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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?

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While this is annoying, I'm not that surprised that they had trouble getting something not on the menu to him in a timely fashion. They are cooking in bulk for many people and this is maybe more difficult. Yes to understaffed and/or overworked, etc. Maybe dad can try harder to eat what they serve there? I know the food probably sucks but he'll probably end up with ongoing issues with special orders from time to time.
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Thanks, againx100, you are right about the bulk cooking challenges. My feeling is that they should know by now that he's not likely to eat their stuff about half the time ... unfortunately he's just getting super thin and weak, partly from age and illness but also from their food. He has a healthy appetite but won't eat anything he doesn't like.

(I added a bit on about a lost wheelchair, which dropped off my first edit )
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MargaretMcKen Sep 2023
Your profile says that he is a ‘classic narcissist’. He may be willing to starve himself to death rather than compromise on getting his way?
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The part about losing his wheelchair keeps falling off, I've tried to edit three times but it's not sticking...
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MargaretMcKen Sep 2023
Your profile says that he is a ‘classic narcissist’. He may be willing to starve himself to death rather than compromise on getting his way?
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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.
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anonymous1732518 Sep 2023
Maybe, doesn't excuse his not getting food with everyone else.
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My stepparents did nothing but complain about the food, the staff got tired of listening to them and it got worse as the staff would no longer listen to their rants.

My stepmother is now in MC (stepfather died), she doesn't even know what she is eating all the complaining has ended.

He always wants special service/attention? These places are institutions serving the masses not designed to serve each person's special order for food, can you imagine if all patients wanted to order special meals? No one would get fed.

Perhaps you father needs to be told the facts, he won't die if he eats what is prepared for him, it is not a restaurant. Most menus include salads and more than one choice of food, why don't you go over the menu with him?
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jimlindac Oct 2023
If he is in memory care and has dementia/Alzheimer's he most likely cannot rationalize the intricacies of his appetite/tastes. It is a medical fact that their brain is dying and tastes for food become very different. What ends up happening in facilities is they stop eating and no one notices and then they dehydrate, kidneys start deteriorating and they die. The only advocates someone with dementia have is their loved ones. They require grace and patience. Thank you
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*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.
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Sorry, but the problem I see is Dad. The one AL I looked at for Mom gave 2 or 3 choices for the residents. Does Dads?

The wheelchair. Was his name on it? Where I worked I was responsible for a durable equipment loan closet. Our stickers were on every piece of equipment we had. Our wheelchairs had our info stenciled on the back if every wheel chair. I took pictures of everything Mom took into LTC, even her glasses. Goid thing I did, clothing lost was returned. Glasses lost were found, on another resident. Hairdresser mixed them up.
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What is this thing about "I don't eat something I don't like?" As long as it won't kill me, I'll eat it unless for a health reason I can't.

How do people get to where they think their "likes" must be catered to? Did their moms cook especially for each one in the family? Did their wives go, "Oh, honey, I've worked so hard all day and I can't wait to sit down, but if you don't like the stew, I'll stand here at the hot stove another hour and a half and make your favorite cheesy pasta with escargot on the side and your favorite chocolate cake? Would you like another helping, dear one?"

The food in the assisted livings I was acquainted with through my relatives was really good. Even if it wasn't, they would have eaten it.

I'm very sorry your dad is in such shape, it's distressing, but fish and chips or a cheeseburger don't sound particularly appealing, and I can't help but wonder what they were better than.
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waytomisery Sep 2023
Why do people think their likes need to be catered to?

