Day off
Hi Friends,
Wow, this is the earliest I've ever written an entry! It's the earliest I've gotten home in weeks and weeks, and I won't lie, it feels good. I can tell you the kitties appreciate me being here, too...they haven't gotten much love and attention lately, but at least they have each other (they pretend to hate each other, but I'm sure they cuddle when no one's around).
This morning, I printed out some pictures I had on my computer from various activities of mom, me, friends and family so I could hang them up on the walls in her room. I feel like the more familiar things there that will help remind her of her life, the better. Hopefully they'll trigger memories and give her hope and encouragement. I could use some more though, so if anyone has any they can send me, I'd love it. I also put a couple up of the kitties. :)
I spent about a half hour with her before I went to lunch with Pam and Jillian, and in those short 30 minutes I managed to become despondent and feel wretched. Mom was her usual (of late) crabby, agitated self, and it just hit me like a ton of bricks today. It's wearing me down, because it feels like it doesn't make one bit of difference to her or her mood if I'm there or if I'm not. I know this is not true, and I know with my head that she simply cannot express herself appropriately right now...but that doesn't make it hurt my heart any less, and there are moments when I can't bear it. One of those moments was today, and I left in a horribly discouraged mood to meet the girls for lunch. I'm afraid I was despicable company throughout the meal, and though I know they completely understood, I still felt bad. I am so grateful to have such wonderful friends that they still want to hang out with me when I'm acting more like my mom is right now than my usual self. ;)
The massage did wonders to improve my outlook though...I really feel that these must be worked into my regularly scheduled activities (hell, I'd have one daily if I could afford it). To my surprise, for that one hour, I was truly able to relax and enjoy...this is not to say that my mind was able to stop wandering and that I didn't think about things...I did...but everything felt a little bit better to think about when someone was there whose job was solely to make me feel good and relaxed. When we were done, I felt better able to face the rest of the day, and my feeling of despair had subsided.
We stopped over at work (Labor & Delivery) so I could pick up a couple prescriptions one of the docs had written for me (to help me sleep), and I was able to say hi to a bunch of people I hadn't seen in ages. I miss everyone so much, so it was nice to visit. Then Jillian and I headed back over to see mom...she was pretty much the same as when I had been there earlier, but it was nice to have Jillian with me so I wouldn't have to shoulder it all myself. Dinh, her Care Manager (aka social worker, and whose name is pronounced "Zing") came in, and was very reassurring and wonderful. He could sense my feelings of discouragement, and he was quick to tell me mom was behaving in a very normal way for the stage in recovery she is in right now. He said they have had patients in this stage who have been so agitated they have been physically violent (some to the point of sending staff members to the ER with injuries!), so her agitation is very mild in comparison, and that she just has to ride it out. Unfortunately, that means I have to ride it out with her, and that's the hard part. But he encouraged me to make sure and take time for myself, that I have a LONG process ahead of me and that I should pace myself. So I took his advice, and left to go home early...around 6pm instead of my usual 8pm at the earliest.
And now I am home, relaxing with some leftover pot pie (thanks Meg Mark!) and a glass of wine. Hopefully the Ambien will help tonight, because tomorrow mom's rehab team is meeting to make a care plan for her, and then I have to meet with Dinh to discuss the plan, which includes a tentative discharge date and recovery goals. It will be quite a day, quite a meeting, and I need to "gird up my loins" for it, as mom would say. Wish us luck.
P.S. I am including this "Rancho Los Amigos Scale" which is used to determine the level of recovery at which person with a brain injury is at any given time, since I referred to it above and it will explain things better than I can. It also may shed some light for all of you.
I. No Response
Patient appears to be in a deep sleep and is unresponsive to stimuli.
II. Generalized Response
Patient reacts inconsistently and nonpurposefully to stimuli in a nonspecific manner. Reflexes are limited and often the same, regardless of stimuli presented.
III. Localized Response
Patient responses are specific but inconsistent, and are directly related to the type of stimulus presented, such as turning head toward a sound or focusing on a presented object. She may follow simple commands in an inconsistent and delayed manner.
IV. Confused-Agitated
Patient is in a heightened state of activity and severely confused, disoriented, and unaware of present events. Her behavior is frequently bizarre and inappropriate to her immediate environment. She is unable to perform self-care. If not physically disabled, she may perform automatic motor activities such as sitting, reaching and walking as part of her agitated state, but not necessarily as a purposeful act. [This is where mom is right now]
V. Confused-Inappropriate, Non-Agitated
Patient appears alert and responds to simple commands. More complex commands, however, produce responses that are nonpurposeful and random. The patient may show some agitated behavior - it is in response to external stimuli rather than internal confusion. The patient is highly distractible and generally has difficulty in learning new information. She can manage self-care activities with assistance. Her memory is impaired and verbalization is often inappropriate.
VI. Confused-Appropriate
Patient shows goal-directed behavior, but relies on cueing for direction. She can relearn old skills such as activities of daily living, but memory problems interfere with new learning. She has a beginning awareness of self and others.
VII. Automatic-Appropriate
Patient goes through daily routine automatically, but is robot-like with appropriate behavior and minimal confusion. She has shallow recall of activities, and superficial awareness of, but lack of insight to, his condition. She requires at least minimal supervision because judgment, problem solving, and planning skills are impaired.
VIII. Purposeful-Appropriate
Patient is alert and oriented, and is able to recall and integrate past and recent events. She can learn new activities and continue in home and living skills, though deficits in stress tolerance, judgment, abstract reasoning, social, emotional, and intellectual capacities may persist.
