He takes a long time to eat, and throws half his food away. Do I have to go the liquid route/baby food, or how wrong would it be just let nature take its course
My husband has been drinking thickened nutrition drinks for 7 years. He graduated to drinking thickened drinks after 2 years of tube feeding, when he was finally able to suck from a straw. I use the Nestle Resource Thicken Up Clear, or Hormel Health Labs Thick & Easy Clear to get a suitable consistency. Hormel health labs also offers pureed or minced meats, vegetables, desserts,....
I make a batch of drinks every day, which he prefers, and provides all his daily nutrition needs. Protein, calories, vitamins, etc.
This was after consulting with a nutritionist. And getting the doctor's approval.
As a treat, I give him applesauce, pudding, a banana mashed with a fork, and some soft muffins. He doesn't have teeth to chew foods, so anything he can safely "gum" and only in small bites. Really, he doesn't eat much when I offer food. He really prefers the drinks.
I use 4 Boost, or similar, and add a couple cups of Milk, or Almond Milk and 2 cups of water, and for flavor variety, I add some Strawberry juice, Orange Juice, or Chocolate. Add thickener while mixing in a blender.
Elisny has some great soft food suggestions as well. But if you can, you should really consult with his doctor, and a speech pathologist who will do a swallowing test.
What do you mean, "do you have to go the liquid route..."? What do you mean, "let nature takes its course"?
People should always be offered food, food that they can consume. And they should never be forced to eat.
If he is struggling with swallowing, it would be best to consult with an experienced speech pathologist. IF that is not possible, then offering soft foods would be a start (applesauce, cottage cheese, oatmeal, hummus, mashed potatoes, mashed sweet potatoes, refried beans, egg salad, tuna salad. etc.) and smaller bites. As for liquids, there are cups designed just to deliver a teaspoon or two at a time. (I put a link below.) That can be better than thickened liquids, as thin liquids are less harmful if they go down the "wrong pipe."
Ultimately, it is best to pay attention, and see what works - and uncover what he enjoys and tolerates.
Eventually, he will stop eating altogether - as that is what happens to virtually everyone on the slow road out of here. At some point in the transition we no longer need or want or benefit from food.
Ask his MD. This is a medical issue / need. My friend has to stop drinking pure water and instead drink thickened water. Every situation is a little or a lot different so it is important to ask his medical provider.
Atlasshrugged, My prayers and thoughts go out to you as you care for your husband. I thought I'd share my experience in case it helps. I currently care for my dad who has dysphagia caused by two issues - cancer treatment yrs ago & dementia. He didn't want speech therapy evaluation yrs ago, couldn't understand purpose despite repeated explanations that it was to help identify swallowing issues. As the dysphagia progressed because of the dementia, I did as much research and reading on the internet and upon discussion w/his Dr, decided not to pursue speech evaluation, not to put him through undue stress, and the doctor said I was already doing what they would do anyway - soft foods, pureed, etc. In caring for him, I've learned to tell when certain foods are harder for him to eat, when to thicken liquids and to what thickness works best for him, mince and puree meats, vegetables, and more. I've also learned at times when he doesn't want to eat that it is usually because his copd is acting up and he's coughing more, or just no longer likes or wants that particular food. His tastes have changed. He just doesn't want certain things any more. If he starts coughing more while eating, I make adjustments - maybe needs more moist, or more thick, or pureed better. Sometimes I just put the food away, give him a break from it and bring it to him later. There were also situations where something was affecting his appetite. For example, he was on a med short term that affected his appetite.
So with your husband, depending on his situation, maybe just try some more pureed foods. Could his appetite be good and he is just having trouble eating? You can start with things he normally likes. For example, if I make chicken, I will put some in a food processor and chop it up fine, like minced, then add something to it like gravy or thicken sauce or thickened broth, to make it moist to the thickness, like honey thick, that is safe and easy for him to swallow. He loves it. Talk to and work with his doctor. See if the doctor feels a hospice evaluation may be right or not. And read and learn all you can about dysphagia diet/foods here on the forum and the internet, youtube, etc. Hang in there and take care of youself. Best wishes.
From "normal" foods to minced to pureed is the typical way things go. Choking on liquids will indicate that liquids need to be thickened. That can go from "nectar" thick to "pudding" thick. If he begins to not want to eat or drink those are indictors that his body is shutting down. He will not feel hunger or thirst as you or I do. I have a few suggestions for you... If he is not on Hospice PLEASE contact a Hospice. The Hospice team will help you and educate you to what is going on. PLEASE do NOT consider a feeding tube.
