Post Stroke Care

[Amber212]

I am about to bring my 89 year old mother home. It has been three months after the event and the following is part of a neuro consult--left hemisphere stroke, on CT chronic changes of subcortical white matter disease and remote focal infarctions associated with significant atrophy, significant spastic hemiparesis and language difficulty. He also feels she has reached a plateau with little expectation for future improvements. Probable underlying dementia superimposed on the stroke. I would like help dealing with her spasticity issues. They are saying she is not a candidate for botox injections. Caregiver 222, I believe, has mentioned being able to help a 101 year old. I am interested in doing whatever I can to help my mother. Are there other modalities for addressing the spasticity or are contractures inevitable? I have also read about scalp acupuncture being very helpful if performed by properly trained practitioners. She was just taken off of Prozac and started on Celexa. The Prozac did not seem to affect her depression. She has had some difficulty with vomiting occasionally since her dosage was upped. She is being fed by feeding tube. She has been rejecting the pureed food that was offered to her over the last month. She also a month ago, quit responding to the phyical and ot therapists.

[hopefullnurse]

Sounds like a very difficult situation for you.  are they rejecting her for botox because of her age and/or dementia. If so, you certainly could take her on your own to try it.  i think the cost is 1-200 per cc.   If she does indeed have dementia, that is a tough road. Do want you can and what she is willing to do.   good luck.

[Amber212]

They have not informed me why she is not a candidate, however because she has been given a grim prognosis, I wonder if they are just waiting to discharge her. The CT results were not revealed to us until this week, although the scan was performed after her stroke three months ago. They are saying now that the stroke seems to have also affected the other side of her brain which is causing her to have problems with her left hand. She was able a few weeks ago to pick up a glass and drink but is now not able to do that. We are uncertain how to address possible depression. She was admitted to the hospital prior to the stroke because of obvious symptoms but the MRI showed nothing. She was sent home and then returned because of increasing difficulties. The major stroke occurred in the NICU the second night of her stay. I was told she was not a candidate for the clot busting drug, tpa. I would like to know why there is such an ad campaign out there for you to rush to the hospital if as I was told, she could not have the drug and that it only is useful in a minority of cases. All of this seems very confusing. Thanks for any advice anyone can offer me at this point in time.

[vja]

