DW is starting to have trouble swallowing. I haven't noticed any pocketing but will start watching for that.
I am thinking of starting her on some softer foods like yogurt or cream of wheat. I have noticed that she seems to have a bigger than normal amount of food in her mouth when she gags. I suspect she is not swallowing before she puts the next bite into her mouth. Will watch that as well.
The part that bothers me the most is getting her to swallow her meds. She holds pills and liquid in her mouth for a long period of time like she is refusing to swallow.
I have read several post here about this and will mention it to the Dr. next visit or sooner if need be.
I am curious about pulverizing her pills and mixing them with her liquid. I have done this with ice cream and it seemed to work. What about doing it with other foods. would the heat of foods reduce the effect of the meds?
What other soft foods could I mix them with. I am considering getting her some ensure or a similar product to help with her nutritional needs. She seems to handle most foods pretty well, it is just once in a while she gags and has spit out a large amount of food but will still cough or gag with a seemingly empty mouth. Today it was with pancakes. I think I will take them off of the list of foods to let her eat.
Do any of you think more fish would help? Maybe steamed fish as opposed to fried. What about mixing the meds with a chip dip? This might limit the amount of food going into her mouth also.
Has anyone tried using cold foods to help with the gagging? I did notice that instead of drinking to clear her throat she ate a spoon full of ice today and it seemed to help her recover.
Also today during her bath she tried to spit and it was very thick and just ran down and hung on her chin. Like mucus.
I may be over reacting but I worry a lot and I don't really care if I become a pain in the side to the medical community.
Can ensure be consumed with a straw?
The only stupid question is the one that is not ask in my learning experience.
At mom's NH, they crushed her meds and put them in either pudding or applesauce. Not sure about the effect of heat; your pharmacist would be a good resource on that.
I doubt she's "refusing" to swallow. The brain stops sending the swallow signal, is more like what is happening. (((((((hugs))))))))
And sure the ensure can be given with a straw if that works better!
1. Do get a swallow study done as suggested. It's a videoscopic test revealing (like an x-ray) whether or not frank (direct) aspiration is occurring, i.e., if fluids and foods are going directly into the lungs, which can cause aspiration pneumonia.
My father had that more than a few times, but it was only the last time that his health had declined to the point that he could no longer overcome it. So anticipate that aspiration pneumonia just may become a part of her life.
2. If your have a pulmonologist on your team of care for your wife, ask that doctor to script for a study, as early as possible. I'd choose a specialist over a PCP or GP for this kind of issue.
3. Results of the study will determine the level of swallowing difficulty, or dysphagia, and dictate the level of alteration of food.
4. Mechanical soft, nectar thick and honey thick are the only levels with which I'm experienced. Each has a different associated list of recommended and definitely not to be given foods. You can tailor her diet from there.
E.g., oatmeal or cream of wheat might be tolerable, but the oatmeal needs to be the powdery level, not steel cut. There are fine distinctions in levels of food that would be allowed.
That's why a speech pathologist needs to perform the swallow study and interpret it.
5. Foods: yogurt is good as long as it doesn't have fruit that's not pureed. The pro-biotic properties are helpful generally as well. But it's fairly easy to eat, even with dysphagia.
6. Pocketing, or pouching will occur, but the individual is not aware of it. Our speech pathologist recommended periodic "swish and spit" procedures. Dad kept a S & S cup close by and could relieve his mouth of extra food that couldn't be swallowed by spitting it out. That can also facilitate fresh food being taken into the mouth.
Coughing and choking is a reliable sign that there might be too much food in the mouth.
Slowing down the eating process and absorbing one spoonful at a time will become critical.
7. Meds: I asked Dad's doctors if the one med he took could be crushed; I don't recall if it could, but it was D'C'ed for other reasons. This is a question for her specialist doctors, i.e., whether meds can be crushed. If I recall correctly, time released meds couldn't be crushed.
