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Kablooie Asked September 2023

What tack to take when advocating for dad in memory care?

I'm wondering how to find out what's reasonable and understandable versus carelessness or neglect in memory care units. It has been a real education since we got my 95 y.o. dad into one in January. I've spent my life trying to be understanding, and yet I find myself privately angry at this fancy place we are paying 13k a month for. I understand that working as a caregiver on a memory care unit can be like herding cats. I understand times are hard with staffing and there is turnover. I understand I understand I understand. But how much should you excuse? What's important and what do you let go?


 


I stopped by on my way home from work tonight and saw my dad sitting alone waiting for supper. Everyone else had eaten and had gone off to watch TV in the group area. Dad often orders something other than what is served everyone else, because he doesn't like the food there. I was told he had ordered fish and chips or a cheeseburger. They kept saying it's coming, it's coming... and 40 minutes later it still wasn't there. I went down to the kitchen to check and they were harried and didn't know what I was asking. I came back upstairs to let my dad know they were still working on it, and he looks so pathetic sitting there off in the dining room by himself with his elderly head hanging down still waiting for supper so long after everyone else had eaten. It broke my heart. I went down to the front desk in tears asking the concierge the best way to schedule a family meeting in the next week with the manager, and he encouraged me to do so.


 


I went back upstairs to tell Dad it should be here any minute and they finally came around the corner with a very cold plate of fish and chips. Another caregiver told me that staffing had been erratic that day and a person who is telling me food was coming had gone on her break.


 


What do you make of something this? I know plenty goes on when we're not there, but I can only work with what I witness. I know things happen. I know there is a possibility of displacing my feelings about his decline onto the care facility. I don't want to rant and have them mistreat my dad either.


 


What would you do?

AlvaDeer Sep 2023
I honestly have never heard in my life of someone being able to order something special in memory care; generally there are two choices on the menu. Occasionally I have noted someone can instead get a salad ordered, or soup. But another meal that other residents aren't getting? At 13,000 a month? That would be a bargain in Cali where it is more like 20,000 a month and you have a couple of choices.

That said, if this is the "norm" at your Dad's facility, go ahead and speak to whomever in admin they suggest. I will say that at some point, this being a private business, often residents are told that they "may be happier somewhere else" when their needs cannot be met at the residence.

Only you can really decide, and I hope you approach honestly, asking the ADMIN (rather than us) the question above you wrote to us. Ask the admin if your requests seem to them at all "unreasonable". Ask that they be honest with you; tell them it's a learning curve for you, and you understand they are trying to keep many families and residents happy in an unhappy situation. If they are worth their weight in salt they will lean forward, grasp their two hands together, say "You know....................." and then level with you about whether or not your expectations are likely to be met. It would be a relief for you all, I hope, to approach this honestly and openly.

I sure do wish you the best. We sure do suffer for the elders we love when they needs must be in care. Well do I remember.
iameli Oct 2023
I was thinking the same thing. My mom is a type 2 diabetic. Most of the items on the menu at her facility are things she really shouldn’t eat much of. And she is conscientious about following the diet. So she eats a lot of salad and soup. We take her out for a meal every few weeks and I’m trying to think of dinners I can make for my husband and I that we could make a little extra to bring for her. She’s in an independent apartment, not memory care, so I realize that could be different.

It seems to be a case of the facility over promising , but I don’t think I’d ever have the expectation that a care facility would operate like a restaurant. I think that when you find a person who thinks the food is good in one of these places, you have found a person who isn’t picky about food.
Kablooie Sep 2023
Thanks all. I like some of the suggestions, and the reminder about safety. I do have a family meeting scheduled with the admin, I was just reaching out here first to see what people's experiences were.

Yes he's a narcissist but with pretty bad dementia, I don't see how we could hold his eating preferences against him. There's not a lot you could hold against him at this stage. He's not consciously starving himself.... he's got dementia! No amount of reasoning is going to change that, or telling him to straighten up and fly right. The food is not good. Really surprised at that for how much we pay.

There is no menu in this memory care. You get what you get, one choice only. But in order to entice us to move him in, they promised he could order something else if he didn't care for what was being served. That is always either a cheeseburger with fries or fish and chips with fries. He does eat what they serve quite often (but always ignores the green vegetables). :-)

I don't know enough about adult family homes, good ones, but maybe he would have been better off there... There's just something about this corporate warehousing of the elderly that is really hard to take. But there are very few choices when you can't do the caregiving yourself. At least he's in a nice place and staff seems careful and caring for the most part.
sp196902 Sep 2023
Then they definitely need to serve his food with everyone elses since they told you this was not a problem. And no excuse to give him ice cold food either. I hope your meeting helps your dad at least get his food warm and with the others so he isn't by himself just waiting in his wheel chair after everyone has eaten.