Hi Amber
I hope my experience can help you a little.  I am 60 years old,
live in California.  My mother was 87 when she had her stroke, she is now 90 and will be 91 in March.  It was a very serious clot, the Dr. said it affected about 70 % of her brain. She is left right side paralyzed and has aphasia (she cannot speak, read or write).  Her cognative skills are minimal, she cannot even tell yes from no.  Prior to this she was independent, living in her own home in San Francisco.  She fell on her neighbors stairs when she had her stroke, they called 911, she was taken to the hospital.  My husband and I drove up from SJ about 50 miles away.  When we got there, the nurse told us, "it was not a bleed, but it would be too dangerous for her to do TPA"  I also do not know why they would not do TPA, was it her age?, was it that they did not know her medical history? Anyway,
they just let her "stroke out," which left her in the condition she is in today. After 3 days in a Kaiser Hospital (HMO), they told us she would have to leave.  We either had to take her home or put her in a nursing home.  Of course, this turned our world upside down.  We had no choice of nursing homes. We had to put her in the only one that had a bed in San Jose near our house.  We were in shock.  This was after she had failed three
swallow attempts in the hospital.  They were going to put her on a feeding tube.  They were testing her swallow with ice chips..this is WRONG!! finally a speech therepist tested her swallow with a thickened yogurt type mixture.  Mom swollowed pretty good.  We were saved by the bell, right before she was to have the feeding tube put in.  Off to the nursing home..more problems of course.  Mom would not do any physical therepy, speech therepy or occupational therapy.  My husband and I were there every day and night.  Mom slept most of the time, which they do after stroke.  All we heard was "Medicare Guidelines". That meant if she didn't do physical therepy etc. she would have to go home or go into "long term care." which Medicare would not pay for.  She had to show "progress" or get out of rehap.  Well she developed pneumonia, but the Dr. at the nursing home who was supposed to be there but never was perscribed Robitussen.  A little CNA finally told me Mom had pneumonia and to DEMAND a chest X-ray..which I did. yep she had pneumonia..got that cleared up and they were ready to send her home.  I argued and fought for her to stay in the nursing home and get physical therepy as she could not do it before when she had pneumonia.  After a long hard fight they kept her a little longer, but still no progress.  While all this is going on, Mom is depressed, crying, apathetic and not trying at all to do anything.  The nursing home is parking her in the lobby every day so they can babysit about 12 people at once, they were NOT keeping track of her BM's or anything else that was going on with her.  The Dr. could never be found.  I knew we had to get her out of there.  We got her into an Assisted Living Place, very expensive $4500/mo. Medicare does not pay for this.  She stayed there approximately a year with my husband and I there both day and night, since Mom could not speak, she could not ask for anything, so they ignored her or forgot her in her room. We had to be there ALL the TIME.  I had to quit my job. My husband went there after working all day to see she got dinner.  We hired our own physical therepist who was very good, but still no cooperation on Mom's part.  She was either depressed, obstinant or apathetic.  I took her to accupuncture
many times..she fell asleep on the table.  These accupuncturists were supposed to deal with people with stroke.
Well they told me she needs to walk and more DUH!!! I knew that, but try to get her to try.  The accupuncture worked slightly on her speech BUT IT FADES.  In other words, after a treatment she would try to speak for about two days, then nothing again.  We finally gave up on that.   Speech therapy was
also useless.  Mom could not do it and was not willing to take their tests.  She could say the days of the week and count.  It seems they can do anything from ROTE or AUTOMATIC memory.  After
a year of Assisted Living, my husband and I could not take it anymore.  We moved us and Mom to our vacation house which was bigger than the one in San Jose.  I hired a caregiver from an agency.  Now the agencies are another story.  They charge the family about $26/hr. and pay the caregiver $8/hr., so they are ripping off the family and the caregiver employee.  They could not keep the shifts covered and usually sent out "babysitters" not "caregivers".  Babysitters do not want to change Depends and usually don't want to cook, do physical therapy or "work in general". They just want to sit and watch TV, while you go shopping etc.  All the work is still up to you!!.. A caregiver does change Depends, do showers, cook for the patient, write a log, keep track of BM's and medication.  After a while with the agency not being able to cover the shifts for send qualified personnel, I started looking on my own and found that qualified caregivers were very happy to work for $14/hr, not $8 and were happy to have to take care of only one person not 10.  My advice to you to find caregivers is to advertise in nursing homes and hospitals.  There are people out there who love this type of work, believe it or not.  On top of all this moving Mom in with us was also very,very stressful.  Although she was majorly disabled, she still maintained her personality.  She wanted to be the boss, did not want me telling her what to do and does not want to do anything but lay in bed, be fed, washed, and wheeled around in a wheel chair.  Trust me on this and don't forget it YOU CANNOT DO THIS WITHOUT HELP AND DO NOT FEEL GUILTY THAT YOU CANNOT DO IT.    I know she is your mother, but taking total care of a person by yourself will SUCK THE LIFE OUT OF YOU AND YOUR FAMILY AND YOU WILL DIE BEFORE HER.
Mom is still with us.  I have 5 caregivers that work different shifts..all from 9-5p.m.  My husband and I have her from 5 at night until 9a.m.  She sleeps all that time.  She does not want to be part of the family and will not eat with us.  The caregivers take her out to eat..don't ask me why she will not eat at home.  Taking her out just costs us more money.  I know I sound a little resentful and I am.  My mother could not make this more difficult on us if she tried.  My husband and I have given up our lives and our privacey in the house. We cannot go out after 5p.m. at night without hiring another babysitter which often is too much trouble.  The caregivers cost us approximately $2900/mo., plus heat and electricity is up to keep Mom warm and her laundry going 24/7..she is of course incontinent.  I have learned A LOT ABOUT STROKE in the last 4
years.  If I can be of any help to you, please let me know.  I know what you are going through and I KNOW IT IS HELL.  My heart
goes out to you, as I have been through it.  PLEASE, PLEASE,
THINK OF YOURSELF FIRST AND DO NOT FEEL GUILTY.

[vja]

I forgot to tell you. My mother is also on Prozac for depression, with no side affects...seems to help a little, at least she is not crying all the time.  As for the spaticity and tone in her affected side, we ARE doing Botox treatments.  If your mother has spaticity SHE IS A CANDIDATE FOR BOTOX. Medicare WILL pay for it.   You have to go to a Neurologist and tell him you want it.  My mother could not get her foot/ankle into her AFO (ankle foot orthotic) due to spaticity.  She cannot stand or walk (with maximum assit in walking) without the AFO.  She cannot even do transfers without the AFO. So if we could not get the AFO on her foot due to spasticity, she would be bedridden.  She gets shots in her calf area about every 3 weeks and in her arm and wrist about every 3 weeks, alternating between calf and arm.  If she does not get it in the arm, her hand fists up and she cannot open it, no matter how much PT we do with it..if she cannot open her fist you run into more problems, nails digging into palms of her hand and fungus from mositure in the palm.  DEMAND THE BOTOX!!

