Making Sense of the Beginning
I took notes while taking care of my mom after her stroke. Little scraps of paper, backs of envelopes and hospital pamphlets. Even so, I wish I had taken more notes and better ones. One thing is clear: I played an essential role as patient advocate. Even when the medical personnel are hopefully “on your side”, there are still so many decisions to make and complex issues to understand. I found it really beneficial to take notes, just to be able to make sense and remember half of what is said and also half of what you hope to ask the following day. Having access to a computer is important so you can research the terms thrown about is much easier these days. I am also always on the look-out for alternative and natural ways to deal with whatever comes my way, so research and talking with folks works for me.
I also recommend you seek out any and all information on Brain Gym. It will help reinforce the brief introduction you will read here, and is an essential aspect of the recovery in which I participated with my mom. There are now many YouTube that teach helpful Brain Gym exercises.
Within one day of her stroke, I left my home in California to go to New York armed only with my notes from Charlotte, my friend and Brain Gym instructor, my perseverance and love for my mother, and the blessed gift of my meditation practice to access the space to live in the present moment. What I came to realize is that I needed to have a lot more information every day to make decisions that would ensure my mother would get the best care possible. I took notes, but as you will see, I often confused myself by not writing enough down .
Here are some notes I took in intensive care:
Sundowner ~ lights off all night
no caffeine
lights ~ lower light ~ not scary
more light during the day
wake her up in day
I am not exactly sure anymore what this means. Should she have the lights on or off at night? Do they get Sundowner syndrome from the lights off all night? I do know that waking her up in the day will help her sleep better at night. What this note reminds me to say is, you will be needing to read pamphlets, do research, and wade through often fairly indecipherable materials, in order to even remotely be able to support your loved one.
During that time as I tried to understand Sundowners, my mother became very agitated when the night shift came on. I had no idea what was prompting such distress. The nurses said it was Sundowner Syndrome, which is true. It also turned out, the night nurses were tying her wrists to the bed to keep her from pulling out her IV and trying to get up and leave. I was horrified. But as I watched one evening she began to claw at the needle in her arm to get away. I didn't have an answer for that either. Earlier that day a nurse spoke with me about bringing in pictures or things that showed who my mom was... she said it helped nurses to see patents as real people, loving and lost and needing to be seen as worthy. I realized then why she said it to me because I soon found out that there was a heated battle between my mother and one particular night nurse.
Often the medical care can be a bit sketchy. The nurses are all very busy. There may be multiple doctors prescribing multiple medications. Though many doctors are reliable and conscientious, some prescribe by rote, not really paying attention to the specifics of the case, which might include medications reacting with other prescribed medications.
No one may be looking. You need to be looking, and if you are like I was, may not even know what to look for.
Check the medications. Read the inserts if possible. Ask how they all react with one another. Insist on answers and insist on what you believe to be correct. Ask your friends in the medical field. Talk to people you know who have been through something similar. Most of all, watch your loved one and make note of all symptoms and changes.
Another note I took when she was still in intensive care:
Physical therapy ~ acute rehabilitation in a couple of days
Stay 1 week/10 days
Go to rehab ~ Thur Fri/Sat
medications~ steroids ~ should not be on
These notes look like I was having a conversation with a nurse, who was in all likelihood talking very fast using unfamiliar terms at a time when I was extremely stressed.
This will probably happen to you. I recommend taking better notes than I did! When you get home, you are going to want to know what was said, who said it and of course be able to read your own hastily written words.
More notes:
X's on her back
OO on her back
X's on a hand or a pillow on her lap
with her eyes
Lazy 8's
arms ~ crossed lateral
textured pillow on her lap
can get stiff, sort of paralysis
Any touching on body, shoulders to her hips
Do CSA
Naval Radiation
These notes were taken during a call to Charlotte who dispersed advice repeatedly over the phone. I can tell you, if Charlotte told me to do it, I did it. Unless, of course, I couldn't understand my notes, which was, as you might be picking up, a consistent dilemma. Brain Gym activities, or at least my take on them, are interspersed throughout these sections.
