Doing more harm than good?--Food related

I did give my mom things like potato chips or tiny nibbles of things I
knew she enjoyed, but I was her daughter, her POA and I had educated
myself on the ins and outs of dysphagia and modified diets. Frankly I'm appalled that staff is deviating from the prescribed diet, dietary aides do not have the training to make those kinds of decisions and since he has dementia neither does he.
My experiences were the opposite of yours, they held too rigidly to the care plan and tried to chide me for giving my mom things I knew she could handle. Another peeve was that often meals that were supposed to be easier to eat were not - meats like minced chicken breast that had the consistency of dry sawdust. I was in the dining room with my mom for one meal a day and observed what was going on around us - the care taken with diets for those who needed any kind of adaptations was inconsistent and often sub par.

I forgot to mention thickened fluids, are they doing that? There is no reason they can't thicken icy cold water, if he can still use a straw he might not even notice the change in consistency.

I feel like if the only enjoyment I have is good food and fellowship over that food, I am 91 at the end of my life, I don't want you to take that away. If it means I don't live as long in this broken old body with a broken brain then that is okay. I need to find enjoyment wherever I can because this world doesn't make any sense to me and all I know is right here and right now.

Just my opinion for my end time wishes.

It's not always that simple Isthisrealyreal.
I watched several people at the NH - whose family insisted their loved one wanted a normal diet - go hungry because they just couldn't manage. It would be nice if there could be some common sense used so some easier to eat foods were left "normal" while others were modified, but in my experience once a care plan was in place it needed to be followed.
My mom choked until she vomited, had food caught partway that she just couldn't get down, had food and fluids come out her nose... none of that was worth eating foods she used to enjoy. And I'm sure she had symptoms of aspiration months before she finally was diagnosed with aspiration pneumonia, choking and gagging for months was not the "old man's friend" trauma free death everyone tells you it is.

If a mechanically soft diet has been ordered this is what he should be getting. This would be like giving the wrong medication to a resident.
If anything were to happen the facility is open to a lawsuit for not following orders.
His liquids should be thickened as well. This is anything from water, coffee, tea, soup, juice....

I had been giving my Husband pureed foods and he always ate everything I made. But I would blend up the same stuff I was having. He did grab a peach from my bowl one morning and he started to choke on it. That peach slice just slid down. It just so happened it was a morning the Hospice CNA was here and that incident went into the notes and from then on everything was blended, thickened. He had managed to cough it back up but it scared the beejesus out of me.
Oh..and a BTW note you can not thicken a liquid that you put Mirilax into. The Mirilax thins out the liquid with the thickener in it. So Mirilax went into thick soups and cereals like cream of wheat.

mom was an aspiration pneumonia risk too.

mom disliked the blender baby food as she called it. wouldn't eat it.
that's when we talked to the nursing home dietician and she brought in an "eating" specialist. Purpose to teach the patient how to cut food into smaller bites, chew well before swallowing etc.

this allowed the nursing home to give mom a less ground up meal.

mom was in the nursing home recovering from a contagious lung problem. now at home her old habits of gulping down food are back. so keep reinforcing good eating chewing habits.

This is where it would be soooooo helpful for us all if mental capacity and decision-making responsibility were an On-Off choice. But it ain't.

I can pass on the theory-in-practice applied in a urology ward, not that the specialty matters in particular, where many of the patients were frail, elderly and mentally frail. Your "patient" has dementia and is therefore no longer able to make decisions. But that doesn't mean that the patient doesn't know whether or not he wants a cup of tea/glass of refreshing cold water and doesn't remember that the last time he had one he choked and spluttered 'til bedtime. Offer alternatives, explain the difficulty, adapt the foodstuff or drink; but in the end, if he'd rather die happy with a packet of chips and a frosted glass in his hand, he can have that choice. As you ask, what's the point in giving him a longer miserable life?

But kitchen staff and basic grade care assistants should NOT be taking this into their own hands and disregarding patients' charts. If they do, report them. Nicely, not angrily, but report it. What if a coeliac suddenly decides she fancies a muffin? What if a patient forgets all about his nut allergy? The rules are there for a reason and they must keep them. If this is happening a lot, it's a training issue which the facility must address.

As regards your father and your personal interactions with him, you can play it by ear and it shouldn't be impossible to provide him with appetising food and treats that are still safe. The clear thickeners won't stop his water being ice cold (and also don't seem to ruin enjoyment as much as you'd expect). His chopped chicken can still have a tasty dressing on it and be attractively presented. How about ice creams and sorbets? Maybe, even, he can have something crunchy and tasty, but only if you're physically standing by.

