An update...

AKAngel
AKAngel Member Posts: 74 Member
edited March 2014 in Caregivers #1
First off, thank you to everyone who replied to my earlier post under "My mom attacked..."

At her doctor's appointment she was more cognizant than she has been for a few days, which was nice. However, she told her doctor that she didn't like hospice, in general, just because she felt it was invasive (to her privacy) and just wanted to work with her, rather than the hospice people. My dad and I did further discuss why my mom felt that way, her feeling of them being pill-pushers and not willing to have more "agressive" actions done, like CTs and such. It's lucky I guess that my mom even trusts her doctor the way she does, otherwise she might have baulked at what she did say. Her doctor said that the only way to treat my mom at this point was just to keep her comfortable..and if that meant finding out what the best pain management was, through pills, and dealing with her lack of sleep issues, her nausea, her constipation, etc...it could only really be done with "popping a pill" of one sort or another. And that, yes, she would have to do this multiple times a day. My mom was somehow under the impression that there is 'some shot' out there that could be administered once-a-day and that she would be able to stop this constant dosing throughout the day. Now, no one..no one ever gave her that impression before, so my mom must've felt that this option was just somehow being withheld from her. Her doctor clearly explained that no, this wasn't the case. The pain will worsen over time and her weakness and everything that comes with it is normal and par for the course of the rest of her life. My mom seemed to accept that and we addressed the issue of once again finding a sleeping pill that would work for her. You'd think with not being able to sleep more than 2 hrs or so, with all the medicine she has in her system that causes drowiness (pain, nausea, valium) she would pass out by the time a sleeping pill was introduced, but no, my mom manages to defy science and even with a sleeping pill she will wake up and be awake after about 2 hrs, sometimes 3hrs. Her doctor prescribed her Lunesta this time, and last night she slept from 9-12:30, woke up and started trying to do stuff. As a quick aside, I've always had a little extra-sensory perception when it comes to my mom, and that's only gotten stronger as her disease took over. So I wake up from my peaceful sleep around 1am, and not knowing that she took a sleeping pill, we start talking about stuff, movies and things and I start to notice she's a little slurry..not abnormal considering most of her meds give her dry-mouth. But then I remember the Lunesta insert says that people on it will get up and do all sorts of things, not realizing that they are 'asleep' (what sort of drug company thinks this is an okay medicine to prescribe to anyone, I'd like to know! when people can cook, drive, have sex, while in a sombulent state and not realize it! who watches out for these people??) so I get my mom to get back into bed, turn off the tv and go back to sleep. I get back to sleep around 5am, and then am awoke by a feeling. I hear the garage door open and shut, and I'm outta bed to see what's up. Well, now what do ya know, but my mom's behind the wheel of the car, my dad and dog next to her (my dad having provided her with HIS set of keys) and she wants to go get coffee and the paper down the road at Mickey D's. I'm like 'whoa wait a minute! the other side effect of Lunesta is not being fully alert after waking, etc. but my dad's like no, she's fine to drive and my mom says she is too.' Well, she looks alert, but I stayed awake just in case. They just got back now, so I can breathe again. I don't like that she's off of hospice care...now I feel more than ever that I have to constantly watch her and can't really go far to do anything, even get a much needed break. Boo-hoo, right? I still have my mom and that's more important. Thanks for listening.

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    you're making me laugh
    I so much know how you feel that it's making me laugh. What is it with going out first thing in the morning? And thinking anyone can drive anytime? And refusing appropriate medications because it's a change in routine?

    So it's Mickey D's for your folks. Mama rotates between Cracker Barrel and Panera. She can be on the brink of upchuck nausea and get out her car keys to meet somebody for coffee. What's with it with these dying parents who want to go, go go? A joke... hope nobody is offended.

