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Apathy after Stroke
My mother is 90. 4 years post stroke. There have been no real improvements. She lives with us with caregivers 9-5. She is right side paralyzed and cannot speak. She shows absolutely no initiative to get better. She is on Prozac and we take her to a neurologist. She is in excellent health other than the stroke. She has no desire to even try physical therapy or speech. She has her own room, caregivers and is in a beautiful area. I cannot think of any way else to give her incentive to get better. She was in an AL and showed no interest in entertainment or other people. Now she has one on one care, but still no interest in even trying to talk. It is very frustrating. I have turned her over to the caregivers. I no longer have the patience. I am sure part of it is she does not want to bother anyone...this makes it harder on us. Anyone else with sililar situation?
I don't have all the answers, but one of the things I do as an incentive to talk is to provide choices. One of the "hits" in choices involved the purchase of a number of polyester blankets about three by five foot in various colors for $3.95. They have the consistency of flannel. I have them in various colors. nGiving a choice of colored blankets when she is seated in her chair provides a means to interact, and requires her to point, or verbally indicate which one she prefers that day. They are really nice little blankets, and inexpensive enough that you can h\get a half dozen to provide variety. Lately, my sweety-pie seems to prefer two meals. This bothered me because the "waking practice" to the table was as important as the meal. If she declines her mid-day meal and wants a "snack" of yogurt, I now have the aides set the snack up n her table, so she has to be walked over to enjoy the snack, rather then get it while sitting in her chair watching television. I feel the walking practice three times a day is very important.
I established a rigorous hydration program. As a guideline, Most nursing homes recommend as a daily water ration 30cc per kg of body weight. 30cc is about 6 teaspoons, or .123 of a cup or .032 of a quart. I try for quite a bit more.
I also set up supplies to deal with an emergency without power or water. This involved putting twenty gallons of water in plastic bottles in the closet, and setting up emergency lighting for the room. I purchased two dozen "Chemical Lightsticks" on sale for a buck. Usually they are two dollars. And a dozen "fireman's flashlights". I put in the wheelchair pocket a flashlight and two lightsticks. In the room I installed a 60ABC dry chemical extinguisher, and beneath that put in a box for the flashlights and lightsticks. These are National Fire Protection Association ratings. You need an extinguisher that says "ABC" and you need at least a "40" rating with a "60" rating preferred. And I put another 60ABC in the kitchen. And put a carbon monoxide and smoke detector in every room. I also procurred some of the new battery operated LED lanterns with "D" batteries and put one in her room with three sets of spare batteries. I set up a large pantry and there was already a stock of emergency food. Then I reviewed with the aids a protocol to use if the power went off, and showed them how to use the extinguishers.
Many "problems" seem so silly in retrospect, but they involved a great deal of lost energy and psychic karma. As an example at first the aides would either not put her eyeglasses on at all, or else they would out them on for her. I got fed up with arriving and seeing her without eyeglasses, or dirty eyeglasses. One of the tasks was to get her to put on her own eyeglasses. It was six months before we could do this. And then there was a battle because the aides would put them on for her, rather than hand them to her to put on herself. You see, at first it took a long time for her to put them on. Her movements were excruciatingly slow. Sometimes she would "hesitate" and the eyeglasses would remain motionless for several seconds. This would frustrate the aides. I tried to explain that every time she put on her own eyeglasses it was an exercise in rehabilitation. One would think that this should have been said once and the concept would be conveyed. Not so. The aides would ignore instructions such as this one - in one ear and out the other. So I threw myself over the tracks. "Showing is required as part of this job. If you can't do this, let me know and I will get someone in here who can." Don't pass go. Don't collect two hundred dollars. She has been showering, with help, in a real shower for a year. I had more problems with that. Finally, it took what is called "a direct order". The order consisted of "If you can't get her to take a normal shower within the next forty eight hours and give me a complete report, you are fired." I got nonsense from the company the aide worked for, all surrounding the issue of "insurance liability". They just popped this term out of nowhere. I got a special bench, installed a ramp into the bathroom, installed special "grip" bars, and got a big hot air blow drier to use after the bath. The hot-air blow drier is a MUST, by the way. I also set up a protocol. The bathroom must be warmed with a heater. The water must be at the proper temperature before she goes on the shower bench. And I stated I wanted it to be a pleasureable experience. There was a resistance to any sort of supervision whatsoever. The standard answer was "I've been doing this job for years..."
