institution denies stroke therapy

[bounceback?]

Mom (78 yo) had an ischemic stroke overseas where she lives.  It was severe; but, she is definately 'present' and struggling to 'come back'.  Their focus is on what she can't do.  No promotion of skills she can demonstrate. To them everything is wishful thinking or 'reflexes'.  Any negative aspect is a reason to give up. They won't even look.  We have to videotape her controlled movements and stick it in their face.  Even then we get a bunch of broken promises. We have no frame of reference to know what is offered in the US.  How can we find out the way things are done here?

She is on a feeding tube and getting supplemental oxygen.  She hates the tube. When it's removed she really perks up.  Mom can't talk.  They fed her once when we pushed them to. It was done very casually.  She was able to eat a small cup of jello and another one of a thick yougurt-like substance.  Mom managed with little trouble.  After eating, her suction bottle was clear.  But, 72 hours later she came down with a fever and they blamed it on the feeding, saying that she'd aspirated some food.  The experiment was over.

They tried to put a 'peg' in; but, said that they couldn't.

Recently we've learned about a procedure called floroscopy (sp?)  We don't know much about it except that they can 'watch'
as food is swallowed.  We never heard of this over there.  Can anyone advise us about it or any other diagnostic procedures?
How is eatingpromoted? What is the progression of types of food attempted?  How soon would aspiration cause a problem once the immediate meal has been swallowed?

[Tressa999]

Why couldn't they put at PEG in?

[lahinva]

When my dad had his stroke in May, they said they were going to have to insert the PEG because he couldn't swallow.  Just before he went down for the surgery a different speech therapist evaluated him and said he was fine to eat.  He never had another problem with the swallowing after that.  I'd say to get a second opinion on her ability to swallow.

[nana45]

I had a brain stem stroke 2 years ago and was unable to eat or swallow. They but in a feeding tube, and started theraphy. They also did the test were they watched the food go down. I failed it 3 times before I was able to go on custarded thicken liquids. Then when I was able to swallow my own spit I went to just thickened liquids.It was for months before I was able to get the tube out and able to drink water. I am now eating everything, at time if I talk and eat at the same time I have trobles with my swallowing, but otherwise it's fine.
They had said ahead of time, I would never get the tube out and be able to drink again. So don't give up hope.

[caregiver222]

You have a very difficult situation. Treatment involves a levelof care that is virtually impossible to find. I take reasonably bright untrained people with no experience, and trained them to be caregivers. It eliminates the "unlearning". And the attitude "Don't tell me - I've done this for years". The ability to swallow is often compromised after a stroke, and just as often bounces back. It is not a "constant thing" and the abilitity to swallow must be evaluatued on a daily basis. The fact that an evaluation by a swallowing specialist was make four or two or three weeks ago is meaningless. Every single day the caregiver must start the day with the question: "What is the patient's swallowing status". The best way to do this is to provide a "thin fluid challange" and closely observe the result. I kind of like a small two ounce cup of pulped orange juice in the morning. The caregiver notes if the patient spits up the fluid, or has any difficulty in swallowing. Depending on the result the plan of the day is altered toward "protocol A" or "protocol B". I like to see the caregiver write in the logbook the results of this "thin fluid challange". I recieve a telephone call if thin fluid cannot be swallowed and approve the plan of the day accordingly. Bananna is the key to recovery. It is a magical food. Small pieces of bananna. Bananna stimulates the swallow reflex the way no other food can. eal periods are of necessaity very long. Think and hour and a half as the norm. No forcefeeding is permitted. It may take ten minutes between feedings, but NO force feeding. Force feeding will cause aspiration of food into the trachea. Do not pass go. Do not collect two hundred dollars. This will rsultm in aspiration pneumonia If there is difficulty swallowing, thin fluids should not be provided to assist in getting the bolus of food down. Instead water-enhanced applesauce should be used. You make water enhanced applesauce by adding a few tablespoons of water to organic apple sauce. The meal is presented on a small teaspoon presented below the level of the mouth. Of course bed feeding is never acceptable. The patient must be in a chair with the spine 90 degrees to the surface.  Ideally, the spoon should be placed in the patient's hand and the patient allowed to feed themselves. The amount of time it takes for that bolus of food to go down can be very long. Most health care aides get impatient and try to force a second spoon down as soon as the patients mouth opens. Wrong. Patience, patienfce, patience. It is possible to fatigue the muscles necessary in swallowing by forced feeding. They become so fatigues that they will not function at all. Then the staff justifies a stent or a feeding tube. Generally a stent is necessary because of poor nursing care. Not always.

