the person in front of them and not some chart and graph, some over all plan that works best for everyone. 

BTW--I am sick of reviews on memory care websites. If your only concern to to have a pet or kids running around, I am at a loss. I almost NEVER EVER SEE REVIEWS ON CARE STAFF-TREATMENT OF PEOPLE. I do not care about your dog or cat. I care about humans who need help and this industry fails on almost every single level. The basic is not good enough. They take everything you have financially and run away with your money. 

 

3

 

  


ghostdog
Posted: Monday, January 30, 2017 10:43 AM
Joined: 2/9/2015
Posts: 542


When I was looking at facilities in northern IL, I was advised that there were more options in Wisconsin -- particularly in smaller facilities or group home type places. We didn't go that route so I can't be more specific.


 


jfkoc
Posted: Monday, January 30, 2017 11:08 AM
Joined: 12/4/2011
Posts: 17560


I would put as my very first priority the initial and ongoing training for all staff. Ask which specific training programs are used!
just exhibit Love
Posted: Monday, January 30, 2017 2:39 PM
Joined: 12/6/2011
Posts: 681


allalone2day

Welcome to this message board.

my friend your words of wisdom are exactly what I went through with my husbands mother you are the first poster on this message board that is close to my story of many years ago .. and I could not deal with it well either..so after only 2 weeks of trying very hard to help our loved one adjust to her new surroundings I became so frustrated and thought I was going to lose my patience with the staff. and after seeing Margie wearing someone elses pajamas and her needs not being met... many other more serious things that I saw with my own eyes because I observe things well. I guess one of my first thoughts at that x about the prices they charged and hired minimum wage staff to care for my husbands mom brought tears to my eyes...we took Margie home and chose to care for her in our home. her bill for that 2 weeks in Hell was $3800.00 .laundry..meds..and beauty shop were all exta charges and that was ok we knew this and brought the meds and chose to do her laundry ourselves yet it still got lost ..they had a hard x explaining some of the other charges..but at the time I wanted out of there and really did not want to hear their excuses ..I did not care about her lost  clothes  or her meds which I provided for  and they so  accidently charged her for again..the powers that be were very polished and the wallpaper in the main entry and flowers were so beautiful..and the small unit Margie was on...left much to be desired..she really did not need much but it would have been nice to have a towel in her bathroom to dry her hands on..I will shut up now.

are you getting the picture here..I was beginning to worry about my sanity and I was a pych nurse and my husband cried every x he went there which was every evening..and when I arrived very early unexpectedly every morning..  the staff did not really like that I was there..and I could feel the tension as I observed their interactions with many patients.. and as Rn,Msn I knew their behaviors were not always correct  and trust me so did they... so my friend..I can honestly say I have been there done that..so way back in 2002 I quit my job and stayed home and took great care of the woman my husband calls mom and I have no regrets..I so loved my job and my life but I chose to do what my heart told me I needed to do as Margie was such a great mom and she needed me and this I could give.

I so hope you find ways to help your mother in her journey of memory loss not easy but we each do the best we can and down deep our loved one's know we did our best at that moment in time.You my friend are very observant also and you will find the answers you need..it is within you. always trust your instincts...and do not give up or lower your expectations of what is right. I forgot to mention I knew how to keep patients safe and also allow them to be given respect and keep their dignity.

Namaste

Love Rosie

"To the World you may be one person but to one person you may be the World"


Still Waters
Posted: Monday, January 30, 2017 2:57 PM
Joined: 2/6/2012
Posts: 1092


I compare them to modern day concentration camps. The reason why is because nobody cares.
I took my mom home because there was not a decent facility within a 50 mile radius of my home. I applied for the Waiver Program funded by Medicaid. I worked full time and had no help from family or friends. There are choices besides facilities. It was a dream come true to be able to be in charge of my mother's health care.
She was better off in so many ways. I never looked back.

Rockym
Posted: Tuesday, January 31, 2017 9:24 PM
Joined: 1/17/2016
Posts: 904


Wow, you guys who have your parents at home are both saints and blessed (and that's coming from someone not very religious).  My mom is in a new AL.  Her old AL sounds like the ones the poster is complaining about.  Her place is very expensive and I have high hopes.  My mom does speak up about things and I am trying to talk to caregivers with respect, etc. so we can all be on the same page.

