Mama is not doing well today.
She had a weird night. One of Mom's goals is to waken me as little as possible, which is of course a lovely goal and I'm not complaining. I know that she is awake much more than the few times she calls me, because I hear her set her glass down after taking a sip of water and I hear her check her clock and I hear her adjust her bed. This morning when she rang for me in the wee hours, I went in to find her feet uncovered and her pillow missing. She seemed unaware and just wanted to use the bedpan. When I asked what happened to her pillow, she asked if I would find it for her. At first I couldn't see it because it was stuck down under the bedframe and I had to tug it out. While I was searching for Mom's pillow, I found the clock centrally located under the bed as well. Just weird.
Today, as I was asking Mom about it, she decided she must have had some "struggle" in the night. As she lined it out, saying she had adjusted the bed and lost her pillow and it must have been related to her breathing, I told her I thought that would be a great time to ring for me so I could help. But she said she wasn't aware at the time. I don't know if Mom is remembering, or if she is just supposing. So hard to say.
This morning, after she declined a change and had her coffee and breakfast, Mom was sitting at the front window and I was sitting at the dining room table maybe 15 feet away. Mom called out in her whispery voice, "Frozen Coffee!" I walked over and said, "Are you asking for your frapp from the freezer?" Mom said, "Take. My. Frozen. Coffee. Out." I asked Mom if she was having trouble breathing and she said, "I might be." Then Mom said, "I'm thinking about the drops." Morphine. Mom willingly took morphine today, twice so far, to help with her breathing. So you know it's bad.
But she's still eating, small portions but regular meals. All bodily functions still operating regularly as well. Probably half the time, Mom needs assistance to transfer from wheelchair to bed, and most of the time we lift the head of the bed to help her sit up to move to the wheelchair. Out of 24 hours, she still spends 4-6 hours awake and sitting up. I know Mom is eager for the end, and I know it is coming, but it's not here yet. And she's not happy about that!
As I was raising the head of the bed to facilitate Mom getting up after her morning nap, she made some small sound of distress. I stopped the bed.
Gwen: What is it?
Mom: Oh...well...
Gwen: Will you tell me what's bothering you?
Mom: [Gets self out of bed and into wheelchair without assistance. In silence. I rub phenergan on her wrists as previously requested.] It's my general condition. And I remember what Dr. L______ said. Do you remember?
Gwen: [Gathers Mom's things into her little bag. Thinks to self, "Yeah. He said the edema in your legs would never get better. Boom."] What's that?
Mom: He said I would go fast at the end. And I'm going downhill fast.
Gwen: [brushing Mom's hair] What do you mean?
Mom: Oh, my breathing and my weakness.
Gwen: You just got out of bed and into the wheelchair under your own steam.
Mom: I'm glad you don't talk much.
Wednesday, June 20, 2012
Tuesday, June 19, 2012
Obsessions
It started like this.
Gwen: Mom, I need to call a plumber. Meg discovered that the off and on foul smell from the bedroom closet is a leak coming from the master bath.
Mom: I knew about that leak. I guess I should have mentioned it.
And grew and grew.
Gwen: [at 3:00 a.m. diaper change] Here's your bedpan, Ma.
Mom: Gwen, I've been thinking about that bathroom.
Gwen: Um, could we talk about this in the daytime?
Into this.
Mom: Did Dad ever tell you his thoughts about that toilet?
Gwen: No, I don't think we ever talked about the toilet.
Mom: Huh.
Gwen: Did Dad tell you what he thought about the toilet?
Mom: Yes, it took two flushes.
Gwen: Oh. That's because it's new. All the new toilets have low flow.
Mom: Well, maybe we should replace it. It leaks out around the bottom.
Gwen: The plumber lifted it up and put a new wax ring on, then he sealed all around it. I don't think we need a new toilet.
Mom: Did you have him check the lavatory spigot? Because it doesn't work right and it leaks under the cabinet.
Have I mentioned before that Mom gets stuck on things? She rolls something around and around in her mind until it is literally all she thinks about. Sometimes it is a spiritual concern, sometimes something physical. It can be from long ago or from the present. Often it is a person, relative or otherwise. And sometimes it is a project.