There's no perfect answer, but what's definitely not okay is well-intentioned ignorance. I would raise the roof at the thought of some kind kitchen assistant standing there and saying "oh I didn't realise" when she's told a resident has just inhaled his potato chips.

I am a speech language pathologist that has done many evaluations for nursing homes and hospitals. Usually when they are on Hospice, that covers everything, but I have done bedside swallow assessments and tweaked the diet a little-and trained staff and educated staff. Request an evaluation. The advice given here might be good for one person, but not another. A modified barium swallow study done may show what he can handle.
I have seen residents that choke on everything, but can eat a whole piece of pecan pie with no problem.
The speech therapist can educate staff and families, and can do therapy to determine best methods for feeding. It is not a long drawn out therapy.
And the family can make an informed decision about what to do. If I was 91, I would want to enjoy my food. But it is not enjoyable when you go into long coughing fits or turn blue.
But staff aides should never give out food that is not on the prescribed diet.
It is a very distressing and scary part of the progression of the disease.
I wish you and your family comfort at this time.

As someone who has been through this with their Mom and still am I would suggest the following...
When my Mom first went into a nursing home 4 years go she had pneumonia from aspiration pneumonia, in fact she had it so bad the food ended up in her lung cavity and she was inserted with a chest tube for several months .
She , with many prayers was able to come home and have aids come in and help her get in and out of bed.
I have her on a pureed diet and all thickened juices and water.
I get her meals delivered from Mom's Meals , and all of her thickened drinks and some of her breakfast pureed foods from Hormel Labs , Although the foods are pureed they have great flavor,
I also have her on a 500 calorie a day high protein shake from Hormel labs also.
She will be 92 this year and is in very good health. Only prescription drugs she takes now are folic acid and her arthritis pills..
The medical community is not much help as far as to where you can find these foods .. Good Luck!!
She has put all of her weight back on,

There is a product to can get thru any pharmacy and it thickens liquids to necter or more.  It is call Thick It.  I use this for my husband who has parkinsons and gets choked on liquids.

Sometimes we have to do very difficult things for our parents. My biggest recommendation is to try to avoid a feeding tube.

My father developed Parkinson's in his last years and eventually needed a diet of "soften" foods. He disliked pureed foods that had no texture but was fine with many foods if there were slightly blended. I boiled meat in salt free savory broths until they were very soft, then cut the meat into 1/4 slices which would fall apart. Dad could eat the moisten meat without problems and I also used it in cooking stews, chicken pot pie, chicken and dumplings, etc. For my father moist seemed to be the most important thing. He loved baked potatoes but would choke if they were dry; moisten with butter and a bit of broth and he had no problems. I make up frozen single serving dishes and took them to his MC once a week, the staff would reheat in the microwave. Dad also liked a lot of puddings, shakes, and smoothies and remained able to enjoy them. Good Luck.

For the past 2 years, I have been caring for my 95-year-old mom in her home. She has aphasia, but still comes under the dementia umbrella. She has has had issues with choking for many years. She, too, chokes on water, or any thin liquid. She does okay on protein drinks, which are thicker. A caregiver who comes to help out, gives her water with Thick-it. So, anything thick she is okay with. Does your father use a straw to drink? Mom does, which seemed to help some, making sure she only took a little at a time (especially water without Thick-it).

As far as eating, we are down to yogurt, applesauce, soups that don’t require much, if any, chewing. Sometimes, she chokes on the soup broth, though. I had issues with her pocketing food, too. Now, she spits out the fruit chunks in the yogurt. She loves ice cream, but choked on that last night. Then she didn’t want it anymore...

It is hard. It sounds like you have to find things (even new things) that can both be satisfying and safe for him to eat.

I probably wasn’t too helpful here. But, you are not alone. It is probably easier for me since I can stock Mom’s house with what she will and can eat.

Dysphagia….How very sad. make him as Comfy as possible. A loving Heart from the Start, Will enhance more of a Longer Quality of Life, Less Strife.

My Nanny went the same things, she slowly ate less then could not swallow, they put her on a honey thick diet but she hated the food, so my Aunt would make her favorite food (pasta, raviolis etc..) in a blender. But it only worked for a little bit, we had to find the best drinks cause she would only drink freezing cold stuff so we got her a bunch of clear ensure and protein drinks, at the end we gave her anything she wanted, she loved ice cold ginger ale (it felt good on her throat) once they hit the not swallowing part you gotta figure out what they can swallow and blend it up for them. Also Ensure pudding helped. The not swallowing was the worst part, but hospice said that the brain tells them they ate. It's so confusing. I hope you can find a way to get some food in him, God bless!