[Amber212]

Dear vja,
Thanks so much for your post. I am so sorry for what you have been through. I am very aware of the danger of caregiver stress. My sibs will be backups and for now we have an agency. Until I am there, I won't know how well that will go. I will keep everything you said in mind, including the Botox. My mother, like yours, was independent prior to the stroke and her personality sounds a little like your mother's. I will be handling things on my own with the help of the cna's, friends, a few relatives. I am moving there from another state and bringing a bike and a horse eventually. I hope with the help of others to do a little of those recreations to maintain some sanity. I know I will be giving up my life for a while but it was that or put her in a nursing facility which she detested. I know how those places run having done some home care as a respiratory therapist. She has not been very responsive lately. Her CT scan indicated white matter disease which explains some of the memory deficits over the past year. The acupuncture I have read about as being effective for stroke was specifically scalp acupuncture. I think the foremost doc is in Calif--San Jose, Zhu's Scalp Acupuncture. Have you tried this? I did not care for the doctor who told me Mother does not need Botox. I have never been one to take no for an answer without good reason. Anyway thanks again for your support.

[vja]

Hi Amber
The fact that you were a respiratory therapist gives you a real
headstart on knowing how to handle doctors and what nursing homes are really like.  I had never even been in a nursing home
before Mom's stroke...whew, what a shocker.  Anyway re the accupuncture, I happen to have a San Jose phone book here and there is a Zhu's Acccupuncture Medical and Neurology Center at
100 O'Conner Drive in San Jose...this is at O'Conner Hospital,
their phone is 408-885-1288.  I took Mom to an accupunturist who
also specialized in stroke..they put the needles in her scalp,
face,tongue,leg, ankle. It did help a little, but not enough to
make any difference and it the effects did not last.  We went
twice a week for over a year while in San Jose.  If you go ahead
with this, I would be interested to know how it works for you.
Keep in touch.  Good luck and take care.

[caregiver222]

My sweety-pie 101 year old pal will be 102 years old on March 12th, 2007, and she spent the morning cuddling in my arms. She has a phenomenal appetite and is able to feed herself. Her favorite is Canadian Turbo Filet, that I bread with butter and organic egg and chopped garlic and maple syrup and cheddar cheese. She ate the whole filet by herself! This fish is very protein rich and melts in your mouth, and is of an excellent consistenty for a stroke friendly meal. She has lost most of her ability to swallow. She can read aloud from a dry-erase board, albeit very slowly and deliberately, and when you write "Yes" or "No" she often smiles and answers "maybe". This is a woman who, for a period, could not respond in any way to someone approaching her, nor say a word, nor feed herself. nor recognize a written word, nor respond with any facial expression. It takes a lot of time and all strokes are different, but don't give up hope.

[caregiver222]

I should correct that "has" to "had". She regained the ability to swallow, but it took a lot of doing, and many three hour long meals and feeding sessions. Feeding is always a problem and the health care aides and nurses do not have the time or patience to do this properly, and you sometimes have to wait ten minutes between spoonfuls or risk food entering the trachea and producing pneumonia. She is no longer incontinent, and enjoys attempts at walking with assistance. Every day is a happy one with smiles and laughter. Never assume that the person who has had a stroke cannot understand every word said in the room, even though they may not respond.

[Amber212]

Hi vja--yes having my medical experience was part of the reason I volunteered to move Mom back home. In one place, there was one nurse who dispensed meds to everyone. Not much personal attention. The acupuncturist I mentioned is reputed to be the one to see for the scalp acupuncture. I have not contacted them yet.  Caregiver 222, how did you achieve what you have with this lady? I can do the  slow meals with Mom. They seem to be planning to do a trial of bolus feeding and taking her off the tube. Since she has been refusing food offered in the unit, I am concerned about her intake off the tube. Any advice would be appreciated on this. My brother has consulted an ethicist on the issue of not putting her back on the feeding tube if she refuses to eat at home. He seems to be planning for failure...The fish recipe sounds wonderful, very gourmet. Since I love cooking, I am hoping to stimulate her appetite again. Any thoughts on the botox injections anyone? They are now using soft braces on her affected side. I don't know of anything else they are doing to treat the spasticity. Is contracture inevitable? How do you do meds if not on a feeding tube? Her swallow is probably weak. At one point they said she had no gag reflex. Anyway thanks everyone. Amber

[Amber212]

