Preparing to move my mom in has been a lot of work. As we get closer to the 'move date' on Saturday we find more and more little things that need fixing, painting, or replacing. The most recent was the light fixture in the downstairs closet.
Code allows for a fluorescent fixture. The closet came with a ceramic lighbulb holder with a pull string. The pull string broke years ago, so we've been making do with tightening and loosening the bulb as needed. And, in the spirit of code, we use a pig-tail bulb.
There is no possible way my mom is going to use this system. She's so afraid of electricity that she won't even change a lightbulb herself, let alone touch a 'live' one. While this particular anxiety makes me both laugh and smoke at the ears at the same time, there's nothing I can do about it except:
Add it to the list. Lord bless my hubby.
DeeDee
Tuesday, April 30, 2013
Thursday, April 25, 2013
Third Year, Week One - Unpainting.....
Over the past year we have painted nearly every room in our house. All the rooms are now neutral colors, not counting Babygirl's brilliant Chinese red. This morning I spent a couple of hours cleaning one small room, scraping and steel wool-ing years of accidental paint blops off of the floor. Unpainting, if you will.
As I worked I let memories of each room wash over me.
Curlygirl's vibrant October-sky blue, so at odds with her then restless and angry nature! I remember shopping for room accessories - the furry blue bedspread, the gypsy-bright ribbon valances with touches of green and deep purple, and the lime green pillows and wall shelf that all came together into the most lively and energetic of spaces.
NayNay's lavender, peacefully at odds with the storm inside.
JuJuBees's quiet morning blue, accented with gentle spring greens and tiny touches of bright pink and purple, restful with a hint of the restlessness that I still see in her.
Bella's hot, hot pink. Black curtains and a black border running at chair-rail height around the room like a belt. Intense and passionate, still her trademark qualities.
LittleMan's geometric diamonds in orange and green and navy on white walls - as busy and energetic as only little boys can be.
GiGi and Babygirl's pale orange sherbet, a color I mixed myself from leftover white paint and an 'oops' color from the hardware store, sweet and girlish.
Citygirl - so many changes over the years! The white room splattered with red, yellow, green, blue! Beautiful and bright, my monkey baby. Minnie Mouse pink, then a very mature forest green with white and lilac trim - my growing young lady. And finally, vivid Caribbean blue with dark blue sponge painting low down, a most fascinating underwater effect for teen parties.
Unpainting: Rewinding blessed, sweet memories of children who are no longer little, no longer in my hands or care, but never ever ever far from my heart. Unpainting, and uncovering the truths that truly matter: Love never ends. Childhood lives forever in the hearts of those who have loved children, no matter where those children go. I will always be their mother, and they will always be my babies. Always.
DeeDee
As I worked I let memories of each room wash over me.
Curlygirl's vibrant October-sky blue, so at odds with her then restless and angry nature! I remember shopping for room accessories - the furry blue bedspread, the gypsy-bright ribbon valances with touches of green and deep purple, and the lime green pillows and wall shelf that all came together into the most lively and energetic of spaces.
NayNay's lavender, peacefully at odds with the storm inside.
JuJuBees's quiet morning blue, accented with gentle spring greens and tiny touches of bright pink and purple, restful with a hint of the restlessness that I still see in her.
Bella's hot, hot pink. Black curtains and a black border running at chair-rail height around the room like a belt. Intense and passionate, still her trademark qualities.
LittleMan's geometric diamonds in orange and green and navy on white walls - as busy and energetic as only little boys can be.
GiGi and Babygirl's pale orange sherbet, a color I mixed myself from leftover white paint and an 'oops' color from the hardware store, sweet and girlish.
Citygirl - so many changes over the years! The white room splattered with red, yellow, green, blue! Beautiful and bright, my monkey baby. Minnie Mouse pink, then a very mature forest green with white and lilac trim - my growing young lady. And finally, vivid Caribbean blue with dark blue sponge painting low down, a most fascinating underwater effect for teen parties.
