Dad fell again early this morning. I'm not quite sure how it happened, the nursing home has had 2 different stories and I'm not sure how much I want to dig at it.
The call woke me up and I snuck out to the ER to be there for him. Fortunately, he's OK and Mom got her full night's sleep. I had not gotten to sleep at a decent hour and I came home in the mid-morning, exhausted to the bones, with the knot in my back hurting like white hot flame over my entire shoulder and neck. I crawled back into bed intending to take a nap, but realized that I just wanted to quit this whole caregiving thing and run screaming back to VA, but I was too tired to walk to the car.
So, just for today, I quit. It's mid-afternoon and I'm still in my pjs in bed. I asked Mom to go visit Dad without me. Maybe tonight I'll go to the movies, or maybe I'll just stay in bed.
Friday, March 27, 2009
Wednesday, March 25, 2009
Tuesday, Part 2
Just before dinner, the nursing home called. Dad had tried to go to the bathroom by himself and fell. According to policy, he had to go to the hospital and be checked out. He got X-rays and a head CT and was completely OK. Well, not completely, he was there for 5 hours, saw the nurse rarely and only saw the doctor once, so he was really annoyed by the end.
So I guess he's trying again. Trying to get stronger and trying my patience!
So I guess he's trying again. Trying to get stronger and trying my patience!
Tuesday, March 24, 2009
Dry Run
One of my favorite scenes from the sitcom Will and Grace is when Jack's Mom arrives for Thanksgiving dinner one day early, carrying an empty casserole dish. She claims she's doing a "dry run" for bringing her covered dish to Thanksgiving dinner the next day.
JUDITH McFARLAND: [ENTERING FROM THE ELEVATOR] Yello! Hot dish coming through. And she's carrying a casserole.
GRACE: Who's that?
WILL: Jack's mom.
JUDITH: Whew! 86 minutes. Not bad. Yeah.
WILL: Judith, you do realize that Thanksgiving is tomorrow.
JUDITH: I'm doing a dry run, Will. I wanted to see how long it would take me to get here while carrying a casserole dish. The other benefit of a dry run is that I power-walk the whole time while clenching my buttocks like so. You can't tell I'm doing anything, but my ass sure can. Oh.
http://www.twiztv.com/scripts/willandgrace/season2/willandgrace-208.htm
I love the idea of a "dry run". Whenever I go to the DMV, I always say I'm doing the dry run, so when I find out that I've got the wrong form or payment option, I'm not upset, I'll just do it right when I do it for real.
I think I got a "dry run" of how to let go of Dad. The nursing home called to tell me that Dad hasn't been very cooperative the past few days. He's been coughing on his food quite a bit, but won't let the speech therapist assess his swallowing ability. He's also not been letting them talk to me.
I know he's frustrated at how impaired he is, so I made follow up appointments with his oncologist and neurosurgeon (that was already on my to do list) for the first week of April. Then I headed over to see what was going on. Driving over I had images of moving him to hospice, backing his refusal of feeding tubes and just watching him slip away, and I wasn't sure I could do it yet. The tumor isn't growing, chemo is still working, I'm just not ready to give up yet. But on the other hand, it's not up to me.
When I got there, things weren't as bad as I feared, but clearly the staff needed some help getting him to cooperate. He and I have made a deal that he's not allowed to give up until AFTER he's talked to the oncologist. He's going to work with his therapists to the best of his ability until then. Then we'll see what the oncologist says about how we deal with the impairments. I've got the nursing home doctor talking to the oncologist's partner about what we can do in the meantime to make him less frustrated.
I'm not sure I'll call this dry run a success. I made it to the nursing home in about 30 minutes, including a stop for coffee, and I got things under control for the time being, which is good. I didn't authorize the staff to do anything he didn't want to do, which is good. I did guilt him into doing what I want him to do, and I'm not sure if that is good or not. Hopefully I learned enough in this dry run that I will do it "right" when I do it for real.
And no, I didn't clench my butt. It didn't even cross my mind. Maybe next time.
Thursday, March 19, 2009
Secret caregiving handshake?
I'm starting to think that caregivers need a secret handshake, there are so many of us.
Today became a really hard day. Dad's nurse called to tell us that he was headed out to a doctor's appointment that I knew nothing about, so I headed out to meet him at the doctor's office.
This doctor hadn't seen him since last spring, so he had no idea about the cancer, and was certainly not expecting such an impaired patient. The waiting room wasn't laid out well to accommodate his wheelchair and his nurses weren't really prepared to help him get in and out of the chair. When we finally got him situated on the examination table, I was at the end of my rope and found myself crying in the hallway outside of his exam room. One of the other nurses said "you must be the caregiver" and took me into a conference room, gave me some water and let me explain the entire story to the doctor in private.
I think I was most bothered by the indignity Dad was suffering. He needed strangers to help him in the bathroom and he nearly fell. He was exhausted from getting in and out of the chair and up and down off of the table. He couldn't clearly explain how he felt or what he wanted, and I just felt awful for him.
