My mom is not following commands

[KJQESP]

Hi. My mom is 66. She had a left side hemmoragic stroke on Sept. 18. She had surgery to have the clot removed which saved her life. The stroke was 'massive'. She 'woke up' one week ago. She is interactive with us and seems to be aware of what we are saying. She smiles and says 'yes' and 'no', nods her head, frowns,  and attempts to communicate but only makes sense about 1/3 of the time ( which I am actually very happy about). However, the doctors are concerned because she does not follow commands.  She will not squeeze a hand, lift a finger or anything when commanded. Has anyone experienced this??? Is there any hope that she will in the future? It seems like everything is riding on this. By the way, we were told she is completely paralyzed on the right side but she is now moving her arm and leg ( not involuntary).  Thanks.    

[vanillatwin]

My dad went in for a procedure (Carotid Endarterectomy) July 21, 2010 because he was 70% blocked in carotid artery (he had a stroke in his right side brain 2 1/2 years ago) on his left side so it was necessary surgery to prevent him from having another stroke.  After the procedure when they put him in Recovery he clotted which caused him to have a massive stroke in left side of brain.  At first in ICU he was Intubated on Ventilator and wasn't conscience because of sedation, by the next day or so he woke up a little but was unable to move any of his right side (his left arm and leg moves alot though).  The nurses were of course not very positive and would disregard all movement he would do as reflexes.  After about a week he would lift his left arm up for us if we asked to adjust his pillow, when we would speak to him he would turn to look at whoever would speak.  He didn't speak he had tube down throat and feeding tube down his nose.  They eventually put a Trache in and feeding tube directly in the stomache.  He still hasn't spoken but seems to look at us when we speak to him like he is listening.   After about 3 weeks he has slightly moved his right arm and nurse got him to once wiggle his right toes plus although he still had trache in he was not on vent anymore and breathing on his own only w/ little oxygen through his trache they kept it because he has lots of secretions and they have to suction him a lot.  He seem to be more alert as well however w/ out him communicating its hard to know if he knows what we are saying.  By the 4th week he seemed more alert but still not sure how aware, he had a good nurse that was working w/ him so i think it helped him having that interaction.   They ended up putting him back on vent because his breathing became so labored and wearing him out.  I also want to mention he is having an issue  where whenever they try to do mouth care or if he has coughs up he is clamping his mouth down really really hard and almost bit his tongue off several times.   He got moved to another facility (Long-Term Acute Care facility) and is receiving respiratory therapy, but not anything like Physical therapy since he won't respond to commands.  He has only been there for 2 weeks and we notice he hasn't been turning to look at us anymore and just seems agitated the whole time.  He hasn't been biting his tongue so much but because of his clamping down his teeth are loose and cutting up his bottom lip bad.  They are going to, in a few days, have an oral surgeon remove his loose teeth, probably all teeth since they are causing so much issues (possible infections, tongue/lip biting, etc).  Me and my sister believes that since he is on more pain meds and is in so much pain that he can't deal w/ much for now, I mean if i had a stroke and had all those issues going on I would want to zone out too.  Its Been frustrating cuz nurses, and our family members expect so much out of him and when he doesn't deliver (responding to commands and such) write him off like this is how he is and to accept this is how he is always going to be.  They act like we are unrealistic to be hopeful that he will become more aware once he has certain issues taking care of like the teeth issue, oh and he has an infection from when in ICU plus all the pain meds and relaxing meds.  I keep telling people that all these issues he is dealing with all at once is just setting him back.  I only say this because the last couple days he was in ICU and first few days in LTACF he was starting to be more responsive to us.   Has anyone else had to deal with any of these issues?  Do you have any suggestions of things I can do to aid in his recovery?  Any insight, suggestions, advice or anything would be appeciated.  

[jf0213]

Do you have any updates on your father? We are dealing with a lot of the same issues with my mother that had a stroke about a month ago. It seems sometimes you begin seeing some light at the end of the tunnel but just end up being disappointed.

