I was out with Riley and this is what Ashley recorded. A snap shot of life here with Gmom, who recovered physically great from colon cancer surgery, but mentally...well take a peek.
4:15 Mary I want to go back to the hospital please right now
4:16 I want to go back
4:16 Mary I want to go back to the hospital please
4:16 Mary whats wrongs with me please answer me I don't want Tim to answer
*bangs cup*
4:17 Mary I want some more water
4:18 MAAARRRYYY
4:18 You're going to make me go back to the hospital aren't you? I don't want to go!
4:18 MAAAARRRYYYY
4:20 Cilantro hormonal, hormonal cilantro, hormonal, hormonal, cilantro cilantro
4:20 Mary what's wrong with me?!
4:21 Oh my god
4:22 Mary what's wrong with me?
This went on, but Ashley stopped recording.We have answered these questions for a month now. Tiring for her and for us...
Monday, April 30, 2012
Tuesday, January 31, 2012
Parenting my Mama...on strange behavior and sleep deprivation
It's going on 4 weeks now and Gmom is still "lunar". She is just not with us mentally like she use to be. She is so needy and clingy and confused and with that comes all kinds of strange behaviors. For those who are parents, remember the days of little kids needing another glass of water, another story, another reassurance that this is no boogie man under the bed...Now take an 80 year old mama, with those same needs, same fears, and same mischievousness...and you can kind of imagine my night time routine. I tuck her in, she gets up to pee. She wants to eat, I say it's bed time, she gets grumpy, shakes her head No, I use the "this is what you are going to do" voice, she does it...Back in bed. 40 minutes later..."MARRRRYYYY"...And she has no reason to call, most of the time she forgets why she called me altogether...and on it goes. I was with her more than 12 times last night but I stopped keeping track. I slept on the couch near her room so I could catch her quickly before she woke the whole house. I tucked her in, I said "I love you" kissed her forehead and shut her door. 20-45 minutes later she was up to pee or screaming my name again. She sleeps with her TV on and I have this feeling it over stimulates her sometimes, so to make a concrete action to her screaming, I let her know, "wake me again and the TV is off for the night". My rationale is she is a creature of habit, and once something happens regularly, she expects it. If we can get her to sleep at night in a quiet room and be awake in the day in a TV loud room, that would be great. If the TV being off tells her, it's night you need to sleep and not yell "MAARRRRYYYYY" every 15 minutes...wonderful. Well the TV being off last night caused her so much stress, she forgot about the fear of the hospital.
Some of the things I find helpful, as with a young child, is to say it how it is going to be...You are going to do this, this is going to happen. I am not very good at this style of talking, though. Me and my kids have conversations, we each have input and decisions are consensual...Mom isn't listening, isn't hearing, isn't aware that 5 other people are being kept from sleep by her antics. There is no consensual with deal with her...And she is starting to not like me, saying mean things, which like the kid who is angry, I let wash over me like water off a ducks back. At least I have had a lot of practice...thank you Riley.
On the sunnier side of our new new, my kids have been especially loving to me, telling me how much they love me more than usually, stopping to give me hugs as I tend yet again to the screamie meamie. They are gentle and caring, which bouys me up. Tim is fed up with Gmom. He has had enough. He is worried for my health, my sanity...He would like her living elsewhere if she can not find a way to stop yelling all the time. Tough decisions lay ahead for us. For the last 2.5 years we have coped and helped and loved and shared our home with gmom as a family. I feel like if she and I were the only ones, we could manage. But I am a wife and mother too...and my family needs me...whole, loving me...not worn out tired frustrated daughter to a lunar bell.
And just when you think she has left the building completely, she's back...Since I started this post, I left to pick up Riley, take him to his orthodontist appointment and am now home again. I was gone for about an hour. Well, Gmom seems more relaxed today, more here in the now, less panicky. And she actually sat and listened to me express what happened last night, since she doesn't remember past 20 seconds. Big things make impressions with her, though, so turning off her TV last night after the 6th time she called for me at 11pm and the subsequent multiply panic freaky callouts that happened following this did leave some kind of memory with her. I am hoping having a concrete consequence can help shape her a new new routine, one that does not include massive amounts of night waking, screaming, and other oddness. We shall see...