Has he ever expressed his wishes for End of Life?
If you have a bit of time please search for Hospice Nurse Julie on You Tube or Facebook. She has some very good videos describing End of Life and the process that the body goes through.
Does he have a Living Will etc written up? Did you have past discussions about what he would want to do as his health declines? Either way - it would be a good idea to discuss the situation with his doctor and see what the doctors says
Puree Meals Eventually, the patient will be unable to chew and swallow regular foods. At that point, there will be no choice but to puree their meals. · Thoroughly cook beans, peas, and other solids to make chewing and swallowing easy and to postpone having to switch completely to pureed meals. · Use a home blender or food processor to puree food to a consistency similar to yogurt. Pureed food does not require any chewing, is easier to swallow, and is less likely to end up in the patient’s windpipe or lungs. Thicken Liquids Swallowing problems impair the patient’s ability to drink fluids also. This time, the difficulty is due to the liquids being too thin, which makes it easy for the liquid to find its way into the patient’s windpipe and lungs. · Use food and beverage thickeners to thicken fluids, including drinking water. You can use commercial thickeners, or make your own using cornstarch. · When preparing liquids, add just enough thickener to get the liquid to the needed consistency (see below). Add a little mint or sugar to make it more palatable and reduce the taste of starch. · Initially, liquids need to be thickened just a little, similar to the consistency of syrup in canned fruits. But, over time, more thickening will become necessary. Eventually, the patient may need liquids at a consistency similar to that of honey or yogurt to be able to swallow safely.
When the Patient Refuses to Eat My husband can no longer swallow his food and meds and chokes all the time. His doctor recommended that we surgically install a subcutaneous feeding tube in his stomach and feed him through that. But my son disagrees. I don’t know what to do. In the late stage of dementia, even a small amount of food or liquid may lead to severe coughing or suffocation. Eventually, the patient may become unable to swallow any food or liquids, and may refuse to eat or drink altogether. At this stage, tube feeding through the nose or through a subcutaneous tube directly into the stomach may be the only remaining options. Whether to prolong the patient’s life with such methods is one of the most difficult decisions confronting the family in the late stage. The one overriding factor should remain, as always, the best interests of the patient. If the patient’s wishes are known, these decisions will be a lot easier and less contentious. It is best to discuss end-of-life options early on, when the patient is still able to consider their options and articulate their wishes. They may request that all means be used to keep them alive, or may decide that they do not wish their life prolonged through such methods, or when no quality of life remains. Eventually, there will come a time when the patient’s organs begin to shut down as end-of-life draws near. This process may take days or weeks, during which the patient’s food and fluid intake tapers off. Although it may be tempting to try to delay the inevitable by resorting to intravenous means to deliver nutrients to the patient’s body, one should not lose sight of the fact that such interventions at this stage are quite stressful to the body as it undergoes its natural process of shutdown at the end of life.
I would not do a feeding tube. My aunt had one.It was agonizing for the family. After a few month they were advised by the doctor to take it out, and she died. I know my husband would never want a feeding tube just to keep alive, when everything else is gone.
You're asking if homicide by neglect is wrong?! Yes. Yes, it is. Of course, you should feed him pureed food! Next he will require IV nutrients (unless he signed a DNR/Living Will stating otherwise). May God bless your husband. And, may God help you!
My mother died at age 64 of complications related to Progressive Supranuclear Palsy. She and my father had been married to each other from the age of 16. Watching my mother refuse to eat was one of the most traumatic events of my dad's life, but that was her wish--no feeding tube. I say this because when responding to someone struggling with a loved one's care, it is better to keep your comments productive. You can get your message across just as clearly without belittling someone who is already in pain.
As has already been said here... ask for a swallowing evaluation before making big changes.
MacinCt said: "It sounds like it is hospice time."
Swallowing issues do not necessarily mean hospice time!
My husband had a PEG tube inserted in 2016 when hospitalized for sepsis aspiration pneumonia . We had been advised in 2014 to consider a feeding tube but had also been told he could aspirate on his saliva, so we decided to wait until IF or WHEN he got pneumonia. Part of the time he has only needed it for medication and one tube fed meal for nutritional support beyond what he enjoyed eating.
