This patient support community is for discussions relating to stroke, rehabilitation, ability to eat/swallow, alertness, bowel/bladder control, depression, motor skills, nutrition, orthotics/braces, pain, prevention, senses, and spasticity.
My mother suffered a hemmorrhagic stroke 9 months ago. I have asked the doctors and nurses regarding her plan of care. The doctor told me that her plan of mcare was to monitor and maintain. The nurses have told me that her plan of care is the doctors orders. Can someone direct me to where I can get information regarding a stroke patients plan of care?
I'm looking for the same thing. My mother's doctor says she's elderly, and that seems to be his answer. In otherwords...she's going to die anyway. We just want some quality of life while she's here. I just saw on the web that the University of Florida has a stroke center and also Florida hosital in Orlando. Good luck.
I rehabed a 101 year old woman who couldn't talk, move or have facial expression and was essentially vegatative and unresponsive. The best rehab in the United States turned her out to die. Nine months later The is walking talking, just regained full use of her hands and smiling and happy as moon- pie. She fed the pigeons in the park yesterday. During the course of the rehab I fired her rehab specialists, three nurses, four doctors and ran through thirty one aides which were sequentially fired. Most of the stuff printed about rehab is nonsense. And the bureaucracy of the rehab centers conflicts with the needs of the patient. It requires a lot of time and love and common sense, but don't give up.
For starters a daily hydration log is a necessity. If the aide cannot tell you to the ounce how much the patient has taken in at any time of day, fire them. Hydration, hydration, hydration.
I am against the use of coumadin entirely, and threw away her coumadin. Everyone on coumadin dies a terrible death. Do not pass go. Do not collect two hundred dollars. It ninterferes with compensatory processes. With proper diet, nutrition, hydration and exercise, there is little need for coumadin. If your doctor insists on coumadin, find another doctor.
There are alternatives to maintain blood flow. I muse cod liver oil and omerga-3 oils every day. Plus garlic, minced and mixed with the food.
Remember the vet adage "what doesn't move dies". I took her out every day for five hours a day, even when she couldn't respond, to experience life and the energy of others, for months.
Holding and touching are important. And lots of real love. If the aide is in the room and not holding the patients hand or sitting next to them they should be fired.
Stroke friendly foods are a necessity. I made up a menu. Throw away the ensure.
Regaining the swallow reflex is a necessity. It can be done. A lot depends on the man upstairs, AKA the lifeforce.
I don't know who you are or where your from but your comments about coumadin could scare some people if that's all they can take. If your ever in their shoes ( which I hope you will not be)I hope people will console you w/ some tact.Your attitude about the medical field, nurses and pyhsicians is offensive.
The "Plan of Care" should include meals at regularly scheduled times. suggest 8 AM, 1 PM and 6 PM. Meals should be at a table. Bed feeding should be prohibited. The meals will probably take a lonhg time. Figure on an hour to an hour and and fifteen minutes for someone with severe damage. Long intervals between spoonfuls to prevent food aspiration.
Do not pewrmit the aide to FORCEFEED. For some reason the aides are tauight this is a "good thing". It can be tfatal for the stroke damaged patient with a swallowing disorder.
Approach when hand feeding from directly in front and below the chin level. This opens the passageways. Ice cream and crushed ice in the drinks is also helpful in developing swallowing.
Allow more time that you think between spoonfulls. If there is spitting up or "cheeking" of food, wait ten minutes before the next spoonful.
The plan of care should include dressing the patient in normal clothinhg every day between nine and ten A.M. and giving the patient a daily CHOICE of two things to wear. The plan of care should include a dry-erase board (such as one from staples). Print in large letters. Tell the patient they will be eating in ten minutes, for example. Ask them if they want a shower. If your health care provider hasn't heard of the dry-erase board get another provider.
The plan of care should include cleaning and trimming fingernails and toenails. The plan of care should include sunlight 45 minutes a day. And exposure to sunlight or the artificial equivelant every morning between 6 A.M. and 9 A.M.
The plan of care should involve outside stimulation. I took my 100 year old patiuent outside in her wheelchair every day for sixty days for four hours or more. And inside stimulation. A good television set that is constantly on.
Outside means with protection against direct sunlight, but you want some exposure. You don't want heatstroke. You need to bring along two flavors of drink and constantly offer them when outside in warm weather.