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MargaretMcKen Sep 2023
This is about he “won’t eat anything he doesn’t like”. There are some things that some people find nauseating, but other than that I remember my mother’s line “you eat what you’ve been given or you go without”. Perhaps he needs a ‘come to Jesus’ talk about where he is and why. It isn’t an a la carte restaurant.

He could well be annoying the staff, just as he could be an annoying demanding parent in home care.
anonymous1732518 Sep 2023
Maybe, doesn't excuse his not getting food with everyone else.
Msblcb Sep 2023
I had terrible issues with my mom. She was a vegetarian for years. She had a terrible time chewing. So, when I placed her, I asked them to do veggies and soft foods of which they served every day on the menu. She was there 5 months and the kitchen never really got it right. It was not her refusing, she simply could not chew it. No amount of meetings, care reviews or management discussions could really help.

In my case, it was a poorly managed facility and the fact that it is hard to customize with so many residences. I ended up going every afternoon and preparing a meal that I knew she would eat and yes, second guessing the caregiving decision.

As the dementia became more severe, she lost her appetite and her taste changed. So, that made it even more difficult for the facility and for me. But I agree, for $13,000 it should be served on a gold plate.

Grandma1954 Sep 2023
*First...If it is a SAFETY issue then that needs to be corrected immediately.
*If you show up and he is sitting in wet clothing ..that needs to be corrected.
*If you show up and ask where he is and no one knows and you find him wandering in the courtyard...that is a problem

The example you give with your dad's meal. What I would ask is this. Even though dad orders another meal could you bring him the meal that is being served to everyone, or at least a few items like some fruit or one of the sides. This way dad can eat while others are being served and then the meal that he wants even if it comes a bit later he will not be so hungry. This is sort of like what I did when the kids were little and we went to a restaurant. I would ask the server to bring some crackers to sort of tide the kids over until the meal came.
It is very possible that if they bring him the regular meal he may actually eat it and not "need" the one he ordered.

Newtothis54 Oct 2023
If you've interviewed a place to your satisfaction before your parent arrived there, don't feel like you can't hold them to what they told you. Hold them accountable for all our sakes. My mom is 96 in a memory care unit in AZ. Her place has a menu on the table of choices that are served for the days meals. Also there is a list of items separately that she can choose from if she doesn't like what is being served. The people are sat together in fours according to their memory ability. So you will see my mom's table is usually always choosing a variety of foods, while the other tables choose from the daily menu. Still they have a choice. I have had issues with the facility, but I go directly to the top person in charge of the whole facility. She has been quick to address the issues. I have stayed overnight twice, because my issues were with the evening staff. They again, must maintain the quality of care for both day and night. I pay $8,000 a month and feel like I should get the care I expect. Afterall it is my MOTHER and I won't consider less. Just because we can't have our parent at home should not make us expect less. We are paying for care so we should expect the best available care.

rapidswimmer Oct 2023
I placed my mom in MC at the end of January as well. I have had the same issues as you. I feel bad enough about having to place her there, I wish I had the time and money to take care of her myself and after seeing some of the stuff I thought she was going through in the facility, I felt worse.
I've found for things like this, the eating issue, I would speak to the aids. They are the ones that spend the most time with your loved one. They probably know more than anyone there about your dad. I would just let them know, I don't like seeing my dad sitting there by himself, waiting for his food while everyone else is gone. Then his food is cold. Ask them if there is something they can do to help.
Maybe you can keep some snacks in his room and ask the aid, if his food isn't ready when others are eating, could they bring him a snack until his comes so he can eat with them while waiting. Or, could they place him with the other folks in the main room until his food does come. If you start this conversation with them, they may also come up with some ideas to help.
I found that as obvious it may look to you, people in these places are sort of numb to it and need a reminder. Also, speaking to the people who do not spend a lot of time with your dad may not get you what you need. If you discuss your sadness at seeing your dad like this to the aids, they'll be more aware of it and hopefully will help.
I still think you do need to talk to the higher ups though, just to make sure everyone is aware. We paid almost 11K per month until mom got approved for Medicaid and this place is not even close to the really nice places I looked at and couldn't afford. I could not believe this cost when I first started this journey.
I visit as often as I can and at different times to make sure my mom is being cared for properly. There are still always issues but I'm feeling somewhat better about it.
I hope you find some peace with time and can visit your dad without worrying about his care all the time.

BurntCaregiver Oct 2023
I have been in the care field for a long time and I'm going to tell you the truth.