And don't feel guilty about not spending every minute with your loved one. That is the last thing I would want. I will make note of this. As progress in rehabilitation advances, the patient becomes more fun to be with, less of a burden, and the aides provide better care. One of the big smilestones was the ending of incontinence. That made life one hundred percent better for everyone. I spend a lot of time with her, but get my own stuff taken care of too. I sit next to her and hold her hand with my left hand and I read some technical material while she watches television, for example. One thing I always do is to say good-bye and write on the dry-erase board when In expect to come back. She cannot use her hands to move the wheelchair wheels, but can only "peddle". The little sweety surprises us two days ago when we left the room. She managed to move herself and "switch chairs". We came back and she managed to be in the chair next to the one in which she usually sits, looking innocent as anything, watching television!
There is no right answer about any of these things, and there are different medical problems with different people. Nor do I intend to criticize anyone for doing things another way. Different degrees of damage and often other underlying problems make for different protocols. I prepare the meals and put them on a serving dish and put the whole thing in the refrigerator with instructions for the aides to place the dishes in the microwave for so-many seconds before serving. I don't eat with her because she wants to feed me all her food! She loves to "mommy" me. Generally I have them heat up the serving on one dish and serve it on a room temperature dish. At the beginning she was very frightened of everything and everyone. She was so scared. It took months before this behavior disappeared. We would try tpo get her to stand and she would become rigid and fight us. Approaching her too quickly upset her greatly. Time and caring took care of this. She had what were called asymetrical focal findings, which mean that one side of her body (the left) had lost muscle tone. At present another part of her brain has apparently taken over much of the lost function. The first set of aides expected nothing from her, and fed her like a bird. I told them I expected her to feed herself and we would work towards that goal. And we did. I prepare two hearty pureed soups once a week and they are served alternately. Usually pea soup and salmon bisque. She loves fish dishes and they are very easy to prepare. She also loves sardines (boneless) in mustard and tomato sauce. The sardines reduce to a paste like consistence, are very nutritious, and the spice from, the mustard seems to encourage swallowing. I initially considered an exercise therapist (a good idea that I will not discourage), but for a while hired a bouncy delightful korean girl who dressed like a fashion poster for Korea to come over and "play with her" for a few hours a week. She would sing songs to her and massage her back. "Being with such an old person is like being with a god," she told me. I hired her right then. The flounder is an easy dish to prepare and is a great souce of protein and is very "stroke friendly" because it melts in your mouth. I take the turbo-filet or flounder and rub it with crushed garlic and lemon, them baste it in beaten egg, then roll it in flour. Then put it in the fridge to "harden" a bit. I start it out in a large iron frying pan and give it about a minute to a minute and a half on each side. The pan is lubricated with a mixture of butter and extra virgin olive oil. This gives it a little crispiness. But be sure it is not too crispy. I then take it out, put it on a glass plate and "finish" it for two and a half minutes in the microwave. I let pieces of butter melt on top. Then I get the side dish prepared. She liked creamed spinich. I prepare that ahead of time and it is frozen. I heat and pour it on the same plate as the fish. So there is the main dish of fish, a side of creamed spinich, avocado, and desert of cottage cheese and applesauce. Plus the four choices of beverage. Then put it in the refrigerator to be warmed with a microwave when she is ready to eat. Every single meal she has eaten for the last 18 months has been logged by the aides, and we have a long list of exactly what she likes and does not like. I give her daily gentle massage,. but not with an electric massager. Do not use these as they can dislodge clots and cause a stroke. Also never massage the carotid arteries, as this may also cause a stroke. Every person is different and I have no answers for everything. My own mother died of a stroke a long time ago and I'm afraid I did everything wrong. She died a quadraplegic, and because the doctor talked me into an unnecessary tracheotomy, she couldn't even say good-bye. The hospitals like the trach because it enables the patient to be removed from skilled care and "warehoused". I made so many mistakes with her because I did not know any better. And yes, I expect progress with her and tell the aides so. And they have seen the progress. Her knees and legs were inflammed with the veins showing and redness. They have cleared up and look - healthy is the word. This morning I visited and she said: "My God - am I happy to see you!" We watched "ER" on television while I sent the aide out for her coffee.
