Apparently Mom is not ready to leave us at this point. Hospice came in to do their evaluation the other morning. I kept getting phone calls at work as they alternated between my sister and I go gather information and make their recommendations. At this point, they do not see any medical evidence that shows she has six months or less to live. She is still getting short of breath at times, which is consistent with a blood clot in the lungs. Again, they cannot test for it nor can they treat it with blood thinners. She also is still ambulatory, which means she is moving around on her own and taking relative care of herself.
Her great aunt and two cousins went to visit yesterday. (Mom's dad was the oldest of 11 children, so the generations vary greatly in age!) They had a nice visit, but apparently Mom didn't know them when they came in. Once she was introduced to them, though, she was able to retain some of that information. My sister had a similar experience when she visited a couple of months ago. Mom kept introducing her as an old neighbor from 40 years ago, but with repetition seemed to be able to remember her. Some other family friends are planning to visit her later today. It will be interesting to see what they have to say.
The hardest part of this whole thing is the not-knowing. At least with Dad, when Hospice was recommended, we knew he was at the end. They could give us a timetable and it was fairly accurate. With Mom, it is a big roller coaster of just not knowing. I have a great deal of difficulty not having some control. The Great Unknown is hard for me to navigate. I know you can never know exactly when someone is going to die. But this up and down from "She's doing okay for now," to "She's going to the hospital," to "We recommend calling Hospice" to "She's rallying and doing great," is a lot. We went through this with my father for years.
As I was sharing with friends and family the "good news" that Mom didn't need Hospice, they were all so excited. "That's great news!" My sort-of-other-half hit the nail on the head, though. He said that while it was good news, it also kind of sucked to not have a direction and clear answers. I wish I could remember his exact phrasing, because it was perfect. And I just cannot articulate precisely how I feel about it.
Would I feel differently had I not just gone through this with Dad in the last year? Probably. If he were here with us, we would be holding on to each other for support. It would be easier to see the glass as truly half full. Because when they were both here, their deaths seemed so far away. Losing Dad nine months ago just thrusts their mortality into the forefront.
I am not saying that I wish my mother were dead. I really hope I am getting that across. And when I say there is a chance that the blood clot could take her today or it could break up and she could still be here for a few years, I am not trying to be negative. I am trying to be realistic. I am not the kind of person who wants to put on blinders and ignore the entire realm of possibility.
Okay, that being said, I could literally walk out my front door and get hit by a bus later today, or I could live for several more years. We don't know how we are going to go, nor when. I get that. I just don't like this type of roller coaster ride.
Showing posts with label GBE2. Show all posts
Showing posts with label GBE2. Show all posts
Saturday, March 10, 2012
Wednesday, March 7, 2012
GBE2: Confrontation
It is difficult to confront your own feelings about your loved one with Alzheimer's. You love that person and want her in your life. You hate the disease and what it has done to her. You miss the person she once was and want her back. And you also want the misery to end quickly - both for you and for her. That is not an easy pill to swallow. To wish death on another person? How awful! But it isn't so much death as it is a rebirth into a world without pain and agony and misery.
But how do you confront the actual death of that person when it finally arrives? That is the dilemma I am dealing with right now.
This past Saturday, I was deeply napping because I was really sick. I am not a napper. So, imagine my annoyance when my phone started to ring. I figured I could ignore it, but I recognized the number as that of the nursing home where my mother lives. They were calling to tell me that my mother was having "an episode" and wanted to know if they should send her to the hospital. Apparently they had woken her up from her nap because it was time for dinner. She was short of breath and her already high blood pressure went up even more. She wasn't in any pain and oxygen seemed to help her calm down. Her numbers went back to normal and they assumed it was a panic attack. I figured if she was okay, it probably was a panic attack. After all, she has dementia and they woke her up. She was probably confused and got scared. I had the smallest twinge in my stomach, similar to when my father went into the hospital a year ago.
They said they would call in the doctor and would get back to me. About an hour later, they called back and said she had had another small episode. The doctor didn't think it was necessary to go to the hospital and gave her oxygen and Lasix. Again, it seemed to be helping and all seemed to be okay. That twinge in my stomach grew. I went to my friend's house for food and mindless TV. A few hours later I called to check on her and she was resting comfortably.
I slept hard that night, relieved that she was okay. But then that damn phone woke me out of a solid sleep again at 9 a.m. They were taking her to the hospital because she was having yet another episode upon awakening. I stayed calm and woke myself up. I sent a message to my sister via Facebook because she was working out of the country. When I called the hospital a little later to check on her, it sounded like they were concerned about Congestive Heart Failure. Now the twinge had turned into a pit.