Plans are to discharge Mom Jan 19. They are going to do a trial of bolus feedings. My brother is now going to consult with a medical ethicist about removing the tube permanently if she refuses to eat. How did you, caregiver 222, achieve these results? I am not giving up but am concerned about her eating and getting meds down properly. I understand the long slow meals anything else that is magic? Any thoughts on the botox injections? Hi vja, yes having some medical experience should be helpful. As a home care therapist, I saw a lot of different situations, the most poignant being a son in a trailer taking care of his mother who had Alzheimer's. He kept her clean, bathed and dressed her, did her hair. I will never forget the love displayed in that trailer. Daughters taking care of a frail mother who continued to quilt ferociously. People clinging to life despite the horror of barely being able to get a decent breath due to pulmonary fibrosis, a 98 year old who came to the hospital to die and survived anyhow. Life is unpredictable--I learned that dying is not predictable either in many cases. Like the copd'er who went on and off vents and suctioned herself while watching old movies. All people who loved their lives in spite of their frailties. Thanks for the input vja and caregiver. Amber

[Amber212]

Sorry about the repetition with those posts but I thought one of them did not take. Also I am a little tired. Anyhow the questions are the same.

[vja]

Hi Amber
I don't think contractures are inevitable, but I do think spacticity in the affected leg is, unless you can get her to stand with a brace AFO and put weight on the affected leg..weight shifting back and forth is a good excercise.  If she does not do this, what happens is what they call foot drop..the foot points down and rolls to the outside.  She cannot stand this way without breaking her ankle and it becomes very difficult to get her foot in the brace AFO.   You have probably seen this on other stroke patients in the nursing home.  This is where the Botox comes in.  After Botox shots, we can get Mom's foot in the AFO and she can stand and put weight on her affected side although she is very hesitant to do this out of fear of falling.
We have her hold onto a pole and try to get her to do some weight shifting.  Botox does help spacticity, but you have to keep doing the shots...they wear off after about 3 mos. and the
spacticity/tone comes back.  Re the meds, you pulverize the pills and put them in some pureee food if she can take the puree food.  I hope this helps. Vicki

[caregiver222]

It takes a very long time to re-develop the musles necessary for swallowing, and to be honest, none of the specialists in the nursing homes I have worked with seem to have the hang of it. There are a number of rules that are helpful. First off, never feed in bed. The patient should be in a chair most of the entire day, and not a wheelchair. Every case is different, but there is almost njever an excuse for an enteral tube except lack of professional nursing care and time and expertise. There has been no real nursing speciality dealing with the care of the stroke damaged elderly. To develop the swallow reflex you need thickened foods that have distinctive tastes. Bananas are good. Split pea soup is good. Fish filets that turn to paste in the mouth are good. Ground meat spells trouble, for some reason. Almost always, the aides/nurses attempt to "force-feed", which is apparently taught as a technique for feeding the elderly. It is contraindicated for stroke rehab, and will almost surely result in aspiration of food and pneumonia. When I started with my little pal I banned insure, for starters. You should get a small silver teaspoon. Silver is an anti-bacterial. Initially my 101 year old (she was 100 then) could not respond to stimuli, turn her head or lift a hand. It was months before she uttered a single word. I just left her an hour ago and she said "I'll bet you want to go home now. It's O.K. But please come back."  This absence of communication can be very discouraging, and the caregivers get burned out, and tend to treat such patients calously. You feed a tiny half teaspoon of food, and then you don't provide the second teaspoon for ten to fifteen minutes. When you re-develop the swallowing muscles, they will fatigue easily, just like when you do excessive push-ups. If you strain them, you are behind the eight ball. If the muscles are strained, you have to give them a rest and this is difficult.  I have never seen this addressed in the nursing texts. Remember that these ,muscles  haven't been used in a while and have partially atrophied. To build to a hundred push-ups you never do push-ups to the point of exhaustion. You can use "spitting up food" as an indication that the feeding is proceeding at a rate that is far too fast.  You need to keep an accurate log of the feeding process, and also a hydration log.  Liquids should be in two ounce plastic cups only. A minimum of four varieties of different flavored liquids at every meal. This makes it easy to keep track of fluid intake. Thin liquids are contraindicated. This doesn't make sense, but thin liquids apparently do not stimulate the swallow reflex. Scrambled eggs are excellent, if properly prepared. Not fried eggs. Use an iron frying pan and a wooden spoon and keep pushing the mixture until you get a fluffy egg, and flavor it with pure maple syrup over the top. Initially, instead of three meals, I tried a tiny spoonful every half hour. There is the swallowing and the transit time of the food down the esophagous to be considered. Initially that transit time will take quite a while.