My attitude concerning the medical field comes after years of working in emergency rooms, and years of watching the elderly ignored because they are "too old to save", and watching deaths from incompetence, uncaring, bureaucratic regulations, hospital money making policy, and physicians who are unable to connect the dots. Have you ever held someone in your arms who is dying because of physicians indifference? I have. And physicians incompetence? I have. And vido-taped a professional aide who was irritated to take care of a wealthy elderly lady with a stroke who threw away her dolls and tied her water bottle to the bed rail just out of reach while she died from dehydration? The myth of the professional caring health care aide. Yeah, some are good, but many aren't. Like the one who burned her patient alive. A case I'm currently involved in investigating. Incidentally, the nationwide healthcare provider who emplpoyed this woman has one of the best stroke care websites on the net. They brag they have a social worker intimately involved with the care of the stroke patient. There is a character created by Voltaire called Dr. Pangloss. Indeed this is not the best of all possible world. In this day and age the day of "getting the best doctor" is over and done with. Patients have incredible unprecidented access to medical information. And they should use mit to participate in their own decisions.
Coumadin is universally recommended as a post stroke treatment under existing hospital protocols. I frankly believe you would be hard pressed to find a physicianh that would not recommend its use. Asdar as "scaring" people, it's not 1934, and a patient has a right to participate in his or her medical decisions. Clotting is a natural and life saving mechanism and one interferes with compensatory mechanisms at risk. Initially a patient is generally heparinized while in the hospital post stroke, and then switches to coumadin. I have no problem with that. What generally happens then is the patient remains on coumadin for the rest of his/her life. If I am scaring people, thenperhaps they should be scared because many patients nonm coumadin experience brain bleeds and end up quadraplegics. That's the "dirty little coumadin secret". How many? It's agood question because the subject has not been thoroughly investigated. As know strokes have two causes. They are due to clots or bleeds. And sometimes you can have both. Few physicians ask themselves why there was a clot that developed in the first place. A person in relatively good physical shape can develop a clot serious enough to cause a stroke from simply sitting in an airline seat for a long period of time.
I do not recommend anyone simply "go off coumadin" without a thorough understanding of the mechanism of clots. A patient who elects to not take coumadin must be exercised regularly. And that means walked, made to sit up, not left in bed, and their blood sugar must be within normallimits and they must be well hydrated.
Another side effect of coumadin is that if you fall and hit your head, and there is a bleed, the bleed won't stop.Mother nature doesn't creat a compensatory mechanism for nothing.
The dirty little secret is that there are a lot of dead patients out there, dead because of coumadin.
And to be fair, coumadin is a necessary evil in certain cases, and certainly in the short run, when an elederly patient is confined to the bed after a broken hip, for example, it isn't the bworst idea in the world.
Coumadin, however, is treated far too casually by the average geriatric practicioner. And there are naturopathic methods of restoring normal clotting. Codliver oil, garlic, and vitamin E are among those alternatives. Add baby aspirin a day, and you have reduced the ability of the blood toclot and block blood vessels significantly. Not as much as with coumadin, but with a much better rick/benefit ration.
Opinions are like certain parts of the anatomly. Everyone has them. But there is the physicians desk reference, and MEDLINE, and I urge and patient to do their own research as to the risks and benefits of any form of treatment.
If you have used a computer to get here, you know how to use a search engine. Perform searches on Coumadin and mortality. Read the New England Journal of Medicicine March 31, 2005; 352:1305-16. It's a study on the risks of warfarin. One of many.
The plan of care should include small goals. These goals could be as simple as getting the patient to peel a banana by themselves, or raise themselves to the sitting position. They can include reading from a dry erase board. Or answering questions on a dry erase board by nodding the head or pointing to "yes" or "no". Or using a spoon. Or holding a cup. These goals should be written down.
Regaining the ability to swallow is another goal.
Exposure to daily stimuli such as television or trips outdoors constitute goals.
The ability to walk is a goal. Or to turn the head. Or to exhibit facial expressions.
The aides should have a mental mindset that their goal is to rehabilitate, rather than maintain the status quo.
Many strokes involving bleeds result from simple vitamin K deficiency. Those who have suffered such strokes should insure they take a daily multi-vitamin containing K. It need not be a separate vitamin. The vitamins are best administered to a stroke patient by crushing and moxing into hot chocolate.
Thank you for your "book" response.Indeed you did your research as did I. I beleive many people do know the facts,the problems, concerns, etc. for coumadin. I believe the best medicine is to calm people down and look for the postive. I used to be a realist until I had a stoke,now I am optomistic. There are good and bad medications with all kinds of side affects. It is also good to have a Dr. you can trust and a coumadin nurse you can trust.If no one is happy they should switch ASAP.If you always focus on the negative, negative things will happen to you that's just the way it is. Also, I really suggest having a counselor (shrink) affiliated w/ your Dr. All the questions and concerns you have about your illness with your permission is told to your Dr. and it will m ake you feel much secure.
