Today is Wednesday, March 28th and tomorrow marks the two month date from the time mom went into the hospital with an attact of cellulitis. The doctors gave her two weeks to two months so she's beat them so far!
For the last few days, Mom's been having quite a bit of anxiety. The hospice nurse says that's normal. A bit of it's her pain meds but the bulk of it is a result of the cancer spreading to her brain.
She's worried about things she hears on the news. Today she told me she was worried because she didn't know what was going on. She said she had this thin little thread that she was trying to hold on to.
It's hard for her to talk on the phone because she doesn't always understand what people are saying and she's afraid she's forgotten something important. She asks where people are all the time and who's in charge. It's different from before because she feels driven to figure things out; to get to the bottom of what's going on. Sometimes she thinks we're part of a conspiracy to get her to do something.
She asked me today what we were doing and I said we could watch some TV, go for a ride in the car, sit outside and soak up some sun, etc. I asked her if that was OK and she kept saying that, no, that was what I believed to be to be true but that it wasn't necessarily reality.
It's very frustrating and takes a lot of creative communication to keep her from sort of freaking out. We also give her some anti-anxiety meds. It takes a toll on those of us taking care of her because she's agitated so much of the time. She's very unsteady on her feet but her anxiety gets her up walking around the house looking for things or people, straightening and cleaning for non-existent guests, trying to find her keys to go somewhere important, trying to find money somewhere for someone, etc.
I think we may try to change what we have on the TV so that we don't watch the news and don't discuss politics (easier said than done in the Butler house, I'm afraid!) Also, we'll have to figure out what to do with the phone. She got into the strangest conversations with a telemarketer-type person the other day because I didn't happen to catch the phone before she did. Maybe it serves them right though! :)
Mom's excited for my sister Nicole to come visit next week. It'll be a good change for mom and Nicole's kids are super excited to see Mom and participate in the Butler family Easter egg hunt! I'm glad Mom will be around to see it this year. It also gives Tareq, Wendy and I a bit of a rest. The ward too. They've been so helpful, I can't even tell you.
Here's to a good week!
Danielle
Wednesday, March 28, 2012
Sunday, March 18, 2012
Rollercoaster
After Mom's bad days the first part of this week, she's had a few good days lately - kind of up and down like a rollercoaster. She's been up and about with a trip to Target with me and a trip out with her sister, Rallet. Our time at Target was interesting since I had my pouty 4-year-old with me...and my mom kept rolling herself away in her wheelchair. I don't usually bribe my kids for good behavior but the $$ I spent on a toy for Jack-Jack that day was worth every penny!
The last few days she's been feeling better but she's also been pretty fiesty. She says she feels like we are trying to railroad her into doing things she doesn't want to do. It's hard to know when to stop helping - like for instance when I picked out an outfit for her and she said she wanted to save it for a nice occasion (?? It wasn't fancy!) I told her she could wear it anytime she wanted and she told me to stop pressuring her!
She has so many up and down days that it's hard to pull back from helping on the up days. I'll tell her that I can do the dishes and she feels like I'm telling her what to do. Yet on other days, she doesn't feel well enough to even get out of bed for very long. I feel like a jerk for ever letting her do the dishes, even when she insists! Tareq says to not take any of it personally and I don't--I'm just trying to do the right thing for her. It's difficult.
So anyway, I walk in today to sit with Mom while my dad goes to church and, with a big smile, Mom says, "You are going to love meeting your Grandpa Christiansen some day! He'll tell you he is so proud of you and give you a great big bear hug!" And I get a little misty-eyed because she's talking about a grandfather I've never met...and because she's thinking about seeing him again.
And then she tells me all about her outing with her sister where they stopped a missle from exploding at the last minute. Either that was a very exciting afternoon with Aunt Rallet or it was the ending to the movie she watched last night. Either way, it's a rollercoaster everyday!
The last few days she's been feeling better but she's also been pretty fiesty. She says she feels like we are trying to railroad her into doing things she doesn't want to do. It's hard to know when to stop helping - like for instance when I picked out an outfit for her and she said she wanted to save it for a nice occasion (?? It wasn't fancy!) I told her she could wear it anytime she wanted and she told me to stop pressuring her!
She has so many up and down days that it's hard to pull back from helping on the up days. I'll tell her that I can do the dishes and she feels like I'm telling her what to do. Yet on other days, she doesn't feel well enough to even get out of bed for very long. I feel like a jerk for ever letting her do the dishes, even when she insists! Tareq says to not take any of it personally and I don't--I'm just trying to do the right thing for her. It's difficult.