One thing I would suggest to you, vja, is to hire a physical therapist for a couple of sessions in your house to check out your technique in helping your mother stand and walk. When I took care of my stroke survivor dad from age 92 until his death at 94, I never got such guidance (by the time I got to him he had been declared "plateaued" and received no further therapy), and I lifted him in ways that always wore me out and sometimes injured me.
Since I've been caring for my stroke survivor husband I've learned a lot that I wish I had known when I was caring for my dad.
Since I've been caring for my stroke survivor husband I've learned a lot that I wish I had known when I was caring for my dad.
A wonderful story, caregiver. Aside from all the info you are giving us, I suspect the fact you are spending 7 hrs/day caring for someone by CHOICE, not sense of obligation, and enjoying it to boot, gives encouragement to those of us who are caring for a stroke survivor because we have to (in the sense that we're not willing to put our loved one in a nursing home or turn them over entirely to caretakers). I also love the fact that you expect PROGRESS from a 101 yr. old! The rehab unit stopped expecting progress from my 69 year old husband in less than 2 months. (Of course I didn't accept that he has made and is still making much progress with Vasa method. And I intend eventually to apply some of the ideas I've learned from you, although at the moment the Vasa method is all we can handle.
In your descriptions of her I get no sense that one side is affected. For example, does she peel her banana with one or two hands? Does she propel her wheelchair with one foot or with two?
Your mealtimes seem unrealistic to me. You can't cook ahead of time because you don't know when she's going to say "Yes". But it would take me over an hour to prepare the elaborate meals you indicate you prepare for her, yet you sound like when she says "Yes" you very soon present the tray.
In your descriptions of her I get no sense that one side is affected. For example, does she peel her banana with one or two hands? Does she propel her wheelchair with one foot or with two?
Your mealtimes seem unrealistic to me. You can't cook ahead of time because you don't know when she's going to say "Yes". But it would take me over an hour to prepare the elaborate meals you indicate you prepare for her, yet you sound like when she says "Yes" you very soon present the tray.
A wonderful story, caregiver. Aside from all the info you are giving us, I suspect the fact you are spending 7 hrs/day caring for someone by CHOICE, not sense of obligation, and enjoying it to boot, gives encouragement to those of us who are caring for a stroke survivor because we have to (in the sense that we're not willing to put our loved one in a nursing home or turn them over entirely to caretakers). I also love the fact that you expect PROGRESS from a 101 yr. old! The rehab unit stopped expecting progress from my 69 year old husband in less than 2 months. (Of course I didn't accept that he has made and is still making much progress with Vasa method. And I intend eventually to apply some of the ideas I've learned from you, although at the moment the Vasa method is all we can handle.
In your descriptions of her I get no sense that one side is affected. For example, does she peel her banana with one or two hands? Does she propel her wheelchair with one foot or with two?
Your mealtimes seem unrealistic to me. You can't cook ahead of time because you don't know when she's going to say "Yes". But it would take me over an hour to prepare the elaborate meals you indicate you prepare for her, yet you sound like when she says "Yes" you very soon present the tray.
In your descriptions of her I get no sense that one side is affected. For example, does she peel her banana with one or two hands? Does she propel her wheelchair with one foot or with two?
Your mealtimes seem unrealistic to me. You can't cook ahead of time because you don't know when she's going to say "Yes". But it would take me over an hour to prepare the elaborate meals you indicate you prepare for her, yet you sound like when she says "Yes" you very soon present the tray.
