stroke problems

My mother had a stroke in july (massive)  appetite has gotten worse over time.  Mom is now in a nursing home and says she cannot eat.  She is able to swallow minced food but is suffering from a severe loss of appetite.  She says either, she is full, the food is too sweet, she can"t get it down, she makes repulsed faces before she even gets it into her mouth.  She cries that she can't eat.  She is peg fed at night.  She often throws up, water.  She also holds spit in her mouth and needs be reminded to swallow.  The food issue has become consistently worse from the first days in the hospital where she ate everything, to some foods and now repulsed by food.  Anybody please help????  Mom is 87, partially paralysed, suffers from dementia (worsened over time since the stroke)

[caregiver222]

Stroke symptoms that "progress" are often due to a slow bleed. Often due to coumadin. Test for her sensitivity to sunlight, which is a hallmark of such a bleed. Try and see what nutrients she gets at night on the peg and the quantity. Be prepared to be ignored in this request. Ask to see her feeding log. And try to find out what PEG device was utilized. There are different ones. Some use an inflatable balloon that is a little too big for the stomach. Thus the stomach always seems "full". The irritation by the balloon can cause a person to "throw up". Some people tolerate a PEG very well. Others do not. If possible speak to the physician who inserted thre PEG. The PEG will be replaced after a while and there may be an option for a different device at that time.

[caregiver222]

This is a serious problem. Nursing homes in general are short-staffed and pay little attention to someone with dysphagia. If she has a room-mate in the nursing home who does not have dementia see if you can get her to assist in feeding. The nursing home may not permit this. Recentlay I used to visit a woman who passed on and they had a fit when I hand-fed her every day because of "insurance". Those with swallowing difficulties often have what is called "thin liquid dysphagia" and cannot swallow thin liquids. This a thickener must be added to liquids. Holding spit in the mouth is called "cheeking". These patients require a very special kind of feeding and in general the nursing homes are incapable of providing that service. It often took me two hours to feed one of my little ones, with her being provided with a half teaspoon every ten minutes. Hot spicy foods help. The swallow reflect must be stimulated. Unfortunately in nursing homes the food is generally bland. And sitting upright in a chair...but the nursing homes feed in bed. You need to talk to the nursing home physician. Most of them aren't too helpful. Serving different flavors of beverage at meals helps. But the nursing homes are simply not set up to deal with such patients.

[elliebelle01]

Thank you for the suggestions.  Mom's constant cheeking is relatively new.  When she was in the hospital she hardly did that.   There she would at least try the food, and when she got tired feeding herself, we would take over and feed her.  That worked a little more than half the time.  At least she would try the food.  Mom gets most of her meals in the dining room.  She is at a table were another patient is fed and she shares that psw during the meal.  The biggest problem seems to be that is turned off all food.  She points to the drink and says it too sweet, or coffee is too bitter.  I will try to get her to try the food, and she is already making a repulsed face before the food has touched her mouth.  She  spits out what is in her mouth and say i cant eat.  Sometimes she will simply say she is full.  Right now she is also throwing up everyday.  Mom is fed by the PEG at night.  We are wondering why she is throwing up so much.  Any ideas would be helpful

[caregiver222]

Stroke symptoms that "progress" are often due to a slow bleed. Often due to coumadin. Test for her sensitivity to sunlight, which is a hallmark of such a bleed. Try and see what nutrients she gets at night on the peg and the quantity. Be prepared to be ignored in this request. Ask to see her feeding log. And try to find out what PEG device was utilized. There are different ones. Some use an inflatable balloon that is a little too big for the stomach. Thus the stomach always seems "full". The irritation by the balloon can cause a person to "throw up". Some people tolerate a PEG very well. Others do not. If possible speak to the physician who inserted thre PEG. The PEG will be replaced after a while and there may be an option for a different device at that time.

[elliebelle01]

The nursing home has decided to let her skip meals for a week and go strictly with the peg feed.  I guess they are trying to determine if actual food is the problem even though she eats virtually nothing.  When I visited her on Saturday I noticed that there is a bit of a pattern which starts about 1 hour before dinner.   She begins to get agitated, mentions she has to go to the bathroom, starts to feel some nausea and gets more irritated.  At this time I notice that I can smell food cooking.  When it is time for supper, she talks about that she can't eat, never exactly explaining what she means.  ( we did put pressure on her to take her food and meds before she was on the peg, we had no choice.  We had to push hard for the peg and there was quite a delay before she got it. It took 3 to 4 weeks after the stroke before we were able to get it. The information you posted made a lot of sense we are hoping to get the doctor to look into this.  Apparently he is very slow and methodical.  I think she is depressed as well.  When she was in the hospital even with the peg she would still eat her favourite food we would make and bring in.  Can peg issues, such as the ones you mention develop into problems over time, if things started out fine?  Thanks for you comments, it helps.

[caregiver222]

There arev two types of feeding with a PEG. The "bolus feed" and the "continuous feed". The bolus feed is superior because it permits the patient to ingest small quantities of normal pureed food, and hopefully wean off the PEG. The continuous feed is simply more convenient for the nursing home. Become proficient in bolus feeding. There are short courses available. If you learn this you can take her outside on a pass. The main issue is whether the stroke has stabilized. Strokes from clots usually stabilize. Coumadin often (nort always) leads to a continual deterioration of mental and physical capacity.  PEG patients require lots of attention, and that attention is often unavailable in even good nursing homes. It is important for small quantities of food to be provided by mouth every day to stimulate saliva.

