My Mother is in a nursing home and has Dementia and just diagnosed with Dysphagia. She is on "Honey" thickness. The night before she was diagnosed she was fine with eating regular food and was even eating cookies and fig bars, and now all of a sudden is on "Honey" thickness foods. I always thought you would gradually go on the different types of chopped foods before going straight to "Honey " thick.
Its been a nightmare because now she is at the point that I have to feed her because she doesn't like the pureed food and will not even pick up the spoon to feed herself because lets face it, who wants to look at that consistency and pickup a spoon and put it in your mouth. LOL. I am looking for tips on how to go about this. And also I feed her lunch everyday but I am not sure if the aides at the nursing home are going to try when she tells them NO and she is very thin and needs to gain weight. It's an endless cycle.
Some doctors said, have your loved one eat whatever they want. Sure, it may cause swallowing problems, but their last months will be happy, they will enjoy eating. We didn't do that with my dad as we wanted him to last. I sort of question the wisdom of that now
Many times there is not a clear idea of what our loved one would want. While we might understand DNR or no tube feedings; the whole feeding thing is stressful. I believe let them eat whatever they want whatever the risk. What is the point of anything else at this point in life?
Dementia robbs its victims of nearly every single thing and I have found peace with my wonderful Mom being gone. As I said before, I will miss making her happy, forever.
We were very lucky to have found a wonderful memory care/assisted living and had planned to have her go back there under hospice care. I know there are certain terms that someone must be in a skilled nursing...but she was not at that point.
It's tough and so unfair and every single victim is different. I wish you the best. We have to be great advocates for our loved ones, no matter where they reside.
We were lucky that Dad remained able to feed himself so the MC staff was willing to spend a little extra time heating something up in the microwave; the 24/7 kitchen was a "feature" of his MC so getting a milkshake or smoothie was included in the basic service/price. It probably also helped that my brother went almost everyday for about 6 hours.
I hope some of this is helpful.
Our nursing home grouped those needing assistance together and usually one PSW sat at a table of four, two of those might have needed to be fed while the others needed coaching. What was eaten was charted at every meal, nobody was doing without unless they refused to eat.
When my mom was moved from an AL facility to NH, they did a swallowing test, and said she choked on water. Therefore placed on thickened liquids.(I believe thickened liquids are for people who will regain swallowing ability) So I explained my mom was just doing fine drinking and eating a mechanical soft diet. The mechanical soft was ordered because she would tire of chewing and stop eating. She has had no choking episodes in the 4 mos at the NH.
Next food battle: enhanced diet. Mom has been losing weight, so they have given her protein enhanced food, as well as double portions. She eats anything that touches her lips, including her toothbrush. She is overweight. She is in bed most of the day and transferred at times to a broda chair. She is 15 years into dementia, 11 years with an actual ALZ diagnosis. She is losing weight because of the disease process.
Yes my mom has end-stage Alzheimer's and yes she has swallowing issues..BUT she can still eat using thick-it and ***infinite patience** feeding her. As for her swallowing issues--her latest chest x-ray just last Saturday showed clear lungs. So I am doing something right.
A nursing home will simply chart "refused" and that's the end of that story.
(1) Probably because the food tastes like puke.
(2) You will most likely have to feed her with INFINITE PATIENCE (it takes over an hour to feed my mom, often 1-1/2 hours for a single meal).
(3) If this is new behavior check for infections such as UTIs.
My mom has very end-stage Alzheimer's and she does great with extremely heavy ice cream mixed with HIGH quality protein shakes; I MUST feed her. I mix in some thick-it. Separately, I crush and mix her routine medications with honey. I include a crushed multi-vitamin with iron mixed with honey with lunch (separate from her regular meal). Mom is an insulin-dependent diabetic but her sugars are always great despite this kind of diet. Then again I know how to deal with her insulin so manage her sugars very well.
Is it practical for you to be with your mother every single day? If it is, and you can keep it up, then one solution might be to prepare the foods you know are her favourites, and then either pack them into an insulated carrier or bat your eyelashes at the staff and see if they'll let you reheat dishes in a microwave.
Almost anything can be *made* to be honey thickness at the point of eating, with a firm hand and a fork and some gravy or sauce; but for the NH kitchen and the staff this would not be realistic.
And, of course, there's soup: infinite variety of flavours and vitamins to be packed in there and blended down, with lentils or eggs or milk for protein. Ice cream, full-fat yoghurt, custard, egg flips and fruit fools - there are plenty of high calorie snacks that would meet the swallowing criteria. But the key question: what does your mother really like?
It's a tough time for all concerned.
What would cause her throat to be too sore to swallow? She's saying her throat hurts, wether it's warm or cold it's something that hurts her throat. Is that normal for somebody going through Dysphagia?
NDD Level 1: Dysphagia-Pureed (homogenous, very cohesive, pudding-like, requiring very little chewing ability).
NDD Level 2: Dysphagia-Mechanical Altered (cohesive, moist, semisolid foods, requiring some chewing).
NDD Level 3: Dysphagia-Advanced (soft foods that require more chewing ability).
Regular (all foods allowed).
Modified Regular Food Diet
If this is new they may still be experimenting to see what works best and willing to alter things a little. Try to meet with the dietitian to see what changes you can make, and ask for a supplement to boost calories.
I've got to say that wrangling over the food was one of my constant stressors in the nursing home. Lunches were the most awful because the meal mostly included things like sandwiches and salads - these do not puree well🙄. Because of the way meals are structured it was impossible for the dietary aides to be flexible and allow variations to the diet plan, so although my mom could handle some items that were not pureed they were never offered - I just rolled my eyes and said I understood and took responsibility as I fed her crackers with her soup or asked for a side of potato chips. You may find that she's doing better with her other meals, breakfast oatmeal isn't too different when pureed, mashed potatoes are familiar, soups should be acceptable etc.
Just popping back to add that I watched a couple of ladies whose families over rode the advice of the dietitian and insisted on a regular diet - the poor dears couldn't eat at all and staff were powerless to do anything about it.
I would suggest you bring in some soft foods she might eat. Like puddings, etc. Or maybe you could find the right seasoning to give it some descent taste.Experiment with it at home. Sweet potatoes Maybe, etc.
Good luck.