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.
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.
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?
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?
what type of specialist would give a swallow evaluation?
thanks!
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.
The problem is that the speech therapist is trained to assess the swallow. If the swallow is not good food passes from mouth to trachea and bronchi instead of to the esophogus and into stomach. As a simple explanation. That food, going into the bronchial tubes is fed into the lung where it cause almost instant "Aspiration Pneumonia." Google "aspiration pneumonia" to give you a good overview.
I am sorry you are being treated with rudeness. You are desperate to save the person you love AND make life worth living for him. You should be treated with respect. The Therapist should be drawing you pictures and explaining the very real complications involved. And the assessments should continue now every few weeks.
You don't give us any details here. Who is this person you love. How old. What has happened to cause this problem.
I am so sorry for your grief. You will, I guess, have to get your information over the internet about swallowing and the dangers thereof. That shouldn't be the case. Remember to speak gently and calmly; don't let it get into the realm of a power struggle, because you are fighting for the rights and well being of the one you love, and you need to go at this as a team, not as enemies.
Love out to you and hope you will update us.
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