Once he was done, we loaded him back up and he went back to the nursing home and I headed out for some time to myself. I'm still tearing up really easily and just feel like going to bed and having today be over with.
Today became a really hard day. Dad's nurse called to tell us that he was headed out to a doctor's appointment that I knew nothing about, so I headed out to meet him at the doctor's office.
This doctor hadn't seen him since last spring, so he had no idea about the cancer, and was certainly not expecting such an impaired patient. The waiting room wasn't laid out well to accommodate his wheelchair and his nurses weren't really prepared to help him get in and out of the chair. When we finally got him situated on the examination table, I was at the end of my rope and found myself crying in the hallway outside of his exam room. One of the other nurses said "you must be the caregiver" and took me into a conference room, gave me some water and let me explain the entire story to the doctor in private.
I think I was most bothered by the indignity Dad was suffering. He needed strangers to help him in the bathroom and he nearly fell. He was exhausted from getting in and out of the chair and up and down off of the table. He couldn't clearly explain how he felt or what he wanted, and I just felt awful for him.
Once he was done, we loaded him back up and he went back to the nursing home and I headed out for some time to myself. I'm still tearing up really easily and just feel like going to bed and having today be over with.
Friday, March 13, 2009
Back to Square One
Last Thursday, Dad got out of the nursing home. Yesterday, he went back, by way of the hospital.
The good news, the tumor itself is no larger. There is more swelling around the tumor, but no growth. But, he's clearly back to square one in rehabilitation. His speech and motor skills are very impaired again. He's realized that he's been in medical facilities for an entire month and he's depressed. He's scared. He's miserable. Somehow tonight I found the strength to tell him that I'm scared too, and to ask him if he's still up for fighting. Fortunately, he is.
The stress is making Mom's dementia worse. This is not bringing out the best in me.
I finally got in touch with local Alzheimer's Association. I need help. They're sending a list of support groups and local resources for dealing with both parents.
This has been a rough 48 hours. I went to the public library and gorged on books!
The good news, the tumor itself is no larger. There is more swelling around the tumor, but no growth. But, he's clearly back to square one in rehabilitation. His speech and motor skills are very impaired again. He's realized that he's been in medical facilities for an entire month and he's depressed. He's scared. He's miserable. Somehow tonight I found the strength to tell him that I'm scared too, and to ask him if he's still up for fighting. Fortunately, he is.
The stress is making Mom's dementia worse. This is not bringing out the best in me.
I finally got in touch with local Alzheimer's Association. I need help. They're sending a list of support groups and local resources for dealing with both parents.
This has been a rough 48 hours. I went to the public library and gorged on books!
Sunday, March 1, 2009
Paying the Bills?
February 28 is a sad day, it's the first payday that I didn't get a check! Reality is here, I need to figure out how to pay the bills. I've got a fledgling tutoring business going but I need to put a little more effort into promoting it and get a few more clients. I've also applied for some part time work from ads on Craig's List.
Last week I was offered an interesting part-time teaching job, but I didn't feel right about it. The job had potential to be a time and energy suck, at a time that I really feel like I don't have much energy. I just kept feeling like "this job isn't why I'm here right now". Turning the job down required a conversation with my parents about possible emergency bailout loans. I have rarely asked for money from them, so it was very awkward.
My parents had very different reactions to it. Mom has always been the Financial Worrier in Chief of the family. Dad and I have always called her Squirrel Nutkin because of the way she squirrels money away. She's made a few comments that my financial concerns are my own fault and that she never asked me to go on leave from my job and be here. She admits that she's very grateful to have me here (most of the time) but she doesn't seem to get what I've given up to be here. I'm chalking it up to her dementia and trying not to be offended by it.
Dad has always one who felt that he worked hard to have money to do what we needed to do and ideally what we wanted to do. When asked about the money, he gave me a look of "of course, why are you asking?" and said "no problem".
So I've got a net if I need it, now I've got to try not to use it. Tutoring anyone?
Last week I was offered an interesting part-time teaching job, but I didn't feel right about it. The job had potential to be a time and energy suck, at a time that I really feel like I don't have much energy. I just kept feeling like "this job isn't why I'm here right now". Turning the job down required a conversation with my parents about possible emergency bailout loans. I have rarely asked for money from them, so it was very awkward.
My parents had very different reactions to it. Mom has always been the Financial Worrier in Chief of the family. Dad and I have always called her Squirrel Nutkin because of the way she squirrels money away. She's made a few comments that my financial concerns are my own fault and that she never asked me to go on leave from my job and be here. She admits that she's very grateful to have me here (most of the time) but she doesn't seem to get what I've given up to be here. I'm chalking it up to her dementia and trying not to be offended by it.
Dad has always one who felt that he worked hard to have money to do what we needed to do and ideally what we wanted to do. When asked about the money, he gave me a look of "of course, why are you asking?" and said "no problem".
So I've got a net if I need it, now I've got to try not to use it. Tutoring anyone?
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