My husband has dementia in about the stage before last... He is still eating most days but other days doesn't want to eat much. I just go with the flow..
My mother who did not have dementia died about 15 years ago - she had had a stroke and a heart attack previously. She was permanently in a wheelchair for many years. She fell and broke her hip so was hospitalized. She chose that as her opportunity to escape the miserable life she felt she had. She just refused food and medicine knocking it out of the nurse's hand. My father asked her if she was choosing this ...and she nodded yes she was. Why prolong a life that has lost all of its quality. Move your LO into a hospice facility if you can when he gets to that stage. It sounds like he is eating when he feels like it at the moment. My husband dropped 2 waist sizes initially but has now evened out and has stopped losing weight.
Get your doctor to give him a referral to a speech therapist. This therapist can evaluate his ability to swallow and recommend the appropriate thickness for foods and liquids based on his evaluation. They can also recommend additives if he needs this liquids (water, coffee, juices...) thickened so he won't swallow them wrong. If he fails the swallowing evaluation, you will need your doctor to make a surgical referral. A tube can be easily inserted via surgery into his stomach through the wall of his abdomen for tube feedings. It is not difficult to learn how to give tube feedings this way. You might need a referral to a registered dietician to evaluate what type of liquid nutrition he needs and how much daily.
Get that swallow study done. Make sure his doctor is aware of reduced caloric intake. It sounds like it is hospice time. My concern is that food needs to be offered but not forced. However if you stop feeding him without the doctors knowledge and he passes with a major weight loss you don't want to be investigated for neglect.
Get your husband a hospice evaluation if he's already had a swallow study done. Starvation can be a painful way to pass, and hospice will make sure he's kept comfortable.
For me the ethical thing was to provide appropriate food that my mom was able to eat, she could then make the choice to eat or not (she could have turned her head, not opened her mouth, spat out the food or just refused to swallow). And a modified diet is not reduced to simply providing liquid or baby food, as I've mentioned hundreds of times on this forum there are is almost no food that can't be modified in a way that is both attractive and flavourful.
Yes you need to puree' all of his food and thicken his drinks with the product Thick It, so he can eat and drink easier. When the time comes that your husband is dying, he will let you know that he doesn't want any food or drink. But until then it's your duty to make sure that he's getting the proper nutrition in whatever form that looks like. Doing anything other than that would be you contributing to his early death. Could you really live with yourself if you were to do that?
I really disagree with this. It is not anyone's 'duty' to force food (in any form) into someone, particularly someone who is 85 and in the middle stages of dementia. He takes as much food as he wants, and then stops - his decision.
To me, when the will/wish to eat is gone, the ability to swallow safely is gone, it is the bodies way. I would not interfer, myself.
If you are POA for this person, then you will know his or her wishes when he or she was able to express them. I so fear having tubes for feeding forced upon me that my advance directive is written so as to explicitly forbid feeding by tube either IV for NG/PEG. I also refuse dialysis and some few other things. I do not wish to live in that circumstance.
Has he had a swallow study, called a video fluoroscopy, to watch exactly what’s happening when he swallows? This is the guide to let caregivers know what’s appropriate in feeding. My mother was initially on a puréed diet, supplemented by a feeding tube, post stroke. After a year or so, this test indicated she was aspirating the puréed food into her lungs and all oral feeding was discontinued. The test gives the answers
I use the Nestle Resource Thicken Up Clear, or Hormel Health Labs Thick & Easy Clear to get a suitable consistency.
Hormel health labs also offers pureed or minced meats, vegetables, desserts,....
I make a batch of drinks every day, which he prefers, and provides all his daily nutrition needs. Protein, calories, vitamins, etc.
This was after consulting with a nutritionist. And getting the doctor's approval.
As a treat, I give him applesauce, pudding, a banana mashed with a fork, and some soft muffins. He doesn't have teeth to chew foods, so anything he can safely "gum" and only in small bites. Really, he doesn't eat much when I offer food. He really prefers the drinks.
I use 4 Boost, or similar, and add a couple cups of Milk, or Almond Milk and 2 cups of water, and for flavor variety, I add some Strawberry juice, Orange Juice, or Chocolate. Add thickener while mixing in a blender.
Elisny has some great soft food suggestions as well.
But if you can, you should really consult with his doctor, and a speech pathologist who will do a swallowing test.
What do you mean, "let nature takes its course"?