Part of the problem is these facilities ( at least by me ) advertise " Restaurant style dining" My FIL is in a very nice AL . most of the meals are pretty good , we have eaten some and my friend ( now retired) used to work there and could buy a meal for $2.00 on her shift, which she frequently did , since the food was good and very cheap. FIL has 3 entree choices for dinner and there are multiple alternates available at all times, sandwiches, salads, soups, chicken breast, hamburger , etc. Yet FIL was disappointed because he expected an actual large printed menu with dozens of options like a diner handed to him for each meal. He does not like that he gets a paper menu the day before where he has to check off what he wants for the next day. But then again , my FIL is a very spoiled , entitled person. He thinks this is beneath him. I told him he is lucky he can afford this place.
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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.
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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.
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Your father is a classic narcissist based on your profile. Is he using food as a way to exert his narcissistic personality on the staff? I am surprised they are catering to him to this extent with special ordered food since he is in memory care.
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13,000 a month is insane. Now I understand why they are putting pacemakers in people with dementia among other life extending procedures.
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againx100 Sep 2023
It's always about the money, unfortunately. I will not be sending my mom in for any operations unless it's for pain relief. We don't live forever!
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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.
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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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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.
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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.
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I think there seems to be an expectation that the kitchen is a restaurant, on both of your parts. They cannot easily custom make meals for the residents, they don’t have the staff to accommodate it.

That said, if he doesn’t like the main meal, they typically have offerings that are always ready ie: salads, tuna or egg salad sandwiches, pb&j sandwiches.

The facility may have an in house nutritionist and perhaps you can request a meeting to brainstorm how to optimize his eating.

I would be careful about entitlement— you don’t want to develop a reputation of being difficult. You want to make sure that you are operating under the right expectations.

I do think it might be a good time to have a general meeting with the staff to review how everything is going and the meal plans can be part of this.

Bur remember, it’s not a hotel or restaurant (despite the outrageous fees). Hang in there!
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Where my BIL is in a NH memory care place he can get other food if he doesn't like what they have on the menu most of the time because they would bring these individuals down to the dining hall where they can order what they want. My BIL is very picky doesn't like anything made with onions and mushrooms and doesn't like fish. Give him a cheeseburger & fries he is set.

My BIL has been in the NH memory care place for a year now. His cost of the memory care is $260 a day. Ranges from $7,800 to $8,060 a month where they give him everything that he needs.

Also he has a little fridge in his room where they put his Diet Pepsi he likes and water. Also he has a snack drawer where we put snacks in there for him if he remembers they are there if he gets hungry.

My BIL is on Medicaid which I had to jump thru hoops(all the paperwork) to get him on it last December. His soc sec and pension only pays for a portion.

We have his room set up like his apartment he was in. Got his recliner with foot stool, his tv, his pictures on the walls, and his hats on the closet doors. Also has his own pillows and blankets. Easy for him to adjust to the room. He swore he wouldn't be there but when an accident happened he landed there.

I would talk to whoever and get it arranged that on certain days he gets what he loves to eat then it won't be a fight. If they have a special menu maybe they can stick to it.

