You think your doctor will tell you when your loved one needs hospice?
They should know, right?
Not always the case.
I asked my mother’s doctor about hospice (Alzheimer’s and Parkinson’s) months beforehand and was “poo-pooed” away. Mother had a great way of rallying herself together for doctor visits, but I lived with her, cared for her 24/7, and I was beginning to see a shift.
I knew my mother had taken a turn. I knew that both of us were over the tests, treatments, and hospital rigamarole. I knew, in essence, that she had given up the will to live.
Alzheimer’s does more to a person’s body than simply making them forget names and current events. They forget things at a molecular level as well. They forget what to do with a spoon, how to chew and swallow. These symptoms don’t just come and stay–like early dementia, it comes and goes. That makes it easier to dismiss it, deny it, and hope it isn’t true.
Some days, my mom was pretty alert and could at least remember to put whatever food was in her hand into her mouth. Although her ability to remember me or where she lived seemed permanently lost, her body could still manage biological urges.
On other days, that natural reaction of opening your mouth when food comes near–was gone. That’s a tough realization.
For the most part, Mother was still mobile, or at least trying to be. She had this incredible drive to walk, stand up, and I know that for her, Alzheimer’s had a dimension of added aggitation. Some Alzheimer’s patients pace, exhibit unbelievable strength, and can go with limited sleep.
It’s one of those diseases that can manifest itself differently in different people. Some are babblers, curse like sailors, say and do apprehensible sexual things, blurt out inappropriate racial comments. Others are silent. They’re entombed and barely ever move.
Same disease, different brains.
But how do you know as a family member/caregiver that it’s time to call hospice?
First, the working definition of hospice or palliative care is: your loved one has a “life limiting condition.” Their words, not mine. While it’s technically correct, and I can’t think of a better way to say it, it still sounds odd.
In layman’s terms, most people think it means your loved one has a diagnosis of less than six months to live, and with some hospice situations, a year. While that’s technically true, some people receive hospice or palliative services for much longer.
The difference in hospice and palliative care is that palliative care specializes in the relief of the pain, symptoms and stress of serious illness.
Hospice care always provides palliative care. Hospice focuses on terminally ill people who no longer seek treatments to cure them and who are expected to live for a year or less.
Three signs That Indicate Your Loved One is Ready For Hospice:
1. The disease has progressed to the point that there’s no cure, and you’ve decided to make your loved one comfortable and not actively seek to treat the disease.
2. You and your loved one chooses to forego any further testing of hospitalizations and will allow the dying process to happen naturally.
3. You’re ready to begin to let go, say good bye, and follow the oath of hospice, which is to “neither hinder, not hasten death.”
Check out www.nhpco.org, website for National Hospice and Palliative Care Organization for more information.
Caring Connections also shares this advice: (www.caringconnections.com)
“Anyone can inquire about hospice services. You or your loved one may call a local hospice and request services. The hospice staff will then contact your physician to determine if a referral to hospice is appropriate. Another way to inquire about hospice is to talk with your physician, and he or she can make a referral to hospice.Hospice can begin as soon as a ‘referral’ is made by the person’s doctor.
The hospice staff will then contact the person referred to set up an initial meeting to review the services the hospice will offer and sign the necessary consent forms for care to begin. Usually, care is ready to begin within a day or two of a referral. However, in urgent situations, service may begin sooner.
When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for loved ones and family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent. When is the right time to ask about hospice?
By having these discussions in advance, uncomfortable situations can be avoided. Instead, educated decisions can be made that include the advice and input of loved ones.”
Shannon Martin of Aging Wisely shares:
Just recently when my Grandmother died, my aunt (who is a geriatric nurse) said, “I don’t know that it’s time for Hospice yet” even when my Grandmother had stopped eating and they had decided no more hospitalizations, tests etc.”
This shows there’s some denial, even among professionally trained individuals, especially when it involves their own family. Accepting that the end is near, that you will begin to have to let go, to sit quietly by a loved one’s bedside, to not go into “heroics” and throw on the paddles or rush to the ER is very, very difficult.
The last month of my own mother’s life was in many ways one of the most peaceful times of my life. It was also excruciating. As a society, we’re no longer taught to sit with death.
We’re no longer taught to let nature take its course, to relinquish our control. Learning to do this, to hear the clock tick, to let my family come and go as I sat by my mother’s bed and wiped her brow–
It was a finishing of something I had begun.