This was, for me, the very most difficult part of the process by which dementia ends lives. We were very fortunate that for 99 ½ years Mom could eat and drink anything, was physically healthy except for knee and back pain, and (most days) remembered who we were, more or less. (She sometimes looked straight at me and asked where Linda (that’s me) was and when she would be home. She referred to my husband as “my friend over there”, unable to dredge up his name from the recesses, etc.). Anyway, after a bout of hospitalization for an extreme and complex UTI, she was released into a care home we had carefully chosen. We had hospice overseeing everything. When she began to be unable to swallow yogurt, water, or even her lifetime passion — ice cream — coupled with increasing anxiety about not being able to go back to our home where she had lived for 9 years — she seemed to decide it was just not worth it. Hospice told us that when they begin being unable to swallow, it’s the body’s way of saying, “It’s almost time for me to go.” And in this case, they were right. We tried all variations of soft food, if only to be able to mix her medicine into it and still get it into her system. No go. Watching her for 3 days with the oxygen thing in her nose which she HATED, and unable to swallow or eat or drink (only ice chips in her mouth now and then) was the hardest thing I’ve ever done. I felt completely out of control and helpless to do anything to make her more comfortable. Hospice kept her comfortable with pain medications any time they appeared to be needed (moaning, etc.). She stayed conscious and made eye contact pretty much until the end. We talked to her and knew from her facial expressions that she was responding. We had people who could not visit call her and she listened to their conversation and smiled (especially with my oldest sister who is hospitalized with MS and could not come in person). It was as much closure as we could give her. After 3 days of this, she passed in her sleep about 5 AM. The only staff non-compliance issue we had (and it was a buggy) was a night nurse who (before the non-swallowing thing) found blood in her Depends one night and immediately shipped her off to a hospital despite her and our express instructions and a DNR. She justified herself by saying it was the “wrong” DNR — there had to be both an out-of-hospital one and an in-hospital one and they claimed theirs had to be the in-hospital one. So instead of doing what we had all discussed or calling us to discuss options, this one CNA made a decision which probably unnecessarily prolonged my Mom’s dying process, certainly put her through a very traumatic hospitalization to which she was 100% opposed, and totally disregarded the idea of using common sense and verbal agreements instead of rigid adherence to a rule that was out of sync with our entire understanding with the facility. I was out of town and my sister was with her and was hesitant to be as assertive as she normally is because she wasn’t sure it was what Mom and I had discussed (the old “doctor/nurse must know best” thing). So I got to also deal with the guilt of having gone to my granddaughter’s 2nd birthday celebration in another state. So, bottom line, (1) when they can’t swallow any more, don’t force it - but also don’t allow a feeding tube. It’s usually a sign that it’s time. (2) Don’t be overly “nice” to staff. They have lots of people to care for, and occasionally you get to be the squeaky wheel to guarantee that they follow your wishes, not their opinions, however ‘educated’ they claim those to be. (3) When you delegate care, be sure to fully inform your delegatee of what is and isn’t allowed, then trust them and let go of whatever happens — they are also doing the best they can by the lights they have. Blessings as you deal with your loss!

This is why I am keeping my 1969 GMC pick up. I have made it clear to my kids that when I become a burden Im going to pull my truck in the garage and go to sleep.

My Step Mother when she was 90 fell and broke her hip. They wanted to do surgery. They said she would have to learn to walk again told her to expect 2 years of rehab/physical therapy. She said NO Thanks. 5 days later an infection took her peacefully. Her children were with her.

Does your father want to be fed? Is he communicating that he wants to live like this?

Having to force pudding and stuff because the body is giving out. There is no fix here. There is no "this will pass and he will get better" No Thanks

My wife has dysphagia which is trouble swallowing. She is on thickened water which I add apple juice to. She is also on pureed food. This food can be shaped in a mold so it will look more attractive.
An alternative is to finally chop up food into very small bites.
Look up "pureed foods for people with dysphagia". This is published by University Health Network. Lots of food for thought in 8 pages.

The dietician and the speech therapy nurse needs to be involved now. You and the dietician can go on the computer and do an extensive menu and pick and choose what you want your LO to eat and dietician can check off mechanically softened and whatever else may apply to your LO. This I didn’t know when my mother was in SNF. My mother was also dying which I did not know, basically it got to the point to give her anything she wants just to get calories in her. When the problem started that she could not swallow was because she got thrush, so check your LOs tongue. (just trying to cover all bases)

Not quite the same situation, but we have a friend who has Huntington's disease and he has at the stage where he has great difficulty swallowing. However, the poor man still likes things that taste good, so his wife tries to find a balance between what is safe for him and what he likes. The doctors inserted a feeding tube, because the man was losing weight, but I have read that feeding tubes don't stop people from aspirating saliva, mucus, etc.