[specialmom]

Hello, just seeing this.  My aunt had a traumatic stroke and it is so hard to watch.  My aunt did improve very slowly with some set backs along the way. Tell me more about your mom and any updates.  

[KJQESP]

Great news!! Mom is really coming along. She is much more alert and responsive!! The trach is out and they are starting swallowing tests. She is MUCH less fidgety and is sleeping very peacfully for the first time since the stroke. So much has happened since my last posts. She is following commands about half the time, she calls me by name. She is singing along with the music therapist. We are so blessed. Thank you all so much for all of the advice. I know that I will be referring back to your posts in the months to follow. Mom's right side is moving almost as much as the left now. Her vision is still impaired but she is finally aknowledging her right side field of vision. Her speech is garbled half the time but she manages to get out complete sentences often. The other day the entire family was sitting around her and she said " You know what?  I am so happy!"  It seems that she sleeps alot for about two days at a time and wakes up much improved each time. The brain is just amazing! It is unbelievable how the brain adjusts and heals. I look back and cant believe how ignorant I was about all this. I thought when you had a stroke you got a paralyzed arm and droopy face. I never imagined the hardship on the patient and the family. I never knew how much a stroke can change someone. I never realized how much can go wrong when the brain is damaged. And every day I am absolutely amazed at the miracle of the recovery process.

[caregiver222]

One thing I like to do is have planned "optimal experience" days. These involve taking my little camper out to the park and exposing her to a variety of experiences that make her feel life is worth living. Of course you have to bring stuff, just like you have to bring a bag full of stuff for a little baby.  If the aide pushes I hold her hand and then we switch but someone is always holding her hand. I like to give her 1/2 hour of sunlight but am careful not to give too much sun exposure. Then I take her to different places in the park. To the little playground where the toddlers play. She loves that. Then take the wheelchair to the grass near the pond where there are ducks. And of course we bring bread for her feed the pigeons (illegal, but worth going to jail for). And we bring banana and two or three kinds of drink (she likes pumpkin smoothie and banana smoothie), banana, and a buttered boueberry cupcake. The bana is an excellent snack. It provides butrient, can be broken into small pieces and helps to rehabilitate the fingers and hands and also contains a large percentage of water. Usually we stop at a little stand in the park and have coffee. I bring tiny two ounce plastic cups for her to hold. And we take long trips through the macadem pathways and the little camper enjoys pointing this way or that at the intersections and we go where she wants. I like to take her out for two to five hours, and have had battles in the past with nurses (all of whom I fired) about her being "overtired" and "overstressed" by these outings. Nonsense. When the little camper is tired she sighs and says "Let's go home." She cuddled in my arms for five hours today with an ear-to-ear smile and kissed my arm continually. Million dollar kisses. One thing you will find if you push the wheelchair alone is that you cannot observe the feet, which can come off and get caught. If we have two people, the person holding her hand is tasked with checking the feet. I jig-sawed up a 1/4 inch plywood board that can be attached to the footrests with wing-nuts to extend the surface where the feet rest by four inches to solve this problem.  We walk VERY slowly. The leg supports have a space where her legs can get caught so I purchased some velcro straps that we fasten to prevent this from happening. Remember to purchase a foam pad for the seat and back of the wheelchair. These pads are inexpensive and don't have to be thick. The ordinary wheelchair transmits bumps to the person being wheeled and the resiliency of the cushions makes the ride much more comfortable. If you don't have cushions use a folded blanket. In warm weather every fifteen minutes or so offer a sip of beverage. I bring the dry-earse board along in the back-pak. We have two sizes. A big one for the bedroom and a small one to use when we are outside.  I purchased a small (fifteen dollar) black and Decker food processor that holds about a cup that is helpful in preparing meals. Every morning she gets a teaspoonful of orange flavored cod-liver oil. The newer cod liover oils come in several flavors and are quite palatable. And with her morning free-range chicken scrambled eggs I mix 2,000 mg of omega-3 fish oil. She loves maple syrup with her eggs. I give her 240 mg a day of co-enzyme Q-10, each 60 mg mixed in a teaspoon of yogurt. I don't give vitamin C because it is a diuretic and dehydration is a big problem. Nor do I give any vitamin E. Every morning she has oatmeal with lactose-free milk and maple syrup. And of course always at every meal four choices of beverage. Don't be concerned is ocasionally she doesn't seem to recognize you. It doesn't mean she is made at you. I check her blood pressure every day. With a stroke patient, at least initially, the little automatic wrists units are helpful because sometimes the patientnis reluctant to bend their arm. Ask a nurse how to check the dorsalis pedis foot pulses and check them every day. Right foot and left. Have pacience. I am sure things will get better!