So anyway, I walk in today to sit with Mom while my dad goes to church and, with a big smile, Mom says, "You are going to love meeting your Grandpa Christiansen some day! He'll tell you he is so proud of you and give you a great big bear hug!" And I get a little misty-eyed because she's talking about a grandfather I've never met...and because she's thinking about seeing him again.
And then she tells me all about her outing with her sister where they stopped a missle from exploding at the last minute. Either that was a very exciting afternoon with Aunt Rallet or it was the ending to the movie she watched last night. Either way, it's a rollercoaster everyday!
Wednesday, March 14, 2012
Stupid cancer
My poor mommy didn't eat anything today. I did get her to sip some Gatorade. She's pretty weak and has been sleeping a lot. Somehow she managed to throw up tonight anyway. She's still up and walking around from time to time.
Hospice delivered a wheelchair today and Dad took Mom out for a spin. The weather is still really nice and she enjoyed it.
Unfortunately, Mom had more pain in her arm so she had to have extra meds today. Her lymph nodes are completely messed up in that arm and that's what usually causes her the most trouble.
She's also getting really disjointed in her thoughts. It's like she's gone from paragraphs to sentences to phrases to fragments in her thinking. Thoughts aren't connected all the time with what's going on; it's like joining a conversation mid-way through and then losing it. My poor brothers and sisters call often to talk with mom and the conversations are often confusing and frustrating.
The hospice nurse came yesterday and said the naps would get longer and longer as Mom lost her energy. We're watching for that. How can she have any energy if she's not eating?
Stupid cancer.
Hospice delivered a wheelchair today and Dad took Mom out for a spin. The weather is still really nice and she enjoyed it.
Unfortunately, Mom had more pain in her arm so she had to have extra meds today. Her lymph nodes are completely messed up in that arm and that's what usually causes her the most trouble.
She's also getting really disjointed in her thoughts. It's like she's gone from paragraphs to sentences to phrases to fragments in her thinking. Thoughts aren't connected all the time with what's going on; it's like joining a conversation mid-way through and then losing it. My poor brothers and sisters call often to talk with mom and the conversations are often confusing and frustrating.
The hospice nurse came yesterday and said the naps would get longer and longer as Mom lost her energy. We're watching for that. How can she have any energy if she's not eating?
Stupid cancer.
Monday, March 12, 2012
Sunshine!
Today was such a nice day out! We spent some time on the back porch soaking up the sun... Mom even rolled up her pant legs to try to get a tan. :)
She had a couple of long naps today. That together with the sunshine helped mom to be pretty chipper all day.
My sister Rallet came for a short visit this weekend with her girls. Mom has been talking about her coming for quite a while. I think the visit was a little difficult with Mom's memory going and all. She's not the same person and it's a bit hard for friends and family to see it. Also, Tatyana and Vasha came to visit. I'm sad I wasn't there to see them!
Mom still isn't eating much. Wendy and I noticed that when she does accept something, she usually sneaks it to her dog instead of eating it. I guess that's what we get for pushing! She says she has no appetite and nothing tastes good. She hates the protein drinks and the Gatorade. I guess the upside is that it eliminates the throwing up which really upsets her.
Mom talked today about this long dream she's been having about being sick. She asked me if it seemed like it had been a long time and I said yes. She said she couldn't wait till she woke up. I guess the hospice nurse came over and Mom was mad that she talked about dying. Mom just wanted to feel better. We all wish she could and we're trying to keep her as comfortable as possible.
We still have the most amazing people helping out...couldn't do this without you. Thanks!!
She had a couple of long naps today. That together with the sunshine helped mom to be pretty chipper all day.
My sister Rallet came for a short visit this weekend with her girls. Mom has been talking about her coming for quite a while. I think the visit was a little difficult with Mom's memory going and all. She's not the same person and it's a bit hard for friends and family to see it. Also, Tatyana and Vasha came to visit. I'm sad I wasn't there to see them!
Mom still isn't eating much. Wendy and I noticed that when she does accept something, she usually sneaks it to her dog instead of eating it. I guess that's what we get for pushing! She says she has no appetite and nothing tastes good. She hates the protein drinks and the Gatorade. I guess the upside is that it eliminates the throwing up which really upsets her.
Mom talked today about this long dream she's been having about being sick. She asked me if it seemed like it had been a long time and I said yes. She said she couldn't wait till she woke up. I guess the hospice nurse came over and Mom was mad that she talked about dying. Mom just wanted to feel better. We all wish she could and we're trying to keep her as comfortable as possible.