My back up plan is to have her in an apartment/condo with a couple of 24/7 caregivers.  I don't think my mind or our relationship could withstand living together.  My house isn't handicap friendly and although it is large and I was was able to wheel her around, when she had to use the restroom I had her use a portable commode because I couldn't get her into our bathroom.

Glad I had that portable toilet around .  I hate to hear these tough stories because I know how trying things can be and it takes a toll on us as children/caregivers.


mariemae24
Posted: Wednesday, February 1, 2017 6:08 PM
Joined: 2/1/2017
Posts: 3


I agree with you in so many ways! There are bad facilities like that where residents are treated like children. And no, it's not the disease! Each person is an individual. I say get out. 

Sure, some facilities are secured, and yes some follow strict schedules, but that doesn't mean your loved one has to give up their identity to fit someone else's schedule. 

When you see problems like that, they are symptoms of much bigger problems with the business. Proper employee training would prevent a lot of those issues, if not all. 

I have worked in facilities like that before, and those are the places where caregivers were so overworked that they didn't even give meds if they could get away with it. Half the residents missed at least one meal a day. And some didn't even get out of bed at all. 

And all that happened because there weren't enough caregivers. The best caregivers refused to work there. And the ones who stayed were so stressed out because they were treated badly by management. 

Find another facility. There are really good facilities out there. 

And I think the most important thing to look for is whether they have plenty of staff. There should be at the very least one direct care worker for every seven residents during waking hours. There is actually research to support this! 

Ask them how long the employees have been there. You want a facility where caregivers stay for years because they are happy working there. 

And don't just take the salesperson's word. Pull a caregiver aside and talk directly to them. Ask them objective questions like "how many residents are you assigned to care for today?" That will give you a much better idea of how the facility is really run.


allalone2day
Posted: Wednesday, February 1, 2017 11:39 PM
Joined: 3/11/2016
Posts: 29


Thank you for all of your words. Its not easy. Moving seems so difficult, it takes such a toll on everyone.  Problem is, you never know what the place is like until you are there and then it is too late.  IN America we have done what we always do, its a business. Take dementia and turn it into a profit making machine. Memory care is the new business bonanza..look out.
King Boo
Posted: Thursday, February 2, 2017 9:51 AM
Joined: 1/9/2012
Posts: 3091


Shift your focus AWAY from self standing Memory Care units that have the salespeople you reference.  For profit large corporation MC have the money to do mass marketing on TV, large, glossy proliferation of brochures.  I visited over 25 facilities myself; I quickly learned to stay away from self standing, for profit Memory Care facilities.

WWID?  Look at a non-profit place that has both Memory Care AND a skilled nursing home.  Most bang for your buck - spend at a place you anticipate to do Mom's care across the spectrum.  Also allows you flexibility if Mom needs rehab, to migrate without a big fuss between wings.  No need for a sales department in a good facility - they frequently have wait lists. 

 Who has long term employees; who has a culture that values their employees (you'll see continuing education and staff support services available for them).  Amid the 25 facilities I visited (and additional 10 or so I screened by phone), I would actually have considered using only 5 of them.  What did it have?  Patient staff, who treated my LO kindly.  Who let him have second helpings on ice cream, who could flex with his needs when sick.  Who could do room checks if he was weak from a hospitalization with increased frequency.  Staff that bonded and cared.  Staff that would encourage but not make him attend social events.  Administration that carefully monitered and did have rules, but could flex for an individual care plan if needed (sorry, fire starting things like electric blankets and toasters not included - way too much of a burn hazard for MC).

Shift your focus to a non profit with a good reputation.  Elder Law attorneys usually have a good feel for them as well as Geriatric Care Managers.  In our area, Quaker and Luthern homes have great ones.


allalone2day
Posted: Thursday, February 2, 2017 9:23 PM
Joined: 3/11/2016
Posts: 29


