I spoke several times with the speech therapist about taking him off purée food since he was only supposed to be on for a few weeks. After a few months she finally put him on mechanical food after running more tests. He hates it and lost so much weight, he doesn’t eat as much. When I bring him home made food he eats with no problem like he’s starving to death. I told the therapist he wants to be on regular food and he doesn’t want your mechanical food. The therapist gets loud and refuses to take him off. What are our rights? I asked her repeatedly and this time she just came out and treated me like a child and rudely said NO.

Luisa,  the speech therapist is performing her medical duty, which is to prescribe the appropriate restricted diet for someone who apparently has dysphagia.   If she switched (or upgraded) to mechanical soft food, it suggests to me that he did show improvements, and was able to manage that level of food.

He might hate it, but you both need to understand that not only is she doing what's best for him, that she as a medical professional understands dysphagia and the results, and that if he does eat "regular food", he runs the risk of aspiration pneumonia, or choking on his food.    

In a higher level of dysphagia (pureed foods only), not only are aspiration and choking more dangerous, but cyanosis (face turns blue) can occur.   That's a  life threatening emergency.   If you ever see it, it'll be very difficult for you to view and to remain calm.     

You do have the right to refuse the proper treatment, as does your father, but you have to accept that you're ignoring proper, legitimate medical advice and putting your father at the risk of choking, aspirating, and being unable to breath.

If you've never seen how horrifying this is, prepare yourself.    It's frightening.    And you and your father would have to accept the blame and responsibility for this decision.

What I would suggest is that instead of blaming the speech therapist, that you (a)  read up on dysphagia so you understand it, then (b) apologize to the therapist and ask her to guide you in preparing as best you can food that is appropriate for his level of compromised ability to eat.   

She's probably not particularly pleasant with you b/c you don't understand the issues, and your position endangers your father's health and life.  

As one speech pathologist explained to us:   sure, you can eat what you want, and recognize that it may kill you.  And that's not an understatement.

If the POA your father executed is for legal and financial, it's not relevant to health care decisions.    You would need a medical POA or Living Will, or other document that gives you authority to make decisions on medical issues.  And you would be taking responsibility for NOT ensuring that he gets proper medical care.   
Helpful Answer (15)
Reply to GardenArtist

I’m not sure you are ready to hear the advice these wonderful folks are giving... you may be like my mother and have to learn the difficult way.. she kept bringing him food that he liked, and he would stuff it down like a ravenous wolf... i kept telling her to cut it up into very small bites but she would not. Finally a kind nurse sat us down to tell us WHY his food was mashed...WHY he was out in the dining area at meal time... and that he was a severe choking risk but could not understand (dementia) that it was not ok to take huge bites. They watch him like a hawk. I asked my mom if she would like to have him choking to death in front of her...she sort of gets it now...I convinced her to (and the nurse did too) to leave the food alone and we now take him big ice cream shakes that he can easily swallow and helps a bit with his weight. Listen to the professionals..and the wonderful folks on this board who have been through this type of thing...
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Reply to ML4444

I'm just reading some of the answers here after submitting mine, and I have to say I'm appalled at the amount of non-professionals that seem to want to encourage you to go against the therapists recommendations. If you and the therapist can't communicate (it's a two way street), then ask for another therapist, but seriously, you MUST be more concerned about the well-being of loved one rather than your hurt feelings. Get a dietician involved for more high-calorie food, and observe your loved one eating. Maybe just the fact that he can't pick up the food to eat it is causing weight loss. But to say you can sign something in order to bring him food that would clearly be dangerous to him is wrong.
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Reply to Maallis10
cetude Nov 26, 2019
I agree with that.
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Luisa doesn't list dementia as one of her father's health problems so IMO he should be allowed to voice his own preferences and take the associated risks. While "something terrible" might happen if a person with dysphagia is allowed to eat foods not on their approved plan I think that has to be balanced with allowing them the best quality of life choices you can. For many of us food is much more than fuel for our bodies and the prospect of giving up every possibility of enjoying even a morsel of our favourites for the rest of our lives is intolerable. It shouldn't have to be all or nothing and a little bit of flexibility can make the rest more bearable.
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Reply to cwillie

I clashed with the dietitian and kitchen administrator as well and I sympathize with how infuriating it can be to have your concerns ignored and be treated like an ignorant child.