My philosophy is "If it ain't broke don't fix it." Usually Mom's philosophy is "If it's broke, just use it anyway. New things are expensive." (Witness the previous knowledge of nasty plumbing problems, but inactivity and even withholding of information.) But somehow we have moved from the shower repair (which will alleviate the leaky closet) to one new toilet, two new sink fixtures, and a new shower. I have held fast on refusing new floor tile and replacing the five year old toilet.
If you have been the object of one of Mom's obsessions before, you know how oddly relentless she is until she feels her work is done, often with less than pleasant results. You should all be happy to know her mind is currently occupied with the bathrooms and with me. You are safe for now.
You're welcome.
Gwen: Mom, I need to call a plumber. Meg discovered that the off and on foul smell from the bedroom closet is a leak coming from the master bath.
Mom: I knew about that leak. I guess I should have mentioned it.
And grew and grew.
Gwen: [at 3:00 a.m. diaper change] Here's your bedpan, Ma.
Mom: Gwen, I've been thinking about that bathroom.
Gwen: Um, could we talk about this in the daytime?
Into this.
Mom: Did Dad ever tell you his thoughts about that toilet?
Gwen: No, I don't think we ever talked about the toilet.
Mom: Huh.
Gwen: Did Dad tell you what he thought about the toilet?
Mom: Yes, it took two flushes.
Gwen: Oh. That's because it's new. All the new toilets have low flow.
Mom: Well, maybe we should replace it. It leaks out around the bottom.
Gwen: The plumber lifted it up and put a new wax ring on, then he sealed all around it. I don't think we need a new toilet.
Mom: Did you have him check the lavatory spigot? Because it doesn't work right and it leaks under the cabinet.
Have I mentioned before that Mom gets stuck on things? She rolls something around and around in her mind until it is literally all she thinks about. Sometimes it is a spiritual concern, sometimes something physical. It can be from long ago or from the present. Often it is a person, relative or otherwise. And sometimes it is a project.
My philosophy is "If it ain't broke don't fix it." Usually Mom's philosophy is "If it's broke, just use it anyway. New things are expensive." (Witness the previous knowledge of nasty plumbing problems, but inactivity and even withholding of information.) But somehow we have moved from the shower repair (which will alleviate the leaky closet) to one new toilet, two new sink fixtures, and a new shower. I have held fast on refusing new floor tile and replacing the five year old toilet.
If you have been the object of one of Mom's obsessions before, you know how oddly relentless she is until she feels her work is done, often with less than pleasant results. You should all be happy to know her mind is currently occupied with the bathrooms and with me. You are safe for now.
You're welcome.
Friday, June 15, 2012
And Then
Mom rang for her coffee at 9:00 this morning. She did her normal morning routine and ate an egg over easy and half a piece of Panera bread toast. Now she's sitting in front of the window, reading her one year Bible.
My dear friend said it perfectly:
Roll on rollercoaster. Roll on.
My dear friend said it perfectly:
Roll on rollercoaster. Roll on.
Thursday, June 14, 2012
Perspective
Emily Dickinson and I have something in common. She also lived in her family home and took care of her invalid mother. And she also talked about death a lot.
There are a few minor differences between us still, for instance, the famed and beloved poetry, the agoraphobia, the whole white dress thing, and oh yes, the fact that Emily Dickinson tended to her invalid mother for thirty years. THIRTY YEARS.
So, I shall stop my sniveling and just quietly back away, leaving you with this lovely line ED wrote in a letter following her mother's death:
"The dear Mother that could not walk, has flown. It never occurred to us that she had not Limbs, she had Wings—-and she soared from us unexpectedly as a summoned Bird—-" Emily Dickinson
(Just to avoid any confusion, also unlike Emily Dickinson, at the time of this writing my mother is still living. I just thought the quote was lovely.)
There are a few minor differences between us still, for instance, the famed and beloved poetry, the agoraphobia, the whole white dress thing, and oh yes, the fact that Emily Dickinson tended to her invalid mother for thirty years. THIRTY YEARS.