It was bone deep and cathartic, and gave me time to think and process.
I began to see the whole of my mother’s life.
It wasn’t only what hospice did for me or for my mom, it was what they stood for, the permission they gave us all to let go in love.
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon
www.mothering-mother.com
www.kunati.com
Showing posts with label parkinson's. Show all posts
Showing posts with label parkinson's. Show all posts
Monday, April 7, 2008
Friday, February 22, 2008
How to Approach Someone With Alzheimer's or Dementia
Approaching someone with dementia or Alzheimer's takes a little finesse. Too many folks charge right up to them and get in their "personal space," perhaps because they don't realize that person's with physical or neurological challenges still do have and need personal space.
Whether your loved one lives at home and you're their primary caregiver, or if they're in a care facility, knowing how to approach them is a crucial skill for all involved.
Sometimes they don't approach them at all.
They're uncomfortable, so they stay across the room and avoid eye contact. Some people don't even go to visit their loved ones. That's sad, because they're just scared and don't know exactly what to do.
Here area few simple steps to make this situation more comfortable for everyone:
If you have or can get a name tag, it can help. Wear your name tag since many dementia patients can still read and it reminds them who you are.
Approach a dementia or Alzheimer's patient calmly, extend your hand, but realize they might not know what to do with it. If they're in a wheelchair, bend your knees and meet them at their level. If you're much taller, try and make yourself an equal.
Don't come head on--even in nature, this is considered aggressive my most mammals.
Stand a little to their side--so they feel they have some air to breathe and an escape path if they feel threatened. Also realize that if you come up behind them or directly to their side, they might not see or hear you and you may startle them. They may react by a scream or even try to hit you if they're agitated, so make sure they know you're coming up to them, then step a little to the side so they have some breathing room and don't feel "attacked." Remember the old fight or flight reaction--some people might try to run away from you if you startle them, whereas others may try to bop you a good one!
Say your name clearly and ask them theirs. If you know their name then don't ask them--tell them their name. They shouldn't feel tested or put on the spot.
"Hi, my name is Carol, and your name is Lily. It's nice to meet you."
If they're shaking your hand and want to continue to hold it, then allow them to. Some dementia/neurological folks like touch and are quite tactile. They might touch your clothes or your hair, but realize that if it goes too far, it's because they might not be able to judge appropriateness. Simply gently take their hand from the unwanted are and either hold their hand, or let go and back up just a little without drawing attention to the unwanted behaviour. Like a little kid, people like to do things they're not supposed to.
If they don't seem to want to shake hands, respect that. Some dementia/neuro-impaired folks abhor touch, so don't take it personal.
If they lose their attention and aren't interested in you, don't take it personal.
If they aren't smiling, don't take it personal.
If you are assisting them in the restroom or dressing, also stand to the side. Our elderly folk don't have as good peripheral vision and if you stand directly to their side, they may feel more of a sense of privacy. You can also leverage yourself better with one arm holding their elbow up to their shoulder and the other across their back. Remind them you're still there, but be quiet if they need their privacy.
If they go into a stall alone, make sure they don't lock the door (unless you feel they're clear headed enough to know how to unlock it. Simply hold it closed--even if you have to make an excuse about the lock. Realize some folks like to "play" in the bathroom--everything from playing with their feces, to clogging up the toilet with excess paper, to self play, so don't let it surprise you. If you feel uncomfortable with all this, ask for someone who usually takes them to the restroom to do so. It's perfectly okay if you feel ill-prepared.
If they start telling you their life story, listen, but realize part of it or all of it might not be real. If you need to leave--try to find a place to interject, "I have to go to the kitchen (for example) and say good-bye. If you can lead them over to a group or something they can do, then do that and get them involved before you step away. Sometimes this is not possible, and they can be difficult to disengage. Treat them with respect, but realize they might not grasp the subtleties of conversation and let you leave without you being assertive.
Realize they might "lift" your rings or wallet out of your purse--out of curiosity. Some are collectors, but you might want to double check things before you leave.
If they start asking repeated questions, "Is my husband here?"
It's best to say something along the lines of, "You really loved him, didn't you?" or "What did you two like to do together?" Don't confront or argue--but do allow them to talk about that person because they probably do miss them.