Hi Tessa
Yes I agree there is a difference between taking care of someone because you enjoy it, do it for 7 hours and then go back to your own life...and the when taking care of your mother or your husband because you don't want them to go to a nursing home IS your life and there is no escape BIG DIFFERENCE. I appreciate all the info caregiver gives, but I too feel that if I tried all that I would have absolutely NO life at all. I agree with the PT suggestion you gave. We do take my mother twice a week to outside PT. He is very compassionate and gives range of motion and has her sit and stand, sit and stand, so she can do transfers...ofent she hangs her rear end out, bends completely over and is a dead lift..so we are trying to improve on sit and stand. He feels that her walking is unrealistic, and she will not benefit from all the effort we are putting into it. I feel that if we can keep her walking even a little, it will help with other issues...breathing, constipation, muscle strenght (you know the drill). It does seem the medical community just feels that people like my Mom should be in nursing homes, just given palative care with no rehab goals...it is sad and puts a very heavy burden on families. We have 3 good caregivers that attempt to keep her stimulated and two that treat her like a nursing home patient. My husband and I have her from 5p.m. to 9a.m. I considers us luckey to have the help we do. I could never do it alone.
Yes I agree there is a difference between taking care of someone because you enjoy it, do it for 7 hours and then go back to your own life...and the when taking care of your mother or your husband because you don't want them to go to a nursing home IS your life and there is no escape BIG DIFFERENCE. I appreciate all the info caregiver gives, but I too feel that if I tried all that I would have absolutely NO life at all. I agree with the PT suggestion you gave. We do take my mother twice a week to outside PT. He is very compassionate and gives range of motion and has her sit and stand, sit and stand, so she can do transfers...ofent she hangs her rear end out, bends completely over and is a dead lift..so we are trying to improve on sit and stand. He feels that her walking is unrealistic, and she will not benefit from all the effort we are putting into it. I feel that if we can keep her walking even a little, it will help with other issues...breathing, constipation, muscle strenght (you know the drill). It does seem the medical community just feels that people like my Mom should be in nursing homes, just given palative care with no rehab goals...it is sad and puts a very heavy burden on families. We have 3 good caregivers that attempt to keep her stimulated and two that treat her like a nursing home patient. My husband and I have her from 5p.m. to 9a.m. I considers us luckey to have the help we do. I could never do it alone.
Thank you for all the instruction. You are doing an unbelievably wonderful job for this lady. I have 5 aides for my mother and I understand your frustration. The question I have is..was your lady paralyzed on one side or the other. I would like to have my mother "walk" and "excercise" in the wheelchair as you described, but she is paralyzed on the right side. We try walking with her but it is very difficult for us and for her...she is very fearful and often cries out in fear..so we support her when walking with her and get her to the wheelchair to go out. We give her as much brain stimulation as possible. I have read that the two greatest enemies of the stroke patient is despair (hopelessness) and dependency. My mother seems to have both. I know she hates having to live with my husband and I, but it is that or a nursing home. I could not live with that. Of course you must know that this whole situation is difficult for my husband, myself and my mother. We are completely tied down after 5pm. at night until 9am in the moring when the caregiver arrives. Also we have no privacey in our own home. I do not mean to complain, as you sound like the perfect caregiver, but living with the stroke patient and aides every day is very stressful. I do not know what the answer is yet. I would like to try to rent the house next door and get 24 hr. care for her. I am not a good caregiver like you are and she fights everything I want her to do, so it is not the best situation. She just wants to be taken care of and left alone, that's it. I carefully read all your suggestions and really appreciate your help and experience in the care of elderly stroke patients. Vicki.
