Decisions
Hi Friends,
Today was very overwhelming...Aunt Linda, Lilly and I met with Dinh to discuss options for discharge...it doesn't really seem there is a good option, and better yet, he wants my decision within about a week. They've decided to extend mom's stay at RIC by three weeks, which puts her discharge date at the end of November (I think 11/30)...however, because her destination will affect aspects of how they manage her care while she's still there, they need to know. It's crunch time, and I'm as clueless and lost as ever. It's not that I don't understand what the options are, because I do...of course, there are unanswered questions about all of them simply because the decision must be made before we know exactly where mom will be in her level of recovery at that point. And Dinh has told me he trusts that whatever decision I make will be the right one for us...that he knows I will have mom's best interests at heart. I hate that the decision must be made according to my lack of resources, or in spite of them.
If only I had a sibling or two to share in this process...my friends have been so great as a support to me, but when they're not family, there's only so far they will go because they are not bound to do so. Do I quit my job and get paid minimum wage to be her full-time caregiver? I can't quite imagine that. Do I take a stab in the dark at some agency to find a random caregiver who will accept minimum wage to come and care for my beloved mom while I'm at work? What if they neglect her or let her get hurt? On the flipside, what if I decide coming home is impossible at this point, and she goes to a nursing home, how do I trust them after all the horror stories that are out there? There are only so many places her insurance would cover, and most of them are not right in Chicago...so I wouln't be able to be there everyday to regulate and keep tabs on the care. Also, according to Dinh, sometimes it's difficult even for a pt to be "accepted" into a nursing home program at all, and that they have to right to deny her without giving a reason. So if I make a decision to send her to a nursing home (a thought which right now makes me shudder and shake and leak all kinds of things out of my eyes and nose), she might not even be accepted into one, so that would take us back to square one.
In my heart of hearts, I think the best place for her is to be at home...for her morale, her spirit, her environment and therefore her potential for maximum recovery. The questions remain...how will I work and take care of her and have someone with her when I cannot be? When she does the day rehab, how will she get to and from the rehab center everyday? It's not that close to where we live now. Will I have to find a different kind of nursing job to be more flexible? I'll probably have to get a bigger place to live. My whole life is changing in an instant, here, and it's a little overwhelming. I won't leave her high and dry, but holy crap. What on earth am I going to do? If only I could clone myself and send one to work and one could stay with mom. So that is what I'm dealing with now. Lucky me.
I was with mom for two out of three therapies today...speech and OT. Speech was good again today...not quite as "euphoric" as Satuday had been, and because she was getting tired, she wasn't doing so well on some of the listening skills and attention skills. But once again she was obsessed with the OJ, and none of us can wait until her swallow study tomorrow to determine how much she'll be able to have by mouth. Keep your fingers crossed she'll do well! She absolutely perseverates on wanting to eat and drink, and must constantly be redirected that what she is eyeing is not something she should try to eat or drink. So we'll see...the test is at 1pm, and I'd be there for it except I couldn't get the whole day off work, and I won't be done until 3:30pm, so I'll just hear about it. Anyway, so she started to get tired at the end of speech and needed some extra cues and encouragement (nothing like last week, but a bit in that direction). Immediately following speech was PT, and we walked around and around in the hall, first with the walker, and then without. Her balance is great, so she was doing well without the assistance of the walker! She wasn't always fond of what we were doing, but it was nothing like last week at all...she did need encouragement to keep going, though. Then she did some stairs...up four or five, and then back down again...she did that a few times, and did great! The lats activity I think she kind of enjoyed although she would have liked it even better if she wasn't so exhausted while doing it...we played catch with a spiky pink ball...she did it sitting down in the chair first, and then we made her stand up and do it to see how her balance would do...and she did great! I think we could have gone on had she not been so tired. We made it through about 50 of the 60 minutes of the session, and then as soon as we got her back in her room and she got into bed, she conked out for a good few hours. Aunt Linda and Lilly arrived, and we attended the Circle of Caring meeting...today's topic was "Functional Aspects of Brain Injury." It was facilitated by Laura, mom's occupational therapist, and was quite informative and interesting. It was attended by the three of us, the same family who was at the last one I attended (their son/grandson/friend was involved in a car accident over Labor Day weekend, so the time frame is very similar for our loved ones), and one of the patients.