We still have the most amazing people helping out...couldn't do this without you. Thanks!!
Thursday, March 8, 2012
Fighting!
We Butlers are notorious for fighting. (Just verbally, I hope!!) I blame it on our Irish DNA and the need to fight for our rights! Anyway, that's what I think of when my mom gets really confrontational about taking medicine. I coaxed, cajoled, reasoned, and finally insisted yesterday that she take her nighttime meds. I don't do it very often - usually that job falls to my brother Tareq. He has talked about it but last night was the first time I experienced it first hand.
She insists that she's not in any pain and doesn't need meds. Unfortunately it's hard to get her to understand that if we lowered the regular pain meds, then she would be in so much pain that we'd have to give her morphine which knocks her out. I think Tareq gets an extra gold star for being so kind and sweet yet firm with my mom. He is our liason with hospice and knows exactly what needs to be done. He never loses his temper or says anything harsh.
Love you, T!
She couldn't keep anything down yesterday and is looking really thin. She's a fighter though; for good or bad, she's a fighter!
She insists that she's not in any pain and doesn't need meds. Unfortunately it's hard to get her to understand that if we lowered the regular pain meds, then she would be in so much pain that we'd have to give her morphine which knocks her out. I think Tareq gets an extra gold star for being so kind and sweet yet firm with my mom. He is our liason with hospice and knows exactly what needs to be done. He never loses his temper or says anything harsh.
Love you, T!
She couldn't keep anything down yesterday and is looking really thin. She's a fighter though; for good or bad, she's a fighter!
Wednesday, March 7, 2012
In the Dark
Things have changed a bit over the past few days. While my mom has been up and around, carrying on conversations, etc. for the past several weeks - just this weekend, she has gotten a lot less steady and less able to carry on conversations. I thought about telling you all to give her a call now while she's still able to talk to you, but I'm not so sure she'd be up to it.
On Saturday, we went for a drive up Provo canyon to see the beautiful snow. Just as we got up to Sundance, the sun came out and lit up the slopes and all the snowboarders. It was beautiful.
I popped in a CD of piano music I happened to have in my car and the first track on there was Claire de Lune by Debussy. My mom listened for a while with her eyes shut and then said, "My father used to play this." Same thing with several other tracks on the CD. We just listened for a while and then she told me some stories about her dad, with whom she was not close. She said, "I guess Daddy doesn't want to be forgotten."
Sunday morning Mom was thinking of going to church but was too tired by the time she got showered and dressed. That's a bit different from the last three weeks where she'd get all ready and then be able to go shopping, for a ride in the car, etc. She seems to be much more tired and sleeping lots of the time. I wish we knew what was caused by medicine and what was caused by the cancer. We're in the dark so much here.
Why did she have a few days where her appetite came back and she could keep everything down? Why did she start throwing up again today? Why does she have lots of pain one day and nothing the next? It's a puzzle that I don't think we'll ever understand.
The last few nights, she's been jumbling things up while talking to me. I know other people have experienced it with her too. I think she sort of knows she's confused because often, she'll just nod and say, "MmmHmm." She has even been saying some things in German.
She seems a lot more frail in just the last 2-3 days. I am quite often talking to her rather than talking with her. It makes me feel like we're losing her more than just when she sleeps a lot. Does that make sense? It's hard to ask her a question and get a blank look or a random answer. I think both our family and my mom are in the dark right now - not understanding, not comprehending what's going on, just knowing it's cancer.
She said to me randomly Monday night, "I won. I won, didn't I?" All I could say was yes.
On Saturday, we went for a drive up Provo canyon to see the beautiful snow. Just as we got up to Sundance, the sun came out and lit up the slopes and all the snowboarders. It was beautiful.
I popped in a CD of piano music I happened to have in my car and the first track on there was Claire de Lune by Debussy. My mom listened for a while with her eyes shut and then said, "My father used to play this." Same thing with several other tracks on the CD. We just listened for a while and then she told me some stories about her dad, with whom she was not close. She said, "I guess Daddy doesn't want to be forgotten."
Sunday morning Mom was thinking of going to church but was too tired by the time she got showered and dressed. That's a bit different from the last three weeks where she'd get all ready and then be able to go shopping, for a ride in the car, etc. She seems to be much more tired and sleeping lots of the time. I wish we knew what was caused by medicine and what was caused by the cancer. We're in the dark so much here.
Why did she have a few days where her appetite came back and she could keep everything down? Why did she start throwing up again today? Why does she have lots of pain one day and nothing the next? It's a puzzle that I don't think we'll ever understand.