People should always be offered food, food that they can consume. And they should never be forced to eat.
If he is struggling with swallowing, it would be best to consult with an experienced speech pathologist. IF that is not possible, then offering soft foods would be a start (applesauce, cottage cheese, oatmeal, hummus, mashed potatoes, mashed sweet potatoes, refried beans, egg salad, tuna salad. etc.) and smaller bites. As for liquids, there are cups designed just to deliver a teaspoon or two at a time. (I put a link below.) That can be better than thickened liquids, as thin liquids are less harmful if they go down the "wrong pipe."
Ultimately, it is best to pay attention, and see what works - and uncover what he enjoys and tolerates.
Eventually, he will stop eating altogether - as that is what happens to virtually everyone on the slow road out of here. At some point in the transition we no longer need or want or benefit from food.
https://www.amazon.com/PROVALE-Regulating-Drinking-Cup-10cc/dp/B07BHXPGGP/ref=sr_1_6?keywords=dysphagia%2Bcups&qid=1708139083&sr=8-6&th=1
This is a medical issue / need.
My friend has to stop drinking pure water and instead drink thickened water.
Every situation is a little or a lot different so it is important to ask his medical provider.
Gena / Touch Matter
My prayers and thoughts go out to you as you care for your husband. I thought I'd share my experience in case it helps. I currently care for my dad who has dysphagia caused by two issues - cancer treatment yrs ago & dementia. He didn't want speech therapy evaluation yrs ago, couldn't understand purpose despite repeated explanations that it was to help identify swallowing issues. As the dysphagia progressed because of the dementia, I did as much research and reading on the internet and upon discussion w/his Dr, decided not to pursue speech evaluation, not to put him through undue stress, and the doctor said I was already doing what they would do anyway - soft foods, pureed, etc. In caring for him, I've learned to tell when certain foods are harder for him to eat, when to thicken liquids and to what thickness works best for him, mince and puree meats, vegetables, and more. I've also learned at times when he doesn't want to eat that it is usually because his copd is acting up and he's coughing more, or just no longer likes or wants that particular food. His tastes have changed. He just doesn't want certain things any more.
If he starts coughing more while eating, I make adjustments - maybe needs more moist, or more thick, or pureed better. Sometimes I just put the food away, give him a break from it and bring it to him later.
There were also situations where something was affecting his appetite. For example, he was on a med short term that affected his appetite.
So with your husband, depending on his situation, maybe just try some more pureed foods. Could his appetite be good and he is just having trouble eating? You can start with things he normally likes. For example, if I make chicken, I will put some in a food processor and chop it up fine, like minced, then add something to it like gravy or thicken sauce or thickened broth, to make it moist to the thickness, like honey thick, that is safe and easy for him to swallow. He
loves it.
Talk to and work with his doctor. See if the doctor feels a hospice evaluation may be right or not. And read and learn all you can about dysphagia diet/foods here on the forum and the internet, youtube, etc.
Hang in there and take care of youself. Best wishes.
Choking on liquids will indicate that liquids need to be thickened.
That can go from "nectar" thick to "pudding" thick.
If he begins to not want to eat or drink those are indictors that his body is shutting down.
He will not feel hunger or thirst as you or I do.
I have a few suggestions for you...
If he is not on Hospice PLEASE contact a Hospice. The Hospice team will help you and educate you to what is going on.
PLEASE do NOT consider a feeding tube.
Has he ever expressed his wishes for End of Life?
If you have a bit of time please search for Hospice Nurse Julie on You Tube or Facebook. She has some very good videos describing End of Life and the process that the body goes through.
Either way - it would be a good idea to discuss the situation with his doctor and see what the doctors says
Puree Meals
Eventually, the patient will be unable to chew and swallow regular foods. At that point, there will be no choice but to puree their meals.
· Thoroughly cook beans, peas, and other solids to make chewing and swallowing easy and to postpone having to switch completely to pureed meals.
· Use a home blender or food processor to puree food to a consistency similar to yogurt. Pureed food does not require any chewing, is easier to swallow, and is less likely to end up in the patient’s windpipe or lungs.
Thicken Liquids
Swallowing problems impair the patient’s ability to drink fluids also. This time, the difficulty is due to the liquids being too thin, which makes it easy for the liquid to find its way into the patient’s windpipe and lungs.