    But seriously, my Mom has been taking Ambien off and on for years and it works for her, but not for me. Both Ambien and Lunesta made me jumpy, so I ended up throwing away the samples I was given. Valium is much better, in my opinion, but it is habit forming so doctors don't like to prescribe it. Because your mother's doctor now knows she is an anti-medicator, it's possible she would prescribe good old valium for sleep. It's fast acting, so you can take it in the middle of the night to get back to sleep and still feel fine the next day. Also great for panic attacks, which may be what's behind your mother's attack on you.
  • AKAngel
    AKAngel Member Posts: 74 Member
    #3
    Barbara53 said:

    you're making me laugh
    I so much know how you feel that it's making me laugh. What is it with going out first thing in the morning? And thinking anyone can drive anytime? And refusing appropriate medications because it's a change in routine?

    So it's Mickey D's for your folks. Mama rotates between Cracker Barrel and Panera. She can be on the brink of upchuck nausea and get out her car keys to meet somebody for coffee. What's with it with these dying parents who want to go, go go? A joke... hope nobody is offended.

    But seriously, my Mom has been taking Ambien off and on for years and it works for her, but not for me. Both Ambien and Lunesta made me jumpy, so I ended up throwing away the samples I was given. Valium is much better, in my opinion, but it is habit forming so doctors don't like to prescribe it. Because your mother's doctor now knows she is an anti-medicator, it's possible she would prescribe good old valium for sleep. It's fast acting, so you can take it in the middle of the night to get back to sleep and still feel fine the next day. Also great for panic attacks, which may be what's behind your mother's attack on you.

    Crazy huh?
    Mom does take valium, but even with that, and pain meds, and anti-nausea(which causes drowiness) she doesn't sleep, even adding a sleeping pill to that! But the Lunesta seemed to work ok, so we'll just see how well she does on it. She will only take valium when she decides she needs it, usually after she's worked herself up enough. But right now she's doing ok...some energy, but that momentum never lasts long. She is much changed from a month ago, so the progression is fairly fast. But if she can get more regular sleep, it should make some difference. I wish lots of things, but like I said on another thread, my wish for those things is as pointless as wishing that every time I wiped my butt, the toilet paper would turn to gold. How's that for a laugh??!!! ;) (this is a repost...the connection died when I wrote the first time...so if you see double, that's why!)
  • augigi
    augigi Member Posts: 89
    #4
    AKAngel said:

    Crazy huh?
    Mom does take valium, but even with that, and pain meds, and anti-nausea(which causes drowiness) she doesn't sleep, even adding a sleeping pill to that! But the Lunesta seemed to work ok, so we'll just see how well she does on it. She will only take valium when she decides she needs it, usually after she's worked herself up enough. But right now she's doing ok...some energy, but that momentum never lasts long. She is much changed from a month ago, so the progression is fairly fast. But if she can get more regular sleep, it should make some difference. I wish lots of things, but like I said on another thread, my wish for those things is as pointless as wishing that every time I wiped my butt, the toilet paper would turn to gold. How's that for a laugh??!!! ;) (this is a repost...the connection died when I wrote the first time...so if you see double, that's why!)

    Not sure how bad her pain
    Not sure how bad her pain is, but palliative care nurses gave us liquid morphine (Roxanol) for my mother, and it's great especially at bedtime as it helps her pain overnight AND gives her a good sleep. Also easier for her to take as its liquid and not more pills (yes my mother says all she does all day is take pills too!).
  • AKAngel
    AKAngel Member Posts: 74 Member
    #5
    augigi said:

    Not sure how bad her pain
    Not sure how bad her pain is, but palliative care nurses gave us liquid morphine (Roxanol) for my mother, and it's great especially at bedtime as it helps her pain overnight AND gives her a good sleep. Also easier for her to take as its liquid and not more pills (yes my mother says all she does all day is take pills too!).

    Pain levels vary
    Sometimes, on a scale of 1-10,ten being worst, she's at a 4. But stress can cause her pain to go to 10 very quickly. My mom is more or less allergic to Morphine in its pure form, but what she's taking now, Dilaudid, is similar but causes far less hallucinatory problems and doesn't upset her like Morphine does. In fact, I'm glad to report, she's taken less pain meds the past 3 days than she has for some time. So I believe that her sleeping pill Lunesta is helping her brain by allowing it to properly rest, and therefore recover, and allow pain management to occur on a much lower level. And she has been able to eat a little bit more the past couple of days than she has before. Every day is a new adventure...or should I say another episode of "Days of Our Lives"?
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    AKAngel said:

    Pain levels vary
    Sometimes, on a scale of 1-10,ten being worst, she's at a 4. But stress can cause her pain to go to 10 very quickly. My mom is more or less allergic to Morphine in its pure form, but what she's taking now, Dilaudid, is similar but causes far less hallucinatory problems and doesn't upset her like Morphine does. In fact, I'm glad to report, she's taken less pain meds the past 3 days than she has for some time. So I believe that her sleeping pill Lunesta is helping her brain by allowing it to properly rest, and therefore recover, and allow pain management to occur on a much lower level. And she has been able to eat a little bit more the past couple of days than she has before. Every day is a new adventure...or should I say another episode of "Days of Our Lives"?

    Thanks for the Smile! :)
    Hey Akangel,
    You have had me laughing and smiling for the last 10 mins! Thanks. I loved the story of mom and dad in the car....after "dad" gives mom his set of keys...going off the mickey d's like nothings wrong! You have to laugh! They made it back safe, maybe it is ok for them to go get the paper every now and then. And the comment about the gold toilet paper....never heard that one before, but funny! On a more serious note, sounds like the Lunesta is doing the trick for mom. I agree, if she gets a more restful sleep, she will do better. There are pain meds in liquid form. My dad was taking Roxicet. It worked great at bed time. He nicknamed it "Roxy". It worked really well for the pain and for sleep. Yes everyday is a new adventure, and you have to take some time to smell the roses. Take care of yourself while you are taking care of mom and dad. Keep in touch.
    Tina
  • AKAngel
    AKAngel Member Posts: 74 Member
    #7
    Tina Blondek said:

    Thanks for the Smile! :)
    Hey Akangel,
    You have had me laughing and smiling for the last 10 mins! Thanks. I loved the story of mom and dad in the car....after "dad" gives mom his set of keys...going off the mickey d's like nothings wrong! You have to laugh! They made it back safe, maybe it is ok for them to go get the paper every now and then. And the comment about the gold toilet paper....never heard that one before, but funny! On a more serious note, sounds like the Lunesta is doing the trick for mom. I agree, if she gets a more restful sleep, she will do better. There are pain meds in liquid form. My dad was taking Roxicet. It worked great at bed time. He nicknamed it "Roxy". It worked really well for the pain and for sleep. Yes everyday is a new adventure, and you have to take some time to smell the roses. Take care of yourself while you are taking care of mom and dad. Keep in touch.
    Tina

    Hey, why not laugh?
    We meet again! I like letting my literary skill occasionally outta the bag, so why not have it make a laugh vs. a cry? I tend to blow off a lot more steam laughing, even when I don't really feel like laughing, than I do crying. I usually hold in the crying to cry real hard at once, or sometimes let a few tears drop, especially when I'm here, reading posts from other people. Like I've said, my mom hates it when I cry, so I have to be careful when I do it, so she won't know that I am. Sometimes I cry in the parking lot when I'm out running errands for her...it seems to hit me hard then, when the realization comes that there's a reason why I'm the one doing the errands, and not her. I do it unabashedly there, but still wonder what all the people around me are thinking when they see this poor woman crying her eyes out in the car....Or that darn radio plays a song that affects me strongly! Music is truly a window to the soul. Strength and love to you, Tina.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    AKAngel said:

    Hey, why not laugh?
    We meet again! I like letting my literary skill occasionally outta the bag, so why not have it make a laugh vs. a cry? I tend to blow off a lot more steam laughing, even when I don't really feel like laughing, than I do crying. I usually hold in the crying to cry real hard at once, or sometimes let a few tears drop, especially when I'm here, reading posts from other people. Like I've said, my mom hates it when I cry, so I have to be careful when I do it, so she won't know that I am. Sometimes I cry in the parking lot when I'm out running errands for her...it seems to hit me hard then, when the realization comes that there's a reason why I'm the one doing the errands, and not her. I do it unabashedly there, but still wonder what all the people around me are thinking when they see this poor woman crying her eyes out in the car....Or that darn radio plays a song that affects me strongly! Music is truly a window to the soul. Strength and love to you, Tina.