[Amber212]

Thanks, Vicki. Putting the meds in her pureed food makes sense. Mom has boots made for her for the foot drop. Since they stopped pt, she has not been doing any standing. I will be talking to the therapists next week about this. Caregiver 222, yes I have observed this situation in the hospital. Also, the morning Mom vomited, an aide told my sister she would get her to eat!! What type of liquids ?  Why do you not like insure? Do you use those thickeners? Also, how do you measure i's and o's at home? I guess obviously by the two ounce cups. Why is the wheelchair not good? Also since my mom can not sit up by herself, do you recommend a certain kind of chair? I was told in NICU to have her sitting up at a 90 degress angle during feeding and for half an hour afterwards. How do you graduate someone from the peg tube? Also, given the problem you mentioned with caregiver burnout, how did you manage to help your lady? Any special kinds of activities or stimulation? Is it just that you were able to be patient and kind? If you are feeding a small half teaspoonful, how do you manage to give enough nutrition? Should I measure her food intake? Is cottage cheese good also? Mom is incontinent now. Should I try to sit her on the bedside commode at certain intervals? Thanks, Amber

[vja]

Hi Amber
I can only tell you my experience.  As Caregiver 222 said, the patient should always be sitting up at a 90 degree angle to eat.
Liquids should be thinkened..yes, use "Thicket."  You can get it at any medical supply company.  You can put it in anything, it has no flavor, but it does thicken the liquid.  As to sitting in a chair, not a wheelchair, I believe that is because wheelchairs become very uncomfortable..they have a bar across them that is not comfortable..you try sitting in one for any lenght of time and see how you feel.  If you can get her to transfer to a comfortable lounge chair that sits straight up that's the way to go..we have one that electrically sort of stands Mom up, called a lift chair to transfer her to the wheelchair.  Caregiver 222 knows a lot more about feeding than I do.  I know Mom started on puree in the nursing home after the hospital with "thicket" in the liquids..she then progressed to something like finely chopped up food (there is a medical name for this type of food, but I forgot what it was)..its like food that was processed in a blender..then gradually after about 6 mos. she started on real food, but we still have to be careful with meat as she does not chew her food..kind of swollows it half chewed..she only has an upper plate and a few bottom teeth.  She can feed herself with her left hand, but it takes a lot of coaxing.  I am sure she would rather have us feed her like a baby bird, but you have to let them do all they can for themselves even if it is faster for you to do it.  Believe me it takes the patiebce of a saint to deal with stroke patients, and it sounds like Caregiver 222 has that.  I on the other hand have hired caregivers as I do not have that much patience. They do a much better job in taking care of Mom than I ever could, but she is clean, fed, safe, loved and in a home, not a facility.  Good luck.
Vicki

[caregiver222]

"Thicket" is a great idea. Remember that the stroke causes a delay in responding. I started out both verbally telling mjy pal that she was going to get a spoon of food and then writing it on the dry-erase board in big block letters, telling her what the food morsal was. For a long time she had peripheral vision problems. Another issue. Thus the spoon of food had to be shown directly in front of her for a few seconds. I would bring it up under the nose for her to sniff. Then back for her to look at. Then approach from a position below the chin, touching the lower lip. I would then tell her to "Chew" and use the dry erase board to state "Chew" and "swallow". For months there was no indication she understood everything, but she did chew and swallow. Aspiration of bits of foor or liquids into the lungs through the trachea and the biggest danger, which may necessitate a hospitalization. There is a drill they have, increasing the density of the foods. Think about foods that become pasty. I especially like home-made pea soup because you can vary the consistency. Plus, it can be extremely nutritious. If you make bean soup soak the beans overnight with a piece of fresh cut ginger. This cuts down on the gass, which causes discomfort. Puree the soup. Purchase thick tofu (it comes in several consistencies) and you can cut it into tiny squares. From when I took over I make sure meals were at a table, properly set, with flowers and plates. Initially I started out with clear pyrex glassware, because the dishes had vertical sides against which she could learn to push her spoon. Now she had graduated to regular plates. Do not feed when the patient is "too sleepy". This is another issue with the aides and health care personnel. The circadian sleep rhythym is likely to be disturbed and mjust be reset, but that is another post. No laying down for an hour after eating. The natural reflex to defecate is induced 30-45 minutes after eating and this is the time to try for a toilet. Plenty of hydration will eliminate stool softeners. I took my little friend off laxatives and stool softeners a year and a half ago. Very ocasionally a stool softener may be indicated. Proper hydration is a necessity. The aides MUST maintain a hydration log and a bowel movement log. Yogurt is good. Lots of aural and visual stimulation during the day. If a television is not available get earphones and have the patient listen to radio where there is talking. Have her ears flushed with DEBROX. She is also likely to need her toenails clipped, and this should be done by a professional. Also have her nails done and make sure attention is made to her personal appearance. I banned "hospital pajamas", and every day after breakfast she is inspected. It should go wihout saying that there is no excuse for a urine smell in the room. No bed feeding under any circumstances.