There was a lot of confusion when I was trying to talk to nurses. They all seemed to want to brush me off. One even handed the phone to my mother and asked her permission to speak with me. I wanted to shout, "Do you understand that this is an Alzheimer's patient? I am her primary contact!" It turns out that the hospital was in the process of updating their computers and somehow Mom's file came up with Dad still as her primary contact.
My sister got back to the States on Monday and quickly sorted out contact information. She took over the details with the doctors and nurses. She had the time. I was knee-deep in CPSE evaluations and meetings for some of my students, as well as getting over being really sick. She kept sending me updates throughout the day. It was now looking like she did in fact suffer from a small heart attack, but should be just fine. Her numbers were fine. She wasn't in any pain. All was looking good. But that pit turned into a rock.
By Tuesday, doctors had determined that she also had kidney disease. Because of the kidney disease, they couldn't properly treat the clot and heart issues. They said that we could order a bunch of other tests and try a bunch of different procedures and other medications. Or, we could consider physician-prescribed comfort care or Hospice.
Boom. Confronting death. Only this time it wasn't as imminent as Dad's was. With Dad we knew it was going to be three days, because we had to stop his feeding tube and water. And sure enough, it took three days. But with Mom, there wasn't a real time frame. The blood clot could come loose and she could easily have another heart attack and BAM be gone from us. Or, she could linger in her condition for quite some time. It happens all the time with people.
So, here I am. Stuck in limbo. Confronting the death of my own mother, a mere 9 months after my father died. To make matters worse, the H-word was given to us on my father's birthday. It was also the six-year anniversary of my mother's older brother's death from Alzheimer's and heart disease, plus a few other ailments.
It was also a week after I started a blogging journey on one of my other blogs about dealing with the loss of both of my parents. A bookseller acquaintance of mine gave me a book last summer right after my father died. It's called They Live On and the author writes about dealing with the losses of her parents so close together. He thought I might get some comfort out of reading someone else's experience. And of course he was hoping I would do a review of it, to help support a local author. I couldn't bring myself to read it and to feel all of those emotions until then. Instead of doing a traditional review, it turned into a sort of "Julie and Julia" thing where I was paralleling my own experiences and feelings with that of the book. Ironically, the last post that I had managed to do before I got sick was called "Just Take Her." The author of the book was talking about wanting her mother to heal from her brain tumor and cancer, but realizing it couldn't happen here on Earth. I paralleled it to my own feelings about my mother and her Alzheimer's. Having this happen was almost like having those prayers answered.
Read the series of posts from They Live On here. At the time of this posting, my series is not yet complete. But this link will take you to all of them in reverse chronological order. And I am sure that I will have several more posts completed soon.
As of this moment, as I am typing this, I have no idea when my mother is going to pass away. The waiting is making me crazy. I have to confront a lot of my own issues. Do I want to see her or not? Will I just agitate her like usual and cause her more pain? Can I detach myself enough to just hold the hand of a sick woman? How is this one going to happen? Will I be there for that final moment? Are we going to know like we did with Dad?
I am sitting in a self-imposed silence because I can't stand the sound of any music or TV right now. I am already tired of talking to family members on the phone. But even the silence is making me crazy.
Part of me wants to just scream and rant and rave. I cried like a baby last night, several times. I have to wait until we have more information from Hospice and the nursing home before I start telling more friends and family about it. But I am avoiding confrontation with my sister by following her lead and working with her. The last thing we need right now is to argue. We need each other, because we are all we have left.
But how do you confront the actual death of that person when it finally arrives? That is the dilemma I am dealing with right now.
This past Saturday, I was deeply napping because I was really sick. I am not a napper. So, imagine my annoyance when my phone started to ring. I figured I could ignore it, but I recognized the number as that of the nursing home where my mother lives. They were calling to tell me that my mother was having "an episode" and wanted to know if they should send her to the hospital. Apparently they had woken her up from her nap because it was time for dinner. She was short of breath and her already high blood pressure went up even more. She wasn't in any pain and oxygen seemed to help her calm down. Her numbers went back to normal and they assumed it was a panic attack. I figured if she was okay, it probably was a panic attack. After all, she has dementia and they woke her up. She was probably confused and got scared. I had the smallest twinge in my stomach, similar to when my father went into the hospital a year ago.
They said they would call in the doctor and would get back to me. About an hour later, they called back and said she had had another small episode. The doctor didn't think it was necessary to go to the hospital and gave her oxygen and Lasix. Again, it seemed to be helping and all seemed to be okay. That twinge in my stomach grew. I went to my friend's house for food and mindless TV. A few hours later I called to check on her and she was resting comfortably.