The last few nights, she's been jumbling things up while talking to me. I know other people have experienced it with her too. I think she sort of knows she's confused because often, she'll just nod and say, "MmmHmm." She has even been saying some things in German.
She seems a lot more frail in just the last 2-3 days. I am quite often talking to her rather than talking with her. It makes me feel like we're losing her more than just when she sleeps a lot. Does that make sense? It's hard to ask her a question and get a blank look or a random answer. I think both our family and my mom are in the dark right now - not understanding, not comprehending what's going on, just knowing it's cancer.
She said to me randomly Monday night, "I won. I won, didn't I?" All I could say was yes.
Saturday, March 3, 2012
Love and support
I'm king of amazed at all the people who come over to help my mom. How do people do this with no support system? It would be sad, I think. The hospice nurse is very kind but she doesn't know my mom. She can't talk with her, ease her concerns and make her laugh like we do.
Mom has her kids and Dad to help with the day to day stuff, ward members to bring in meals and sit with her, sisters who like to take her shopping or out to lunch (when she's feeling well,) and friends who send cards and come visit. When you understand where you're going, I think the journey must be easier with a bunch of people walking along with you.
I was thinking about that this morning when I went over to Mom's. My niece, Lauren was there helping my mom with her shower and then she cleaned the entire kitchen! We also got an update on the new boyfriend. :)
Mom seems pretty shaky today. She took a fall in the bathroom this morning while reaching for something on a low shelf. Dad heard her fall and ran in to find her flat on the floor. Mom says she really bruised her ego - at least nothing hurts right now. We're keeping a pretty close eye on her and, sadly, a shopping trip with her sister, Rallet had to be postponed.
She's still not eating much. We have to keep remembering what the hospice nurse says about mom's appetite and how it's OK if she doesn't want to eat. Old habits die hard, right?
Speaking of old habits, we've all been laughing a bit at my mom's insistence on watching Downtown Abbey with many of the visitors who come over. She doesn't remember that she's already watched it and she loves it every time!
I also got her to admit that I'm her favorite....but she doesn't remember that either. Dang! ;)
Mom has her kids and Dad to help with the day to day stuff, ward members to bring in meals and sit with her, sisters who like to take her shopping or out to lunch (when she's feeling well,) and friends who send cards and come visit. When you understand where you're going, I think the journey must be easier with a bunch of people walking along with you.
I was thinking about that this morning when I went over to Mom's. My niece, Lauren was there helping my mom with her shower and then she cleaned the entire kitchen! We also got an update on the new boyfriend. :)
Mom seems pretty shaky today. She took a fall in the bathroom this morning while reaching for something on a low shelf. Dad heard her fall and ran in to find her flat on the floor. Mom says she really bruised her ego - at least nothing hurts right now. We're keeping a pretty close eye on her and, sadly, a shopping trip with her sister, Rallet had to be postponed.
She's still not eating much. We have to keep remembering what the hospice nurse says about mom's appetite and how it's OK if she doesn't want to eat. Old habits die hard, right?
Speaking of old habits, we've all been laughing a bit at my mom's insistence on watching Downtown Abbey with many of the visitors who come over. She doesn't remember that she's already watched it and she loves it every time!
I also got her to admit that I'm her favorite....but she doesn't remember that either. Dang! ;)
Thursday, March 1, 2012
One Handsome Guy
Every night when I get my mom ready for bed, she tells me to look over at a picture on her bookshelf of my dad as a young man. She says, "Have you ever seen such a good-looking man?"
Mom seems to have hit some sort of vague plateau. Her chest isn't getting any worse and she still can't keep much food down. The hospice nurse says her heart and lungs sound good. I do think her memory is getting worse though. That's ok in a way though because every night I get to hear about how my dad was so handsome that he made my mom's "socks roll up and down."
Mom's hoping to have some grandkids come for spring break in a few weeks. She wants to go see the tulips at Thanksgiving Point and maybe have tea at the Grand American. I'm looking forward to it.
Mom seems to have hit some sort of vague plateau. Her chest isn't getting any worse and she still can't keep much food down. The hospice nurse says her heart and lungs sound good. I do think her memory is getting worse though. That's ok in a way though because every night I get to hear about how my dad was so handsome that he made my mom's "socks roll up and down."
Mom's hoping to have some grandkids come for spring break in a few weeks. She wants to go see the tulips at Thanksgiving Point and maybe have tea at the Grand American. I'm looking forward to it.
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