Some of the things I find helpful, as with a young child, is to say it how it is going to be...You are going to do this, this is going to happen. I am not very good at this style of talking, though. Me and my kids have conversations, we each have input and decisions are consensual...Mom isn't listening, isn't hearing, isn't aware that 5 other people are being kept from sleep by her antics. There is no consensual with deal with her...And she is starting to not like me, saying mean things, which like the kid who is angry, I let wash over me like water off a ducks back. At least I have had a lot of practice...thank you Riley.
On the sunnier side of our new new, my kids have been especially loving to me, telling me how much they love me more than usually, stopping to give me hugs as I tend yet again to the screamie meamie. They are gentle and caring, which bouys me up. Tim is fed up with Gmom. He has had enough. He is worried for my health, my sanity...He would like her living elsewhere if she can not find a way to stop yelling all the time. Tough decisions lay ahead for us. For the last 2.5 years we have coped and helped and loved and shared our home with gmom as a family. I feel like if she and I were the only ones, we could manage. But I am a wife and mother too...and my family needs me...whole, loving me...not worn out tired frustrated daughter to a lunar bell.
And just when you think she has left the building completely, she's back...Since I started this post, I left to pick up Riley, take him to his orthodontist appointment and am now home again. I was gone for about an hour. Well, Gmom seems more relaxed today, more here in the now, less panicky. And she actually sat and listened to me express what happened last night, since she doesn't remember past 20 seconds. Big things make impressions with her, though, so turning off her TV last night after the 6th time she called for me at 11pm and the subsequent multiply panic freaky callouts that happened following this did leave some kind of memory with her. I am hoping having a concrete consequence can help shape her a new new routine, one that does not include massive amounts of night waking, screaming, and other oddness. We shall see...
Friday, January 20, 2012
Trying to make it work...for everyone
No sleep...the end...for anyone...ok my teensTessa and Riley have not been bothered by Gmom's big midnight calls. Tim and Ashley (in college) on the other hand are weary from the many calls for help. I tend to sleep through about half the calling and go and harass her the other half and help as needed. Her lack of sleeping and panicky nights have been going on for more than 2 weeks and we are done, finished, talking care homes and apartment living. At least she stopped hacking and retching, that made the whole house vibrate as she somehow amplifyed the noise with the bowl bedside.That was LOUD.
I called the advice nurse Tuesday. Wow that was the worse conversation I have ever had. She must have had a triple latte because she was buzz talking and interrupting everything I said. And then she would say, "Oh I don't need all the details" What, I haven't given you any because you have talked over me for the entire call. Plus my mom needed help while I was on the phone. I hung up mad and it was early and I was tired, like all nighter from college during finals tired. Not good. I then emailed her doc and he responded with "it sounds like a need for psychiatry". I called psychiatry Tuesday. They took a message. I called again Wednesday, they said "we will get you on the calender" in a message. I called again Thursday and they told me, "oh, she's on a wait list. By the way, the wait list is out 50 days at least." FIFTY DAYS...I told them "NOT OK give me options or we all will be in psychiatry." They gave me another number, I left another message...We got no sleep again last night.
Today I emailed the doctor, told him the details and then I realized I could email her old psychiatrist, the one who wrote a prescription for sleep meds 3 years ago...AND she said "yes I can help you, yes I will send that right to the your pharmacy and if you have questions please let me know"...We have always called this doctor Dr. Sunshine because she was the first who saw mom when she was getting loopy. She put her on vitamin D and told her to get outside in the sun for at least 30 minutes everyday...Doctor Sunshine you sent your rays of sunlight and sleeping potion our way on this blustery day and I thank you so much. On top of having meds tonight we woke Gmom up every 45 minutes from 7am until 9pm tonight. I set a little timer and hopped on her bed and chatted and she laughed at my wake up Gmom antics. I got her up to the table more than usually also and Tessa and I bought her an Elmo coloring book. She colored Big Bird so yellow.