It is a glorious sunday and I just spent three hours with my sweety-pie. Thinking back to when we had an agency in, and the many things that were done that caused her displeasure I will discuss them. First, was the "rule" that she be snugly strapped in her little wheelchair at all times. I concede this may be necessary when outdoors, but within the apartment, where she is always attended, it is totally unnecessary. She always grew annoyed at the strap. You would think it would be a simple matter of informing the aides "she will not be strapped". Oh no, mister Bill. It became a "Magilla". She was asked about lunch at 1 P.M. 1:30 P.M., 2:P.M. and 2:30 P.M. when she finally smiled and said "Yes". I made her lunch today of four-cheese mashed potatoes slathered in butter with chicken gravy and a bit of fresh ground pepper, vegatarian barbecue, home-made split-pea with ham, jello and peach yogurt topped with whipped cream, and five beverages in two ounce cups, prune, tomato with lemon, carrot, milk with maple syrup, and water. I selected pristine white plates with a green band around the outside today. And of course there were plastic flowers on the table. And a bright colorful green tablecloth to match the china. She is never asked for lunch when she is watching a television program. This was another issue with the aides. She is offered lunch on the hour, at the conclusion of a television program. Then, during lunch, the TV programming is turned off and music is put on. Actually cable has a classical music channel. So I write on the dry erase board "Lunch now" and underneath write "Yes" and "no". She often surprises us by smiling and answering "maybe!" Usually she says "no" the first time. She is asked again in a half-hour. The food is brought in on a large aluminum tray, with her silver spoon on a colorful napkin. I purchased a variety of sparkling new serving ware and little bowls. It is a rule that before serving the aides (or myself) must insure that nothing is too hot for her. This "check" is like the one you use in an airplane approaching a runway. I tell the aides "Before stepping into this room ask yourself if anyrthing is too hot or scalding." The tray is brought before her in her "sitting chair" so she can see the food. Then the tray is moved to her dining table. The small four-wheeled "in house" wheel chair is positioned far away from the chair so we can get an exercise session in. Then she is walked to the small wheel chair. She can support her full weight, but has difficulty sitting up. When she arrives at the wheelchair she is hugged and given encouragement for her efforts. Then comes "wheelchair practice", in which we take four or five minutes for her to "walk herself" in the little wheelchair over to the table. A good ten foot. She is not rushed. Then a bib is put on, the wheelchair wheels "locked", and a spoon placed in her hand. She feeds herself now. I had a different protocol in place when she could not swallow. At the conclusion of the meal, she is offered a box of tissues to take one to wipe her mouth, the bib is removed, the four-wheeled chair is unlocked and moved a way from her sitting chair and there is again "walking practice" back to her chair. This is spelled out in a protocol for the aides. She is NEVER left alone in her chair while the aide takes the meal away. I made this a dismissable offense. The best time for the toilet is thirty to forty minutes after a meal. Biologically, the bowel is in "realease mode" at that time. The door is closed during all "personal times". The agency aides used to keep it open and treat her like a lump of meat. I made keeping the door open during toilet to be a dismissable offense. I installed brass knockers on the door and every one knocks before entering. When she returns to her chair, a beverage is placed in a two ounce cup on a little folding wooden table within easy reach. Television is turned on to something she likes and there is a "glasses check", to insure her eye-glasses are cleaned with windex. Only then is the tray with the dirty dishes removed. While it may seem silly to micromanage and orchestrate things, if this is not done, the meal ceases to be a "happy time", and ceases to serve a rehabilitative purpose.
To continue, I broke the days activities down into little "blocks" and demonstrated how I wanted the aide to perform during every activity. For example, "walking" the patient. The aides were simply holding her hand. This is unacceptable. I demonstrated to them they have to place their hands flat against her side and under her armpits to provide full support in the event her muscles fail. By the same token I provided them with a "standard" way of standing her up, and I don't brook deviation. The techniques I demonstrate are not arbitrary, but designed to strengthen the patient's muscles, improve morale, and do things in the safest matter possible. Safety and rehabilitation are the two watchwords and the arbiter against which technique must be weighed. I like to know how much she has been walked every single day. And I insist that "walking exercise" be logged in the marble book. I also do not tolerate any odor in the room. There is none, and there is no excuse for an odor. If there is the smell of urine or feces, then the aide is not doing his/her job. My little sweety stays up until 11 P.M. every night. She is a night owl. This may not be the best routine for everyone, but for her it works out well. Every night, just before going to bed, she is offered a cup of hot chocolate. I insist she be kept properly dressed until then and sitting in her chair, unless she says "I want to go to bed" in which case, her wishes are complied with. She watches television every night until 11 P.M. I had a big problem with aides putting her to bed at 6 P.M. or 7 P.M. I don't allow watching television from the bed, nor do I permit the aides to watch television after she has gone to bed. If you don't exercise control over the aides, they tend to go off in directions which are harmful and not conducive to stroke recovery.