After a few visits, you can decide if you should say goodbye, or if that upsets them. Don't feel bad if you need to simply slip away.
Always, always, always talk to the staff--everyone--kitchen help, bathers, nursing staff--everyone. You need them to be your friends. They need to know you know them by name. They're more likely to treat your loved one well if you treat them well. They're also less likely to do something less than appropriate if you know their name.
Thank them for all they do. No one is ever compensated enough to care for another human being. Genuine thanks is a way of showing honor.
By knowing a few simple strategies and understanding how our Alzheimer's, dementia, neuro-impaired process information, we can enjoy a calmer, more meaningful visit for everyone.
Carol D. O'Dell
Author of Mothering Mother; A Daughter's Humorous and Heartbreaking Memoiravailable on Amazon
www.mothering-mother.com.
www.Kunati.com
Whether your loved one lives at home and you're their primary caregiver, or if they're in a care facility, knowing how to approach them is a crucial skill for all involved.
Sometimes they don't approach them at all.
They're uncomfortable, so they stay across the room and avoid eye contact. Some people don't even go to visit their loved ones. That's sad, because they're just scared and don't know exactly what to do.
Here area few simple steps to make this situation more comfortable for everyone:
If you have or can get a name tag, it can help. Wear your name tag since many dementia patients can still read and it reminds them who you are.
Approach a dementia or Alzheimer's patient calmly, extend your hand, but realize they might not know what to do with it. If they're in a wheelchair, bend your knees and meet them at their level. If you're much taller, try and make yourself an equal.
Don't come head on--even in nature, this is considered aggressive my most mammals.
Stand a little to their side--so they feel they have some air to breathe and an escape path if they feel threatened. Also realize that if you come up behind them or directly to their side, they might not see or hear you and you may startle them. They may react by a scream or even try to hit you if they're agitated, so make sure they know you're coming up to them, then step a little to the side so they have some breathing room and don't feel "attacked." Remember the old fight or flight reaction--some people might try to run away from you if you startle them, whereas others may try to bop you a good one!
Say your name clearly and ask them theirs. If you know their name then don't ask them--tell them their name. They shouldn't feel tested or put on the spot.
"Hi, my name is Carol, and your name is Lily. It's nice to meet you."
If they're shaking your hand and want to continue to hold it, then allow them to. Some dementia/neurological folks like touch and are quite tactile. They might touch your clothes or your hair, but realize that if it goes too far, it's because they might not be able to judge appropriateness. Simply gently take their hand from the unwanted are and either hold their hand, or let go and back up just a little without drawing attention to the unwanted behaviour. Like a little kid, people like to do things they're not supposed to.
If they don't seem to want to shake hands, respect that. Some dementia/neuro-impaired folks abhor touch, so don't take it personal.
If they lose their attention and aren't interested in you, don't take it personal.
If they aren't smiling, don't take it personal.
If you are assisting them in the restroom or dressing, also stand to the side. Our elderly folk don't have as good peripheral vision and if you stand directly to their side, they may feel more of a sense of privacy. You can also leverage yourself better with one arm holding their elbow up to their shoulder and the other across their back. Remind them you're still there, but be quiet if they need their privacy.
If they go into a stall alone, make sure they don't lock the door (unless you feel they're clear headed enough to know how to unlock it. Simply hold it closed--even if you have to make an excuse about the lock. Realize some folks like to "play" in the bathroom--everything from playing with their feces, to clogging up the toilet with excess paper, to self play, so don't let it surprise you. If you feel uncomfortable with all this, ask for someone who usually takes them to the restroom to do so. It's perfectly okay if you feel ill-prepared.
If they start telling you their life story, listen, but realize part of it or all of it might not be real. If you need to leave--try to find a place to interject, "I have to go to the kitchen (for example) and say good-bye. If you can lead them over to a group or something they can do, then do that and get them involved before you step away. Sometimes this is not possible, and they can be difficult to disengage. Treat them with respect, but realize they might not grasp the subtleties of conversation and let you leave without you being assertive.
Realize they might "lift" your rings or wallet out of your purse--out of curiosity. Some are collectors, but you might want to double check things before you leave.
If they start asking repeated questions, "Is my husband here?"
It's best to say something along the lines of, "You really loved him, didn't you?" or "What did you two like to do together?" Don't confront or argue--but do allow them to talk about that person because they probably do miss them.
