Being mom's primary caretaker (and being her daughter) necessitates taking on another role - being her advocate. I try to do my best to make sure that her medical staff takes good care of her but does so with compassion. However, sometimes compassion is hard to come by in medical offices. Administrative staff especially (in our experience) can be unfeeling and harsh at times. An important skill I have learned is when to hold my tongue and when to let it go.
Last week I had scheduled an abdominal/pelvic ultrasound for her at the request of her primary physician, a man that everyone in our family loves and idolizes. She had been experiencing some pains in her abdomen and he wanted to make sure that everything was okay. Neither he nor I thought about the fact tthat the pelvic ultrasound prep could turn out to be a horrible trial for her (as it can for any woman). I had her drink her 32 ounces of water before leaving for the appointment, knowing that she would be in pain before we got there from having to hold her full bladder, but not expecting what was going to happen.
Apparently, she was so dehydrated that the water rushed to her bowels instead of filling her bladder. Halfway to the appointment and stuck in morning traffic, she told me she needed to make a bowel movement. I hung my head and asked her to hold on.
We arrived at the office, where I asked her to sit down while I got her checked in. She was telling me she couldn't wait anymore, so I informed the receptionist of the situtation and asked her to let us use the restroom. She told me that doing so would require rescheduling the pelvic portion of the exam (which I already knew). I told her I understood but we needed to go. She told me the tech would be out in just 2 - 3 minutes and asked me if we could wait. I asked mom to wait. She made it about one more minute before telling me she couldn't wait anymore. I told the receptionist we couldn't wait anymore and she repeated that we would ruin the pelvic exam. I told her, "I know, but we have to go. Now." Meanwhile there are five other women in the room watching the situation develop. And I was painfully aware, even if the recptionist was not, that the exam would be ruined either way. The receptionist tells someone else what is going on with us, then comes back and repeats, AGAIN, that we will have to reschedule the pelvic exam. I refrained from strangling her and took mom to relieve herself.
We returned to the waiting room and sat down.Ten minutes later, mom looks at me and asks if they forgot us. I told her that I was watching the clock. After another ten minutes, I took another deep breath and went up to the counter. "I just wanted to let you know that she was able to hold her bladder," I said. "So it's twenty minutes past her appointment time and we've been here half an hour?" The receptionist said, "Oh, I know! It''l be just a few more minutes . . . " I couldn't help saying, "I just couldnt' tell if you were making us wait longer because of the bathroom or what." Then the receptionist finally said the previous patient was just taking a little extra time to complete and the tech would be with us as soon as possible.
After the exam was over, they asked me to reschedule the pelvic. I already knew I was going to have to fight to cancel it, but I went ahead and scheduled it anyway. Then on the way home I called the doctor and left a message, explained that we had failed the pelvic, and asked if it was really necessary. His nurse called me back and and said he really wanted it but they could possibly do a CT scan if that would be easier. So I thanked her and cancelled the pelvic. We can talk about the CT the next time we see the doctor in person.
Mom's abdominal came back normal and she is no longer having pains. After discussing this with her and the hospice nurse I'm pretty certain that the pains were caused by constipation brought on by dehydration. The doctor will understand, I know. But I'd never try to explain that to a receptionist. Pick your battles, kid.
I screwed up by allowing them to schedule it in the first place. It won't happen again.
Monday, April 25, 2011
Sunday, April 24, 2011
Easter Sunday
I'm sitting here having a relatively quiet morning this morning and remembering the Easters I had as a child at my grandmother's house. I don't know what today will bring (mom is still sleeping off a headache) but I know it will be nothing to equal those days of egg hunts and massive grandma feasts. We may make it to church this evening or not depending on how she is feeling, or we may stay home and watch TV. I miss my grandma but I feel she is close to us and so does mom. Do you ever get that feeling that someone you have loved and lost is hanging right over your shoulder, watching or laughing with whatever you do? We do. That's one of the reasons I know mom will always be close to me, even after she has moved on to heaven. Today especially I am reminded that we will be reunited in the resurrection. Happy Easter to all of you from us.