So, I shall stop my sniveling and just quietly back away, leaving you with this lovely line ED wrote in a letter following her mother's death:
"The dear Mother that could not walk, has flown. It never occurred to us that she had not Limbs, she had Wings—-and she soared from us unexpectedly as a summoned Bird—-" Emily Dickinson
(Just to avoid any confusion, also unlike Emily Dickinson, at the time of this writing my mother is still living. I just thought the quote was lovely.)
Watershed
Maybe. I'm not sure. I just have a feeling about today.
It started out like a normal day, except Mom slept a little late til 8:15. She climbed out of bed and into her wheelchair without assistance. She wanted her egg and toast for breakfast and she drank her coffee. She wanted a cup of ice. Cassandra/Carissa/Keturah/Acturah came early and massaged Mom's feet and legs while she sat by the window. Then Mom wanted to go back to bed at 9:30. She asked for some phenergan cream for nausea.
And she asked for her nausea medicine every two hours for the rest of the day. When she rang for me at 11:00, she said, "I've just taken the shortest nap I've ever had!" Um, nope. She was very wobbly getting out of bed and never fully straightened up, just sort of hunched over to the wheelchair. Mom wanted phenergan cream and lunch. What a combo! But she just took a couple of small bites from her turkey, cheese and tomato on wheat. (And then asked for it to be kept in a baggie. Of course.) By 12:30 she was ready to nap again.
Woke at 1:15, nausea meds, back to sleep.
Up at 3:00.
Back to bed at 4:30.
Woke for nausea meds and thought she should get up since she had been in bed since 3:00. Um, nope.
And so on and so forth. All day, Mom's preferred methods of communication with me were head nods/shakes, mysterious index finger signals, or single words. Something like this, following a diaper change and bedpan usage:
Gwen: Mom, what would you like to do now? Do you want to sleep some more or would you like to get up?
Mom: [wiggles index finger twice]
Gwen: Does that mean you want to stay in bed?
Mom: Up.
Or like this, when I parked Mom at the window:
Gwen: Can I get you anything?
Mom: [stares off into distance while slowly turning head side to side]
Gwen: Are you thinking, or does that mean "No thank you."
Mom: [whispers] No thank you.
Or like this, while helping Mom to bed for a nap:
Gwen: Would you like your rice bag?
Mom: [whispers] No.
Gwen: Would you like your oxygen?
Mom: [reaches for cannula]
Gwen: Is your throat dry? Would you like a drink?
Mom: [whispers] No.
Gwen: Why are you whispering?
Mom: [whispers] I'm tired.
And she is so very tired. I set her toothbrushing things before her at her request and she just sat and looked at them for a while. She is having trouble holding onto time and date. I think I will print out a time sheet and jot things down for her so she can keep track of what has happened in the day.
But that's the thing. I really have the feeling that she might be going Home tonight. I told the kids so they would be sure to tuck their Grandma in and give her their love. And of course, I told them I could be wrong. I certainly didn't call it with Dad. Who knows?
At the least, I do think it is a turning point for Mom, a steeper incline on the downhill slide. And maybe this is her night to fly away. I know she would be so glad to go.
It started out like a normal day, except Mom slept a little late til 8:15. She climbed out of bed and into her wheelchair without assistance. She wanted her egg and toast for breakfast and she drank her coffee. She wanted a cup of ice. Cassandra/Carissa/Keturah/Acturah came early and massaged Mom's feet and legs while she sat by the window. Then Mom wanted to go back to bed at 9:30. She asked for some phenergan cream for nausea.
And she asked for her nausea medicine every two hours for the rest of the day. When she rang for me at 11:00, she said, "I've just taken the shortest nap I've ever had!" Um, nope. She was very wobbly getting out of bed and never fully straightened up, just sort of hunched over to the wheelchair. Mom wanted phenergan cream and lunch. What a combo! But she just took a couple of small bites from her turkey, cheese and tomato on wheat. (And then asked for it to be kept in a baggie. Of course.) By 12:30 she was ready to nap again.