Hope you get some results. Prayers
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IMO, for 13k a month, there should be other options. If Dad knows what is on the menu for dinner that day, maybe he should put his order in earlier in the day. Have no idea if Mom had options but she pretty much ate what was put in front of her. No salad though. She didn't care for them. But the one if the ALs we checked out gave options.
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I can completely understand your frustration. Your father is in MC. As you said there is no reasoning with him or changing his reality of eating only what he likes or he wouldn’t be in MC. You are doing the right thing in calling a caregiver meeting. My guess is you may have to do so almost monthly.
I am experiencing much of the same issues with my mother who moved to MC when dad fell and can no longer take care of her. He is now in AL in the same facility. It has been a 6 week constant battle and visits almost every day to try and get moms care to a level I’m comfortable with - haven’t gotten there yet. Mom, too, is narcissistic and controlling. Her deal is she wants to be left alone to sleep until 11, not take her meds, or shower. She continually orders the staff out of her room in the morning.
I realize she is on a whole different schedule than what they are used to but this is MC. I’ve met 3 times with the head of the unit and discussed strategies to deal with mom. I get a lot of lip service that she’ll instruct and work with the staff but other than when we are lucky enough to get the 1 or 2 staff members that are just exceptional at their job get assigned to her area mom is unshowered, doesn’t wash her hands or face or brush her teeth for days, wears the same dirty clothes each day. I have signs all over her room to instruct her and the staff - “brush teeth each morning” “put all clothes in the hamper at night” etc.
it’s been suggested to me several times to hire a home health caregiver for mom but I’m sorry that seems crazy to me when you’re spending so much for MC.
Any other ideas friends - I’m all ears and desperate.
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jimlindac Oct 2023
This is normal conditions at most facilities. I had cameras in my moms room and the neglect was as/worse than you describe. She never got her teeth brushed. I was told by facility to hire outside care. I had someone coming in 3-4 days a week to provide care to my mom. Ironically they were perfectly capable of providing all the care the facility said my mom "refused". They are not trained or staffed to properly care for residents.
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Go by almost every day. Talk to the desk. If problems are not solved, go to the top people.
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If you are having issues with food relating to his care I would look deeper into how he is treated in other aspects of his care. I had my mom in memory care for 2 years (2 separate facilities, same issues at both) and had a camera. There isn't enough space to write about the lack of care and neglect. Both facilities were the newer variety touting their "cutting edge memory care experience". Absolute joke everywhere in this industry. These "memory care" units have 2 workers and one rotating nurse if you are lucky to manage anywhere from 9-20 residents. In private facilities there are no regulations (contrary to popular belief) as to how many workers per resident there needs to be. I had numerous meetings and was always told the same thing. My mom required attention because she wandered and didn't have mobility issues. She was alone a lot and had falls that sometimes left her on the floor for hours before she would even be checked on. These facilities like everyone drugged up and immobile so they can roll them into the main room to keep them herded together. AARP is doing a lot of legal work on this issue (specifically antipsychotic overuse) in facilities to immobilize memory care residents. It is a widespread issue as is neglect of care needs. I recommend that everyone has a camera for a loved one with dementia because you are their ONLY advocate. They no longer have a voice.
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lealonnie1 Oct 2023
What you found in MC does not exist "everywhere in this industry." My mother's MC had a caregiver to resident ratio of 1:3 which meant all residents had a high quality of care.

MDs must write ALL prescriptions to "drug up" residents and "keep them immobile". Funny but I always had trouble getting moms M.D. to write her ANY prescriptions for zombie meds.

The issue our op is talking about relates to a meal served late and cold one time. Not a safety issue or a horror story so many people loooove to post about.

I assume you took your mother home to properly look after her after the abysmal ordeal w cameras in the MC ? I had my mom in one MC for 3 years and saw none of the horrors you mention, nor did I see them in the MC I worked at.
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I am really surprised at the number of responses blaming the father. Please educate yourselves about dementia/alzheimer's disease. Their brains are dying and the reason they are not independent is because they have a disease. This disease requires an advocate no matter what their "personality" is. It is a complicated disease that requires grace and patience. Please advocate for those whose voice is dying on a daily basis.
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MargaretMcKen Oct 2023
Jimlindac, the responses are based on OP’s original profile which said that Dad is a ‘classic narcissist’. This has now been changed to a ‘very difficult parent’, but OP has said in a reply that ‘he’s a narcissist but with pretty bad dementia”. Her original post says that ‘Dad often orders something other than what is served everyone else’.

Narcisistic behavior often involves making other people jump in order to prove how important they are themselves. There are many many posts on this site about how to get out of the habit of ‘jumping’. That’s why there’s not a lot of sympathy for Dad. The staff have almost certainly run out of sympathy. OP is still jumping.
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https://www.alz.org/media/documents/alzheimers-dementia-choosing-residential-care-ts.pdf

Some people hire a person to visit their loved ones every day (at a different time) to gather information about what goes on. If the person has an apartment with a kitchen, then a helper can be hired who likes to cook and spend a little time doing a joint activity (e.g., Visiting Angel or Care.com companion). A fancy place doesn't make up for loneliness or personal preferences. Most memory care patients aren't even aware of the frills, those places are really catering to families who are willing to foot the bill (i.e., those who appreciate the finer accommodations and can pay for them).
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@Kablooie,

I am sorry for the predicament your dad’s appetite has placed you both in.