I just gave her that little white pill...oh please do your magic and help her relax and sleep and forget that she yells out "MAAAARRRRYYYY" every 45 minutes from 2 am until 7 am.
That's an interesting thing about dementia habits. She gets a habit and it seem all encompassing and then it fade away and another habit takes hold. Sleep over retching, yelling, and potty breaks...I am visualizing it oh so clearly....Sleep... I see her now so comfy in her blankets, clean from her shower and in fresh linens. Sleeping...Sleeping...ah..Good Night.
I called the advice nurse Tuesday. Wow that was the worse conversation I have ever had. She must have had a triple latte because she was buzz talking and interrupting everything I said. And then she would say, "Oh I don't need all the details" What, I haven't given you any because you have talked over me for the entire call. Plus my mom needed help while I was on the phone. I hung up mad and it was early and I was tired, like all nighter from college during finals tired. Not good. I then emailed her doc and he responded with "it sounds like a need for psychiatry". I called psychiatry Tuesday. They took a message. I called again Wednesday, they said "we will get you on the calender" in a message. I called again Thursday and they told me, "oh, she's on a wait list. By the way, the wait list is out 50 days at least." FIFTY DAYS...I told them "NOT OK give me options or we all will be in psychiatry." They gave me another number, I left another message...We got no sleep again last night.
Today I emailed the doctor, told him the details and then I realized I could email her old psychiatrist, the one who wrote a prescription for sleep meds 3 years ago...AND she said "yes I can help you, yes I will send that right to the your pharmacy and if you have questions please let me know"...We have always called this doctor Dr. Sunshine because she was the first who saw mom when she was getting loopy. She put her on vitamin D and told her to get outside in the sun for at least 30 minutes everyday...Doctor Sunshine you sent your rays of sunlight and sleeping potion our way on this blustery day and I thank you so much. On top of having meds tonight we woke Gmom up every 45 minutes from 7am until 9pm tonight. I set a little timer and hopped on her bed and chatted and she laughed at my wake up Gmom antics. I got her up to the table more than usually also and Tessa and I bought her an Elmo coloring book. She colored Big Bird so yellow.
I just gave her that little white pill...oh please do your magic and help her relax and sleep and forget that she yells out "MAAAARRRRYYYY" every 45 minutes from 2 am until 7 am.
That's an interesting thing about dementia habits. She gets a habit and it seem all encompassing and then it fade away and another habit takes hold. Sleep over retching, yelling, and potty breaks...I am visualizing it oh so clearly....Sleep... I see her now so comfy in her blankets, clean from her shower and in fresh linens. Sleeping...Sleeping...ah..Good Night.
Tuesday, January 17, 2012
She's getting on our nerves
Gmom has been panicky and anxiety filled and overall cranky lately. She yells out for me day and night and when I ask what is up or how can I help you, she has nothing to say. I leave and 1 minute later she is screaming for me again..."can I have chocolate," or "do I have to go", or "when do they take me"...over and over and OVER again. Yes. you can tell I am getting annoyed...Trying so hard to get through to her, in a kind loving way, TO BE NICE OR ELSE. I know yelling is not going to help, but I did raise my voice yesterday.
I had helped her in the bathroom, I got her water and then told her I was sitting down to play a game with the family. 3 minutes later she starts screaming, "Mary".. I ignored it. "Mary" again, it's getting to me. "MARY" so loud I jump in my skin a bit...and so I Yelled...I told her to leave me a lone for a few minutes, that I just helped her and I wanted to spend 20 minutes playing a game with my kids and hubby. And you know what, it just makes her feel bad, and me feel bad...will she remember? No...will she scream out for me again? Yes. Breathing, releasing, relaxing. I am just not sure we all can handle living with her when she is so demanding, so loud and forceful in her requests, and so unable to filter herself these days. I have a call in to her doc to maybe change her meds, add a sleeping med, and another call in to the surgeon...Hurry up and schedule this already...