Woke at 1:15, nausea meds, back to sleep.
Up at 3:00.
Back to bed at 4:30.
Woke for nausea meds and thought she should get up since she had been in bed since 3:00. Um, nope.
And so on and so forth. All day, Mom's preferred methods of communication with me were head nods/shakes, mysterious index finger signals, or single words. Something like this, following a diaper change and bedpan usage:
Gwen: Mom, what would you like to do now? Do you want to sleep some more or would you like to get up?
Mom: [wiggles index finger twice]
Gwen: Does that mean you want to stay in bed?
Mom: Up.
Or like this, when I parked Mom at the window:
Gwen: Can I get you anything?
Mom: [stares off into distance while slowly turning head side to side]
Gwen: Are you thinking, or does that mean "No thank you."
Mom: [whispers] No thank you.
Or like this, while helping Mom to bed for a nap:
Gwen: Would you like your rice bag?
Mom: [whispers] No.
Gwen: Would you like your oxygen?
Mom: [reaches for cannula]
Gwen: Is your throat dry? Would you like a drink?
Mom: [whispers] No.
Gwen: Why are you whispering?
Mom: [whispers] I'm tired.
And she is so very tired. I set her toothbrushing things before her at her request and she just sat and looked at them for a while. She is having trouble holding onto time and date. I think I will print out a time sheet and jot things down for her so she can keep track of what has happened in the day.
But that's the thing. I really have the feeling that she might be going Home tonight. I told the kids so they would be sure to tuck their Grandma in and give her their love. And of course, I told them I could be wrong. I certainly didn't call it with Dad. Who knows?
At the least, I do think it is a turning point for Mom, a steeper incline on the downhill slide. And maybe this is her night to fly away. I know she would be so glad to go.
Wednesday, June 13, 2012
Seriously, God?
***WARNING: Skip this entry if you are squeamish in the least. Or if you have a problem with ranting at God. ***
I mean, seriously?
It's not enough that I change my mother's diapers and empty her bedpan?
It's not enough that the city only collects trash once a week and after seven days of diaper changes every two hours plus life with seven people plus temps in the nineties our trash is overflowing and filled with maggots so I get to boil them and bleach them and scrub down the trash can?
Did we really have to add maggots all over the kitchen floor to the list of horrors?
Seriously???
I mean, seriously?
It's not enough that I change my mother's diapers and empty her bedpan?
It's not enough that the city only collects trash once a week and after seven days of diaper changes every two hours plus life with seven people plus temps in the nineties our trash is overflowing and filled with maggots so I get to boil them and bleach them and scrub down the trash can?
Did we really have to add maggots all over the kitchen floor to the list of horrors?
Seriously???
Saturday, June 9, 2012
Back in the Saddle Again
(Nothing like a little Aerosmith soundtrack in your head to start the day off right.)
My dear sister in law Cathy has flown back to KC. She came last Wednesday intending to stay for a week, then extended her visit through yesterday. (Pity? Fear? Grace?) I am so grateful. During Cathy's time here with Mom, I was able to:
*Haul boxes to storage and Mom's house
*Have dinner with my besty from high school
*Get sick and spend an early night plus all the next day in bed
*Go to church
*Take Dave to the airport for his two weeks of studies in California
*Have dinner out with Ev
*Move most of the lake house furniture to storage (thank you Perry and football boys and Pickerings and Smith boys oh and Bret for the trailer)
*Paint the trim in the upstairs of the lake house
*Pack up master bedroom and bathroom
*Run errands and tote children
As I've come to expect, I was disappointed with myself about the lake house. In my mind, I think I should be able to work around the clock and get the place ready to sell. The reality however is that working at the lake house is so emotionally draining, I can't take an all-day session. It is better now that most of the moving is done and we are down to cleaning and painting. We are hoping to knock it out when Gayle comes at the end of June.