I've been giving a lot of thought to the issue of guiding aides as to how to treat a patient. And you always have to weigh the good things the aides do against the harm or lack of good work. Many human beings are surprisingly resistant to taking direction. And if you are supervising aides, I know it can give you a knot in your tummy to insist that: "This is the way things are to be done. This is the reason why. If you have a better way, tell me now or hold your peace. If you can't comply with this protocol, then let's set up a time for your departure and replacement, with no hard feelings." With the stroke patient, every activity should be measured in terms of "how this activity will improve muscular coordination, mental acuity, and the progression to recovery". This the arbiter against which every little thing should be weighed. I told my aides, I don't care how old she is. I expect us to be in an "improvement and rehabilitation" mode, rather than a "maintain and ignore" mode. I want improvement every week. Thus, getting up to go to the chair is not an end in itself. You want the patient to gain confidence, exercise muscles and not strain them, and enjoy themselves. Stroke patients often do things at an awfully slow pace, and my feelings is that they should not be rushed. Getting the wheelchair from one end of the room to the other should be an exercise to strengthen the feet and coordination. Sometimes it takes us eight minutes to get across the room, with encouragement and clapping. With the aides I dismissed, the job was "slam-bam-thank-you-ma-am" and they would forcibly shove the wheelchair across the room with my little sweet-hearts little feet dragging. In order to develop muscle strength the muscles must be exercised and placed under strain, but not too much strain. And this must be done on a regular systematic basis.
The business of ordering the caregivers to "do the right thing" is a difficult one. After I fired thirty one of them who all told me "I've been doing this job for years" I hired two who were told their primary job was to be my assistant, and that job included taking care of this sweet old lady. I do not relish being a "control freak", but the fact is, when you have a very elderly stroke damaged patient, the cliff is only a few feet away, and to fall off the cliff means termination of existence. My instructions are not "suggestions", but direct orders, and I made it clear that if they are unhappy following my protocols they can seek employment elsewhere. I have read all the elderly care books and none deal with the very elderly stroke-damaged in a clear-cut manner. I insist on meals being attractively presented, for example. Meticulous track of fluid intake and bowel movements, for example. If the aides are not grilled on a daily basis they tend to go off in their own direction. Usually the wrong one. Every day I ausculate her lung fields, anterior and posterior four quadrants, and check dorsalis pedis pulses. This you can learn to do. I also periodically check her blood sugars. And give her gentle foot and back massages. I have a meeting every morning to discuss breakfast and how she did during the night and a meeting every evening to discuss supplies and breakfast and set goals. At one time I hired an unlicensed female physician (subsequently fired)who fed her boiled small carrots, directly against my orders, and predictable they would not go through the intestine and resulted in a bowel blockage that fortuanely was relived naturally. Nothing is fed to her except from a menu of my approval. I try to make the meals a highlight of her day. I was a professional military officer for a time, and command is a lonely thing. You have to make up your mind your job is not to be a "pal" of the aides. If the choice is between looking out for "sweety-pie" or being liked by the aides the choice is clear. The downside is you don't want aides to be mad and take it out on the patient when you are not there. This happened in the past. I have tried to explain things, but my explanations often go in one ear and out the other. Had I not had decades of experience working in the health care field I would not have the confidence to insist on doing things my way, but every protocol is based upon someones unfortunate death. If there are sniffles, for example, saline must be immediately sprayed up the nostrils and the sinus cavity flushed. Do not pass go. Do not collect two hundred dollars. And this must be logged. I am satisfied with the two who are presently employed, but I am sure they find it difficult to work with me. I prepare nutritional supplements every evening and they are administered at the same time every morning. These supplements include B-12, folic acid, cod liver oil, omega-3 capsules, zinc, vitamin D-3, crushed multi-vitamin, DHEA 25 mg, synthroid, 300 mg of vitamin C (not a high dose), and 120 mg of co-enzyme Q-10, plus 1/2 teaspoon of cinammin. I do not give vitamin E for a number of reasons. The cod liver oil is flavored and her dose is a small teaspoon. I give B-12 twice a day. The second dose is via a cherry flavored syrup. Generally she gets an oily fish main meal four days a week. Seeing my sweety-pie is a highlight of my day.