My mom was on a pureed diet with honey thickened fluids and that was indeed appropriate most of the time, but she was also perfectly capable of eating a cracker with her soup or enjoying a potato chip or two, there were also days when she choked on her honey thickened beverages and I got push back when I asked for extra thickener. The core problem as I saw it is that once a care plan is put in place there is no room for flexibility - it is an unfortunate reality of institutional life that there is just not enough time or manpower to constantly adjust the meal plan multiple times a day for multiple residents, so erring on the side of caution is always the default. As long as I was there with my mom I was allowed (reluctantly) to over ride the diet plan as I saw fit, but I had to bow to that reality when I was not.

Do continue to bring your father treats he can enjoy while you supervise him but allow the facility to have it's way when you aren't able to, during mom's time in NH I watched many people struggle and fail to eat the normal diets that their families insisted on. And consider this - sometimes it's not so much the texture but the whole menu that is the major stumbling block, and there's no getting around that.

I'm popping back to add a comment about the weight loss - what are they doing to address that? Have they included high calorie supplements in his diet plan?
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Reply to cwillie

My mother had a swallow evaluation about a month age I was able to stay with her for the test. I was able to see on the screen how she was aspirating some of different textures of food into her lungs.She has a swallowing delay and is now on pureed foods and honey consistency liquids. At first she did not like the new diet, but with much effort, and making meals she likes, she is eating better and actually is enjoying most meals I prepare. It is in the best interest to follow the professional advice from the speech therapist. You do not want him to aspirate or choke, and this will definitely happen if you do not follow the advice. I totally understand your situation, but I am in complete agreement with the therapist. He was advanced from pureed to mechanical food, I would be happy with that outcome right now. Do what is best for him! The best to you both.
Helpful Answer (8)
Reply to earlybird
Dollie1974 Nov 25, 2019
Hi early bird,

what type of specialist would give a swallow evaluation?

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My father didn't like pureed food either. I cooked food at home to a mush state but didn't actually puree it and Dad would eat it. Dad always liked a lot of soft foods like mashed potatoes, soups, ice cream, applesauce, puddings, cornbread soaked in milk. I cooked meats in a savory broth for hours until it was so tender it separated easily, the cut in into 1/4" bites and kept it very moist or used in soups. Extra milk in the mashed potatoes and puddings, melt the ice cream and stir it up until it was soft serve consistency, etc. Chicken noodle soup and cream of potato and tomato soups worked well too. I was very lucky the MC (which had a 24/7 kitchen access policy) was willing to heat and serve the food I prepared at home. My brother was able to be there for most meals to sit with Dad and help if needed and the staff was able to cover the occasional meal when a family member couldn't get there.

You (as POA) have a legal right to make a choice against medical advice and refuse treatment, including pureed foods; however, please read GardenArtist's post carefully and make sure you understand all the risks. My father had vascular dementia and was "living on borrowed time" according to his heart doctor when I made the decision to embrace a soft diet instead of the recommended pureed foods. I choose Dad's comfort over the risks of an earlier death when death was coming in weeks or months. I even quartered soft center chocolates for Dad. Are you prepared to see your father choke and die or develop pneumonia and die as his lungs fill with fluid and he cannot breathe?
Helpful Answer (7)
Reply to TNtechie

Most facilities have a waiver that can be signed, essentially saying that you understand the risks and will not hold the facility responsible for a negative outcome (e.g. - choking). I would ask the DON about it.
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Reply to katydid1

A therapist can't say no and can't demand anything. Neither can a nurse. Every resident (or their responsible party if they are not competent) has the right to make their own decisions - even bad decisions. They can eat what they want even if they have been educated about the risks of aspirating. Residents have the right to refuse their medications even if they are life saving or sustaining. They have the right to walk even if they are at high risk to fall and they have the right to go home even if everyone else thinks it is unsafe.
Helpful Answer (7)
Reply to heathermp

Here is my take as an RN from both sides.

Facility/Speech therapist: Speech therapy does the evaluations and gives diet based on how the client performs. If client has swallowing problems - and it seems your LO does - then speech tests to see which diet is safest for client. She should be asked to perform another swallowing evaluation - and you NEED to be present. She would prefer if you would bring foods recommended for your LO swallowing performance. If you insist on bringing foods your LO has "failed" to swallow well, you set LO for aspiration pneumonia or dying from asphyxiation. She has an obligation to make sure her clients suffer no harm.

Family: Your LO prefers food from home, naturally. Family want to provide comfort and "treats" for their LO when they come to visit. No facility can provide the quantity for foods needs and the flavor/texture profiles preferred - so families "help out".

My take: Ask for another swallowing evaluation and be there. Work together with the speech therapist to talk about what foods you can safely bring for your LO.
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Reply to Taarna

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