Unpainting: Rewinding blessed, sweet memories of children who are no longer little, no longer in my hands or care, but never ever ever far from my heart. Unpainting, and uncovering the truths that truly matter: Love never ends. Childhood lives forever in the hearts of those who have loved children, no matter where those children go. I will always be their mother, and they will always be my babies. Always.
DeeDee
Monday, April 22, 2013
Monday, Monday.....
I have often told people that I come to work to rest. It's not a witticism, it is the plain and simple truth.
I spent much of my weekend packing and moving and packing and moving and packing and moving stuff from my Mom's house to here, where I carry all the boxes up to the second floor to store until she actually moves in in two weeks. Babygirl was most helpful in this endeavor, carrying nearly as much as I did. Since JuJuBee still has (had) stuff upstairs, we brought THAT all down (hey, we were up there anyway) so she could carry it all up two flights of stairs to the attic. Babygirl helped with that as well.
When we finally come to UNpacking, every single thing is going to need a good hose-down to get rid of dust, cat fur and nicotine. I'd have done that before packing it all, but I wasn't the only one doing the packing (my Mom has one fantastic friend who is a packing demon!) and it will probably be simpler to clean things as they are being put away.
In the midst of all of this I still need to keep my side of the house kidney-transplant clean. I started cleaning before church on Sunday, and in the process discovered a pile of mail that included a bank statement. I had just paid bills the day before and would have balanced the checkbook if I'd known the statement was here, so I sat down and took care of it. Somewhere along the way a bit of panic set in - so MUCH to do, so little time in which to do it! So I did something I rarely ever do - I skipped church. The extra three hours did allow me to finish cleaning, so I could devote my afternoon to packing and moving and packing and moving and .....you get the idea.
My thighs are KILLING me.
DeeDee
I spent much of my weekend packing and moving and packing and moving and packing and moving stuff from my Mom's house to here, where I carry all the boxes up to the second floor to store until she actually moves in in two weeks. Babygirl was most helpful in this endeavor, carrying nearly as much as I did. Since JuJuBee still has (had) stuff upstairs, we brought THAT all down (hey, we were up there anyway) so she could carry it all up two flights of stairs to the attic. Babygirl helped with that as well.
When we finally come to UNpacking, every single thing is going to need a good hose-down to get rid of dust, cat fur and nicotine. I'd have done that before packing it all, but I wasn't the only one doing the packing (my Mom has one fantastic friend who is a packing demon!) and it will probably be simpler to clean things as they are being put away.
In the midst of all of this I still need to keep my side of the house kidney-transplant clean. I started cleaning before church on Sunday, and in the process discovered a pile of mail that included a bank statement. I had just paid bills the day before and would have balanced the checkbook if I'd known the statement was here, so I sat down and took care of it. Somewhere along the way a bit of panic set in - so MUCH to do, so little time in which to do it! So I did something I rarely ever do - I skipped church. The extra three hours did allow me to finish cleaning, so I could devote my afternoon to packing and moving and packing and moving and .....you get the idea.
My thighs are KILLING me.
DeeDee
Friday, April 19, 2013
Two Years......Week One-oh-four......
It was two years ago this week that Babygirl was diagnosed with nephronophthisis. Twenty months since she started dialyis. Almost fifteen months since her transplant.
There should be something profound for me to say.
I was talking about this with my Mom, and she said, "Well, what have you learned?"
"I've learned they can't fix her."
The pain I feel about all of this is still fresh and raw. I think that it's still so painful because there is never time to allow for healing. Just about the time a scab starts to form, something comes along and scrapes it off. Sepsis. (Scrape) Rejection. (Scraaape) Headaches. (SSScraaapppe) Biopsies. (Sandpaper) Spinal tap. (RRRIIIPPPPP) Dehydration. Missed school. Antibodies. Headaches. (Pick pick pick pick pick)
We travel to Philly next weekend. I could use a no-news visit.
And a ride on a rollercoaster - the real kind, not the emotional/medical kind.
