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how to assess quality of care
Susie J.
Posted: Tuesday, September 10, 2019 2:36 PM
Joined: 1/3/2019
Posts: 17

My question.... how much do you let the "I HATE it here" influence your assessment of the care your LO is getting?    My friend, who I am responsible for because her sons and sister refuse to do anything, and I do mean anything, has been in a board and care home for 6 weeks.  There are 3 other residents there and they are non communicating, wheel chair, blanket covered parked in front of a tv playing old western shows.  There are 2 caregivers that are experienced at diapering, feeding, cleaning but don't show any interest in my friend once she is dressed and eaten her meal. She has dementia but is still functioning pretty good except for memory and reasoning.   There is no interaction or effort on the part of the caregivers to stimulate her or talk to her or sit with her and encourage her to do an activity. I have tried to do an activity with her and her attention span is less then 5 min. and she doesn't want to do it and  has great difficulty doing the simplest things.  There is no ability or interest to initiate any activity on her own.  Yet, she's not far enough along in her disease to just sit and stare at the tv. But then I tell myself, because she doesn't sleep during the day, and only has an attention span of 5 min, there is an awful lot of time in a 14 hr day trying to fill it with something she is going to be happy with and maybe the caregivers do try but she is not willing to do things.   She calls me every day to tell me how much she HATES it there. Im getting so frustrated at not being able to know what to say to her or how much to blame the facility that I don't want to answer the phone.   She is paying $4,000 a month for a very nice, clean home, private room, good food, laundry, transportation to Dr., medication but no emotional/mental/physical stimulation.  But, if she did get it would it make any difference or would she still "HATE this place".

Before I overload myself again and look for another place for her any help you can give me on how to know is this her disease or is this not the right place for her?  Before I chose this facility I looked at assisted living and memory care, both were ruled out for various good reasons.

Posted: Tuesday, September 10, 2019 6:01 PM
Joined: 10/24/2018
Posts: 557

I hope I have a friend like you when I need it! You are doing a wonderful thing for your LO. 

My mom hated her AL 3 years ago and wanted to go home. Her dementia was just memory and depression at that point. A year ago we moved her to a sort of continuing care place which is mostly MC. She desperately did not want to be there. Her condition had deteriorated over the intervening two years, and continues to do so. We are at about stage 6.9999 right now. Mom's attention span varies with who and what there is to pay attention to. If I or brother is there, she can focus for hours. If not-- well, I wouldn't know! There are a couple of activities per week that she attends, sometimes just as "part of the group" and sometimes to enjoy a performing group. 

I wonder if your friend or her family have the resources/ability to engage a companion who might "entertain" your friend from time to time? If she gets used to this person, you might feel confident that despite what she says to you, some of her time is spent in happiness or something close. 

I think the closest people to the LOs are going to take all the heat. I know I seem to.... 

Posted: Tuesday, September 10, 2019 10:36 PM
Joined: 4/1/2014
Posts: 5004

It sounds like you have found a place for your friend. As someone said-perhaps a companion caregiver a few times a week will brighten her time there, They could look at magazine together or sings songs or if the person can play an instrument-she could do that. The companion could bring in one of those robot cats or dog and let your friend hold and pet it.I found a wonderful companion for my mother and those are the types of things she did with her. She even did exercises like stretching and catching a ball back and forth. My mother had fun in the moment as her memory was very short term, but I know it did wonders for her spirit and she slept well at night.

 You could also speak to the owners of the facility and ask them why there is no enri9chment program for the residents. Most places at least try to do something-even if it is to bring in a therapy pet or help bake cookies so the residents have their memories jogged by scent. Good luck

Posted: Wednesday, September 11, 2019 4:23 AM
Joined: 3/6/2017
Posts: 1929

Why were AL and MC not an appropriate fit?