The other side of this is she keeps retching, keeps thinking she needs to throw up. Whenever she gets stressed. like after I chewed her out for interrupting my game, she gets all panicky and retches. The sound is loud and fills the house and we all are tired of it. She also is waking up Ashley who is in her 2nd semester of college and has a very full schedule and no room for missed sleep, so...overall, the family is being affected in many ways and we won't be able to continue long term living with her if she keeps up the cranky screaming retching panic attacks. Options now...and working with her docs...and surgery...t
I had helped her in the bathroom, I got her water and then told her I was sitting down to play a game with the family. 3 minutes later she starts screaming, "Mary".. I ignored it. "Mary" again, it's getting to me. "MARY" so loud I jump in my skin a bit...and so I Yelled...I told her to leave me a lone for a few minutes, that I just helped her and I wanted to spend 20 minutes playing a game with my kids and hubby. And you know what, it just makes her feel bad, and me feel bad...will she remember? No...will she scream out for me again? Yes. Breathing, releasing, relaxing. I am just not sure we all can handle living with her when she is so demanding, so loud and forceful in her requests, and so unable to filter herself these days. I have a call in to her doc to maybe change her meds, add a sleeping med, and another call in to the surgeon...Hurry up and schedule this already...
The other side of this is she keeps retching, keeps thinking she needs to throw up. Whenever she gets stressed. like after I chewed her out for interrupting my game, she gets all panicky and retches. The sound is loud and fills the house and we all are tired of it. She also is waking up Ashley who is in her 2nd semester of college and has a very full schedule and no room for missed sleep, so...overall, the family is being affected in many ways and we won't be able to continue long term living with her if she keeps up the cranky screaming retching panic attacks. Options now...and working with her docs...and surgery...t
Sunday, January 8, 2012
Finding a Way to Understanding
Well, I did get away yesterday. I went to prune roses at one of my favorite client's homes. I love the work I did. I got to use my femanly strength to dig out old old roses after carefully pruning the keepers. I almost broke a shovel handle. There is nothing like good physical work with a purpose and strong wind to blow away the stagnant airs of a bad night's sleep. I went out again later in the evening too, as last night was the yearly swim banquet for our local swim committee, Sierra Nevada. Riley was awarded for his top in the Nation swims, our age group coach and head coach both received awards and one of our senior swimmer's received female swimmer of the year. It was a good night out and the Davis Aquadarts were the Grand supremes...(a little too much toddler and Tiara with Tessa lately).
I had a break through, thinking about helping my mom get to a place of making a decision. She knows what surgery looks like and is scared, as anyone one be. What she can't grasp is what not having surgery will be like. That is a bigger scarier unknown to me. What does colon cancer look like when left untreated? What happens when a colon blocks from a large tumor. We have all been told, but we don't really know. None of us have experienced these things, and my mom especially is having a very real hard time seeing this path. It seems when she says no to surgery, she thinks life will continue as it is now, which is warm and comfy and easy for her. She is doing amazing, the water weight she had is resolving itself and she is moving better than she has. Today she is active in our conversations, is clear in her eyes, and seems a bit more here. So today when she asks me again, what happens if I don't have surgery...I will try to paint that very real scary picture for her, so she can see that not having surgery is also very scary, and painful, and could result in death too. Surgery may be scary, but...as my sister pointed out, it could go just fine...she could wind up cancer free and strong following this procedure. She could, after recover, add years to her life. We don't know though, and that leaves us in a place of indecision and confusion.
I had a break through, thinking about helping my mom get to a place of making a decision. She knows what surgery looks like and is scared, as anyone one be. What she can't grasp is what not having surgery will be like. That is a bigger scarier unknown to me. What does colon cancer look like when left untreated? What happens when a colon blocks from a large tumor. We have all been told, but we don't really know. None of us have experienced these things, and my mom especially is having a very real hard time seeing this path. It seems when she says no to surgery, she thinks life will continue as it is now, which is warm and comfy and easy for her. She is doing amazing, the water weight she had is resolving itself and she is moving better than she has. Today she is active in our conversations, is clear in her eyes, and seems a bit more here. So today when she asks me again, what happens if I don't have surgery...I will try to paint that very real scary picture for her, so she can see that not having surgery is also very scary, and painful, and could result in death too. Surgery may be scary, but...as my sister pointed out, it could go just fine...she could wind up cancer free and strong following this procedure. She could, after recover, add years to her life. We don't know though, and that leaves us in a place of indecision and confusion.