I had to take my notes from my conversations with Charlotte to the hospital and later to the nursing home/ rehabilitation center to be able to remember to even DO the exercises. In the hospital I would go armed with the intention of doing Lazy 8's and Cross Crawls (more on this later) and then get somewhat paralyzed by the clinical setting. I am farily certian the above note "can get stiff, sort of paralysis” from the above notes was initially referring to the patien; it certainly described me many times.
There seemed to be an over arching sense all around me of, “Well, there is nothing to be done- it was a stroke after all. Here we are. Helpless... in the face of it all.” And I would succumb to that; even I... the one who was optimistically armed with the notes and intentions. I was winging it and doubrful sometimes, yet in reality still having such great success!! You can wing it too.
If you are a little like me though, you might succumb to Overwhelm. When I did, I would snap out of the stupor,
and take my mom's hand and draw X's or Lazy 8's in a way that she could watch me.
Anything I could think of to get me connected to myself and to her. And her to her body.
I would also try to remember one of the last lines of that note:
Any touching on body, shoulders to her hips
and I would simply touch her, giving light massage, even just light taps sometimes.
More notes taken while talking with Charlotte:
Naval radiation: Run naval (tummy) to head and back to tail. On Back.
Right arm ~ tips of fingers
left arm
right leg
left leg
Check about blood clots with doctor
Then can connect them together = homologous
Imagine there is a bubble of light ~ or what does she see
Then both feet to head and back to feet (centering dimension)
REST
I always checked with staff to see if what I was doing was acceptable and not a danger to her. The going repsonse was usually, "It can't hurt". Good enough for me.
The naval radiation was easy to do as soon as I adapted to reality, since she was sitting or lying in her bed the whole time. I did it all on her front. It was difficult to do anything on her back as she was immobile, but I would lean her forward as if to plump up the pillows and then sneak in a few Lazy 8's on her back before settling her back down.
She was always responsive to this in observable ways with a sigh, relief and interest.
Since there were not many responses from her about anything, it was very rewarding and exciting to get some from her.
Mostly the rest of the notes are a mystery now. Luckily for you you will have Charlotte's advice intact in other sections of this site or links to information about the exercises, clearly written and easy for you to use effectively.
The last line on the list: REST.
Who cares what she meant or who she meant it for. Take heed on that one!
I took notes while taking care of my mom after her stroke. Little scraps of paper, backs of envelopes and hospital pamphlets. Even so, I wish I had taken more notes and better ones. One thing is clear: I played an essential role as patient advocate. Even when the medical personnel are hopefully “on your side”, there are still so many decisions to make and complex issues to understand. I found it really beneficial to take notes, just to be able to make sense and remember half of what is said and also half of what you hope to ask the following day. Having access to a computer is important so you can research the terms thrown about is much easier these days. I am also always on the look-out for alternative and natural ways to deal with whatever comes my way, so research and talking with folks works for me.
I also recommend you seek out any and all information on Brain Gym. It will help reinforce the brief introduction you will read here, and is an essential aspect of the recovery in which I participated with my mom. There are now many YouTube that teach helpful Brain Gym exercises.
Within one day of her stroke, I left my home in California to go to New York armed only with my notes from Charlotte, my friend and Brain Gym instructor, my perseverance and love for my mother, and the blessed gift of my meditation practice to access the space to live in the present moment. What I came to realize is that I needed to have a lot more information every day to make decisions that would ensure my mother would get the best care possible. I took notes, but as you will see, I often confused myself by not writing enough down .
Here are some notes I took in intensive care:
Sundowner ~ lights off all night
no caffeine
lights ~ lower light ~ not scary
more light during the day
wake her up in day
I am not exactly sure anymore what this means. Should she have the lights on or off at night? Do they get Sundowner syndrome from the lights off all night? I do know that waking her up in the day will help her sleep better at night. What this note reminds me to say is, you will be needing to read pamphlets, do research, and wade through often fairly indecipherable materials, in order to even remotely be able to support your loved one.
During that time as I tried to understand Sundowners, my mother became very agitated when the night shift came on. I had no idea what was prompting such distress. The nurses said it was Sundowner Syndrome, which is true. It also turned out, the night nurses were tying her wrists to the bed to keep her from pulling out her IV and trying to get up and leave. I was horrified. But as I watched one evening she began to claw at the needle in her arm to get away. I didn't have an answer for that either. Earlier that day a nurse spoke with me about bringing in pictures or things that showed who my mom was... she said it helped nurses to see patents as real people, loving and lost and needing to be seen as worthy. I realized then why she said it to me because I soon found out that there was a heated battle between my mother and one particular night nurse.