It seems a well chosen MCF with a full roster of activities would be a better fit for this stage. Dad's MCF had activities from 8 am until 8 or 9 pm daily with breaks for meals and an after lunch rest period. The staff would engage residents in chores- setting tables or folding their own laundry, dusting- if they enjoyed that sort of thing.
Susie J.
Posted: Wednesday, September 11, 2019 12:18 PM
Joined: 1/3/2019
Posts: 17

As much as I know about this disease I have struggled with accepting just how affected she is.  Because she doesn't do this or that I convince myself she's not that bad and maybe doesn't need that level of care.  We were trying to keep her close to her son who has cancer which limited the possibilities, her finances limited choices but probably the biggest reason we chose this  board and care was that they would take her cats and we thought that would help her accept and adjust and agree to go.  It may have gotten her to move in with little resistance but I can see now it is not going to work out.  She obsesses over them, constantly looking for them, not remembering she saw them 5 min ago. They are causing her more anxiety then pleasure. Since the son does not come see her and the cats are not comforting that is why I am now considering looking at A/L.  I have not seen a M/C like you described, most have been very depressing and again I look at them and say, "she's not that bad".  How do you find the good ones?  There are hundreds.  The companion sounds like it might work but she doesn't have the money for another month.  I will definitely try that
MN Chickadee
Posted: Wednesday, September 11, 2019 1:40 PM
Joined: 9/7/2014
Posts: 931

Yes, at a certain point something like the cats will be too much for her and be more trouble than they are worth. My LO definitely got to that point. Due to the continual impairment, my mom needed her life simplified, decluttered, and very basic routines. 

We often don't see how far along our loved ones are. I agree with a previous poster that an actual MC facility with more residents and staff might be a better fit now. Most have activity or life engagement person who may be able to get animals in to visit and interact with her and get her to activities. With a larger place there are more people to interact with. My LO lives in a place that is divided into 15 residents. She likes to get involved and help the staff with clearing tables and things like that. It is reasonable to expect at least some of the caregivers to be friendly, to take some interest in her and keeping her busy at least some of the time. Most residents at my mom's place have no ability to follow TV. Some do park in front of it, but your mom probably can't follow along and it's not going to be entertaining. 

I know what you mean about facilities being depressing. Some definitely are, but make sure you are giving them a fair shake. To me, it's all about the staff. The couch and carpet might be worn but if the staff are kind and have training that's what really matters. And remember this is not a place for you to live, or a normally functioning person. Try to view the places with the perspective that it is for someone with no short term memory. 

If she is low on money, you will want to make sure you are only touring places that accept Medicaid. This federal program picks up the bill once she is out of money but not all facilities accept it. The rules vary state to state and I highly recommend you have a session with an elder law attorney to make sure her money is handled right in the eyes of the government. The attorney might also have the inside scoop on good facilities. 

I would start with your local chapter of the Alzheimer's Association. See if you can tell them your needs(activities, Medicaid, etc)  and if they can recommend a few places to check out. Also ask around. The hair dresser, church, any clubs or organizations you belong to wherever you can. Dementia has touched a lot of families and sometimes word of mouth is the best advice you can get. I ended up calling dozens of places but was able to rule some out over the phone. Bad staffing ratios, a clear lack of knowledge about dementia or lack of courtesy by the person I spoke to, some weren't locked facilities, etc. I toured 5 or 6  and chose two I would be satisfied with. 

If you tour places, here are some things I considered and did: 

  • Talk to other family members there. Ask the tour guide if there are any families visiting at the time you could speak to or catch them in the parking lot. Their feedback is worth a lot.
  • After the tour, visit unannounced at a different time of day
  • Visit with staff. See how long they've been there, ask if they like it. If the place has constant turnover that isn't a good sign. There is always a fair amount of turnover because of the nature of the work but a few long term employees is good. 
  • Ask what kind of training on dementia the staff has received. 
  • Ask what activities there are and/or if there is activity schedule or calendar you could see. 
  • Sample the food.
We found a great place we are happy with, but my LO still did the "I hate it here, want to go home" routine for months. The adjustment takes time no matter what kind of place it is. You sometimes have to look past that. If she is cared for well and safe that has to be the first priority. Being happy or content may happen later.





Susie J.
Posted: Wednesday, September 11, 2019 1:58 PM
Joined: 1/3/2019
Posts: 17

thank you.  Very good information and suggestions here that I will use
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