[caregiver222]

It takes a TREMENDOUS amount of patience to rehab a stroke patient who cannot swallow. Few long-term care facilities are set up to do so. Also, the protocols provided nurses and caregivers are pretty crummy. Let's give an example. You have a patient who cannot swallow thin fluids. You must provide them with a very small bolus of a food substance that has body and flavor and will stimulate the swallow reflex. Applesauce is a good candidate. So is a small piece of banana. Often banana will work when the patient will be unable to swallow anything else. Bannana is the stroke rebah magical food. You get a bit down, and then you have to wait. How long? Think ten minutes before the next small spoonful. This translates into an hour and a half feeding session which conflicts with most scheduling in nursing facilities. As a rule, if the patient can swallow a single small spoonful, this is a very positive event. Unfortunately, the next thing is that the caregiver is ready with another spoon saying "open wide". Even though the patient opens his/her mouth this is the wrong thing to do. Those swallowing muscles are weakened and fatigued. You will strain them by using them too much. When you have a patient with almost no swallowing you have to think innovatively. It might take a week of a very strange feeding schedule. Think about a single small swallow of food every thirty minutes for an entire day. You will be strengthening those muscles and yet not fatigueing them. Usually food aspiration is due to the aide following up a but of difficulty swallowing by offering a liquid drink. It is quite possible to have a patient tolerate banana all day long and yet choke to death on a cup of water. Thin fluids are contradindicated during the "swallow rehab" phase. Also remember that the ability to swallow may return, and that just because a patient was evaluated one day and it did not exist, should not mean that you should not endeavor to facilitate the return of this ability.

[Granny Smith]

My husband had a severe stroke 3 years ago at age 69.
His swallowing was effected along with the whole left side of his body.
He had weeks of rehabilitation before he could come home.
I was present during a special xray associated with the swallowing process and I could see for myself exactly how the swallowing mechanism was effected by the (series) of strokes he had.He had to have specially treated type "thick shakes"for a while, so that his swallowing 'mechanism' could cope.
Now, three years on,he is still presented with problems when swallowing food. Some foods are more difficult to swallow than others. He cannot hold a conversation and eat at the same time.He must not eat and drink during the meal....it makes the whole process of eating more dangerous because of the different conistencies of what is being swallowed.We have to be very careful because "the flap" opens on swallowing and sometimes the wrong bits (ie food) get into the lungs instead of to the stomach.
Overall....he coughs /chokes a lot...scary sounding when he coughs etc. but he is generally o.k. and understands what is going on.
Hope this helps those who are "new" to what is happening to their loved ones.

[caregiver222]

Just another sad note in 2006. This morning I visited a nursing home taking care of a stroke-damaged concentration camp survivor. He has gone steadily downhill under their "care". It's a sunday mornimg, where most nursing homes slack off. There is the whift or urine in the air. They refused me entrance prior to 11 A.M. visiting hours. It was very important the non-english speaking staff have time to "work" rather than someone be around to hold a dying old man's hand. Then the nursing home supervisor decided I wasn't a relative and wouldn't be able to visit. U might even be a news reporter.  A visitor to another patient unformed me my patient was having trouble breathing. I went up, security in trail (most of these peopleholding security jobs in these facilities have failed police psychologicals and take the jobs to exercise authority) to find the old man lying flat bubbling froth, and upon ausculating four quadrants, anterior and posterior, determined he was in congestive heart failure (CHF). Left heart failure. The nursing home physician was at home and refused to come to the telephone. The nurse ignored my orders to place him with his chest upright. Or think about rotating torniquits. The fat illegal alien "aide" listened to rap music on her Walkman while the patient gasped for air. The place has a fantastic web page and brochures. They suck the medicaid/medicare system dry. The people who own and run these nursing homes deserve much more scrutiny by the law enforcdement community. And if there is a place called hell, there are a lot of people running nursing facilities who deserve a place there.

[bobswife]

after my husbans stroke last Jan, he was prescribed an oral blood thinner as one of his medications, it could not be taken intravenously.It also could not be taken until he had a "swallow test" to make sure he didnt aspirate it. Unfortunate for him, one speech thrapist assigned to our hospital was sick, and the other was simply too busy.FOUR days later, the test was given only after we threatened to call the state medical board to report them as neglectful,as Dr. orders were not being followed, when the oral meds were prescribed.Dealing with all types of stroke recvery is a HUGE frustation, which is the worst possible sceniro for the patient.Educate yourself, know yor rights, your loved ones rights,and update yourself ALL the time, things change in the health care daily, especially with the coming of a new year, KNOW your insurance and any changes that will be made.And then, get ready for more, even worst frustrations trying to get disability payments!Peace.