@KingBoo...Please provide an example of the type of memory care you are speaking of. I too visited several dozen MC. Most that are not owned by major corporations. All have a salesperson-maybe not called that, but every single place has a sales person. I'd love to now of one that does not. As for caring staff that stays at the location-this particular one has great staff retention. Spoke of flexible care, spoke of all the things you mentioned. Then, reality hits you square in the face.  Your comment aside from heating pad being a fire hazard-which is wrong and factually incorrect and the comment itself smells of the same"they have dementia and it is the disease" rule. The rule that is used to control everything and deny common sense approach. I do welcome your comments. But please, share specifically your places where no sales person exists, where the core of the staff is superior to all others. I want that place, will move to that place. I fear, it does not exist in this money making industry.
dayn2nite2
Posted: Thursday, February 2, 2017 9:52 PM
Joined: 6/20/2016
Posts: 2028


allalone2day wrote:
@KingBoo...Please provide an example of the type of memory care you are speaking of. I too visited several dozen MC. Most that are not owned by major corporations. All have a salesperson-maybe not called that, but every single place has a sales person. I'd love to now of one that does not. As for caring staff that stays at the location-this particular one has great staff retention. Spoke of flexible care, spoke of all the things you mentioned. Then, reality hits you square in the face.  Your comment aside from heating pad being a fire hazard-which is wrong and factually incorrect and the comment itself smells of the same"they have dementia and it is the disease" rule. The rule that is used to control everything and deny common sense approach. I do welcome your comments. But please, share specifically your places where no sales person exists, where the core of the staff is superior to all others. I want that place, will move to that place. I fear, it does not exist in this money making industry.
 

If you want her to have heating pads, irons and other items, then put her in a freestanding apartment and staff it with caregivers.

I'm sure it's been explained to you why such items are a danger, whether you choose to hear it or not is another matter.

I chose a nursing home - no salespeople there!  Location was within a quiet neighborhood on a former estate, the building was renovated to provide an 85-bed NH.  Staff there for 10+ years, even kitchen staff, food homemade, tasted and looked wonderful, caring social worker, wonderful activities staff and staff in general cared for my mother as they would their own.  I learned many things from them.  When she went in, mom was fully ambulatory and continent, but in stage 6.  She stayed with them until her death 3-1/2 years later.



Mimi S.
Posted: Friday, February 3, 2017 8:30 AM
Joined: 11/29/2011
Posts: 7035


I'm not King Boo but let me tell you about the Facility I have chosen for myself, if and when.

It's in the Denver area because I have more family there. I won't give the name because facilities of one owner can vary.

It's a Continuing Care Community. First thing that impressed me was that the person, basically a sales person, knew the name of every resident we encountered.  All residents, regardless of placement were dressed in street clothes I was asked directed about what I s looking for; granted some folks are looking when this stage is past.  All units had six activities daily; physical, cognitive and social. I was visiting in the locked unit when the group was preparing for a walk outside. Those who could follow directions were reminded to get a sweater and those who needed help were given it. It did seem that all who could were getting outside in the fresh air.  

 

The place has a theme a month. When I was visiting it was about countries in the far east.  I was interested in how this was being done in the locked/memory care unit.  Lots of hands-on.  Constant interaction. I only saw one patient fall asleep. 

There is a social hour before dinner with sometimes entertainment. I was there for the Assisted Living.  Each resident is given a drink, alcoholic, diluted or non-alcoholic. Containers ranged from wine glasses to paper cups. Spills were quietly attended  to with much caring and respect.  Many visitors joined the group, some staying for a few minutes and then leaving with their loved one.

I saw no one sleeping in wheel chairs around the halls. Unless there was a need for a nursing home, at end stage hospice was brought in.

 There was a patient advocate. 

When appropriate a resident may participate in activities of other units.  For example, I might need to be in Assisted Living because I need help managing my meds, but am perfectly capable of joining the Independent Group to tour a museum.

I did check with the state and found one complaint that had been immediately corrected. A resident was moving into Independent Living and had put a lamp cord across the entrance floor. I had already been told about that.  Checking the state report is important.

 Also check about the training the staff received. I didn't. Now I would know to inquire.


allalone2day
Posted: Monday, February 6, 2017 12:34 AM
Joined: 3/11/2016
Posts: 29


@kingBoo..Thank you for sharing and my prayers for your loss. I do want to mention that this is the third MC faciity and the previous 2 had no problem what so ever with a heating pad. Heating pads have automatic shut offs. They do not cause fires and burn people or buildings. I am glad you found someplace that helped you and your mother. I feel our needs are much different and the care you mention is mentioned by every single nursing home or care facility. I was not aware that nursing homes are free. Sorry. they all have sales people, nursing homes have a full sales satf, every single one, they may call it something different, but they all charge for their service, every single one.
allalone2day
Posted: Monday, February 6, 2017 12:39 AM
Joined: 3/11/2016
Posts: 29


Thank you. And thank you to everyone. I know I sound bitter, I am. Everyone has different needs and my prayers are that everyone finds those needs met someplace sometime.
Michael Ellenbogen
Posted: Monday, February 6, 2017 6:47 AM
Joined: 11/30/2011
Posts: 2680


I feel your pain and you are so right. I pay 12,000 a month for my mother and its a horror story. I only wish I was my old self to be able to find a way to change all this but I am forced to except it. This is one of the reasons I added this thread below. So many got upset with me because of the tile but it is so realistic. May be not for all but for some it is exactly like that.