She is the mother of a friend of mine, whom I fell in love with. She is not related to me. Initially I was involved professionally with her primary care physician in a co-worker health-care provider capacity. I was involved professionally in the health care of her handicapped son. I sort of stumbled upon her accidentally and was outraged at how she was being cared for. She was essentially given up for dead. She had been to the best rehab who gave their opinion in writing she would never talk, walk or be anything other than vegatative. I basicly spend as much time with her as I can, and don't bill for it. I just sort of took her under my wing. My reward is her laughter, I usually spend three hours with her every morning and four hours every night seven days a week. I give her aides two hours off in the morning and two hours off at night to leave the house, take a break, stretch their legs, etc. I set up every one of her meals and delight in her smile. She has not "plateaued", as the caregivers are fond of saying. Her sentences have increased in frequency. Yesterday, a friend of mine, a psychiatrist, spent a full hour with her and I and she greeted him with a huge smile and a handshake and a "Hello". And she shook his hand good-bye, and was extremely alert and happy while we all watched television together. This week I started her out with pancakes with maple syrup and butter as part of the breakfast menu and she loved them. In the past I have been involved professionally in providing such care in a hospital environment, among other duties. I am semi-retired.
Caregiver, I've been wondering whether your sweetiepie is your grandma or a client? Also, how much time do you spend with her vs. how much time does she spend with hired caretakers? I too have had problems with caregivers inhibiting my husband's progress. He's now beginning to stand and walk, but he stands so slowly that one caregiver wants to just haul him up to save time. It's hard to instill patience in a lively young person, but he's a good caretaker otherwise and my husband doesn't respond well to changes. I'm also amazed that your sweetie pie sleeps so little. My husband (who is only 69) needs MUCH more sleep that that, but then he's on a demanding exercuse program (Vasa Method) for hours per day, so that tires him.
She never has regained her full memory, and I never mention stroke to her. There are pros and cons to discussing this with a patient and I have no strong opinion one way or another. Her speech continues to impropve. For example tonight there was a baby on television on "ER" and she pointed and said "Look at the little baby!" and laughed. When I was working in a hospital and caring for stroke patients I would always speak to them alone and say: "I know you can't communicate, but I also know that you probably can hear and understand everything that goes on. Please understand that many people will not know this because something has happened that has damaged your brain in the part that allows you to communicate. Have patience and eventually things will get better, day by day. Don't give up hope and try not to be frustrated when you try to say words and they don't come out. Give my hand a little squeeze twice if you understand what I just said." And I would generally get two gentle squeezes.
Did your friend ever have a hard time accepting that she had a stroke? We still have to tell my dad every day that he had the stroke and that he can't walk. He gets so angry every time we tell him. I don't know if this will ever get better. I remember you saying that it took your friend a while to get her memory back, so I am still holding out hope....
The lack of curiosity for the first eight months bothered me. To create interest I set up a smal oval of 0-27 track on the folding 3x6 table we eat on, along with plastic churches and ice-cream stores and little play figures. Plus a colorful little four wheeled Birney trolley car. Then a radio-controlled missile firing tank, which we would run around her feet. The radio-controlled mouse was a bit of a hit. Also the small jewelry with blinking LED's elicited the most interesting of all responses. Do get some of these. I tried helium balloons and these created a stir. Also pictures of children. Large pictures from magazines. I tried finger painting, which didn't work so well and play-dough, which was too firm for her to manipulate. I finally found she enjoyed taking toy soldiers out of the box and arranging them on the table. The little radio-controlled dinasaurs and the cars that jump around were also a hit. Afterwards they were recycled as gifts for children.