DeeDee
There should be something profound for me to say.
I was talking about this with my Mom, and she said, "Well, what have you learned?"
"I've learned they can't fix her."
The pain I feel about all of this is still fresh and raw. I think that it's still so painful because there is never time to allow for healing. Just about the time a scab starts to form, something comes along and scrapes it off. Sepsis. (Scrape) Rejection. (Scraaape) Headaches. (SSScraaapppe) Biopsies. (Sandpaper) Spinal tap. (RRRIIIPPPPP) Dehydration. Missed school. Antibodies. Headaches. (Pick pick pick pick pick)
We travel to Philly next weekend. I could use a no-news visit.
And a ride on a rollercoaster - the real kind, not the emotional/medical kind.
DeeDee
Wednesday, April 17, 2013
The Definition of Insanity......
They say that insanity is defined by doing the same things over and over and expecting different results. We seem to be caught in that loop with my mom.
Two weeks ago she entered the hospital with extremely elevated blood pressure, fluid overload and congestive heart failure. She was admitted, discharged after three days with a small increase in one of her blood pressure medications and a restriction on her sodium intake (nothing new, and nothing she's likely to actually follow) and a restriction on her fluid intake (which no one told any of us about and she forgot about so she never did that either).
Sunday she was readmitted with exactly the same problems, only worse enough to land in the ICU. Yesterday I tried to convince them of the risks of fluid restriction (hard on her failing kidneys!) and that they should let her drink and find a way to treat the resulting fluid overload. Today they called me at work at 10 AM and told me she was all ready for discharge, and don't worry about the fluid restriction.
So my sister-in-law went to the hospital, listened for an hour as they described the diet Mom is supposed to follow, received information about her follow-up appointments, and brought her home. After work I went over to see what they had changed with regard to her medication schedule.
Nothing. They changed nothing.
Well, okay, they suggested that she take her vitamins at noon instead of with her morning medications so they wouldn't upset her stomach (they don't, and she takes her 'morning' meds at lunchtime which is when I'm free to call and remind her anyway). But there wasn't a single indication of and change in any dose of any medication AT ALL.
So, let me see if I understand this correctly:
Two weeks ago you treated her for fluid overload by giving her an in-hospital fluid restriction and then sent her home on exactly these meds with a fluid restriction she knew nothing about and did not follow, with the result that she took exactly two weeks to return to you in worse condition than she arrived in last time. Today, after treating her fluid overload with an in-hospital fluid restriction, you sent her home on exactly these meds without a fluid restriction. So somehow THIS time she's supposed to just be fine two weeks from now?
Hmmm....
And what's the upgrade from ICU next time? As we so rudely put it in medical school, "Discharged to Heaven"?
And there is no way I can attend her doctors' appointment tomorrow. I'll have to see about the one next week.
Crap.
DeeDee
Two weeks ago she entered the hospital with extremely elevated blood pressure, fluid overload and congestive heart failure. She was admitted, discharged after three days with a small increase in one of her blood pressure medications and a restriction on her sodium intake (nothing new, and nothing she's likely to actually follow) and a restriction on her fluid intake (which no one told any of us about and she forgot about so she never did that either).
Sunday she was readmitted with exactly the same problems, only worse enough to land in the ICU. Yesterday I tried to convince them of the risks of fluid restriction (hard on her failing kidneys!) and that they should let her drink and find a way to treat the resulting fluid overload. Today they called me at work at 10 AM and told me she was all ready for discharge, and don't worry about the fluid restriction.
So my sister-in-law went to the hospital, listened for an hour as they described the diet Mom is supposed to follow, received information about her follow-up appointments, and brought her home. After work I went over to see what they had changed with regard to her medication schedule.
Nothing. They changed nothing.
Well, okay, they suggested that she take her vitamins at noon instead of with her morning medications so they wouldn't upset her stomach (they don't, and she takes her 'morning' meds at lunchtime which is when I'm free to call and remind her anyway). But there wasn't a single indication of and change in any dose of any medication AT ALL.