    Hi AKAngel,Cool picture you
    Hi AKAngel,
    Cool picture you posted. I still can not figure out how to post a profile pic on here! You go right ahead and cry in your car. Cry wherever and whenever you can. You need to have that release. So...how is mom doing so far this week? Keep in touch. Love hearing from you.
    Tina
  • AKAngel
    AKAngel Member Posts: 74 Member
    #9
    Tina Blondek said:

    Hi AKAngel,Cool picture you
    Hi AKAngel,
    Cool picture you posted. I still can not figure out how to post a profile pic on here! You go right ahead and cry in your car. Cry wherever and whenever you can. You need to have that release. So...how is mom doing so far this week? Keep in touch. Love hearing from you.
    Tina

    To Tina
    Here's the steps for uploading a pic: go to your CSN account, click 'edit', go to the 'picture' tab, it will show upload picture, click the 'browse' and any picture you have on your computer under your My Pictures folder you can select, if it's too big to choose under the CSN guidelines, I'm sure it'll tell you.
    Now, as far as my mom....it's some days good, some days real bad. My parents had changed their phone numbers because the relatives on my mom's side (a realll long story for background history) won't stop pestering us about knowing every little detail, or taking those details and blowing them out of proportion. But then two days later, and my mom's calling and talking with them again. Whatever...I can't control it, I give up on that. My sister, who lives in Portland, had came down last month, and was talking to my mom on Monday about driving down here vs flying and got upset and started crying. My mom shouted at her for 'carrying on' (see, I'm not the only one she berates for crying) and hung up on her. So, after I fix a lovely dinner, my mom's telling me that I should fly up to her, drive down with her, drive back up with her, and fly back down here, just so my sis wouldn't be alone. So, like a dutiful daughter who knows my mom's gonna worry, I check flights and prices and let her know that yes, it's within my budget and that I'd make the call to my sis and see about making arrangements. Well, I leave a message Monday, then send her an email letting her know that Mom yells at me too for crying and that I understand, and then call her last night, trying to secure this because we all know how fast flight prices can go up. I also in my email let her know that she can come to this board and at least read other people's experiences and she can even read my posts too. She sends me a email back this morning telling me she doesn't need to be coddled and 'everyone should just mind their own business and (she'll) fly, drive or walk down if (she) wants to'. Nice huh? Now, my sister and I haven't been close, I'm not close to any of my siblings in fact, but when she came down here last month, it wasn't bad and I thought we had started to reconnect a little. How wrong was I? Well, I tried for my mom's sake, and that's all I can do. But it really upset my mom (because I had to tell her that my sis refused my assistance otherwise she wouldn't leave me alone about it) and my mom just doesn't understand why everyone is trying to make this last of her life so difficult. All they are doing is stressing her out and causing her pain. But they don't see it that way and I guess they won't until it's too late, or maybe never. Now, my mom's talking about getting rid of her dog, because she says that after she dies, I won't take care of him. Somehow in her mind, my dad's gonna die right after her and I'll be left alone with the dog and won't take care of him and/or I'll be in an apartment and he'll bark and I'll get kicked out so why doesn't she just get rid of him now? I try to tell her, can't we just deal with one thing at a time, you're not even dead yet, and she refuses to listen. ARRGGGHHH! One extreme to another. I keep trying to do things to please her, and it's never enough. She always finds something to complain about, or find fault with. I know it's the fear and anger about dying, but psychology and rational thinking just don't play a part in the mom I now have....come to think of it, she's never been much of a rational thinker, and has always hated how I can look at things logically, yet she's the one that gets mad at me for having emotions--she's driven by hers and doesn't even realize it. Whew. By the way, how are you doing?
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #10
    AKAngel said:

    To Tina
    Here's the steps for uploading a pic: go to your CSN account, click 'edit', go to the 'picture' tab, it will show upload picture, click the 'browse' and any picture you have on your computer under your My Pictures folder you can select, if it's too big to choose under the CSN guidelines, I'm sure it'll tell you.
    Now, as far as my mom....it's some days good, some days real bad. My parents had changed their phone numbers because the relatives on my mom's side (a realll long story for background history) won't stop pestering us about knowing every little detail, or taking those details and blowing them out of proportion. But then two days later, and my mom's calling and talking with them again. Whatever...I can't control it, I give up on that. My sister, who lives in Portland, had came down last month, and was talking to my mom on Monday about driving down here vs flying and got upset and started crying. My mom shouted at her for 'carrying on' (see, I'm not the only one she berates for crying) and hung up on her. So, after I fix a lovely dinner, my mom's telling me that I should fly up to her, drive down with her, drive back up with her, and fly back down here, just so my sis wouldn't be alone. So, like a dutiful daughter who knows my mom's gonna worry, I check flights and prices and let her know that yes, it's within my budget and that I'd make the call to my sis and see about making arrangements. Well, I leave a message Monday, then send her an email letting her know that Mom yells at me too for crying and that I understand, and then call her last night, trying to secure this because we all know how fast flight prices can go up. I also in my email let her know that she can come to this board and at least read other people's experiences and she can even read my posts too. She sends me a email back this morning telling me she doesn't need to be coddled and 'everyone should just mind their own business and (she'll) fly, drive or walk down if (she) wants to'. Nice huh? Now, my sister and I haven't been close, I'm not close to any of my siblings in fact, but when she came down here last month, it wasn't bad and I thought we had started to reconnect a little. How wrong was I? Well, I tried for my mom's sake, and that's all I can do. But it really upset my mom (because I had to tell her that my sis refused my assistance otherwise she wouldn't leave me alone about it) and my mom just doesn't understand why everyone is trying to make this last of her life so difficult. All they are doing is stressing her out and causing her pain. But they don't see it that way and I guess they won't until it's too late, or maybe never. Now, my mom's talking about getting rid of her dog, because she says that after she dies, I won't take care of him. Somehow in her mind, my dad's gonna die right after her and I'll be left alone with the dog and won't take care of him and/or I'll be in an apartment and he'll bark and I'll get kicked out so why doesn't she just get rid of him now? I try to tell her, can't we just deal with one thing at a time, you're not even dead yet, and she refuses to listen. ARRGGGHHH! One extreme to another. I keep trying to do things to please her, and it's never enough. She always finds something to complain about, or find fault with. I know it's the fear and anger about dying, but psychology and rational thinking just don't play a part in the mom I now have....come to think of it, she's never been much of a rational thinker, and has always hated how I can look at things logically, yet she's the one that gets mad at me for having emotions--she's driven by hers and doesn't even realize it. Whew. By the way, how are you doing?

    Angel,
    Wow! Hope you feel
    Angel,
    Wow! Hope you feel better now that you got allll of that off your chest! Can I upload pics from my facebook account to my csn account? How would I send them to my csn account? On to mom.....poor lady. I can't blame her for how she is feeling and dealing with it. Sometimes we as caregivers just have to bite our tongues and do whatever they want us to. Agree with her as much as possible. Of course you will be able to care for your dad once she goes. She just does not like the fact that she is losing control. Just reassure her that all will be taken care of when that time comes. Hang in there my dear friend. I am happy this world of caregivers has allowed you and I to cross paths. Keep in touch.
    Tina
  • AKAngel
    AKAngel Member Posts: 74 Member
    #11
    Tina Blondek said:

    Angel,
    Wow! Hope you feel
    Angel,
    Wow! Hope you feel better now that you got allll of that off your chest! Can I upload pics from my facebook account to my csn account? How would I send them to my csn account? On to mom.....poor lady. I can't blame her for how she is feeling and dealing with it. Sometimes we as caregivers just have to bite our tongues and do whatever they want us to. Agree with her as much as possible. Of course you will be able to care for your dad once she goes. She just does not like the fact that she is losing control. Just reassure her that all will be taken care of when that time comes. Hang in there my dear friend. I am happy this world of caregivers has allowed you and I to cross paths. Keep in touch.
    Tina

    I don't know
    Tina-
    Don't know about the facebook...maybe download to your 'puter then to CSN.
    As far as mom....that's a whole new thread I'm gonna have to start. Just not today. I've absent from the boards a few days for a reason.

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