[cannon124]

Hello, I seriously doubt your mother is mad at you!  It would be my guess that when she looks up and sees you she is comforted by your presence and knows that she doesn't have to put forth as much effort for you as should would feel the need to if others were in the room.  My Dad just had a massive stroke on the left side of his brain last week and is in the hospital.  He had two other strokes, one eleven years ago, and one ten years ago that were not as bad as this one.  One thing we noticed back then, and now, is that he seems "lazier" around his immediate family members than he does if other relatives, friends, or nurses are present.  It seems as if he makes a greater effort to be more responsive to them than to us.  Perhaps it is because he knows us better and is more comfortable just being himself.  It is almost as if he is purposefully trying harder for others so they think he is able.  We like to think he is trying to "show-off" for others.  ;)   But I certainly understand how you feel and it is important you do not take it personally.  

Also, you may want to ask your mom's doctor about the use of Ritalin to help her responsiveness.  You can read about it on the internet, and it may or may not be good for your mom's situation, but it is supposed to help stroke victims become more alert, which can help with rehab efforts.  My friend who is an OT said that not being consistent in responding to commands is not unusual, and many things can affect it.  Sometimes the patient knows what you are commanding, and is trying, but just can't get the brain to do it.  Sometimes the patient can't figure out what you are telling them to do.  Sometimes the patient just does it from memory or involuntarily, and sometimes there is just success in actually performing the command.

Best wishes to you and your mom during this difficult time!

[KJQESP]

I did further research on the anti-seizure meds and complained to a different doctor on duty at the rehab center. He disagreed with the use of the med as well and took her off of it. As far as I'm concerned the other doc is fired. I hear from my family members that mom is doing much better and is much more responsive and even laughing. HOWEVER,  every time I see mom she is fast asleep or unresponsive. Once she opened her eyes, looked at me and turned her back to me. Me and my mom are very close. I am her only daughter. Could she be mad at me!? Its probably just a coincidence that when I visit she is tired. Everyone else gets to see her alert and responsive. I'm getting a little jealous!! Oh well. Maybe tomorrow. By the way, everytime I show up in my Mom's room, there is always an aide sitting right next to her bed. I'm very impressed and pleased with the aides at this rehab center. She is also fully dressed every day and often times sitting up in a special chair. When she is in her chair she even has her tennis shoes on. ( even though she is napping). Thanks again. I look forward to your posts!   Kelly

[caregiver222]

A few othet thoughts. Podiatrists are esesential. I have one visit the house every three months and he gives a toenail trim and a foot massage. All covered by insurance. Stroke patients cannot tell you thri toes hurt and an ingrown toenail is a class one catastrophe! I am curious why she is on an anti-siezure medication unless she has had a siezure. The general protocol is not to treat until there have been at least three diagnosed siezures. All siezure medications interfere with recovery. Sometimes they are necessary. Often not. Yes. These meds cause fatigue and unresponsiveness. A patient can also become chemically dependent and this measure the medications cause a siezure when halted. Thus you end up with a perpetuating medicational insanity. A normal person can sieze if the oxygen supply is reduced. Thus a siezure in a person who has had a stroke should not be of great concern. Question your physician. The rehab hospitals all do a good job. A big problem with all of them is that they book "blocks" of time for rehab. In my expoerience the patient often can take no more than five to eight minutes of rehab every hour or two, and a four hour session is not very productive. In addition the bizarre corcadian rhythyms often mean the patient is most receptive to rehab when the staff is snug in the beds. Nevertheless I encourage the use of rehab facilities. One very bad habit aides have is to keep the patient in pajamas all day. I make sure my 102 year is dressed to the nines when she gets up and stays properly dressed until bedtime. And her nails are done properly too. If an aide is in the room you need to have a comfortable chair NEXT to the patient and the aide MUST sit there. An aide who sits on the other side of the room is worthless from a companionship standpoint. Make sure you have a good chair right next to the chair the patient sits on. I have mnixed feelings about recliners. They are more comfortable, but the electric ones are too dangerous. I have a soft stuffed chair and my sweety-pie "adjusts" herself to a sitting position every so often. This stimulates the blood circulation. The recliner was "too comfortable". She sat motionless.