[caregiver222]

I might add my little pal loves hot chocolate and ovaltine, although at first she had problems. You want a shallow cup with a large handle. Not a deep cup. For the same reasons glasses are contraindicated. You want to purchase a large quantity of tiny two-ounce disposeable cups. If there is an accidental spill there won't be much damage and they "tilt" easily. Plus, you can monitor fluid intake by having the aides save the cups. Small ieces of banana are great. I make sure to have a "perfectly ripened" banana ready every day in the "ready tray". This involves some waste of bananas. The banana should be served in no more than one to two inch pieces. Not a whole banana. Every piece of banana is useful as a training tool to handle food and to swallow. I cut and skin the bananas, then pat a small amount of nutritional supplement on the banana, then rewrap it and she delights in removing the skins, although this was beyond her for many, many months. Observing the fact that she attempts to put the banana into her mouth without removing the skin as an indication of consciousness. Be very alert for sunlight sensitivity, which is suggestive of a bleed. I just spent the afternoon with my little pal cuddling against my arm watching television. Keep the television on loudly. Aides have a tendency to turn it down because it interferes with their cell phone conversations. The aides position is in the room next to the patient at all times, hopefully holding her hand or putting a hand on the shoulder. Not four feet away.

[caregiver222]

The other things to suggest involve "miming". That is to say, eating food yourself, or at least making believe to. There is often a "delay" in conveying information to act upon in stroke survivors. It takes longer for them to process information. From the beginning I started with a regular table with a place setting. Not a teensey bowl held out of sight. There is pavlovian conditioning involved and the image of the place setting makes the event a significant one. I want all three meals to be significant "interactive events". Avoid conversation when the patient is attempting to swallow. No television during this time. And I bring the meal in front of her on a silver tray for her to see and smell, then move the tray to the table. We thern have "walking practice" to the small four wheeled wheelchair, deliberately set a distance away. Then she is encouraged to use her feet to "walk" the chair to the table. When I first gor involved I noticed the aides would push her to the table, then go and get a meal, leaving her staring at nothing. I made this a dismissable offense. Also, at the end of feeding, she is returned to her "chair" before the dishes are removed. This involves another "exercise" period, in which the small wheelchair is placed a measured distance from the "TV chair" and she is "walked" back to the chair. This provides a minimum of two exercise periods for every meal. If there is enteral feeding, and you want to try to develop regular eating there is another minor, but significant issue. Some enteral feeding mixtures contain concentrations of amino acids that depress the appetite. My little 101 year old pal continues to "grow" verbally, surprisingly enough, and her verbal comments have made her a happier person to take care of. She loves buttery foods, which are discouraged in the "health diets". She also asks for salt on her hard boiled eggs, which I also provide. Too much attention is given to eliminating salt from the diet. In no case is she given foods containing Monosodium Glutamate, which, as a matter of record, caused brain injuries in 100 percent of the lab animals who were fed MSG on a test diet, interestingly enough. She is gaining weight.

[Amber212]

Thanks so very much for the posts. I am keeping them in a notebook for reference. I found some small silver spoons to use. Vicki and Caregiver, thanks so much again. I will be in touch but will be moving over the next week. Vicki, I don't think I have Caregiver's patience but I am learning so much that is hopeful. I will be relying on you both if that is ok as I begin to care for Mom. Thanks for the brand advice on the thickener. In the hospital, they have been turning her every two hours. Do you have to continue this at home or can they let her sleep through the night? Maybe she does not wake up when they are turning her anyway. Caregiver, I think you should do a book on stroke care for the elderly if you have not already. Anyway, thanks again, Amber

[vja]