Saturday, April 23, 2011
When's the Big Day?
If there's one thing that Mom and I have learned over the past few months, it's that people can be really funny about death. I'm not mentioning this to make light of anyone's feelings or to say that we haven't had our weird moments, because we have. But for us, at least, it's been more like a "benture".
When we were younger, I would look at mom, usually on a boring day, and say, "Hey mom. Wanna go on a benture?" and she would respond, "Sure!" and off we would go, usually on a road trip to some not-too-far-off small Kansas town where neither of us had been before. Most of these trips would end up just being a drive in the country, no big discovery. Sometimes we would hit tourist traps like the Indian Burial Ground that used to be out near Salina, or the Old Abilene Town. Sometimes we would end up shopping. Usually we would get a coke, or if we got hungry, stop somewhere new to eat. In Spokane, most of our "bentures" would exist of trying out new places to eat. Nowadays, our bentures are all but non-existent. Road trips are difficult as she is too debilitated to walk very far or sit up in the car for long trips unless she's having a good day, and there is always the math on the oxygen to consider. We still make road trips home to JC where I grew up to visit my best friends and my God daughters, and we have the routine down pretty well for that even though it has to wait until she is clearly on an upswing of good days. But all spontaneity has pretty much flown out the window and down the lane.
Our new benture is planning her funeral. I'm not sure how to break this to you, but we both find it an odd combination of comforting and relaxing to work out these details. It was stressful (honestly just a bit) at first, but it quickly got to be more like planning a party. Some people think it's morbid and don't want to discuss it. Some people freak out and panic and think it's like, you know, tomorrow (it's not). Which leads me back to my original thought.
Mom has been a bit stuck lately (as she will get on some small ideas from time to time) on the concept of prognosis. She knows she's not supposed to get better (although the doctors have been impressed with her condition lately). She knows that the COPD is eventually going to kill her, and that the process by which this will happen is chronic respiriatory failure. We have discussed the end of her life at length because we had to execute a DNR order for her. But sometimes she forgets the details and wants to go over it again. Sometimes she'll say, "So, no one has mentioned a time limit or anything . . . " and I have to remind her that like the woman in the cancer center commercials, she has no expiration date stamped on the bottom of her foot. Her illness is cyclic, with ups and downs -- the ups being mostly healthy days and the downs being days when she has infection in her respiratory tract, which usually also negatively affects her mental status, making a hard day for both of us. Typically, recently, we've been having about 3-4 weeks of infection to 1 week of health. Some infections are worse than others. Her current one is mild and her mental symptoms are likewise pretty mild. The infection she had in December nearly killed her because it triggered a low sodium episode. So all things considered, it's a crapshoot. She could go anywhere from next week to ten years, although I believe the doctors think she's unlikely to last that long. The bottom line is there is no bottom line -- no one really knows when. Is it any wonder we've become practical? I'm trying to apply the same good attitude that we fostered toward planning her funeral to helping her plan her will. She wants to leave everything up to me and I want to give everything away now. We will meet somewhere in the middle, as we usually do.
We have taken care of our business with each other and have no unfinished business. This is odd, I know. Most people never get that. But we know we love each other and that makes it easier to have calm discussions about things. Plus, we've had lots of practice dealing with very difficult experiences, so that helps. I try not to let her see my grief anymore than absolutely necessary because I don't want her worrying about me anymore than she already does (almost constantly). She tries not to be a burden on me and I have to remind her that that's what I'm here for. We manage quite nicely considering our circumstances. The hysteria has passed for the most part. For now.