I would stick with room temp carrier foods for the meds; don't take a chance with heat altering the delivery or potency of the meds.
Applesauce was recommended as the carrier for crushed meds. Puddings were always on the menu, and I do have a vague recollection of their also being suitable as a carrier food.
I'm unfamiliar with blending crushed meds and chip dips, but if the dip is thick enough and not watery, that seems like a possibility.
8. And a caution on ice cream: at some dysphagia levels, ice cream is not an accepted food. What I did was to put a few spoonfuls at a time in a bowl, then add to that if more was desired. That keeps the ice cream in a non-liquid state, as melted ice cream would fall into the category of fluids that aren't thickened.
9. Ensure or Boost: Ensure Plus was recommended for my father. I don't recall but believe the "Plus" version has more needed nutrients. And it did need to be thickened. Straws were not allowed; our pathologist told us that it's too easy to suck in too much fluid w/o swallowing it first. It's another way for excess fluid to accumulate in the mouth.
Milk shakes fall in the same category; they can only be drunk if thickened, or if they're already so thick that they aren't melted, which obviously is a problem with ice cream.
Out of space; continued in the next post.
10. Fish is good b/c of its nutrients, and its effect on emotions. I eat fish when I need to calm down. Avoid the fried; the little crumbs can cause coughing. I would try baked or steamed as you suggest (probably the best choice); I used to add orange juice as fluid, so the fish wouldn't dry out and would have a touch of Vitamin C.
I'm not sure about tuna from cans; it's stringy, and would have to be pureed a lot - I found that stringy foods (such as roast beef) took much more time to puree. OTOH, the rehab facilities pureed them as well as ham. The food definitely wasn't appetizing, but for Dad it was edible.
11. Cold foods and gagging: I don't have any input on this other than juices that Dad drank. The pathologist did point out that drinks should be altered with softer food, but in sips and not gulps, to help flush food down and out of the mouth pockets.
Actually, Dad had no problem with ice cream, and it was refreshing, so cold foods might be a good idea, as long as they're thickened (like yogurt is).
But don't let her keep the ice in her mouth long enough to become unthickened liquid.
12, Thick mucous: During his last months, Dad had a scopalomine patch applied behind his ear to allegedly thin the secretions. I couldn't determine if it actually did any good, and it can have side effects.
Suctioning was used as well; that was more effective. The rehab/PC/hospice facility provided a bedside machine for suctioning. The doctor who orders the swallow study might be able to order a suctioning machine, if appropriate, through a DME supplier.
13. Straws. No, not for anything. That's what we were advised.
Caveat: my father's dysphagia progressed from a manageable level to more complex; that's when the restrictions became so much more limited, i.e., no straws.
14. There are charts for different levels of dysphagia; your speech pathologist who interprets the swallow study could probably give you copies. If not post back; I'll dig out my dysphagia material and see which institute published them.
15. Lastly, don't worry about being a pest. It's not the number of questions you ask, it's the approach, the research you do, your concern for your wife and the interaction between you and the staff that are important. You're obviously very intelligent, do your research, and have a good grasp of what's happening. Med pros like that - they can interact with you on a higher, more specific level.
In my experience, if you're educated and knowledgeable on the subject you're more likely to be treated professionally than if you don't know anything and take a hostile approach, like some of these people who have very negative preconceived notions about interacting with professionals. and approach in a defensive manner.
16. Lastly, thickening in general. The swallow study will help the speech pathologist determine whether liquids need to be nectar or honey thick. Or your wife may just need mechanically soft foods.
Thik-it and other brands are fairly easy to find. I was surprised that the major chain store carried them. Pharmacies do as well.
17. And, finally, I suspect that you'll do all the food prep yourself. You'll want a processor that has speeds for blending and pureeing. You'll also find that some foods require additional liquids to reach a pureed stage. I used different gravies, OJ and cider.