Hi Amber
Re turning every two hours.  If your Mom has NO bed movement as mine does.  In other words when you put her to bed at night, she is in the exact same position in the morning, you do have the potential for bed sores which of course, are horrible things.  Turning her every two hours is virtually impossible.  You would get no sleep and if you are the only one taking care of her, there is no way you can do that.  If she does have "bed movement", by all means let her sleep all night.  If she is incontinent of urine, use Serentiy pads (which are like femanine
hygiene pads only thicker) inside the Depends.  We put two on Mom at night..two Serenity pads inside the Depends.  We also put a lot of A and D ointment on her.  This was taught to us when she was in the nursing home right after the stroke.  It acts as a water barrier and keeps urine off her skin.  As for the "bed movement" problem, we first had Mom on an airmattress that goes ontop of the hospital mattress..it has a lot of little pillows, that inflate and deflate at different times to help prevent bed sores.  Since my Mom does not move at all in bed, we have changed to an Invacare Turn Q Plus bed..you can look them up on the web and check them out.  They are expensive.  It is actually a mattress that replaces the regular hospital mattress.  By inflating and deflating the left and right side alternating every two hours, it turns the patient from side to side.  They use them in hospitals for paralyzed people like Christopher Reed.  They usually don't use them for stroke patients, because of the expense and stroke patients can usually get in and out of bed which helps prevent bed sores.  I would recommend the Turn Q Plus mattress by Invacare, they cost about $5,000, but they are a lot better than the little pillow mattress cover.  Hope this helps.
Vicki

[Amber212]

Hi Vicki,

Thanks for the advice as Mom is incontinent. We will have aides 24/7 as I will be alone there. I am a little concerned about what you said about agency help. Caregiver said that the aides should stay within four feet of their person which I agree with. You mentioned hiring people outside an agency. What do you do with insurance for them? I mean don't hospital aides receive health insurance? Basically, how would I be able to get good people without offering benefits? I know one aide now that is terrific and a hospital employee. I don't think she would give up benefits to work for us. Any thoughts on this? I am very concerned about being dependent on an agency. I expect a high standard of care. Thanks, Amber

[vja]

Hi Amber
Glad to hear you will have help 24/7..we have help only from 9-5p.m.  Agencies can be good and bad..they are more expensive than hiring yourself, and the sometimes provide good help and sometimes not...the same you would run into if you hired yourself.  Your caregiver has to be patient, compassionate with your Mom and also be able to get along with you.  You will know when you have a good one..you kind of get a "gut" feeling and you have to keep an eye on them until you are sure they can handle the job..it is not easy..you are now a "supervisor"..something I never wanted to be.  Re the insurance/benefits issue..I have workman's compensation on my homeowners policy...this is an easy thing to add on...as far as medical and dental..they are on their own..as are many people today.  Be sure and have a lot of liability and workmans comp on your homeowners policy.  I hope this helps.  Vicki
PS We pay our caregivers $14-$15/hr. which is a lot for our area.

[caregiver222]

We have a paid-up workman's compensation policy for household help. There are no health benefits, but a ten dollar a day meal allowance. Pay is ten dollars an hour, with a W-2, and the aides generally get two periods off every day, 1 1/2 to 2 hours every morning and 1 1/2 to 2 hours every night. In practice this usually ends up in 3 hours outside the apartment 3 days a week. There are plenty of good people out there for ten dollars per hour. I would not go near any of the agencies with a ten foot pole. The next federal investigation and indictment should be of these agencies. One of the fastest growing with the best internet presence is one of the biggest abusers of the elderly. They employ $200 an hour "social worker coordinators" they bill you for and show up with an array of people from central casting in appropriate "costumes". (i.e. "Nancy nurse", R.N.) The aides tend to "burn out" and you should be prepared to get enthusiastic people and then they go on to other things. I just spent the morning with my "pie" (short for sweety-pie). I cooked her salmon with eggs and meat sauce with onions and egg for lunch. The ability to handle meat sauce is a recent development. She just couldn't manage to swallow it. Her language ability is steadily improving, incredibly.  You have to require the aides to maintain a daily notebook of all events in a permanently bound "marble cover" book with no erasures permitted. Every bowel movement and the consistency and time is notes, as well as the time changed or placed on the toilet. Also a meticulous hydration log must be kept. "Encouraging" the stroke patient to drink means more than putting liquid in front of them. It involved you "miming" in front of them showing them you are drinking liquid. Then you use two inch plastic cups. Initially she couldn't hold them in her hands, which were limp by her side. You put the cup in his/her hand and bring it to the lips. There are always four flavors of beverage. When the patient gets to the point where they will take a "sip", you will find that they usually don't want more than one sip per beverage. Thus you get "four sips" out of a "hydration session". The logbook must be reviewed every single day with questions regarding hydration and bowel movements. Aides should speak fluent english. You need to test them with "mock" drills in which emergenciers are simulated (fire etc.). When you hire an aide you should inform them their joib description is to be yourt "extensor" and while this involved primarily care of the patient, it may on ocasion involve short periods of assisting with household duties or laundry. Trust me, this is necessary to establish at once. The time will come when you will need someone to simply sit in a car, for example, and it must be clear to the "aides" that they are there to assist the family, and not just a single person.