[KJQESP]

Wow- thanks again for all the advice. I really appreciate your time. My mom is at a rehab hospital right now and they are taking care of all this. She has a sitter for when we are not there so she is never alone in the room. I found out that they changed some of her meds. The doctor put her on an anti-seizure med to prevent possible seizures since it has only been three weeks since the stroke. Seems this med is causing her fatigue and non-responsivness. Discussed this with the doc who will lower the dose. Hopefully she will be more responsive tomorrow.

[caregiver222]

The fact you turn her face has significance. Every stroke is different. In the case of my 102 year old girl her peripheral vision was affected. I have to approach her head on for her to be fully aware I am there. Visitors who approach from the side are often disappointed that she doesn't seem to be aware they are present, nor does she wave goodbye. The issue of "bothering" is cultural. Often, when there is a visitor to my 102 year old they are reluctant to "wake her up". The therapeutic value of a visitor touching and interacting far outweighs the value of sleep. Almost always, stroke patients have deep disturbances of the circadian rhythyms. They are up and awake while everyone else is asleep. I have two aides and make sure the day revolves around the patient, and the patient's day does not revolve around the aides. After she will sleep during the day and brighten at ten P.M. As far as I'm concerned this is the time for therapy and interaction. If my sweety-pie has not eaten I expect soup to be served at midnight or 1 A.M. by the aide on duty. The aides are not my extended family. They are employed for the convenience of the patient. You must establish this when you first hire them. If they come from an agency they will report to a "nurse", and you giving the aides instructions will cause chain-of-command problems. I am not going to criticize all nurses, but eventuyally you will know that doing something for your mpatient will inconvenience the aides, and the "nurse" who supervises them is often sensitive to their complaints. The patient ALWAYS comes first.  Clearly this can be very disruptive to a family that has a sleep schedule of retiring at seven or eight P.M. I stay up almost every night with her holding her in  my arms until 11 P.M. or midnight, or until she says "I think I'll retire." (It's amazing she says that!) Hearing :"aides" are a problem. They have hearing assist devices that consist of earphones and a volume control.  Leave the television on high volume. Don't let the aides turn it down so they can chat on their cell phones. Get some "debrox" (brand name) to flush out the earwax. Earwax is the most common cause of diminished hearing. Use the debrox in the shower to avoid a mess. Often stroke patients are apprehensive about water. Let it run and be at the right temperature and let them feel this in their hands. Get a "transfer bench" to slide them over and install extra hand rails in the tub they can hold while being showered. You need a "spray wand" installed, rather than a conventional shower head. Have a shower head installed that has a temperature shut off that prevents the patient from being burned. You can purchase valves with this feature. Many older and some newer valves do NOT have this feature. Before bringing soup or hot foods out taste the foods and ascertain the temperature OUT OF SIGHT. It is very drustrating to a stroke patient to see food brought out and then with-held to cool. The cooling should be done in the kitchen. Do not feed in bed or in the day chair. I insure all eating is done at a proper table with a proper setting. I bring the silver tray out and show her, then walk the tray to the table. Then I place the wheelchair across the room and walk her to the wheelchair. This is an exercise session. Then the wheelchair is moved to the table and a bib (ready) is put on her. Then I hand her the spoon and she feeds herself. For within the room you need a small four-wheeled chair (plastic wheels) and NOT the big outside wheelchair. The large hard-wheeled wheelchair the health care provider rent is good for nothing. You need two chairs. The four wheeled room chair and a large outdoor chair with pneumatic wheels. If you are buying a wheelchair new they can be manufactured in many different dimensions. This includes the height of the "push handles". Don't let them sell you what is in the window of the drug store. The answer to your question is "the more stimulation the better".