The facility's staffing problems are not the fault of your father or any of the other residents.
They are collecting $13,000 a month from every resident in that memory care. So there's no reason why they should be under-staffed or have erratic staffing at any moment day or night.
Their shareholders being greedy for money is not a good enough reason to excuse anything.

You need to make your face seen and your voice known to them all the time.
Do not tolerate any excuses. Your father's meal should not have been 40 minutes late and served cold. If the facility allows the residents to have meal choices then they offer that service and damn well can properly serve up what a resident orders in advance.

Getting the meal served hot and around the same time as everyone else's is pretty basic and I would not overlook that is wasn't.

Your father should be kept clean, in clean clothes. His space and bed should be clean too.
His meds should be given as directed and in a timely manner.
His meals should be served the same time as everyone else's if they were pre-ordered. If they weren't then maybe there's some waiting time. Not 40 minutes. The kitchen isn't hand-breading the fish and slicing the potatoes fresh to make the chips. It's all frozen pre-made stuff.

Always keep the staff and administrators on their toes, my friend and never forget they're collecting $13,000 a month to take care of your father.

TouchMatters Oct 2023
My heart goes out to you.
I dealt with this although in a nursing home and not paying as you are.

There are two ways I would suggest you handle this:
1) Talk to the administrator. Get answers. Write them down; ask him to send you an email with specifics - procedures, i.e., for meal ordering if not on the menu.
(It doesn't surprise me that it takes a very long time for the kitchen to prepare a special meal-find out the specifics by talking to the kitchen / food manager and/or the administrator of the facility.
* Find out the procedures for special request meals ...
* See if you can provide menus to them for the week - so even if different food from the status quo, they could be prepared to have it available.

The issue likely is staff - it takes one extra person to prepare special meal(s).
I was told that I could bring meals in and they would be kept in the refrigerator or freezer). Check to see if this is possible. Not an ideal situation, but perhaps better than how things are going now.
2) Document everything --------------------------
3) I worked with an Ombudsman for a long time.
I wanted care to be improved, not just report them. Others there couldn't speak up for themselves (and most others there didn't even have visitors/visits from family).
- I went 3-5 x / week to see my friend of 20 years. I was like a lion protecting her cub.
- After 'trying' to work with administrator, I finally told her (Ombudsman) to file a complaint with the licensing board of these facilities.
- Bottom line: I was also on the Complaint and they called me.
They do two unannounced visits and see what's going on. If everything appears in order at those two visits, there is nothing else they (can) do. Procedures in a private facility that your dad may be under a different jurisdiction of 'some' government agency. Find out which one it is.
3) Put your complaints / concerns in writing and ask for a written response from the administrator. First try to talk 'nice' although this is hard with knowing what is going on - this is why I initially asked the Ombudsman to intervene.

While it is (critically important)/ good to create a rapport with the aides who do the 'hands on care,' you also need to speak to the manager(s) / administrator. Aides do not make the rules. Some care, some don't. Unfortunately, I believe that this is true no matter where they are employed / even at $13,000 / month facilities. Facility charges does not translate into the aids making more hourly wage.
* I believe it is a national problem / dilemma to hire 'good' help AIDES / CNAs.

I would start with asking the administrator :
"What Can I do?
What can you do? Educate him (or her).

From my experience, there is little to NO communicate and/or NO Accountability between managers and line workers (or administrator and managers).
Good people leave facilities like this. I've seen it over and over again.

I hate to be the bearer of bad news.
You are in a position to move your dad to another facility (I couldn't do that).
Ask for references first (from residents' families), talk to social workers.

The breakdown is 'likely' with the manager of the aides - and their training (and lack of caring). For most, it is a job. Period. And it is hard work. There seems to be a national shortage of qualified aides / cna's, and this shortage is all over in other industries.

Yes. For $13T a month, you 'should' expect a good meal. Find out why it is taking so long. And, if you cannot go to check on things, hire someone for an hour 2-5 x week to check in to observe what's going on. And, contact your local Ombudsman.

Gena / Touch Matters

TouchMatters Oct 2023
P.S. Be prepared.

I took photos every time I went and saw situations that were inadequate.
Bottom line: Licensing Board of care facilities said I was a 'third party' and all of my documentation was not concerned evidence or - obviously - even considered.
I spent close to 7-8 months taking photos and sending them to the Ombudsman so she would have this documentation. I wasted so much time and energy although I really wanted the care to be adequate. I wasn't asking for anything special. Just water available ... change him ... help with eating as necessary. Basic stuff. gena
rapidswimmer Oct 2023
How did your situation turn out? I hope care was improved?
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