So, let me see if I understand this correctly:
Two weeks ago you treated her for fluid overload by giving her an in-hospital fluid restriction and then sent her home on exactly these meds with a fluid restriction she knew nothing about and did not follow, with the result that she took exactly two weeks to return to you in worse condition than she arrived in last time. Today, after treating her fluid overload with an in-hospital fluid restriction, you sent her home on exactly these meds without a fluid restriction. So somehow THIS time she's supposed to just be fine two weeks from now?
Hmmm....
And what's the upgrade from ICU next time? As we so rudely put it in medical school, "Discharged to Heaven"?
And there is no way I can attend her doctors' appointment tomorrow. I'll have to see about the one next week.
Crap.
DeeDee
Tuesday, April 16, 2013
Arrangements.......
Mom is out of ICU. They have resumed the fluid restriction (1500 cc's/day - less than two quarts) that they failed to tell us about when they discharged her last week. I spoke to her nurse tonight and he has no idea what the ongoing plan is. The conversation went like this:
Me: There's a problem with the fluid restriction.
Nurse: And that is?
Me: She has dementia. They sent her home with this restriction two weeks ago today and she's back because you didn't tell us and she didn't remember. And even if she does remember, she's stubborn and she'll do whateverthehell she likes when she gets home.
Nurse: I'd noticed.
I pointed out the issue with the dementia and asked why the doctors weren't communicating with us more. He pointed out (politely) that he can't read their minds.
The nurses aid mumbled something about "institutions" and "arrangements" and "discharge planning" and gave me a number to call tomorrow. She informed me that the case manager comes in "wicked early:" 8 AM. This is, of course, when I start work. I guess if you work the evening shift 8 AM seems pretty early.
Sigh.
The sad thing is that I know that if they don't manage the fluid restriction, her heart will fail. If they DO manage the fluid restriction, her kidneys will fail.
It's a suckathon.
DeeDee
Me: There's a problem with the fluid restriction.
Nurse: And that is?
Me: She has dementia. They sent her home with this restriction two weeks ago today and she's back because you didn't tell us and she didn't remember. And even if she does remember, she's stubborn and she'll do whateverthehell she likes when she gets home.
Nurse: I'd noticed.
I pointed out the issue with the dementia and asked why the doctors weren't communicating with us more. He pointed out (politely) that he can't read their minds.
The nurses aid mumbled something about "institutions" and "arrangements" and "discharge planning" and gave me a number to call tomorrow. She informed me that the case manager comes in "wicked early:" 8 AM. This is, of course, when I start work. I guess if you work the evening shift 8 AM seems pretty early.
Sigh.
The sad thing is that I know that if they don't manage the fluid restriction, her heart will fail. If they DO manage the fluid restriction, her kidneys will fail.
It's a suckathon.
DeeDee
Monday, April 15, 2013
Peekaboo......
...I C U.
Just about the time I put up yesterdays' post, I got a call from my mom. She complained of being short of breath. We had just rented and started watching 'Lincoln.' I confess that this made me want to pretend she was fine, just fine.
"Take a couple of extra Lasix and call me back in half an hour if you don't pee."
I mean, seriously. I just spent the entire day with her, packing and moving stuff and balancing her checkbook. I have her dirty dishes filling my dishwasher. I'm tired, I've had a frozen rum cream with pineapple juice and there are brownies in the oven. And 'Lincoln,' dammit.
Five minutes later I get a call from my sister-in-law on my mom's phone, asking for clarification of instructions. It seems that mom was unable to open her pill bottle for the extra pills. And maybe she's not having THAT much trouble breathing.
Half an hour later she calls. She's produced some urine but she's still SOB (it's a medical abbreviation, okay?). I tell her to give it another twenty minutes and try to concentrate on Mary Todd Lincoln. Sally Field doesn't have to work too hard to get that accent right, right?