[vega1318]

Give your mom some time -- it's a great sign that her R. side is recovering and that she can sometimes speak even though she does not follow commands.   patients post-stroke fatigue quite easily so they can't sustain the same amount of attention as someone who is older but not post-stroke.   you will see most recovery in the next 3 months or so but subtle improvements will continue beyond that period.  if she's bedbound, it will be difficult for her as she's susceptible to infections (pneumonia, UTIs, etc.) which will take her back.  so make sure she's well taken-care of in this acute period.

[KJQESP]

Thank you so much for the insight. This is so hard. My family has never been through anything like this before. Mom is the matriarch and the rock of this family. Today she was very quiet and contemplative. She didn't talk to any of us ( all15 of us were there). But then when it was time to go she nodded goodbye and kissed everyone. Her responses are just so unpredictable. Thank you for the good advice. Here's one more question:  When I address my mom I talk to her loudly and turn her face towards me to get her attention. My brothers think I am 'bothering' her and should leave her alone. I think the more stimulation the better. What do you think?

[caregiver222]

Yes, there is hope. This is not something to be overly concerned about during the immediate period after a stroke. And do not believe she does not "take everything in". Responsiveness to commands will vary greatly over the next weeks, months, and years. Last week my little 102 year old went to the hospital for her annual and went into what I call her "zombie" act. The physicians who examined her smiled at themselves, mumbled something about "dementia", and decided she was a pleasantly groom vegetable. Of course leaving the hospital (after a painful blood draw) my sweety-pie admonished me: "I klnew it was a mistake to come here!" You will find that the periods of unresponsiveness will diminish, although they will never go completely away. There will be more and longer periods of awareness, providing the problem that caused the initial stroke has been dealt with and her status stabilized. There are lots of things to remember about people who have had strokes. They respond very differently and it takes patience to communicate. "Miming" is very helpful. With my 102 year old, if I want her to walk to the wheelchair, I have to touch her, walk over to the chair and sit down myself, then go back to her and point towards the chair. If I just try to walk her without preparation sh gets frightened. Try using a dry erase board using large block letters (not cursive) and with space between words and simple sentences. Hearing is often affected. Pacience, pacience, pacience.  And lots of love, holding and kissing and body contact. When she has a visitor the visitor should go over and jhold her hand, and introduce themselves with the chalk board. Lots of television for stimulation. I take my 102 year old out for "maximum performance days", making sure the outings provide her with a variety of different visual and sensory experiences. An hour in the park with children. An hour with the wheelchair facing a beautiful park lake filled with ducks. Fifteen minutes feedinhg the pigeons. On the way home a stop at a supermarket and we pick a single item she can carry and present to the cashier. Then she carries the bag home. A stop to let her select and purchase a flower. A stop near a street musician and she hands him a dollar. A stop at a little coffee place near the park and she has coffee and a blueberry cupcake slathered in butter. On the way back we go into a store that has beautiful things and I "drive her around". A stop at a firehouse to watch the engines go out on a run. While the weather is nice take her outside. Get a good "outdoor" wheelchair with soft pneumatic wheel;s to absorb the shocks and a shock absorbing seat cushion. Don't give up any hope at this early stage. I am confident she will improve dramatically. It may take a very long time. The fact she has facial expression is very encouraging. The sense of awareness is often very sensitive to the time of day, blood sugar levels, and hydration. Get a bounbd book and have the aide meticulously log every word she says. You may find she is "most awake" late at night. Take advantage of the times she is alert and work with her. This may mean adjusting yourt sleep schedule. Don't give up!