One must remember that care facilities are sometimes between a rock and a hard place when it comes to these situations, because there is always an ambulance-chasing lawyer waiting to pounce on any mistake. With all the people they have to take care of, frequent turnover in staff, and dealing with relatives, the people who manage and work in these facilities have a lot to deal with, too. Of course, there are mistakes and then there is negligence, which is always wrong.

My 92 y/o mother with moderate dementia got out of the hospital last Friday for pneumonia, the doctor said it was aspiration; and is now in a Rehab facility to regain her strength. The Rehab director calls herself a swallow expert & says it was not aspiration pneumonia since it was in both lungs vs. one lung, and her barium swallow test came back pretty okay. Not great, but not horrible, either. I've WATCHED my mother choke on water; I've WATCHED her choke on food she slurps off of a spoon or a fork, I've seen it with my own two eyes. She was put on a mechanical soft diet in the hospital, but not discharged on the diet. The ALF where she's lived for 4+ years does not accommodate ANY special diets, so I was surprised to read the ALF your in-laws live at DO accommodate them at all!
In the hospital, the speech gal recommended an adult sippy cup type of thing that has two handles; it only lets out a certain amount of liquid at one time, thereby reducing the choking hazards. At the Rehab facility, the director said I was 'stripping away mother's dignity' by asking her to use a sippy cup. Which irritated the chit out me, frankly. I explained to her that I was in no way trying to strip anything from anyone, but instead, trying to provide a SAFETY mechanism. Today I had lunch with mom at the Rehab. 4 minutes after we sat down, she choked on some water & then spilled the entire rest of the cup on the table because she no longer has the motor skills to hold onto cups or forks, etc. The very same director rushed over to clean up the mess, and wound up bringing mom a sippy cup with 2 handles on it to drink from. I nearly bit my tongue off rather than make an I Told You So comment.

Mom also, apparently, has a hiatal hernia, so this same gal told her to NEVER eat any of her favorite fruit which is oranges. She also brought in a list as long as a roll of toilet paper of OTHER foods to never eat. All of the foods on the list are mom's favorites, of course, since they all have flavor & taste.

In any event, this long rambling comment is intended to serve ONE purpose: to allow you to see the futility of the entire situation we're faced with. If our folks are going to choke, they'll do so with or without a sippy cup, with or without a mechanical soft diet, and with or without a few potato chips given to them for taste. When dementia & disease has stripped these poor souls of everything else, why not allow them to eat & drink what they DO like?

And, last but not least, who's to say what is 'best medically'? God knows if you ask 10 different doctors or medical 'experts' a question you will get 10 different opinions! So follow your OWN heart & do what YOU feel to be best for your loved ones. Nobody gets out alive anyway, do they? We may as well go out with a smile instead of a grimace.

My late mom's ability to swallow was from a stroke. Perhaps he can have ice cream or a milkshake that he would enjoy besides his routine food. Praying for you. We decided on palliative care for my mother.
Kitchen staff a lot of TIMES will and do get things wrong. I've seen it happen first hand.

If this person is nearing the end, then let them have little bits of what they enjoy. Be present or have someone watching if something goes wrong but don't deprive them. And why is he forced to eat with others who can eat anything? To me that is very cruel. Could he sit with other people with his eating problems or somewhere else with someone so he can eat in peace? And it would end the suffering were something to happen to him - look at it that way.

You could be describing my father. He was in a good Memory Care facility and under hospice care as well, seemed to be happy and glad to see us when we visited. When he began having more frequent issues with choking, we discussed it at our care meeting. Their observations and mine were that he still got so much enjoyment from eating and when they gave him a soft diet, he would not eat. We already knew we were not going to do tube feeding, per his advanced directive. Our decision was to allow him to have the small joys he still could and allow him to eat, with supervision. He also loved his cold non-alcohol beer! We felt it was best to allow him his pleasure for the best quality of life in his remaining time. He did eventually get aspiration pneumonia. Although he received excellent care he passed away, with all his family there to share our love and remind him that Mom was waiting for him. I do not regret the decision to allow him to continue eating at all. It made his last months more enjoyable, and many of the staff told us he was always smiling and joking and seemed to be happy, so I know it was the right decision.