It is impossible to say what is going on with another person, however the resistance to walking strikes a chord. Initially, I too had this problem. It took me a while to recognize that my sweet-heart was very frightened and would "go rigid" when we tried to get her to walk. After that I would be sure to "mime" and "point" to where we wanted her to go to. I could not just "assume" that because she had eaten breakfast twenty times and went from her chair to the wheelchair for exercise that this would be something remembered. It eventually was, but for months, this required elaborate "pantomime", pointing and patience before her fear was overcome. Initially every variance in routine was met with fear. I learned to go very slowly in everything, and make an elaborate effort to convey exactly what was expected. This included (a) writing on the "dry-erase board" (b) slow clear verbal explanations (c) pointing and pantomiming. I don't know if this would work for everybody.
One of the big problems I had was the aides "trying to do everything". And it was a problem. It is a aidepsread problem that I have observed with many other aides and different patients over the years. I told the aides that EVERY action has to be oriented towards her REGAINING the ability to use her hands and fingers, and to walk. A simple thing like the aides wiping her mouth became an issue. I told them the concept was to get her to take a tissue from the box, wipe her own mouth, and throw the tissue in the nearby trash can. She can do this now. I set up "mini-goal" for rehab, which I wrote out. This was one such "written out goal". "Feeding herself" was another goal. I write out small weekly and monthly goals, which we work towards. I had to cure the aides of the habit of continually putting the spoon in her mouth themselves. For months her hand movements were so slow and the spoon would sometimes remain motionless for several minutes. Now she eats rapidly and normally. Another partr of the brain had to take over for her to regain the use of her fingers. The ability to turn the spoon sideways to scoop up food, and then return the spoon to the horizontal position became something she was very proud of. I am pleases as punch she eats normally now. The fluids are in little two ounce cups and I wanted her to develop the abiloity to reach for the cups, bring them to her mouth, sip, and then return the cups to the tray. This was accomplished, but again, the aides wanted to bring the cups to her lips and take the cups without waiting for her to take four minutes to return the cup to the tray. I guess they thought they were being helpful. In an ordinary elderly patient they stop feeding themselves when they are tired. In the stroke damaged patient, when they stop feeding themselves, you wait ten minutes and DON'T immediately start feeding them, because they stop feeding because the muscles that enable the patienmt to swalolow are tired, and it is essential that they not be strained. They need a little rest. Tonight we watched television and my sweety-pie pointed to the television where someone was playing the piano and asked "Do you know how to play the piano?" This may not seem like much, but these questions and interactions are relatively recent, and demonstrate a quantum increase in sentience and cognition. One thing the aides did not catch on to was that there is a delay in understanding that comes with the stroke. Sort of like the delay in a jet turbines response to the throttle. I made her my "special jello" today. You mix jello the regular way with hot and cold water and add a cup of cottage cheese, put in a blender, and then back in the refrigerator. It is healthy, but more importantly. the cottage cheese thickens the jello. The thickened desert helps stimulate the swallow reflex.
Thank you for the help. I will definitely use your suggestions. It seems my mother does not have the will to get better. She does not want to die, but she does not want to put out any effort to recover. She gives the impression that she wants everyone to do everything for her and she only wants to be pushed around in a wheelchair. Walking is very difficult for her. She has no balance and walking with her is not only very hard on her caregivers, but cause her to have "catastrophic reactions." We will keep trying. I also want her to walk from her bedroom the short distance to the breakfast table, and from her bedroom to the bathroom, but she puts up such a fight, I have almost given up. I also had an aide that told me "she is 90" just do everything for her..she deserves it. I know it is easier for them to do everything for her than to try and have her do it, and sometimes I feel mean for making her walk or do PT...it is a difficult situation, but I want her to do all she can for herself even if she does not want to. Thank you again for all your help. She is getting PT twice a week and will be going back to speech therapy, although the first time around was unsuccessful. Part of recovery takes the cooperation of the patient..it often seems that is the part we are missing.
She goes to bed at about 11:15 P.M. and is up at 7:30 A.M. every morning. She enjoys cuddling and watching television until 11 P.M. The aides were putting her to bed at 6 P.M. and waking her at 9 A.M. before I came on the scene. This set-up is structured to induce a clot. Since she has to walk to the table and walk back (with assistance) at evfery meal, this provides a minimum of three exercise periods every day. In addition to exercise for the purpose of physical therapy. Today we watched "Dancing with Wolves", and she pointed at the wolf and said "Look at the dog."
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