 

 

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147526614&page=5

 

 


dayn2nite2
Posted: Monday, February 6, 2017 2:21 PM
Joined: 6/20/2016
Posts: 2028


allalone2day wrote:
Thank you. And thank you to everyone. I know I sound bitter, I am. Everyone has different needs and my prayers are that everyone finds those needs met someplace sometime.



You do.

You seem unbelievably invested in your mother having a heating pad.  I don't care who allowed it before - if you're here on this forum then I can only assume your mother has dementia and all the issues that come with it - which means her sense of pain or burn is diminished and with age her skin is now thin, she wouldn't be able to tell that if she put her heating pad on high and it was too hot for her, so she could conceivably get a burn from a heating pad before the auto-shutoff feature is triggered.

Again, if you want a place for her that meets your specifications, lease an apartment somewhere and pay for help.  Then it's your rules 24/7.


feudman
Posted: Monday, February 6, 2017 3:59 PM
Joined: 6/5/2014
Posts: 1318


I Know you're going to disagree, but I have to get in line behind dayn2nite.   You seem to find it unacceptable that these places won't bend their rules for residents "when warranted," but where is your flexibility? There is likely not going to be a place that will meet ALL your expectations, unless it's YOUR place.

Just taking #1 from your long list: our LO's have a progressive condition that clouds their judgement. They are "fine" with various items (or behavior patterns) right up until the day they aren't. All facilities are very concerned with any and all liability exposure. The rules at most are mandated by their insurers, based on their data of claims (and dictated by the parent company). These rules are probably not negotiable.     

King Boo is talking about very small facilities. A member of my support group chose one of these. They take only 6 residents and are strict with their admission and other policies, but very loving, religion guided care. A place of that size cannot afford (nor need) a sales/marketing staff. They do exist. I don't want to name it here.


allalone2day
Posted: Tuesday, February 7, 2017 6:59 PM
Joined: 3/11/2016
Posts: 29


@dayn2nite2...Seriously, Heating pads can come with preset levels, never to burn, even if you left it on for a year straight and it never left your skin. The heating pad is her security blanket and many, I have checked, many, in fact all but this one allows them. As for dementia, there are so many different levels to suggest you understand and know is so wrong on every level. I am here seeking help and mostly I get people saying support groups help, prayer helps. Well, they don't. These places have a single interest- Money. I can tell for certainty that memory care facitilites are one of the fastest growing "industry" today. In a 50 mile radius from me at this very moment I know of a dozen new builds going on currently and that is with 3 dozen facilities already operating. These are places I happen to notice driving down the road.  If a current senior assisted living home does not have memory care they are adding memory care because people leave and they want your money. Your statement about dementia proves my point. Quote-It's the disease" That is the worse phrase ever. Every care partner, nurse, whomever uses it as a way to catalog every single person with dementia the same. Our loved ones are humans, individuals with individual needs. To suggest in any way shape or form you can project any knowledge of a person with dementia tells me you are close minded.
allalone2day
Posted: Tuesday, February 7, 2017 7:02 PM
Joined: 3/11/2016
Posts: 29


@feudman. I understand totally what everyone is saying. Understand me. try. These places are a business, nursing homes are a business. It sucks. It is horrible. Do not label a person with dementia pre choosen to follow a path others have traveled, regardless if patterns do repeat. That does not mean a person cannot be treated as a individual. If you follow the "it's the disease" line. You have already lost. I will never believe to accept marginal care, marginal effort, marginal expectations. Loved ones deserve better than to throw in the towel and accept marginal anything.
dayn2nite2
Posted: Tuesday, February 7, 2017 7:42 PM
Joined: 6/20/2016
Posts: 2028