Often the medical care can be a bit sketchy. The nurses are all very busy. There may be multiple doctors prescribing multiple medications. Though many doctors are reliable and conscientious, some prescribe by rote, not really paying attention to the specifics of the case, which might include medications reacting with other prescribed medications.
No one may be looking. You need to be looking, and if you are like I was, may not even know what to look for.
Check the medications. Read the inserts if possible. Ask how they all react with one another. Insist on answers and insist on what you believe to be correct. Ask your friends in the medical field. Talk to people you know who have been through something similar. Most of all, watch your loved one and make note of all symptoms and changes.
Another note I took when she was still in intensive care:
Physical therapy ~ acute rehabilitation in a couple of days
Stay 1 week/10 days
Go to rehab ~ Thur Fri/Sat
medications~ steroids ~ should not be on
These notes look like I was having a conversation with a nurse, who was in all likelihood talking very fast using unfamiliar terms at a time when I was extremely stressed.
This will probably happen to you. I recommend taking better notes than I did! When you get home, you are going to want to know what was said, who said it and of course be able to read your own hastily written words.
More notes:
X's on her back
OO on her back
X's on a hand or a pillow on her lap
with her eyes
Lazy 8's
arms ~ crossed lateral
textured pillow on her lap
can get stiff, sort of paralysis
Any touching on body, shoulders to her hips
Do CSA
Naval Radiation
These notes were taken during a call to Charlotte who dispersed advice repeatedly over the phone. I can tell you, if Charlotte told me to do it, I did it. Unless, of course, I couldn't understand my notes, which was, as you might be picking up, a consistent dilemma. Brain Gym activities, or at least my take on them, are interspersed throughout these sections.
I had to take my notes from my conversations with Charlotte to the hospital and later to the nursing home/ rehabilitation center to be able to remember to even DO the exercises. In the hospital I would go armed with the intention of doing Lazy 8's and Cross Crawls (more on this later) and then get somewhat paralyzed by the clinical setting. I am farily certian the above note "can get stiff, sort of paralysis” from the above notes was initially referring to the patien; it certainly described me many times.
There seemed to be an over arching sense all around me of, “Well, there is nothing to be done- it was a stroke after all. Here we are. Helpless... in the face of it all.” And I would succumb to that; even I... the one who was optimistically armed with the notes and intentions. I was winging it and doubrful sometimes, yet in reality still having such great success!! You can wing it too.
If you are a little like me though, you might succumb to Overwhelm. When I did, I would snap out of the stupor,
and take my mom's hand and draw X's or Lazy 8's in a way that she could watch me.
Anything I could think of to get me connected to myself and to her. And her to her body.
I would also try to remember one of the last lines of that note:
Any touching on body, shoulders to her hips
and I would simply touch her, giving light massage, even just light taps sometimes.
More notes taken while talking with Charlotte:
Naval radiation: Run naval (tummy) to head and back to tail. On Back.
Right arm ~ tips of fingers
left arm
right leg
left leg
Check about blood clots with doctor
Then can connect them together = homologous
Imagine there is a bubble of light ~ or what does she see
Then both feet to head and back to feet (centering dimension)
REST
I always checked with staff to see if what I was doing was acceptable and not a danger to her. The going repsonse was usually, "It can't hurt". Good enough for me.
The naval radiation was easy to do as soon as I adapted to reality, since she was sitting or lying in her bed the whole time. I did it all on her front. It was difficult to do anything on her back as she was immobile, but I would lean her forward as if to plump up the pillows and then sneak in a few Lazy 8's on her back before settling her back down.
She was always responsive to this in observable ways with a sigh, relief and interest.
Since there were not many responses from her about anything, it was very rewarding and exciting to get some from her.
Mostly the rest of the notes are a mystery now. Luckily for you you will have Charlotte's advice intact in other sections of this site or links to information about the exercises, clearly written and easy for you to use effectively.
The last line on the list: REST.
Who cares what she meant or who she meant it for. Take heed on that one!