After the session, we popped briefly into mom's room...she had apparently just had a 20 minute conversation with Aunt Betty while we were in the class...I have yet to find out how that went and what they talked about...we had to say goodnight because we had to rush off to grab a quick bite of dinner and then make it to the Steppenwolfe box office to pick up our tickets to "The Crucible," which started at 7:30pm. It was a little treat, and a little distraction, so we made it in plenty of time, and I'm sure mom would have loved to be making commentary on it post-show. We'll tell her about it tomorrow, but didn't have the heart to tell her we were leaving to do anything but have dinner, because she would have been so sad not to have been able to come to a play with us. :( She already was telling us she wished she could come to dinner. Ugh.
Well, tomorrow I work 8 hours, so I'll be able to meet up with Lilly and Aunt Linda after for the Halloween festivities with mom, I guess. They got some construction paper and other craft supplies for making paper jack-o-lanterns and stuff, so hopefully mom will get a kick out of that. She was always a creative gal. Should be fun for her.
One more reminder for those of us in healthcare...as I was arriving at RIC today and was taking the elevator up, there were two medical students in the elevator with the rest of us. They were loudly discussing my mom's case, specifically how there were two separate accounts of the accident in different notes, and went into detail about each of these accounts. Now, they never actually violated the patient privacy act by using any names, but it was crystal clear they were talking about my mom, and I was hanging on their words, so shocked to be hearing this, that I didn't say anything to them before I got off the elevator. But once I did get off, I made a beeline for the nurse manager's office and she wasn't there but a nurse I know, Terri, was there and I started bawling and shaking and told her what happened. It escalated to the nurse manager, the case manager, and the medical director, who plans to have a discussion with the med students to reeducate them regarding this behavior and practice. It's not like I'm not over it by now, but it was pretty upsetting at the time, and I will forever be more cognizant of what I talk about in public areas...simply because names aren't used, a family member present knows any details of their loved one's case will be able to tell exactly who you're talking about, and it is very disconcerting and shocking. So, please everyone be careful. It's not fun on the other end.
Love to all, still waiting to hear your perceptions of Bev. See previous blog entry. Off to bed now, the meds are kicking in. ;)
Today was very overwhelming...Aunt Linda, Lilly and I met with Dinh to discuss options for discharge...it doesn't really seem there is a good option, and better yet, he wants my decision within about a week. They've decided to extend mom's stay at RIC by three weeks, which puts her discharge date at the end of November (I think 11/30)...however, because her destination will affect aspects of how they manage her care while she's still there, they need to know. It's crunch time, and I'm as clueless and lost as ever. It's not that I don't understand what the options are, because I do...of course, there are unanswered questions about all of them simply because the decision must be made before we know exactly where mom will be in her level of recovery at that point. And Dinh has told me he trusts that whatever decision I make will be the right one for us...that he knows I will have mom's best interests at heart. I hate that the decision must be made according to my lack of resources, or in spite of them.
If only I had a sibling or two to share in this process...my friends have been so great as a support to me, but when they're not family, there's only so far they will go because they are not bound to do so. Do I quit my job and get paid minimum wage to be her full-time caregiver? I can't quite imagine that. Do I take a stab in the dark at some agency to find a random caregiver who will accept minimum wage to come and care for my beloved mom while I'm at work? What if they neglect her or let her get hurt? On the flipside, what if I decide coming home is impossible at this point, and she goes to a nursing home, how do I trust them after all the horror stories that are out there? There are only so many places her insurance would cover, and most of them are not right in Chicago...so I wouln't be able to be there everyday to regulate and keep tabs on the care. Also, according to Dinh, sometimes it's difficult even for a pt to be "accepted" into a nursing home program at all, and that they have to right to deny her without giving a reason. So if I make a decision to send her to a nursing home (a thought which right now makes me shudder and shake and leak all kinds of things out of my eyes and nose), she might not even be accepted into one, so that would take us back to square one.
In my heart of hearts, I think the best place for her is to be at home...for her morale, her spirit, her environment and therefore her potential for maximum recovery. The questions remain...how will I work and take care of her and have someone with her when I cannot be? When she does the day rehab, how will she get to and from the rehab center everyday? It's not that close to where we live now. Will I have to find a different kind of nursing job to be more flexible? I'll probably have to get a bigger place to live. My whole life is changing in an instant, here, and it's a little overwhelming. I won't leave her high and dry, but holy crap. What on earth am I going to do? If only I could clone myself and send one to work and one could stay with mom. So that is what I'm dealing with now. Lucky me.