I'm P'M'ing you with the brand of processor I used after doing research on a variety of them.
Out of space again.
18. I haven't addressed vegetables or fruits; they require more fluids to process, but corn and peas were harder b/c of their "soft skin". Cooked peaches, pears, and other soft skinless fruits were easy to puree.
19. While I don't like to criticize someone else's suggestions, I think the idea of "shooting" pills into the throat of anyone, let alone someone with dysphagia, is an unsafe suggestion, and is asking for trouble and a trip to the ER.
If your wife does have compromised swallowing ability, food and liquids need to be prepared in an easy to swallow form. Whole pills do not fit into that category. Nothing should be poured or "shot" into anyone's throat unless given by specific medical advice.
And, first, swallowing muscles need to be used to maintain what strength they have. Second, a pill "shot" into the throat could get stuck (as some pills did with my father) and cause emergency level choking.
20. And another "lastly"...There are exercises that can be done to strengthen the swallowing muscles, as did swallowing exercises (the "Shaker" exercises) the first time around. Dad was given easier exercises years later when dysphagia again became an issue.
You can ask the pathologist who performs the study about these.
If she gets real bad I may be able to buy one of the syringes that is designed for children if none is available for adults or use the one for injecting turkeys, without the needle.
More fish on the shopping list. Search for some simple fish recipes. Cut some foods into smaller pieces. Less fried foods, more boiled or steamed. Crushing pills and mix with something.
Look into jelly and chip dip. And chips. hmmmmm, would salsa be acceptable?
She likes chips. I regulate them because of a possible gout attack.
Okay, we will be hitting the store today. Need a new skillet anyway and a mini muffin pan for cornbread.
I really do appreciate the responses and suggestions. All will be looked in to and applied where they fit.
If they order a swallow test, make a list of items that you know are an issue and provide that to the test department well before the test. Make another list of the foods you are asking about (maybe send that as well.) They probably can rule in/out many foods you list based on the test results, but it does not hurt to ask! As you noted, there are no stupid questions. They may provide you with recommendations after the test, but for the test it is often similar food items that seem to cause a problem they will use for the test.
"Shooting" pills is probably not a good idea. Even if it only gets to the back of the throat, it could get inhaled or stuck there, causing coughing or worse. I would recommend against that. I sometimes have to do that for my cats and absolutely HATE doing it that way, but there is no reasoning with them! A few times it did not even work - I got the pill back... In your case, if she inhaled when you were "shooting" it, that would be very bad!
I'd be careful if/when mixing crushed pills with any food item - limit the amount of food to ensure it all gets eaten, otherwise she won't get the full dose. I have also done this with my cats - I used a very tiny bit of food, enough that it will get eaten when they are hungry (no dry foods for my guys, so mealtimes they are generally hungry for something, I choose one that they like a lot and use just enough to cover any "taste") then they will get more after cleaning the bowl to finish the meal.
I would also question two items you listed (but I do not know all the details about what your wife can chew/swallow) - chips and salsa. Chips because they break into smaller pieces when bitten, but not necessarily small enough and if swallowed quickly, they are hard pointy objects that could get stuck. Salsa because there are chunks of ingredients - can she handle some softer chunks of food? Would those bits potentially get stuck? I do have some issues with food/pills getting caught at the epiglottis level, sometimes requiring "hacking" it up again... In my case it is not all the time and generally is not a problem limiting what I eat/take, but I do have to be aware (and gross people out if in public!) Even small soft bits can get "stuck". They don't have to be large bits of food or hard pills, so yes beware and keep mouthfuls limited (if too much swallowed at once, such as potatoes, it has gotten stuck in my throat too!)
Use common sense when it comes to preparing meals, pick things she likes and foods with a soft smooth texture that seem normal to eat - mashed potatoes, polenta, creamed soups, stews and chilies, tender casseroles, puddings, custards...