Saturday, January 7, 2012
Lots of Night Waking
Gmom has been up and down averaging 25 times a day...for the past THREE days and nights. Not sure what this is all about. She says, "aren't I suppose to go to the bathroom?" and "I thought I needed to go." This is also being combined with a huge increase in her anxiety, so bad she started retching again. I am at a "guess what is up" phase with her right now. She feels no pain, is not uncomfortable at any level, only panic attacky. In the past, prior to the great hemorrhage of 2011, I felt like her retching attacks were a sign of anxiety. They came along when I travelled to New York, twice this summer and lingered for a few weeks. They came again when I travelled to a weekend swim meet, they were there the morning of the great hemorrhage, and they are here today. Retching, no product...hmmm...what do you think?
Once this am when I went in to check how she was, after hearing her retch (I am liking saying this word), I asked her what was wrong and she said.." I am dying from pancreatic cancer..." oh boy...dementia sure gets in the way sometimes. I got a little fussy, a little firm in my tone trying to explain what is going on...that she has colon cancer and has denied treatment surgery so far...for the 1,000 time. See I do have a limit sometimes...I have reached it today, with the waking, the retching, and the confusion, coupled with my own hormonal swinging, I am fried from her busy scared self...I want someone else to do the talking, the figuring out how to phrase an answer to her question that she might understand...for a minute at least. When she is not stressing out about surgery, dying, and needing a new diaper, she is grunting like an ornery teenager, the ones I have read about, that don't answer questions, that give no eye contact, that are barely audible and then sulk...That's my momma right now, between retching, and calling me to fix her oxygen machine (when it is not broken), she is sulking and barely answering any of MY questions.
And then my sweet husband, somehow seeing my mom's little girl inside, reminds me...It won't do any good to talk firm, it only makes her feel bad, and she won't remember anyhow...Boy talk about falling head over heals in love more with my honey...He is my stone to lead into, the pillar who will hold me up as I want to scream...
Once this am when I went in to check how she was, after hearing her retch (I am liking saying this word), I asked her what was wrong and she said.." I am dying from pancreatic cancer..." oh boy...dementia sure gets in the way sometimes. I got a little fussy, a little firm in my tone trying to explain what is going on...that she has colon cancer and has denied treatment surgery so far...for the 1,000 time. See I do have a limit sometimes...I have reached it today, with the waking, the retching, and the confusion, coupled with my own hormonal swinging, I am fried from her busy scared self...I want someone else to do the talking, the figuring out how to phrase an answer to her question that she might understand...for a minute at least. When she is not stressing out about surgery, dying, and needing a new diaper, she is grunting like an ornery teenager, the ones I have read about, that don't answer questions, that give no eye contact, that are barely audible and then sulk...That's my momma right now, between retching, and calling me to fix her oxygen machine (when it is not broken), she is sulking and barely answering any of MY questions.
And then my sweet husband, somehow seeing my mom's little girl inside, reminds me...It won't do any good to talk firm, it only makes her feel bad, and she won't remember anyhow...Boy talk about falling head over heals in love more with my honey...He is my stone to lead into, the pillar who will hold me up as I want to scream...
Wednesday, January 4, 2012
Yes, No, Yes, No...
And so it goes. So far in the past 3 days, Gmom has said yes to surgery and no to surgery and yes again. Yesterday she woke up panicking and called me to her room to ask, "Did I have my surgery?" It is all so confusing to her and while we all believe surgery is the right choice, she doesn't. Not really. I tried last night to break down what it was about surgery that she didn't want. She told me she thinks she is too old to have such a big operation. And you know what, I kind of agree. Her age, 80.5 years young does increase her risk of complications. She is appearing more content in letting things be and what happens happens. It's hard to know the fate of this choice, just like it is hard to know the fate of her having a successful colon resection surgery. Bottom line for her, home is comfy and safe and in THIS moment right now that is where she wants to be.
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