When we were younger, I would look at mom, usually on a boring day, and say, "Hey mom. Wanna go on a benture?" and she would respond, "Sure!" and off we would go, usually on a road trip to some not-too-far-off small Kansas town where neither of us had been before. Most of these trips would end up just being a drive in the country, no big discovery. Sometimes we would hit tourist traps like the Indian Burial Ground that used to be out near Salina, or the Old Abilene Town. Sometimes we would end up shopping. Usually we would get a coke, or if we got hungry, stop somewhere new to eat. In Spokane, most of our "bentures" would exist of trying out new places to eat. Nowadays, our bentures are all but non-existent. Road trips are difficult as she is too debilitated to walk very far or sit up in the car for long trips unless she's having a good day, and there is always the math on the oxygen to consider. We still make road trips home to JC where I grew up to visit my best friends and my God daughters, and we have the routine down pretty well for that even though it has to wait until she is clearly on an upswing of good days. But all spontaneity has pretty much flown out the window and down the lane.
Our new benture is planning her funeral. I'm not sure how to break this to you, but we both find it an odd combination of comforting and relaxing to work out these details. It was stressful (honestly just a bit) at first, but it quickly got to be more like planning a party. Some people think it's morbid and don't want to discuss it. Some people freak out and panic and think it's like, you know, tomorrow (it's not). Which leads me back to my original thought.
Mom has been a bit stuck lately (as she will get on some small ideas from time to time) on the concept of prognosis. She knows she's not supposed to get better (although the doctors have been impressed with her condition lately). She knows that the COPD is eventually going to kill her, and that the process by which this will happen is chronic respiriatory failure. We have discussed the end of her life at length because we had to execute a DNR order for her. But sometimes she forgets the details and wants to go over it again. Sometimes she'll say, "So, no one has mentioned a time limit or anything . . . " and I have to remind her that like the woman in the cancer center commercials, she has no expiration date stamped on the bottom of her foot. Her illness is cyclic, with ups and downs -- the ups being mostly healthy days and the downs being days when she has infection in her respiratory tract, which usually also negatively affects her mental status, making a hard day for both of us. Typically, recently, we've been having about 3-4 weeks of infection to 1 week of health. Some infections are worse than others. Her current one is mild and her mental symptoms are likewise pretty mild. The infection she had in December nearly killed her because it triggered a low sodium episode. So all things considered, it's a crapshoot. She could go anywhere from next week to ten years, although I believe the doctors think she's unlikely to last that long. The bottom line is there is no bottom line -- no one really knows when. Is it any wonder we've become practical? I'm trying to apply the same good attitude that we fostered toward planning her funeral to helping her plan her will. She wants to leave everything up to me and I want to give everything away now. We will meet somewhere in the middle, as we usually do.
We have taken care of our business with each other and have no unfinished business. This is odd, I know. Most people never get that. But we know we love each other and that makes it easier to have calm discussions about things. Plus, we've had lots of practice dealing with very difficult experiences, so that helps. I try not to let her see my grief anymore than absolutely necessary because I don't want her worrying about me anymore than she already does (almost constantly). She tries not to be a burden on me and I have to remind her that that's what I'm here for. We manage quite nicely considering our circumstances. The hysteria has passed for the most part. For now.
Too Deep for Tears
I am going to share with you in this post a note I wrote on Facebook on January 2, 2010. It lays down some good background info about me and Mom:
--------------------------------------------------------------------------
I can feel him lurking outside her door
she won't give in lightly
but she knows the day is coming
when she will no longer be able
to play upon his kindness
and outwit him with cheerful smiles.
Her heart is warm
her mind, wise
She knows he does not intend to steal
that which will be freely given
when at last the hour has come
in which she must choose to go.
His is not an end as I perceive it
merely a transformation:
she will never cease to exist,
but will only quit this place
in quiet elegance.
Twenty-five years ago (dear God, has it been so long?) and a little more, I wrote the above poem about my grandmother. It was after my grandfather had passed away, and before she suffered the massive heart attacks which led to her eventual decline into Alzheimer's Disease and death. At the time I fancied myself a poet, embarking on what I saw at the time as a spiritual duty to help my mother cope emotionally with the loss of her parents. I can hear both my grandmother's and my mother's voice echoing in my ears this moment, as I sit typing this sentence: Lord, what fools these mortals be!