I slept hard that night, relieved that she was okay. But then that damn phone woke me out of a solid sleep again at 9 a.m. They were taking her to the hospital because she was having yet another episode upon awakening. I stayed calm and woke myself up. I sent a message to my sister via Facebook because she was working out of the country. When I called the hospital a little later to check on her, it sounded like they were concerned about Congestive Heart Failure. Now the twinge had turned into a pit.
There was a lot of confusion when I was trying to talk to nurses. They all seemed to want to brush me off. One even handed the phone to my mother and asked her permission to speak with me. I wanted to shout, "Do you understand that this is an Alzheimer's patient? I am her primary contact!" It turns out that the hospital was in the process of updating their computers and somehow Mom's file came up with Dad still as her primary contact.
My sister got back to the States on Monday and quickly sorted out contact information. She took over the details with the doctors and nurses. She had the time. I was knee-deep in CPSE evaluations and meetings for some of my students, as well as getting over being really sick. She kept sending me updates throughout the day. It was now looking like she did in fact suffer from a small heart attack, but should be just fine. Her numbers were fine. She wasn't in any pain. All was looking good. But that pit turned into a rock.
By Tuesday, doctors had determined that she also had kidney disease. Because of the kidney disease, they couldn't properly treat the clot and heart issues. They said that we could order a bunch of other tests and try a bunch of different procedures and other medications. Or, we could consider physician-prescribed comfort care or Hospice.
Boom. Confronting death. Only this time it wasn't as imminent as Dad's was. With Dad we knew it was going to be three days, because we had to stop his feeding tube and water. And sure enough, it took three days. But with Mom, there wasn't a real time frame. The blood clot could come loose and she could easily have another heart attack and BAM be gone from us. Or, she could linger in her condition for quite some time. It happens all the time with people.
So, here I am. Stuck in limbo. Confronting the death of my own mother, a mere 9 months after my father died. To make matters worse, the H-word was given to us on my father's birthday. It was also the six-year anniversary of my mother's older brother's death from Alzheimer's and heart disease, plus a few other ailments.
It was also a week after I started a blogging journey on one of my other blogs about dealing with the loss of both of my parents. A bookseller acquaintance of mine gave me a book last summer right after my father died. It's called They Live On and the author writes about dealing with the losses of her parents so close together. He thought I might get some comfort out of reading someone else's experience. And of course he was hoping I would do a review of it, to help support a local author. I couldn't bring myself to read it and to feel all of those emotions until then. Instead of doing a traditional review, it turned into a sort of "Julie and Julia" thing where I was paralleling my own experiences and feelings with that of the book. Ironically, the last post that I had managed to do before I got sick was called "Just Take Her." The author of the book was talking about wanting her mother to heal from her brain tumor and cancer, but realizing it couldn't happen here on Earth. I paralleled it to my own feelings about my mother and her Alzheimer's. Having this happen was almost like having those prayers answered.
Read the series of posts from They Live On here. At the time of this posting, my series is not yet complete. But this link will take you to all of them in reverse chronological order. And I am sure that I will have several more posts completed soon.
As of this moment, as I am typing this, I have no idea when my mother is going to pass away. The waiting is making me crazy. I have to confront a lot of my own issues. Do I want to see her or not? Will I just agitate her like usual and cause her more pain? Can I detach myself enough to just hold the hand of a sick woman? How is this one going to happen? Will I be there for that final moment? Are we going to know like we did with Dad?
I am sitting in a self-imposed silence because I can't stand the sound of any music or TV right now. I am already tired of talking to family members on the phone. But even the silence is making me crazy.
Part of me wants to just scream and rant and rave. I cried like a baby last night, several times. I have to wait until we have more information from Hospice and the nursing home before I start telling more friends and family about it. But I am avoiding confrontation with my sister by following her lead and working with her. The last thing we need right now is to argue. We need each other, because we are all we have left.
Tuesday, December 27, 2011
GBE2: One Year Ago
I haven't posted to this blog since June 10th. After Dad died, it just got to be too difficult to write. When I had started this blog, it was two weeks before he went into the hospital. We had plans to work on it together. He was always calling me with stories of Mom and we supported each other. Alas, that project just wasn't meant to be, I guess. It has been hard to conceive of continuing it, but I will still attempt it here and there. This isn't just about me - this is for all of you.
So, that all being said, Happy Holidays! We are two days past Christmas and a few days away from the New Year. The holiday season always makes one reflect on life and love. This holiday season I have been reflecting on one year ago and how much everything has changed.