Twenty minutes and one brownie later she calls, no better. Or maybe better. She can't tell. I finally give up and tell her to get ready for me to pick her up and go to the ER. When I was 2/3 of the way there she called to tell me not to come, she's okay really.
When I got there she was breathing between words. She was clearly not breathing great when I was there earlier, but this is definitely worse. While she's struggling to stuff her swollen feet into a pair of clogs, I glance at her pill sorter. The morning's pills are still in there. And I know for sure I called her to remind her to take them because I also told her that I was coming over. I just didn't think to confirm while I was there earlier that she had actually TAKEN them. A quick glance at last weeks' pill sorter showed that she had missed five of fourteen doses. And I call her twice a day. Every day.
The ER waiting room was jammed. We skipped to the front of the line. A blood pressure of 229/89 with an oxygen saturation of only 73% (we're working on a 70 - 100 scale here folks) really gets folks hopping. We arrived at 10 and by 11:30 she was officially admitted and awaiting a bed in the ICU.
When we arrived in the ICU I pulled the 'do-you-know-who-I-am' card and refused to leave, explaining that she has dementia and that if they want the real story they'd better keep me nearby. Wouldn't you know that THIS would be the time that Mom knows the correct date and day of the week? I'm not sure that I knew these things for sure at that point since it was nearly 3 AM.
I arrived home after 4 AM, and my first patient is at 8. I guess I'd best get moving. And given that I have something going on every evening this week, I guess I'm not going to finish watching 'Lincoln.'
Sigh.
DeeDee
Just about the time I put up yesterdays' post, I got a call from my mom. She complained of being short of breath. We had just rented and started watching 'Lincoln.' I confess that this made me want to pretend she was fine, just fine.
"Take a couple of extra Lasix and call me back in half an hour if you don't pee."
I mean, seriously. I just spent the entire day with her, packing and moving stuff and balancing her checkbook. I have her dirty dishes filling my dishwasher. I'm tired, I've had a frozen rum cream with pineapple juice and there are brownies in the oven. And 'Lincoln,' dammit.
Five minutes later I get a call from my sister-in-law on my mom's phone, asking for clarification of instructions. It seems that mom was unable to open her pill bottle for the extra pills. And maybe she's not having THAT much trouble breathing.
Half an hour later she calls. She's produced some urine but she's still SOB (it's a medical abbreviation, okay?). I tell her to give it another twenty minutes and try to concentrate on Mary Todd Lincoln. Sally Field doesn't have to work too hard to get that accent right, right?
Twenty minutes and one brownie later she calls, no better. Or maybe better. She can't tell. I finally give up and tell her to get ready for me to pick her up and go to the ER. When I was 2/3 of the way there she called to tell me not to come, she's okay really.
When I got there she was breathing between words. She was clearly not breathing great when I was there earlier, but this is definitely worse. While she's struggling to stuff her swollen feet into a pair of clogs, I glance at her pill sorter. The morning's pills are still in there. And I know for sure I called her to remind her to take them because I also told her that I was coming over. I just didn't think to confirm while I was there earlier that she had actually TAKEN them. A quick glance at last weeks' pill sorter showed that she had missed five of fourteen doses. And I call her twice a day. Every day.
The ER waiting room was jammed. We skipped to the front of the line. A blood pressure of 229/89 with an oxygen saturation of only 73% (we're working on a 70 - 100 scale here folks) really gets folks hopping. We arrived at 10 and by 11:30 she was officially admitted and awaiting a bed in the ICU.
When we arrived in the ICU I pulled the 'do-you-know-who-I-am' card and refused to leave, explaining that she has dementia and that if they want the real story they'd better keep me nearby. Wouldn't you know that THIS would be the time that Mom knows the correct date and day of the week? I'm not sure that I knew these things for sure at that point since it was nearly 3 AM.
I arrived home after 4 AM, and my first patient is at 8. I guess I'd best get moving. And given that I have something going on every evening this week, I guess I'm not going to finish watching 'Lincoln.'
Sigh.
DeeDee
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