In the United States care is very structured, and caregivers are reluctant and legally constrained in exercising iniatives. There has been neglect in setting up nursing certification specifically dealing with the stroke damaged elderly patient. This is being rectified. Then too, the stroke damaged patient often comes with what some call "the package". This may range fromorganic brain syndrome to Alzheimers. You add to that a frightened family (perhaps elderly themselves) who are reluctant to do anything to harm their loved one. This is a litigenous society, and this too affects stroke care and rehab. Example: A stroke patient is bedridden or in a chair , but is fed at a table to which they are brought in a wheelchair. The patient becomes extremely agitated at wearing a seat belt. The nurse in charge refuses to permit the patient to be moved in the wheelchair without the belt. Apparently, the company for which she works puts out a booklet of rules regarding wheelchairs. When being fed the stroke patient is under constant supervision and in no danger of falling out ofn the chair. This becomes an issue that is eventually resolved by the family threatening to change health care providers unless the seat belt is removed during feeding.
If the patient is accepted to a rehab nursing facility the care is structured and productive.
But if the patient returns home, the family is often left with an "aide" whose job is often defined by their employer. These rules often conflict with common sense.
The aide should massage the feet at least once,preferably twice every day with foor cream. This stimulates circulation. The foot should be flexed. It is sometimes helpful to roll a cold can of soda under the feet, which produces a helpful contraction.
The plan of care should include meals at regular times, but with an exception. If the stroke patient is too lethargic to be fed the meal time is moved up. The aides should not be allowed to set their own feeding times.
Toilet time is every morning, thirty to forty minutes after a meal, and before bed. There is a reflect that is initiated thirty to forty minutes after a meal that assists in bowel evacuation.
The aides must maintain alog book in one of those permanently bound children's notebooks with the black marbalized cover. No erasures are permitted. Only crossouts. When medication of supplements are administered this must be noted in the book. All bowel movements noted as to quantity and consistency. This logbook should contain a daily hydration log. It is not satisfactory for them to say "Your mother had PLENTY of water."
The best way to do that is to exclusively use two ounce plastic cups, which sell for about eighty for a buck. The two ounce size is nice because if there is a spill there won't be too much spilled. Plus the cups are easily handled by someone who may barely be ableto use their hands. And you can provide them with a choice of at least four different liquids at every meal. When the cups are drained they are stacked next to the bed table and at the end of the day you have an exact fluid intake count - to which you add the amount from soup or jello.
The plan of care should include daily foot massage and foot flexure. Pay special attention to having the toenails clipped by a competent podiatrist regularly. An ingrown toenail is a disaster.
A large goldfish in a tank is a good aid to rehabilitation. They are colorful. You can get fish that seem to have smiles. With assistance the stroke patient can feed them. The lighted tank provided comfort next to the bed at night. The feeding of the fish (with the assistance of an aide) becomes part of the daily rehabilitation plan.
The patient should be allowed choices. As an example, when getting dressed offered a choice between two dresses by the aide. Not simply provided with a dress.
One of the big difficulties involving stroke patients is their feeding. If the swallowing ability is compromised, not only do you have to use stroke friendly foods, you have to take a long time feeding them. How long is long? With my 101 year old patient it is not abnormal to take an hour and fifteen minutes for each meal. Rushing meals is an invitation to aspiration pneumonia. I often wonder how many nursing home patients end up on tube feeding through a surgical opening simply because the staff don't have the time, energy, or inclination to properly mouth feed. Getting that bolus of food down into the tummy can take a long, long time. And just because the patients mouth is open, it doesn't mean they are ready for another bite of food. "Force feeding" is out of the question, but most home health care aides will brag about their ability to "force feed". Meals should be part of the rehabilitative process, and not merely a way to obtain nutrition.
Treating the stroke disabled with respect is a big part of rehab. Unfortunately, many aides talk baby talk and treat a person who is unable to communicate as if that person has no brain. Baby talk is O.K., if lovingly provided. But never underestimate the ability of the patient to completely and fully understand what is going on and said within the room.
Lots and lots of tender loving care is in order. You can never give too many hugs.
The American Geriatrics Society, The Empire State Building, 350 Fifth Avenue Suite 801 New York, New York 10018 publishes some boilerplate patient "Plan of Care" material. their e-mail is ***@**** It is worthwhile to visit their websit, joing their organization, and read the material they have collected.
Difficulty in swallowing is one of the problems associated with strokes. The treatment is often counter-intuitive. For example many stroke patients have difficulty swallowing thin liquids. If a patient has difficulty swallowing, an improperly trained aid willimmediately follow up the problem with a "sip of water". In fact water may be contraindicated. A half teaspoon of cold apple sauce usually does the trick. Coldorganic applesauce should be a staple, as well as mashed potatoes with butter and gravy.