· Use food and beverage thickeners to thicken fluids, including drinking water. You can use commercial thickeners, or make your own using cornstarch.
· When preparing liquids, add just enough thickener to get the liquid to the needed consistency (see below). Add a little mint or sugar to make it more palatable and reduce the taste of starch.
· Initially, liquids need to be thickened just a little, similar to the consistency of syrup in canned fruits. But, over time, more thickening will become necessary. Eventually, the patient may need liquids at a consistency similar to that of honey or yogurt to be able to swallow safely.
When the Patient Refuses to Eat
My husband can no longer swallow his food and meds and chokes all the time. His doctor recommended that we surgically install a subcutaneous feeding tube in his stomach and feed him through that. But my son disagrees. I don’t know what to do.
In the late stage of dementia, even a small amount of food or liquid may lead to severe coughing or suffocation. Eventually, the patient may become unable to swallow any food or liquids, and may refuse to eat or drink altogether.
At this stage, tube feeding through the nose or through a subcutaneous tube directly into the stomach may be the only remaining options. Whether to prolong the patient’s life with such methods is one of the most difficult decisions confronting the family in the late stage. The one overriding factor should remain, as always, the best interests of the patient.
If the patient’s wishes are known, these decisions will be a lot easier and less contentious. It is best to discuss end-of-life options early on, when the patient is still able to consider their options and articulate their wishes. They may request that all means be used to keep them alive, or may decide that they do not wish their life prolonged through such methods, or when no quality of life remains.
Eventually, there will come a time when the patient’s organs begin to shut down as end-of-life draws near. This process may take days or weeks, during which the patient’s food and fluid intake tapers off. Although it may be tempting to try to delay the inevitable by resorting to intravenous means to deliver nutrients to the patient’s body, one should not lose sight of the fact that such interventions at this stage are quite stressful to the body as it undergoes its natural process of shutdown at the end of life.
MacinCt said: "It sounds like it is hospice time."
Swallowing issues do not necessarily mean hospice time!
My husband had a PEG tube inserted in 2016 when hospitalized for sepsis aspiration pneumonia . We had been advised in 2014 to consider a feeding tube but had also been told he could aspirate on his saliva, so we decided to wait until IF or WHEN he got pneumonia. Part of the time he has only needed it for medication and one tube fed meal for nutritional support beyond what he enjoyed eating.
Best wishes in moving forward.
My mother who did not have dementia died about 15 years ago - she had had a stroke and a heart attack previously. She was permanently in a wheelchair for many years. She fell and broke her hip so was hospitalized. She chose that as her opportunity to escape the miserable life she felt she had. She just refused food and medicine knocking it out of the nurse's hand. My father asked her if she was choosing this ...and she nodded yes she was. Why prolong a life that has lost all of its quality.
Move your LO into a hospice facility if you can when he gets to that stage. It sounds like he is eating when he feels like it at the moment. My husband dropped 2 waist sizes initially but has now evened out and has stopped losing weight.
And a modified diet is not reduced to simply providing liquid or baby food, as I've mentioned hundreds of times on this forum there are is almost no food that can't be modified in a way that is both attractive and flavourful.
https://www.google.ca/imgres?imgurl=https%3A%2F%2Fdrb960u7vv58y.cloudfront.net%2Fcrop%2F208932%2F1200%2F627%2Fimage.jpg&tbnid=Dm_SUFt3BK-C5M&vet=12ahUKEwimv8L0kaaEAxW8M2IAHWYVDlUQMygMegUIARCPAQ..i&imgrefurl=https%3A%2F%2Fblog.thealzheimerssite.greatergood.com%2Fpuree-mold-steps%2F&docid=h7fPnBrSLJF_aM&w=1200&h=627&q=better%20pureed%20food&ved=2ahUKEwimv8L0kaaEAxW8M2IAHWYVDlUQMygMegUIARCPAQ
When the time comes that your husband is dying, he will let you know that he doesn't want any food or drink.
But until then it's your duty to make sure that he's getting the proper nutrition in whatever form that looks like. Doing anything other than that would be you contributing to his early death.
Could you really live with yourself if you were to do that?
If you are POA for this person, then you will know his or her wishes when he or she was able to express them. I so fear having tubes for feeding forced upon me that my advance directive is written so as to explicitly forbid feeding by tube either IV for NG/PEG. I also refuse dialysis and some few other things. I do not wish to live in that circumstance.