This is a long shot, but maybe you could get management to agree that you can bring and have the kitchen store in their freezer a couple of delicious restaurant-purchased fish and chips meals that you have frozen in secure packaging…and in huge letters marked and dated that it is fish and chips meal for (your dad’s name)…so that no-one steals or dumps the couple of meals.

Then, when your dad vehemently refuses whatever dinner is on offer that day, the kitchen staff can pull out and heat your dad’s special meal?

Additionally, I have never tried them, but one can purchase boxes of eight individually wrapped cheeseburgers on buns*. Maybe you can buy a set and see if your dad will accept the flavor? You could then stock a couple at a time at the memory care place’s freezer if management agrees.

Here is taste test article about frozen hamburgers (& cheeseburgers) on buns: tinyurl:
https://tinyurl.com/4t7vzerj

I hope my ideas can help you, and your dad. At that advanced age, I hope he can enjoy most of his meals. Love, and good thoughts to you and your dad.

————-

*do search term online for “Pierre Signatures Angus Cheeseburger, 6.2 oz, 8 ct $19.89” or see this link - please note again I am not recommending this brand, I’ve never tested or tasted such a thing but maybe your dad will go for it. I am hungry right now, so this looks tasty to me: tinyurl:
https://tinyurl.com/4vecajst

Edited to add: this brand of frozen Angus cheeseburger gets 4.5 stars out of five, and has hundreds of reviews. Looks good: tinyurl:
https://tinyurl.com/d3juth8t
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These facilities charge big, big bucks and yet they think things like this are acceptable because they won’t be noticed by the residents or if they are just add it to the list of complaints because old people complain about everything anyway.

That said, they can’t be expected to make an individual meal for everyone so your dad needs to eat what is given or else move to a place where he likes the food better. When my mom was in a nursing home they said the residents were more than welcome to have Door Dash or whatever service they wanted deliver food - at their own expense of course. Is that an option?
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If you are spending $13,000 a month at this MC and your father is not getting proper meals or care, it’s time for you to move your father to another MC facility that will provide better care. This is an extremely sad situation where you are paying so much for this facility and they are giving your dad cold food. This is not right.
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In your Dad's state or county, there is an agency called LTCOP (Long Term Care Ombudsman Program). It is a federal program. In our state, LTCOP visits most of the licensed care homes and evaluates them. They also investigate and resolve problems or complaints with the home.

First, I would figure out what you want to do about what is going on. Then I would call LTCOP and get a case worker on your case.

Lack of staffing is no excuse for cold food and leaving a person by themself in an otherwise empty dining room.

On the other hand, food is a very important part of the social activity of a senior at one of these places. If your Dad doesn't like the food nearly all the time, I think you might want to look at another place for him to go that has food more to his liking. Does he choose his food the night or week before? If so, there is no excuse for the kitchen to have provided his unique meal on time.

I would suggest you talk to LTCOP.
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You are paying 13k ? And they can't fix him one meal on time. How big is the facility where he is in? This is outrageous! You have every right to complain. And then again I am not surprised how our love ones been neglected. When we are not there. Unacceptable!! Glad you went there and saw with your own eyes.
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Kablooie: While certainly annoying for you and your dad, perhaps the facility had trouble obtaining the fish and chips or the cheeseburger, e.g. 'sent someone to Arby's to get it.'
Once when my mother had broken her leg, her elderly, outspoken sister had raised a ruckus upon locating my mother's cold tray of supper.
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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.
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@Kablooie. I hope you can let us know if you have taken up your issues with the MC, and update us as to any response. It would so be appreciated.
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