One year ago, I drove home on Christmas Eve. The usual 6 1/2 hour drive seemed even worse than usual because I was fighting a migraine. By the time I got to my parents' house, my eyeballs felt like they were being ripped out of my head. My stomach was turning and the world was spinning. I just wanted to go to bed, but my father insisted I was going to go to church with them this year. He knew it would be the last time we would be able to go together on Christmas Eve, only we thought it would be because Mom would be in a home by summer. Not because he was going to die.
I tried to take something for my head and stomach, but it wasn't working. We got into an argument with Mom because she smelled so bad and wasn't dressed right. She hadn't showered in at least a week and had been sleeping in her clothes. But we couldn't convince her to take a shower before we left. She kept insisting that she was fine. And she kept adding layers of clothes over the ones she was already wearing. At least they were all red for Christmas!
She kept hugging me because she was happy to see me. I can't even begin to describe what the B.O. was doing to my head and stomach. But at the same time, I wanted to collapse against my mommy's shoulder because I felt so sick.
The bickering finally had to cease and we made it to church. Like always, Dad had to walk all the way up to the front of the church. That is where the light was the brightest and the music was the loudest. The poinsettias in front of us were expanding and contracting, along with the thudding pain in my head. I remember laying my head on Mom's shoulder at times.
I remember little else of the service, other than spotting a former student sitting off to the side with his family. I chatted with him for a bit after the service. We had connected on Facebook, but probably not seen each other in at least 13 years or so. I also remember the pastor doing his sermon and using me as an example for whatever it was. He kept "talking to me." I struggled to pay attention. I was afraid I would throw up on his shoes if I looked away. I remember introducing myself afterwards and apologizing for being so out of it.
Christmas Day was relatively uneventful. I am pretty sure Mom kept wearing the same clothes and had slept in them again. I had wanted to make a turkey, but was coming off of the migraine. Dad and I agreed that my turkey taco soup would be an acceptable alternative. I cooked it and we gathered around the TV watching football.
The following night we decided to actually make a turkey. I asked Mom to help me, because I knew this would be the last time she could do so. She remembered enough to help me bag the turkey for roasting, but couldn't remember her recipe for the stuffing. I wish I would have paid more attention when I was younger. But my sister is the one who always made it with her and I am not a fan of stuffing.
The turkey ended up being perfect. And it is the only one I have ever made.
I made all of the traditional side dishes and fixed my mom a plate. It was the best meal she had eaten in a while. She raved about how wonderful it was. And I was proud of myself.
There were several other events that transpired during that trip. But I will save them for another entry. Thanks for starting the journey with me down Memory Lane.
So, that all being said, Happy Holidays! We are two days past Christmas and a few days away from the New Year. The holiday season always makes one reflect on life and love. This holiday season I have been reflecting on one year ago and how much everything has changed.
One year ago, I drove home on Christmas Eve. The usual 6 1/2 hour drive seemed even worse than usual because I was fighting a migraine. By the time I got to my parents' house, my eyeballs felt like they were being ripped out of my head. My stomach was turning and the world was spinning. I just wanted to go to bed, but my father insisted I was going to go to church with them this year. He knew it would be the last time we would be able to go together on Christmas Eve, only we thought it would be because Mom would be in a home by summer. Not because he was going to die.
I tried to take something for my head and stomach, but it wasn't working. We got into an argument with Mom because she smelled so bad and wasn't dressed right. She hadn't showered in at least a week and had been sleeping in her clothes. But we couldn't convince her to take a shower before we left. She kept insisting that she was fine. And she kept adding layers of clothes over the ones she was already wearing. At least they were all red for Christmas!
She kept hugging me because she was happy to see me. I can't even begin to describe what the B.O. was doing to my head and stomach. But at the same time, I wanted to collapse against my mommy's shoulder because I felt so sick.
The bickering finally had to cease and we made it to church. Like always, Dad had to walk all the way up to the front of the church. That is where the light was the brightest and the music was the loudest. The poinsettias in front of us were expanding and contracting, along with the thudding pain in my head. I remember laying my head on Mom's shoulder at times.
I remember little else of the service, other than spotting a former student sitting off to the side with his family. I chatted with him for a bit after the service. We had connected on Facebook, but probably not seen each other in at least 13 years or so. I also remember the pastor doing his sermon and using me as an example for whatever it was. He kept "talking to me." I struggled to pay attention. I was afraid I would throw up on his shoes if I looked away. I remember introducing myself afterwards and apologizing for being so out of it.
Christmas Day was relatively uneventful. I am pretty sure Mom kept wearing the same clothes and had slept in them again. I had wanted to make a turkey, but was coming off of the migraine. Dad and I agreed that my turkey taco soup would be an acceptable alternative. I cooked it and we gathered around the TV watching football.