Wow, this is the earliest I've ever written an entry! It's the earliest I've gotten home in weeks and weeks, and I won't lie, it feels good. I can tell you the kitties appreciate me being here, too...they haven't gotten much love and attention lately, but at least they have each other (they pretend to hate each other, but I'm sure they cuddle when no one's around).
This morning, I printed out some pictures I had on my computer from various activities of mom, me, friends and family so I could hang them up on the walls in her room. I feel like the more familiar things there that will help remind her of her life, the better. Hopefully they'll trigger memories and give her hope and encouragement. I could use some more though, so if anyone has any they can send me, I'd love it. I also put a couple up of the kitties. :)
I spent about a half hour with her before I went to lunch with Pam and Jillian, and in those short 30 minutes I managed to become despondent and feel wretched. Mom was her usual (of late) crabby, agitated self, and it just hit me like a ton of bricks today. It's wearing me down, because it feels like it doesn't make one bit of difference to her or her mood if I'm there or if I'm not. I know this is not true, and I know with my head that she simply cannot express herself appropriately right now...but that doesn't make it hurt my heart any less, and there are moments when I can't bear it. One of those moments was today, and I left in a horribly discouraged mood to meet the girls for lunch. I'm afraid I was despicable company throughout the meal, and though I know they completely understood, I still felt bad. I am so grateful to have such wonderful friends that they still want to hang out with me when I'm acting more like my mom is right now than my usual self. ;)
The massage did wonders to improve my outlook though...I really feel that these must be worked into my regularly scheduled activities (hell, I'd have one daily if I could afford it). To my surprise, for that one hour, I was truly able to relax and enjoy...this is not to say that my mind was able to stop wandering and that I didn't think about things...I did...but everything felt a little bit better to think about when someone was there whose job was solely to make me feel good and relaxed. When we were done, I felt better able to face the rest of the day, and my feeling of despair had subsided.
We stopped over at work (Labor & Delivery) so I could pick up a couple prescriptions one of the docs had written for me (to help me sleep), and I was able to say hi to a bunch of people I hadn't seen in ages. I miss everyone so much, so it was nice to visit. Then Jillian and I headed back over to see mom...she was pretty much the same as when I had been there earlier, but it was nice to have Jillian with me so I wouldn't have to shoulder it all myself. Dinh, her Care Manager (aka social worker, and whose name is pronounced "Zing") came in, and was very reassurring and wonderful. He could sense my feelings of discouragement, and he was quick to tell me mom was behaving in a very normal way for the stage in recovery she is in right now. He said they have had patients in this stage who have been so agitated they have been physically violent (some to the point of sending staff members to the ER with injuries!), so her agitation is very mild in comparison, and that she just has to ride it out. Unfortunately, that means I have to ride it out with her, and that's the hard part. But he encouraged me to make sure and take time for myself, that I have a LONG process ahead of me and that I should pace myself. So I took his advice, and left to go home early...around 6pm instead of my usual 8pm at the earliest.
And now I am home, relaxing with some leftover pot pie (thanks Meg Mark!) and a glass of wine. Hopefully the Ambien will help tonight, because tomorrow mom's rehab team is meeting to make a care plan for her, and then I have to meet with Dinh to discuss the plan, which includes a tentative discharge date and recovery goals. It will be quite a day, quite a meeting, and I need to "gird up my loins" for it, as mom would say. Wish us luck.
P.S. I am including this "Rancho Los Amigos Scale" which is used to determine the level of recovery at which person with a brain injury is at any given time, since I referred to it above and it will explain things better than I can. It also may shed some light for all of you.
I. No Response
Patient appears to be in a deep sleep and is unresponsive to stimuli.
II. Generalized Response
Patient reacts inconsistently and nonpurposefully to stimuli in a nonspecific manner. Reflexes are limited and often the same, regardless of stimuli presented.
III. Localized Response
Patient responses are specific but inconsistent, and are directly related to the type of stimulus presented, such as turning head toward a sound or focusing on a presented object. She may follow simple commands in an inconsistent and delayed manner.
IV. Confused-Agitated
Patient is in a heightened state of activity and severely confused, disoriented, and unaware of present events. Her behavior is frequently bizarre and inappropriate to her immediate environment. She is unable to perform self-care. If not physically disabled, she may perform automatic motor activities such as sitting, reaching and walking as part of her agitated state, but not necessarily as a purposeful act. [This is where mom is right now]
V. Confused-Inappropriate, Non-Agitated
Patient appears alert and responds to simple commands. More complex commands, however, produce responses that are nonpurposeful and random. The patient may show some agitated behavior - it is in response to external stimuli rather than internal confusion. The patient is highly distractible and generally has difficulty in learning new information. She can manage self-care activities with assistance. Her memory is impaired and verbalization is often inappropriate.
VI. Confused-Appropriate
Patient shows goal-directed behavior, but relies on cueing for direction. She can relearn old skills such as activities of daily living, but memory problems interfere with new learning. She has a beginning awareness of self and others.
VII. Automatic-Appropriate
Patient goes through daily routine automatically, but is robot-like with appropriate behavior and minimal confusion. She has shallow recall of activities, and superficial awareness of, but lack of insight to, his condition. She requires at least minimal supervision because judgment, problem solving, and planning skills are impaired.
VIII. Purposeful-Appropriate
Patient is alert and oriented, and is able to recall and integrate past and recent events. She can learn new activities and continue in home and living skills, though deficits in stress tolerance, judgment, abstract reasoning, social, emotional, and intellectual capacities may persist.
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