My mother has microvascular dementia. It is not Alzheimer's Disease, but the difference, it appears, is turning out to be academic. In the way and wee hours of this morning, I am sitting in my room overwhelmed with grief for her. I am alone in the world with this grief. I know that there are any number of you out there loving me right now who would not mind if I called you crying incoherently at 3:00 am. Yet the lapse lies not in knowing I am loved and supported, but in finding the words and energy to express the depth of my pain. It is an impossible task. As I sit here, I am so crippled by grief that I am repeatedly struggling to find the home keys on my keyboard and put words to this monster who is stealing my mother.
She is so much more than a mother. She is my best friend in every sense of the word. She and I are old war buddies, staggering down the road, wounded together but surviving. I have been working my entire life (and I do not choose these words lightly or facetiously) to prepare myself for her death. When I was eighteen months old, I toddled up to her near the front door of our house giggling, only to discover that she was crying. In that moment, for the first time, I knew something terrible was wrong with our lives. I didn't understand it then, but that is when I first began to know that I could eventually lose her. For many years I lived in such fear of losing her that I suffered regular premonitions of horrible deaths for her, of coming home or turning a corner and discovering she had been murdered or succombed to some horrible attack. Growing up, hating her as I did then, I could never understand that at his moment and time of my life, I would be able to look back and know that somehow my soul knew then, what was coming, and that I would need all the help I could get trying to process this horrible weight of grief. I am not ready for this battle. Is anyone ever?
When my grandmother passed from puttering through her daily life helping others into Alzheimer's, the fall was sudden and complete, triggered by the massive doses of morphine she was given for the pain of the heart attacks she had suffered. We ended up placing her in a nursing home when circumstances made it clear that we could not provide for her the level of care she needed. It was a horrible, painful struggle to watch her slide downhill to her death. There was nothing elegant about it. With mom, it has been until recently a slight loss of a degree of memory here, a degree of memory there, nothing important had slipped away yet, although she found it terrifying and difficult to cope with what she had lost, no matter how small. Over the past few weeks, it has been progressively more like watching her lose her step and begin to tumble down a mountainside in slow motion, gradually tipping over head first, perpetually just out of my grasp. And I am unable to save her. There is nothing I can do to stop this process. She may come back, and I believe it is likely that she will snap back from this current illness - a sinus/ear infection that is drastically affecting her range of neurological symptoms. But eventually she will slip away into darkness and there will be no calling her back. Tonight, the woman I know and love as my mother is gone from me, and in her place is someone who both is and is not my mother.
There is nothing I can do. I can take care of her needs and comfort her as much as I can, but that is little solace, knowing the magnitude of my loss. I am determined to prolong her time with me as long as possible, to avoid the nursing home like black death, because although no one (outside of my circle of dear friends who live and work in them day in and day out) wants to admit it, that is exactly what they are. My mother has lived her life with an extraordinary grace. Although she would scoff at that, it is true. I believe she deserves to end her life with as much dignity and grace as possible. And God is kind to us. I know that there will be good moments along with the bad, good laughs yet to be had, and lots of quality time left yet to be shared. But today the moments have all been bad. Today I sat for the first time and tried to comfort her when she could not be comforted. I tried to distract her from the scary loop her brain was stuck in and failed. For some reason, she believed for over 40 minutes she had to collect the colored things from her lap blanket and somehow get them to match and trade them for food, and she couldn't get any of them to match. It didn't matter that there were no things, only a blanket, or that she knew that food was on the way and we were going to give it to her without making her accomplish this strange task. After dinner, she could remember feeling that obsession and fear but didn't understand it any more than I did, and didn't seem concerned by it. Tonight, I have her home and safe in bed and I am here for her if she needs me, and I am feeding her the antibiotics our doctor prescribed to fight the infection, and hoping against hope that when the infection passes, so will the clouds of her memory and we will be somewhere back closer to normal for a while, whatever in the hell normal is.
But right now, at the base of my sorrow, for the first time in my life, I want my mother and she is not here. I always thought what Wordsworth by "too deep for tears" was pain so deep you couldn't cry. Tonight I'm learning that what he meant was that you can cry as hard as you want, and the tears will never touch that well of grief. It doesn't even come close.