The following night we decided to actually make a turkey. I asked Mom to help me, because I knew this would be the last time she could do so. She remembered enough to help me bag the turkey for roasting, but couldn't remember her recipe for the stuffing. I wish I would have paid more attention when I was younger. But my sister is the one who always made it with her and I am not a fan of stuffing.
The turkey ended up being perfect. And it is the only one I have ever made.
I made all of the traditional side dishes and fixed my mom a plate. It was the best meal she had eaten in a while. She raved about how wonderful it was. And I was proud of myself.
There were several other events that transpired during that trip. But I will save them for another entry. Thanks for starting the journey with me down Memory Lane.
Friday, June 10, 2011
Lost and Found
I think about my mother and how much she has lost. She has lost her husband, only she doesn't quite know or understand that he is gone. (We elected to not tell her Dad passed away, but we think she found out, anyway.) She has lost her memories of the past few years. She doesn't even remember things from one moment to the next. She has lost friends and family who either have no idea or simply do not understand.
But she has found new friends. She has found Dad all around her, as he is alive and well in her memories and thoughts and she talks to him every day. And with the passing of my father, she almost found new family connections, as everyone made a point to go visit her while they were in town.
Mom has lost a lot of memories. But many of the ones she has lost are the unpleasant ones. Sure a nasty one will pop up from time to time. But most of the time, all she can remember are the happier times.
Mom has found a new way to be happy because she has been able to remember her happy days. She has been blissfully unaware of the sadness and the hell that is consuming the rest of us. She has found her happy place and is allowed to stay there.
Mom had gotten lost, as she became one of those statistics who wandered off in the middle of the night. While it was a scary experience and we all know the horror stories from similar situations, she was lucky to be found. And when she was found, it led her to a new way of life where she has found peace and proper care.
I have lost my mother. That is not easy to take. Yes, she is physically still here, but that woman in the nursing home is not the mother who raised me. I have found a new kind of relationship with her and new levels of patience and understanding.
But she has found new friends. She has found Dad all around her, as he is alive and well in her memories and thoughts and she talks to him every day. And with the passing of my father, she almost found new family connections, as everyone made a point to go visit her while they were in town.
Mom has lost a lot of memories. But many of the ones she has lost are the unpleasant ones. Sure a nasty one will pop up from time to time. But most of the time, all she can remember are the happier times.
Mom has found a new way to be happy because she has been able to remember her happy days. She has been blissfully unaware of the sadness and the hell that is consuming the rest of us. She has found her happy place and is allowed to stay there.
Mom had gotten lost, as she became one of those statistics who wandered off in the middle of the night. While it was a scary experience and we all know the horror stories from similar situations, she was lucky to be found. And when she was found, it led her to a new way of life where she has found peace and proper care.
I have lost my mother. That is not easy to take. Yes, she is physically still here, but that woman in the nursing home is not the mother who raised me. I have found a new kind of relationship with her and new levels of patience and understanding.
Friday, May 27, 2011
Expectations in Alzheimer's
It can be hard for me to plan a visit to see my mother, because I never know what to expect. I prefer that she is having a good day and is happy to see me. Unfortunately, I am often greeted with Cranky Mommy. For some reason, I seem to bring that side out in her.
I have learned to keep my phone stocked with pictures from my garden, as I can usually distract her with those. I have learned to expect other women to come join us, as they are also lonely for attention from other people. I have learned to be prepared to make up a quick reason for escape at a crucial moment, to leave Mom in a good mood but to also prevent her from trying to walk out with me.
I have had to learn to let go of expectations with my mother and to just take each moment as it comes. Alzheimer's is tricky and unpredictable. I have to take this roller coaster ride in stride, because I know what is coming later on down the road. It just feels weird for so much to have changed in such a short time. Six months ago, both of my parents were relatively fine and at home. I knew what to expect when I came home. And now each trip is an adventure into the unknown with them both.
I have learned to keep my phone stocked with pictures from my garden, as I can usually distract her with those. I have learned to expect other women to come join us, as they are also lonely for attention from other people. I have learned to be prepared to make up a quick reason for escape at a crucial moment, to leave Mom in a good mood but to also prevent her from trying to walk out with me.
I have had to learn to let go of expectations with my mother and to just take each moment as it comes. Alzheimer's is tricky and unpredictable. I have to take this roller coaster ride in stride, because I know what is coming later on down the road. It just feels weird for so much to have changed in such a short time. Six months ago, both of my parents were relatively fine and at home. I knew what to expect when I came home. And now each trip is an adventure into the unknown with them both.
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