[vja]

Amber
I agree with Caregiver 222. The agencies are out to get your money and pay the aides nothing.  They will usually send out anyone they can get their hands on.  I have had some that can't make oatmeal, or sit on the couch and drink their bottled water.
One tried to make tomato soup without adding water or milk..was actually frying it in the soup pot.  They mostly send 20 year old babysitters, not caregivers...it is a lot of work to be a caregiver and takes a special kind of person.  I learned a lot from the good caregivers I have hired.  I thought I could take care of Mom the best.  I was wrong.  Caregivers are much better at it and much more patient.

[caregiver222]

The "food" stories about the aides provided by agencies charging $18 per hour would be funny, if not true. One such aide served raw corned beef hash left out for over a day, rotten bananas, and couldn't boil an egg. The other food stories I have are beyond belief. One thing to avoid in the diet is too much cheese, which tends to bind. A half slice or a side dish every other day or so. My little 101 year old sweety-pie has developed an affinity for "cheese pockets", which she can now hold in her hands. We buttere them well and sometimes with mustard. Desert with all meals should include lots of cinamin, which helps regulate blood sugar levels. Lunch for sweety-pie today included home-made pea soup with garlic, Canadian turbot-filet, breaded and buttered, baked beans, maple yogurt, and, of course four flavors of beverage. The Canadian turbo-filet can be prepared in various ways and it is an excellent protein source. I try to make one meal of fish every single day, all boneless, or else salmon bisque (home-made) laden with salmon. She played games this morning, laughing and touching the aides (changing shifts) on the nose, as we do with her. I arrange all meals so the aides only have to pop them in the micro-wave. Breakfast is two organic eggs, plus oatmeal, plus four juices, plus a piece of banana. Tomorrow she will have a bit of corned beef hash for breakfast. The corned beef hash is good because of its consistency, which helps develop swallow ability, but it took a long while before she could handle it. She loves ovaltine, prepared and served in a small cup with a big handle. A small foldable wooden table is nearby for her to reach out and put the cup on. Every single day she is dressed perfectly, well groomed with nails done, hair done, and properly in simple wash and wear outfits. The agency aides kept her in pajamas all day.  She enjoys the new-type plastic shows which stretch to the side of the foot and have purchase on the rugs. In the hallways In installed bannisters, identical to those used on stairways. You purchase the bannister by the foot. Pine is inexpensive. Saw to shape, stain and seal, and you have attractive inexpensive handrails in the hallways. The store-bought ones are stainless steel, don't come in long lengths, and are unattractive. Jello should be a regular part of the diet for the purpose of maintaining the fingernails. Never feed while the patient is too sleepy to eat. Never. It is an invitation to food ending up in the lung and the resultant pneumonia. Think provision of hydration before provision of nutrition. Take care of the hydration first.

[caregiver222]

I don't like insure for a number of reasons. First, it is a milk product and milk is a food not well-suited for the elderly. More importantly, I view every meal as an opportunity for a "happy experience". An experience that also has the purpose of rehabilitation. Not simply nuitrition. Teaching the person to feed themselves, for example, and lift a cup to their mouths. Re-learn to use the fingers and hands. To grasp a spoon. To hold and tilt a cup. And how to use a napkin. And also for ambience. And morale. A person confined to a room has very little to look foward to. A variety of food artistically displayed is something interesting to them. A well prepared folding table, with flowers, all properly set on a tablecloth provides something to look foward too, other than simply sitting in a bed. Everything is on a new plate. I have two varieties.  like the clear glass because I know it's sparkly clean, but I also purchased bright white ware with green trim. You can do much better than insure with only a little imagination. Insure, because of its constant consistency, does not help to re-establish the swallow ability, either. I give malteds and different flavors of nutritional drink, however. The drill is to take the dry-erase board and ask "Do you want lunch now?" and underneath is written "Yes" or "No". Usually there will be a yes on the 2nd or third try. The meal is then brought in on a tray and shown. The tray is then brought to the table. The small four wheeled wheelchair is then positioned as far away as possible, and walking practice (with assistance) is conducted to the wheelchair. There is encouragement and clapping for good performance. Then there is encouragement to have the patient propel the little chair to the attractively set table. You have to "mime" everything ahead of time, or the idea won't come across. A tap on the shoulder, pointing toward the table, and you walking in small steps to the table and back to show what you want to do.

[jjjt]

44 yr old male with bi/lateral cerebellum stroke with infacts on both sides of brain stem, and narrowing of the arteries. His balance is off mostly the left side, Docs say it is rare, he was a normal healthy hard working guy, with no apparent reason for the stroke. Anyone ever here of this stoke,and if so how long before balance came back.