--------------------------------------------------------------------------
I can feel him lurking outside her door
she won't give in lightly
but she knows the day is coming
when she will no longer be able
to play upon his kindness
and outwit him with cheerful smiles.
Her heart is warm
her mind, wise
She knows he does not intend to steal
that which will be freely given
when at last the hour has come
in which she must choose to go.
His is not an end as I perceive it
merely a transformation:
she will never cease to exist,
but will only quit this place
in quiet elegance.
Twenty-five years ago (dear God, has it been so long?) and a little more, I wrote the above poem about my grandmother. It was after my grandfather had passed away, and before she suffered the massive heart attacks which led to her eventual decline into Alzheimer's Disease and death. At the time I fancied myself a poet, embarking on what I saw at the time as a spiritual duty to help my mother cope emotionally with the loss of her parents. I can hear both my grandmother's and my mother's voice echoing in my ears this moment, as I sit typing this sentence: Lord, what fools these mortals be!
My mother has microvascular dementia. It is not Alzheimer's Disease, but the difference, it appears, is turning out to be academic. In the way and wee hours of this morning, I am sitting in my room overwhelmed with grief for her. I am alone in the world with this grief. I know that there are any number of you out there loving me right now who would not mind if I called you crying incoherently at 3:00 am. Yet the lapse lies not in knowing I am loved and supported, but in finding the words and energy to express the depth of my pain. It is an impossible task. As I sit here, I am so crippled by grief that I am repeatedly struggling to find the home keys on my keyboard and put words to this monster who is stealing my mother.
She is so much more than a mother. She is my best friend in every sense of the word. She and I are old war buddies, staggering down the road, wounded together but surviving. I have been working my entire life (and I do not choose these words lightly or facetiously) to prepare myself for her death. When I was eighteen months old, I toddled up to her near the front door of our house giggling, only to discover that she was crying. In that moment, for the first time, I knew something terrible was wrong with our lives. I didn't understand it then, but that is when I first began to know that I could eventually lose her. For many years I lived in such fear of losing her that I suffered regular premonitions of horrible deaths for her, of coming home or turning a corner and discovering she had been murdered or succombed to some horrible attack. Growing up, hating her as I did then, I could never understand that at his moment and time of my life, I would be able to look back and know that somehow my soul knew then, what was coming, and that I would need all the help I could get trying to process this horrible weight of grief. I am not ready for this battle. Is anyone ever?
When my grandmother passed from puttering through her daily life helping others into Alzheimer's, the fall was sudden and complete, triggered by the massive doses of morphine she was given for the pain of the heart attacks she had suffered. We ended up placing her in a nursing home when circumstances made it clear that we could not provide for her the level of care she needed. It was a horrible, painful struggle to watch her slide downhill to her death. There was nothing elegant about it. With mom, it has been until recently a slight loss of a degree of memory here, a degree of memory there, nothing important had slipped away yet, although she found it terrifying and difficult to cope with what she had lost, no matter how small. Over the past few weeks, it has been progressively more like watching her lose her step and begin to tumble down a mountainside in slow motion, gradually tipping over head first, perpetually just out of my grasp. And I am unable to save her. There is nothing I can do to stop this process. She may come back, and I believe it is likely that she will snap back from this current illness - a sinus/ear infection that is drastically affecting her range of neurological symptoms. But eventually she will slip away into darkness and there will be no calling her back. Tonight, the woman I know and love as my mother is gone from me, and in her place is someone who both is and is not my mother.