I crush her meds with a pill crasher ( the doctor said it was ok) and put it in a small amount of ice cream or vanilla pudding to make sure she gets her medicine.
I add fruit to the vegetables and vegetables to her oatmeal or cream of wheat , or fruit to her cereal than add seasoning after I put it in the nutribullet
she will only eat if She likes the food
I had to make my own recipes and changed her meal times to get my mom to eat
I had to thicken everything he drank for 3 years. You can google Dysphagia for an appropriate diet. DH wanted soft foods so that is what I fed him.
No straws! I don't remember why, but no straws. I had to thicken his Ensure Plus too.
You can also research dysphagia diets and see recommendations. However, the first and most crucial step is getting the evaluation.
Soft foods that do not require a lot of chewing is essential at this stage. I would not mix her meds with liquids. Even in the hospital, they will mix with applesauce and there are flavors now. I get the 6 pack and count on 1 for each time she takes meds. I bought a mortar and pestle to grind up her meds. Good luck.
Regarding straws, sucking through a straw uses the mouth muscles differently than swallowing. It can be too hard for people with swallowing issues to remember to alternate, suck, swallow, suck, swallow. It leads to sucking too much and gagging or swallowing but not getting anything through the straw.
Applesause is great for taking pills. But boring to my mom. So we will put canned pears or peaches into a blender and pour in just enough of the liquid to get it to the right consistency.
One last thing, the consistency that she is able to swallow will change so watch for any struggling. Sometimes mom can eat regular but soft food like tuna sandwiches. Other times she needs food like pea soup consistency. You should be prepared to set a meal aside to try again tomorrow and give something else. We keep pureed soups for those days in single serving plastic bags in the freezer. Not every day will be the same.
I applaud your efforts to make sure your wife is eating suitable healthy foods. It's not always easy.
Depending on one's age and medical condition, doing these procedures may not be indicated as the sedation and/or anesthesia may be an issue.
After an evaluation is done, usually including a modified barium swallow study, the therapist can do some short term therapy to determine textures, strategies and whether different methods will work. There are different strategies that really help-for example chin tucks, head turns, and some positioning strategies also. But you really need a professional to determine how to protect her airway, and also how to help her be more comfortable when eating.
The gagging, trouble initiating a swallow, and trouble handling secretions are red flags. She is at a very high risk for aspiration pneumonia or malnutrition.
I have treated people with swallowing problems for over 20 years.
There are also some special cups and eating utensils that can help. But first, you have to know exactly what the problem is.
You are a great husband, and it sounds like you are excellent at problem solving. A professional can work with you to make it safer for your wife.
I should add that Papa is 91 and we are just doing are best to help him as long as he is here. This means he is alone, in his own home, until injury forces him elsewhere - all with his Doctor’s blessing.
I hope this helps!
Even if the recommendation is for tube feeding, no one has to have it placed if they don’t want to. People and their families refuse them all the time. They are also a diagnostic tool.
There is a lot of information from watching a video swallow that a professional can use to make it safer and more comfortable. A lot of times we do bedside swallow evaluations first, and try different strategies, some texture changes, some short term therapy. It helps a person avoid excess choking, spitting, coughing.
And speech language pathologists and occupational therapists are also trained to help people with dementia continue to feed themselves as long as possible with different utensils, cups, strategies.
An example: When a person has a delayed swallow, a straw is not recommended because the liquid is more difficult to control, or too thin when coming through a straw. Also soups with different consistencies are too difficult to swallow. The thin liquid goes down first often while the person is chewing the pieces of noodles or vegetables.
I have seen patients that cough, choke, gag on most any food. But then they can eat a piece of apple crumb pie or a sweet chewy cinnamon roll without any problem.
So there is a lot we do know, and a lot we don’t.
But working together with the family, the patient, the nursing and dietary can improve the quality of end of life.
I also question why the doctor approves a 91 yo with Parkinson's and dysphagia living alone - that is a disaster waiting to happen!