allalone2day wrote:
@dayn2nite2...Seriously, Heating pads can come with preset levels, never to burn, even if you left it on for a year straight and it never left your skin. The heating pad is her security blanket and many, I have checked, many, in fact all but this one allows them. As for dementia, there are so many different levels to suggest you understand and know is so wrong on every level. I am here seeking help and mostly I get people saying support groups help, prayer helps. Well, they don't. These places have a single interest- Money. I can tell for certainty that memory care facitilites are one of the fastest growing "industry" today. In a 50 mile radius from me at this very moment I know of a dozen new builds going on currently and that is with 3 dozen facilities already operating. These are places I happen to notice driving down the road.  If a current senior assisted living home does not have memory care they are adding memory care because people leave and they want your money. Your statement about dementia proves my point. Quote-It's the disease" That is the worse phrase ever. Every care partner, nurse, whomever uses it as a way to catalog every single person with dementia the same. Our loved ones are humans, individuals with individual needs. To suggest in any way shape or form you can project any knowledge of a person with dementia tells me you are close minded.
For the 3rd time, here's your alternative - lease an apartment and staff it with caregivers of your choosing and your rules 24/7.  There ya go.  

Marta
Posted: Tuesday, February 7, 2017 7:43 PM
Joined: 6/3/2013
Posts: 718


Why not care for her yourself?  Am genuinely curious. 

Lmk, NP


allalone2day
Posted: Tuesday, February 14, 2017 8:40 PM
Joined: 3/11/2016
Posts: 29


All, I am grateful for the many replies, even those whom seem to have their own mind stuck in a single gear and unable to respond in an open and honest discussion.  My question, my rant, my complaint is that memory care is very bad, ran poorly in almost every single instance. Few have offered a real and thoughtful response, most sing the sing they have been taught. Get your own care or live with what can be purchased on the open market. That is my point. Most everyone seems to feel what ever care is offered is the norm and needs to be accepted, regardless of any individual needs. Dementia destroys many lives including family and friends of those afflicted. Why do we need to accept the status quot. Why should we not intervene for those we care the most about. I mentioned dozens of legitimate complaints and concerns and most focused on simple things- a heating pad, food, items. My question was and remains, why do we have to accept prison like rules, prison like atmospheres, unfriendly staff, simple and cruel institutional care. Most of you seem to think that is great. Rent an apartment, get a staff, hire your own help. build  your own world. Thats not the point. The point is these memory care instituitons are failing our loved ones. At what point do people STOP saying " IT'S THE DISEASE".

How about, love, care.

I appreciate people taking time to read and or comment. To build my own world or safe place isn't an option for me or thousands of others. 


Twin Mom
Posted: Tuesday, February 14, 2017 9:41 PM
Joined: 12/9/2015
Posts: 328


From my perspective modern day dementia care in many facilities and offered by many home health agencies is much like the care that children and adults with developmental disabilities have suffered from for many many years.  I now have my life in both worlds, adult children with developmental disabilities and a husband with LBD.  My kids are 23, and I will say that over their educational years the services they received from the local school districts ( and we moved more than once) were at best abysmal, but it did improve albeit slowly.  Things improved because advocates advocated for changes and many parents fought long and hard for many small successful improvements.   It is still not up to par.  We were fortunate to have the wealth and the ability to homeschool, so our children received reasonably decent educations..and are slowly making it through the college world.  Next hurdle will be meaningful employment, most likely that will come from government agencies that are willing to hire people with disabilities.  Unfortunately, I believe the same advocacy is going to be necessary by the loved ones of those suffering this horrible disease.  And, that advocacy is very hard to do when you are also working, caring for your loved one etc.  However, reality is that is the only way things will change.   You are right when you say it shouldn't be this way.  Our system is so messed up.  Last week  a drug was slated for orphan release in the US in March for muscular dystrophy.  That drug has been available from Canada since at least 2005, at a cost of about $1200. per year.  The US drug manufacturer who just won FDA approval was planning on releasing it for $89,000 per year...saying that the average patient would have a $20 copay and the rest would be picked up their insurance. Meanwhile, only those who could afford the drug out of pocket for the past 12 years have been able to provide to their children.
jfkoc
Posted: Tuesday, February 14, 2017 9:48 PM
Joined: 12/4/2011
Posts: 17560


Whether you do all care 24/7 , have people come in 24/7 or you place your mother you want her care to be by someone who is trained in the non-medical treatment of alzheimer's. ..that is what you must find. There must be training. It does not matter how clean the operating room is if the surgeon is not qualified you do not want to be there.