There is nothing I can do. I can take care of her needs and comfort her as much as I can, but that is little solace, knowing the magnitude of my loss. I am determined to prolong her time with me as long as possible, to avoid the nursing home like black death, because although no one (outside of my circle of dear friends who live and work in them day in and day out) wants to admit it, that is exactly what they are. My mother has lived her life with an extraordinary grace. Although she would scoff at that, it is true. I believe she deserves to end her life with as much dignity and grace as possible. And God is kind to us. I know that there will be good moments along with the bad, good laughs yet to be had, and lots of quality time left yet to be shared. But today the moments have all been bad. Today I sat for the first time and tried to comfort her when she could not be comforted. I tried to distract her from the scary loop her brain was stuck in and failed. For some reason, she believed for over 40 minutes she had to collect the colored things from her lap blanket and somehow get them to match and trade them for food, and she couldn't get any of them to match. It didn't matter that there were no things, only a blanket, or that she knew that food was on the way and we were going to give it to her without making her accomplish this strange task. After dinner, she could remember feeling that obsession and fear but didn't understand it any more than I did, and didn't seem concerned by it. Tonight, I have her home and safe in bed and I am here for her if she needs me, and I am feeding her the antibiotics our doctor prescribed to fight the infection, and hoping against hope that when the infection passes, so will the clouds of her memory and we will be somewhere back closer to normal for a while, whatever in the hell normal is.
But right now, at the base of my sorrow, for the first time in my life, I want my mother and she is not here. I always thought what Wordsworth by "too deep for tears" was pain so deep you couldn't cry. Tonight I'm learning that what he meant was that you can cry as hard as you want, and the tears will never touch that well of grief. It doesn't even come close.
A New Endeavour
I have been pondering the start of this blog for a long time. There are several reasons to do it, not the least of which is to presserve my own sanity. I have also several reasons for not doing it, the most important being protecting mom's privacy. I have wondered, will some people hate me for being honest about what I am feeling from day to day? I suppose so. But what other people think has never been much of a factor in my life, especially not in the times I was happiest. I am not happy now. I have just come through what may have been the most difficult seven months of my life and I'm looking forward to more difficulties ahead which cannot be circumvented. I have wondered about what mom would think about this, in fact I've even talked to her about it. She probably doesn't remember telling me that I should write whatever is in my heart and not worry about what other prople think, but knowing her the way that I do I can be fairly assured that if I asked her again, I would receive the same or a very similar reply. At this point in her life (I'm not sure about other points, but I suspect that I could say "always" here) she is far more worried about me and my condition than about herself.
My mother has end stage COPD. She also has microvascular multifarc dementia, a heart condition, and severe gastrointestinal issues that may eventually force her onto a feeding tube full time. She will not get better, they tell us, but recently they have been surprised at her progress. She could live as little as six months or as long as six years, or longer. She suffers every day, not always from pain, but also from indignity and frustration. I am her daughter. I am her primary caretaker. I am her advocate. I am her "angel".
I suffer every day too. I have lots of issues besides caring for mom, both mental and physical.What do I hope to gain by sharing this suffering with people? First, I want to create a record not only of our suffering but of our joys. They are few and far between and too soon forgotten in the mists of confusion on both our parts. Also, I would like to open up some about some things that are difficult to talk about with anyone in the course of normal conversation. Finally, I hope, some people will read this and understand what we are going through and perhaps even share their experience and insight with us, if not to make our road easier, then to lighten our load by feeling we share it with others.
My mother has end stage COPD. She also has microvascular multifarc dementia, a heart condition, and severe gastrointestinal issues that may eventually force her onto a feeding tube full time. She will not get better, they tell us, but recently they have been surprised at her progress. She could live as little as six months or as long as six years, or longer. She suffers every day, not always from pain, but also from indignity and frustration. I am her daughter. I am her primary caretaker. I am her advocate. I am her "angel".
I suffer every day too. I have lots of issues besides caring for mom, both mental and physical.What do I hope to gain by sharing this suffering with people? First, I want to create a record not only of our suffering but of our joys. They are few and far between and too soon forgotten in the mists of confusion on both our parts. Also, I would like to open up some about some things that are difficult to talk about with anyone in the course of normal conversation. Finally, I hope, some people will read this and understand what we are going through and perhaps even share their experience and insight with us, if not to make our road easier, then to lighten our load by feeling we share it with others.
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