From continued reflux of stomach acids, the esophagus can become not only irritated, but degraded. It's very painful, and often the result of Alzheimers...just a thought.
My mom always had taste for hard candy even at bedtime she would take some to bed. About a year before her transition she developed sundowning issues and slow speech and a very annoying calling out or rather a ah..ah..ah..ah..ah sound non stop.
On a 1300 mile car trip she started that. I had a bag of trip candy and decided to give her a blow pop. And she stopped until the gum stuck to her dentures lol..
So i bought a bag of dum dums YES I SAID DUM DUMS SUCKERS.
Eventually i had hospice come to the house. They have been here 9 months what a god send.
They were concerned of her choking. Sugar intake.. Like hello you just approved her for hospice.
Comfort care...
Every morning i wake her for nourishment usually a Enterex strawberry diabetic shake. They are hands down the best tasting skake..But i stick a straw into her mouth and nothing.. Doesnt even close her mouth... I wet a dum dum and stick that into her mouth and wait a few minutes and she is working that dum dum over. I just pull the dum dum out and insert the straw and she off to the races on that shake.. Hospice workers thought it was crazy but they have come around. Maybe the constant eating of suckers keeps her muscles in memory mode and that helps swallowng too. Needless to say sams clubs sells a bag of (small head pops for about $13 )
Small head means the pop head is smaller than the traditional size.
Dum dum of ohio heard of my moms love of their product tjey sent us a whopping 60lb case.
My mom is on seroquel ( decreasing dosage from the intial dose). Baclofen for muscle pain. Xanax, fentynal patch and morphine for break thru pain. I have been thru a lot with my mom i view this as a journey.. I am a sole caregiver with worthless older brothers. I consider us fortunate.
Day by day. .. Never never never...
Give up.
A final thought... I see commercial s on tv about what smoking does to a body. Not many people (except medical people) know exactly how bad dementia diseases can affect a person
Its like no one wants to talk about this insidious final stages of the disease ,at least until it happens to their loved ones. I just didnt know about it myself... No one should have to go through this.. Caregivers you are special. Please tell the world about this disease .please educate.. And then maybe more will be spent on research. And caregivers only truly know the sacrifices this disease takes .. Im done ... Lol hope this helps. I have lots of tips that i do ... For my mom . lm always eager to share and learn
Have a peaceful day..
Also pills are crushed and mixed with applesauce.
Sweet is last taste to go.
There is a product that some hospitals have by Hormel called " magic cup" google it about 300 calories.
Ninja smoothy maker is good for puree foods. $60 at walmart..
You can buy pureed dinners in bulk
But they will cost a bit.
Let hospice help you when its time.
Sometimes we want our loved ones to eat a lot however when a swallowing incident happens . aspiration is a real serious reality. So when that almost happened to us. Now we tend to be less robust in the amount of food . but taste and does it have a great amount of nutritional value.. As disease progresses more of " thick it" is needed in liquids .. Antibiotics do not try to crush them . they taste awful and you cannot mask the bitter taste with anything ask for the liquid form and put it in a half full shake..
God bless ..
I find mom is usually given crushed up meds [buy a proper crusher] at NH in pudding, apple sauce, & such - whatever she will take however they rotate so that the sight of chocolate pudding doesn't make them stop taking that too
I get a glass with a sippy top with ice in it from NH then I put something in it for her & swurl it around so the ice makes a small noise which can bring on a responce that she is having a cocktail or treat drink - she loves even diet 7UP this way - I make a variety of drinks -
Today the grocery store had a sample of sangria which I found too sweet but bought a bottle for her then went to NH with it but I poured 2 oz over ice & added some perrier style sparkling water - I did this in front of her so she liked the ambience of having a nice drink made for her & drank it so fast that I gave her some of mine - FYI she likes to share the drinks with whoever is helping her & we did a 'cheers' clink of glasses together