I was with mom for two out of three therapies today...speech and OT. Speech was good again today...not quite as "euphoric" as Satuday had been, and because she was getting tired, she wasn't doing so well on some of the listening skills and attention skills. But once again she was obsessed with the OJ, and none of us can wait until her swallow study tomorrow to determine how much she'll be able to have by mouth. Keep your fingers crossed she'll do well! She absolutely perseverates on wanting to eat and drink, and must constantly be redirected that what she is eyeing is not something she should try to eat or drink. So we'll see...the test is at 1pm, and I'd be there for it except I couldn't get the whole day off work, and I won't be done until 3:30pm, so I'll just hear about it. Anyway, so she started to get tired at the end of speech and needed some extra cues and encouragement (nothing like last week, but a bit in that direction). Immediately following speech was PT, and we walked around and around in the hall, first with the walker, and then without. Her balance is great, so she was doing well without the assistance of the walker! She wasn't always fond of what we were doing, but it was nothing like last week at all...she did need encouragement to keep going, though. Then she did some stairs...up four or five, and then back down again...she did that a few times, and did great! The lats activity I think she kind of enjoyed although she would have liked it even better if she wasn't so exhausted while doing it...we played catch with a spiky pink ball...she did it sitting down in the chair first, and then we made her stand up and do it to see how her balance would do...and she did great! I think we could have gone on had she not been so tired. We made it through about 50 of the 60 minutes of the session, and then as soon as we got her back in her room and she got into bed, she conked out for a good few hours. Aunt Linda and Lilly arrived, and we attended the Circle of Caring meeting...today's topic was "Functional Aspects of Brain Injury." It was facilitated by Laura, mom's occupational therapist, and was quite informative and interesting. It was attended by the three of us, the same family who was at the last one I attended (their son/grandson/friend was involved in a car accident over Labor Day weekend, so the time frame is very similar for our loved ones), and one of the patients.
After the session, we popped briefly into mom's room...she had apparently just had a 20 minute conversation with Aunt Betty while we were in the class...I have yet to find out how that went and what they talked about...we had to say goodnight because we had to rush off to grab a quick bite of dinner and then make it to the Steppenwolfe box office to pick up our tickets to "The Crucible," which started at 7:30pm. It was a little treat, and a little distraction, so we made it in plenty of time, and I'm sure mom would have loved to be making commentary on it post-show. We'll tell her about it tomorrow, but didn't have the heart to tell her we were leaving to do anything but have dinner, because she would have been so sad not to have been able to come to a play with us. :( She already was telling us she wished she could come to dinner. Ugh.
Well, tomorrow I work 8 hours, so I'll be able to meet up with Lilly and Aunt Linda after for the Halloween festivities with mom, I guess. They got some construction paper and other craft supplies for making paper jack-o-lanterns and stuff, so hopefully mom will get a kick out of that. She was always a creative gal. Should be fun for her.
One more reminder for those of us in healthcare...as I was arriving at RIC today and was taking the elevator up, there were two medical students in the elevator with the rest of us. They were loudly discussing my mom's case, specifically how there were two separate accounts of the accident in different notes, and went into detail about each of these accounts. Now, they never actually violated the patient privacy act by using any names, but it was crystal clear they were talking about my mom, and I was hanging on their words, so shocked to be hearing this, that I didn't say anything to them before I got off the elevator. But once I did get off, I made a beeline for the nurse manager's office and she wasn't there but a nurse I know, Terri, was there and I started bawling and shaking and told her what happened. It escalated to the nurse manager, the case manager, and the medical director, who plans to have a discussion with the med students to reeducate them regarding this behavior and practice. It's not like I'm not over it by now, but it was pretty upsetting at the time, and I will forever be more cognizant of what I talk about in public areas...simply because names aren't used, a family member present knows any details of their loved one's case will be able to tell exactly who you're talking about, and it is very disconcerting and shocking. So, please everyone be careful. It's not fun on the other end.
Love to all, still waiting to hear your perceptions of Bev. See previous blog entry. Off to bed now, the meds are kicking in. ;)
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