Have you been able to do any reading about non-medical treatment? Take a look at Abe's Garden in Nashville and The hearthstone. Examples of really good care. With those in mind do some serious comparisons.


feudman
Posted: Wednesday, February 15, 2017 10:07 AM
Joined: 6/5/2014
Posts: 1318


allalone2day wrote:

"All, I am grateful for the many replies, even those whom seem to have their own mind stuck in a single gear and unable to respond in an open and honest discussion."

Do you mean as in not being able to get past those infuriating heating pad rules?

"My question, my rant, my complaint is that memory care is very bad, ran poorly in almost every single instance."

 It would seem if we disagree, we are stuck in a gear that renders us unable to respond appropriately. But here goes:

I know there are some deplorable facilities...I've been in a few. But in some markets (perhaps only the more affluent ones), there are options that don't fit your description. I'm very happy with the MC my mother is in, and the man in my support group who chose the 6 bed facility was also very happy. But he had rejected 3 or 4 dozen others before finding it. The one without the marketing staff. THEY EXIST. But they all have rules. Your LO will likely be gone before those rules can be rewritten. I'm unsure what advice or encouragement you're seeking, if providing your own care isn't an option. But I hope you find some solution that you can live with. Best wishes.


jfkoc
Posted: Wednesday, February 15, 2017 11:52 AM
Joined: 12/4/2011
Posts: 17560


allalone2day...I totally agree with you and thankfully things are changing through education. Caregivers can do a lot to effect change . We do need to ask the hard questions and demand more.

I go so far to call facilities specifically to ask about their staff turnover and training. I usually get an answer that is unsatisfactory to me. My goal is to plant a seed that maybe they need to pay attention to the fact that people are looking for more than "pretty".


allalone2day
Posted: Thursday, February 16, 2017 6:47 PM
Joined: 3/11/2016
Posts: 29


Thank you everyone. I appreciate you all.
The_Sun_Still_Rises
Posted: Thursday, February 16, 2017 11:02 PM
Joined: 7/24/2015
Posts: 3020


allalone2day wrote:
I am frustrated. My mother has been in a couple of different memory care facilities and I am thinking of moving again. I do not like the attitude the mangers give. They are in charge, It is there way period. They do not communicate well or even care about my needs as a caregiver and it is frsutrating. Each time I do all the homework and research only to find I missed things. This is in a mid level care. They treat everyone the same with the identical tag line" They have dementia and it is the disease"  No matter the questions, " its the disease". Seriously, how about individual care. Why are these places which cost a lot of money ran like prisons. Help!

-----------------------------------------------------------

I hear you, I feel you...and I have read through the responses, and I get you frustration...as a person dx'd Alz....I get it on more levels that you know. 

For finding a care home....look for one that Teepa Snow have trained the staff and endorsed...or run by Dr. Allan Power.   Indeed, their respective websites might list the homes that they endorse. 

What you looking for is TRUE "person-centered care"....and not the fakey person centered care (where they give people dolls, or have them fold clothes, or pretend paint the walls), this is done by people who don't want take the time REALLY get know the person, but just give busy work keep them happy.  Most, know and see through it. 

It NOT real talked about on this forum...which why you likely not going get a lot of helpful responses this subject.  There ARE care partners out there...but they the ones getting us on support groups.  But they are out there. 

And there IS an organization working CHANGE all this....how we cared for, fighting for our rights human dignity....that would be Dementia Alliance International or DAI.  Caregivers are very busy...so those us dementia have historically had take it on all by ourselves do this.   They travel around world, go UN and WHO, try fight for our rights...travel and speak with care homes.  Their BIGGEST slogan (which is indeed borrowed from the disability rights groups) Nothing About Us Without Us.   And, indeed, if you want know if a place good for people dementia...or if it truly dementia friendly - notice if they have people with dementia in decision making capacity their organization....if not, then no...they do NOT speak for people with dementia....or, likely care what we think, nor are they likely open input from us.

And you are indeed right, we are unique individual human people....with needs beyond what are often thought about or met in caregiving (like chances for personal growth, development, meaningful participation in our lives, joy, etc.), in homes it often what is needed make their routine easiest them.  And, unfortunately, we don't have (yet) the Dementia Village of the Netherlands here.

I strongly suggest you check out Dr. Allan Power's book, Dementia Beyond Disease....for know what you might be looking for in a care home setting. 

And best luck you.  You a good, powerful, voice us...please keep speaking it...our lives and well being depend on it. 

<3