[caregiver222]

Determine whether or not she has what is called "thin-liquid dysphagia". These patients are unable to swallow water or unthickened fluids. "Throwing up water" is a hallmark of this condition. Bring highly spiced foods and tomato juice with hot sauce and lemon. Purchase thickening agent -  get it at the drug store. Provide it a half-teaspoon full at a time.  Most nursing homes serve very bland foods, but these do not stimulate the swallow reflex. Get her a radio with earphones or a way for her to listen to music. Talk radio is helpful because of the voices. Whenever you visit make sure you keep "body contact" for as long as possible. That is hold her wrist or shoulder at all times. Do not assume she cannot understand everything that is said. Bring some debrox and de-wax her ears. Wax build-up causes significant hearing deterioration and most nursing homes don't pay attention to this. It is easy to do.  Bring flowers and make sure she can smell them before they are put on the table. Gently massage her arms - very lightly...and her feet....bring photographs when you visit...not too many, but different ones. Insure she is removed from her bed and at least taken to the recreation room and obtains "range-of-motion" therapy. Don't give up on her. Encourage her to "reach" for food, rather than place it in her hands. Whenever you visit, try to make sure she is not on continuous feed and attempt to hand feed her. Sometimes it may take ten minutes for a teaspoon to go down. Be patient. The food tends to "back-up". Make sure she doesn't choke. Scrambled eggs with maple syrup are often well-tolerated by PEG patients, as are soft pancakes such as those from McDonalds. Make every effort to have her feed herself.

[elliebelle01]

This week mom was cut off from regular food and kept strictly on the PEG.  She was somewhat better and did not throw up.  I will ask the RN what that means when I see her tomorrow.  Moms PEG is a nighttime feed which I think starts about 9 or 10 and night and goes through about 10 hours.  I will get the specifics from my brother.  When she says to me that she can't eat or that she has a hard time getting things down, do you think that the swallowing reflex is not stimulated enough by what she has in her mouth therefore she can't get it down on  her own?  I know she has difficulty with swallowing thin liquids, that was already beginning before this stroke.  I had just started thickening water and juice a little.  We have the thickening agent and use it when we bring her food.  I will know more after I visit with her tomorrow.  (p.s. when mom was throwing up it was often spit like, certainly no food there.  There were however a few times that there was bile.  also know that we are trying to get her bad fitting dentures replace in case this is also part of the problem)  There is no way we will give up on her.

[caregiver222]

There is no reason whatsoever to "test" a patient by placing her on continuous feed for a week except for the convenience of the nursing staff. In fairness, they have a limited amount of time and energy and if they determine that it takes a long time to feed a patient they may not have that time. You are being told nonsense. But I can see their side of the story. This does not mean that they are acting carelessly or inappropriately. There are four types of feeding. Continuous feed with ocasional attempted during the day to provide a small amount of soft food or fluid. Continuous feed alone. Bolus feed alone. And bolus feed with attempts during the day to hand feed and provide small amounts of liquids. Please don't give up on her. Dysphagia is a difficult problem. The problem may disappear, remain stable or ocasionally get worse. If the stroke is stabilized there is redundancy and a liklihood the swallow reflex may return. There are no contraindications to providing small quarter or half-teaspoons of food (preferably spicey) to a patient on continuous feed during the day. This will promote development of saliva, which is bactricidal and prevents mouth infection. Try to encourage them to adopt this protocol. Try creamy soups such as mushroom or chicken. Try (if you don't have one) to get a medical release and request written copies of all her medical records every so often.  The mere fact that you do so ensures that staff pays special attention to the needs of the patient. But be polite and try not to be antagonistic. Find out the name of the physician in the nursing home responsible for her care, make an appointment,  and discuss the situation with him. Most nursing homes only permit input from the geriatric physician working for the home.

[caregiver222]

There is an argument against continuous feeding without any attempt to promote swallowing during the day. One objective is to develop new neural pathways to replace those that are damaged due to the stroke. This will not happen unless an attempt is made to initiate the "swallow" reflex. The downside is that you do not want to condition the patient to avoid food. If every time food is placed in the mouth they gag this may become a conditioned reflex. Thus the attempts should be made with a pleasant food that can be both tasted and smelled.  The patient should be told the name of the food. I used to cut images of well-prepared food from magazines and show them to the patient to "get them in the mood". The patient should not be in bed but in a chair in an upright position. The vertical back position assists in swallowing. The food should be placed before the nostrils so the patient can get a "whiff" before placing a small portion on the tongue. The third step is one minute later to place a quarter teaspoon on the tongue and permit the patient to attempt to swallow. I had success with the juice from a sizzling steak (cooled down) to induce swallowing. Bananas are excellent for this purpose because they have both odor and a distinctive taste that stimulates swallowing. I liked to alternate a bit of pureed food with a bit of thickened liquid.

[caregiver222]

Food fragrances can be purchased for around $5.00 U.S. per two-opunce bottle on the internet. These include almond, apple, butter, buttered popcorn, coconaut, citrus, coffee, peanut butter, strawberry, mint, and dozens of others. I have used these with stroke-disabled elderly patients with dysphagia oprior to attempting to feed them. You place a drop on a "Q" tip and waft it near their nostrils. Just like in Pavlov's dog experiment this often generates saliva. And they get "hungry". A minute later I would provide a teaspoon of milkshake. The problem with most thickened drinks is they have no odor (only color). My feelings are that the combination of odor and strong taste are essential to promote swallowing.