The textbooks have a specialist evaluating a stroke patient and then prescribing a diet. In fact, though the level of dysphagia may vary. Some days the patient may not be able to swallow water. That afternoon the swallowing may improve. The next day it can regress. The aids should be able to recogize when food is being cheeked or spit up and immediately stop feeding and revert to a "thick" diet.
Thickened liquids are preferable "thin" liquids. Cold and warm foods preferable to room temperature foods. Mildly spiced and seasoned foods preferable to bland foods.
I have to mention another issue, which is part of the plan of care. That issue is that THE PATIENTS MORALE COMES BEFORE THE PLAN. That means that is a relative is visiting that can hold or cuddle or interact with the patient, that relative should visit with the patient regardless of the time of night or day, within reason. Many organizations that supply health care aides set (gasp) visiting hours. You will find the door to the patient's room closed at four P.M. and not opened again until ten A.M. I do not permit the door to be closed (exept during periods demanding privacy) from 8 A.M. until 10 or 11 P.M. The plan of care should encourage visitations. You have heard about Carpe Diem. When, during stroke recovery a patient begins to talk, all attention must be IMMEDIATELY directed to the patient, and the laundry goes into priority 78.
Thanks for all of your helpful advice. My mom is two months post Basil Ganglia hemorraghic stroke. She is going well but does not have movement of her left side. She is in rehab and getting physical therapy everyday. I asked her nurse about hydration the other day. I noticed a feeding bag but no water bag. The nurse said the feeding bag was all the hydration my mom needed. Should there be a water bag attached too?
I am going to ask them to give her the supplements you metioned too.
There is a great deal of difference of opinion insofar as hydration needs. The main advocate of increased hydration for stroke recovery is an Iranian physician named Batmanghelidj, who wrote a book on the human body's need for water. He has convinced me, but a large number of United States physicians regard him as a bit of a quack. It the protocol doesn't require a prescription and a high priced drug it couldn't be any good, could it?
Well...you pose an interesting question. Theoretically, all hydration needs are being met. Also the enteral feeding protocols are written in stone for the nurse and she will probably not pay attention to your interventions. Nevertheless, to clear metaboloic wastes the kidneys must excrete 700 ml of fluid per day and I will be this is not true under most existing enteral feeding protocols. In general, the existing protocols are inadequate with respect to hydration. Does this mean the patient is being endangered? Probably not, however a bit more fluid is generally desired. How to go about getting this through the thick heads of those providing the care? I don't know. They will treat you like a mushroom. Keep you in the dark and feed you bull ****. Just remember, the squeaky wheel gets the grease.
Thank you for everything you have written. My mother had a brain stem stroke 3 years ago when she was 52. She used to be a full-time working woman who took care of the house entirely, the cooking cleaning shopping etc while she jogged 2 hours 5 days a week, before going off to work. I am an only child. Since her stroke, she's been taken care of by her sisters, mother, and myself. She got physical therapy and massage alternate days for 4 months. Her main problem seems to be the squint of her eyes and no vertical vision, although she closes her eyes most of the time until recently where she's been taking haloperidol and can control her lids better to open them. 3 years on, she can walk, feed herself, shower herself, dress herself etc.
What she can't do is self-motivate. She can do things, but she doesn't do them herself. I don't know if brain damage has taken this ability from her, or if it's depression. A woman of such active lifestyle is now reduced to a daily afternoon walk of an hour and a shower. She lies down and listens to music the rest of the time. She has to be reasoned with or told to get up or shower or eat. And at times, coerced into it. I know it's perhaps doing more damage than good to force her to take her walk, but i feel that she's become so reliant that she may forget what it was like to be independent. We have help at home (not a nurse but a house keeper) who accompanies her on her walks etc as well as the house work. But i don't know what to do to help her at this stage and it breaks my heart. We are a middle eastern family and express love and emotion easily, and have at times indulged her. At times i feel doing too much for her may have helped her becoming careless and lazy, ultimately, for her independence. She is on coumadin and digoxin, both of which i've read up on and cause lethargy and depression as a side effect. But her doctor refuses to reduce them. I watch what she eats and have cut out all potentially vitamin K rich foods and have as a result, reduced her coumadin dosage (and could so clearly see the effect of it on her having more energy!). I ensure she has up to 6 glasses of water (as per what a kinesiologist we saw recommended) and know her energy levels run very low within 2 hours of eating. But since she never expresses hunger, feeding at times becomes a forced activity. I'm writing all i can to see if you can help. We live in South East Asia and there is no integrated post stroke care. We are looking at options in the US (mayo clinic) but not sure if we should spend time, energy and money to travel there only to be disappointed. Please tell me what you think may help her, behaviourally, diet wise or physically, as i'm starting to lose hope after 3 years. Thank you.
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