Mama is losing ground. She is sleeping more and more, spending only about 5 hours awake out of every 24. It is harder and harder for her to get out of bed and she doesn't like assistance. Nurse Christy surmises it won't be long before she doesn't get out of bed at all. Mom's appetite comes and goes. Yesterday after Cathy left, Mom didn't eat anything at all for the rest of the day. She did have breakfast this morning, an egg and a half piece of toast. She drinks her half cup of coffee, and crunches on some ice throughout the day. Not much to go on.
Mom's emotional state ebbs and flows as well. She was very thankful for Cathy's care. She has said kind words here and there to others, especially Cassandra/Carissa/Keturah and Nurse Christy. But she is still Mom and is weary and gets annoyed with people for being human. She still gets "stuck" on things which are beyond her control and worries them around in her mind and refuses to pray. And we all know how ugly that can be. Cathy and I discussed telling Mom that Nate needs her phone just so she would no longer have means to share her mind with others.
Mom is of course still longing for this struggle to be over. I don't know why she must linger while others are taken who want to stay. She feels she is close to death, but truthfully she's felt close for a long time. It could be wishful thinking on her part, or it could be that she has always been so strong and cannot imagine living in such a weakened state. Honestly, I don't think Mom will go anytime soon unless her heart gives out. She's still eating and drinking enough to sustain; all systems still function; she still reads and occasionally watches her programs. The Big Evil takes up about 1/3 of her abdomen, but Mom still maintains it causes her no pain. (Just don't touch it or she winces.)
So on we go into the unknown. Onward and upward, and try as we might, not gently.
My dear sister in law Cathy has flown back to KC. She came last Wednesday intending to stay for a week, then extended her visit through yesterday. (Pity? Fear? Grace?) I am so grateful. During Cathy's time here with Mom, I was able to:
*Haul boxes to storage and Mom's house
*Have dinner with my besty from high school
*Get sick and spend an early night plus all the next day in bed
*Go to church
*Take Dave to the airport for his two weeks of studies in California
*Have dinner out with Ev
*Move most of the lake house furniture to storage (thank you Perry and football boys and Pickerings and Smith boys oh and Bret for the trailer)
*Paint the trim in the upstairs of the lake house
*Pack up master bedroom and bathroom
*Run errands and tote children
As I've come to expect, I was disappointed with myself about the lake house. In my mind, I think I should be able to work around the clock and get the place ready to sell. The reality however is that working at the lake house is so emotionally draining, I can't take an all-day session. It is better now that most of the moving is done and we are down to cleaning and painting. We are hoping to knock it out when Gayle comes at the end of June.
Mama is losing ground. She is sleeping more and more, spending only about 5 hours awake out of every 24. It is harder and harder for her to get out of bed and she doesn't like assistance. Nurse Christy surmises it won't be long before she doesn't get out of bed at all. Mom's appetite comes and goes. Yesterday after Cathy left, Mom didn't eat anything at all for the rest of the day. She did have breakfast this morning, an egg and a half piece of toast. She drinks her half cup of coffee, and crunches on some ice throughout the day. Not much to go on.
Mom's emotional state ebbs and flows as well. She was very thankful for Cathy's care. She has said kind words here and there to others, especially Cassandra/Carissa/Keturah and Nurse Christy. But she is still Mom and is weary and gets annoyed with people for being human. She still gets "stuck" on things which are beyond her control and worries them around in her mind and refuses to pray. And we all know how ugly that can be. Cathy and I discussed telling Mom that Nate needs her phone just so she would no longer have means to share her mind with others.
Mom is of course still longing for this struggle to be over. I don't know why she must linger while others are taken who want to stay. She feels she is close to death, but truthfully she's felt close for a long time. It could be wishful thinking on her part, or it could be that she has always been so strong and cannot imagine living in such a weakened state. Honestly, I don't think Mom will go anytime soon unless her heart gives out. She's still eating and drinking enough to sustain; all systems still function; she still reads and occasionally watches her programs. The Big Evil takes up about 1/3 of her abdomen, but Mom still maintains it causes her no pain. (Just don't touch it or she winces.)
So on we go into the unknown. Onward and upward, and try as we might, not gently.
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