After a few visits, you can decide if you should say goodbye, or if that upsets them. Don't feel bad if you need to simply slip away.
Always, always, always talk to the staff--everyone--kitchen help, bathers, nursing staff--everyone. You need them to be your friends. They need to know you know them by name. They're more likely to treat your loved one well if you treat them well. They're also less likely to do something less than appropriate if you know their name.
Thank them for all they do. No one is ever compensated enough to care for another human being. Genuine thanks is a way of showing honor.
By knowing a few simple strategies and understanding how our Alzheimer's, dementia, neuro-impaired process information, we can enjoy a calmer, more meaningful visit for everyone.
Carol D. O'Dell
Author of Mothering Mother; A Daughter's Humorous and Heartbreaking Memoiravailable on Amazon
www.mothering-mother.com.
www.Kunati.com
Tuesday, February 19, 2008
If I Ran the Zoo: How I Would Run a Caregiver's Support Group
Remember the Dr. Suess book, If I Ran the Zoo? Well, I guess I've always wanted to be a zoo-keeper.
Lions, tigers, and support groups, oh my!
I have to admit, I didn't attend a monthly caregiver's support group while I cared for my mom. Why?
I guess you can chalk it up to my preacher's kid background, but I'm about meeting'ed out. I was a notorious school skipper in high school and I still have problems sitting through events where one person talks and everyone else has to listen, stand up, sit down, and clap on que. (Unless I'm the one doing the talking...and even then, I'm sensitive to people's time and attention spans).
For some reason, I'm either the slacker in the back of the room doodling on her notebook and making snide comments about everyone in the class--or I'm the front-row suck-up nerd hogging all the teacher's attention. One or the other--on any given day.
When I walk into a room with a banquet table and metal chairs placed around it, lit by a flourescent light and tired looking folks staring at one another--I want to go screaming out into the sunlight, find the nearest park, beach, or river and take a walk, that or go buy a triple expresso and power shop.
It's not that I don't realize that sharing your experience and working through the stresses, frustraitons, questions, and heartaches of caregiving isn't important. I know it is, but as my southern Mama always said:
"There's more than one way to skin a cat."
So, here's how I would run a support group. (dream scenario)
There would be couches, not metal chairs.
There would always be food and drink--and not just grocery store bought cookies.
There would be beautiful artwork.
There would be fresh flowers.
There would be music playing (sometimes jazz, sometimes, oldies, sometimes classical).
Stickers would be given out for doing things for yourself--making a phonecall, signing up for a class, etc. You would get to stand up, announce what you did for you, and get claps and/or hugs.
There would be show and tell--your latest photograph of your garden, a drawing, mom's broach, Dad's WWII medals, etc.
We'd share our favorite poems, books, and movie suggestons.
We'd have a gripe session and start off with cues such as:
"You wanna know what bugs me?!"
We'd throw eachother a potato to keep it going and anger would get a clap--we need to use our frustrations as energy so they won't implode on us.
We'd have guest speakers occasionally--but not all doctors and elder-care based. We'd have life coaches, a performer from the circus, a juggler who would teach us how to juggle, a policeman teaching us safety practices, a wardrobe consultant for you and your loved one...
We'd plan events--like a mother-daughter fashion show, or a WWII gathering of all the vets in the area--or a vintage car show and ride. We;d raise money for Alzheimer's or Parkinson's--or to sponsor a road trip!
We'd finish each session with either yoga or a walk or dancing. Movement is vital!
There. I might actually attend a group like this.
How 'bout you?
Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon www.mothering-mother.com
Lions, tigers, and support groups, oh my!
I have to admit, I didn't attend a monthly caregiver's support group while I cared for my mom. Why?
I guess you can chalk it up to my preacher's kid background, but I'm about meeting'ed out. I was a notorious school skipper in high school and I still have problems sitting through events where one person talks and everyone else has to listen, stand up, sit down, and clap on que. (Unless I'm the one doing the talking...and even then, I'm sensitive to people's time and attention spans).
For some reason, I'm either the slacker in the back of the room doodling on her notebook and making snide comments about everyone in the class--or I'm the front-row suck-up nerd hogging all the teacher's attention. One or the other--on any given day.
When I walk into a room with a banquet table and metal chairs placed around it, lit by a flourescent light and tired looking folks staring at one another--I want to go screaming out into the sunlight, find the nearest park, beach, or river and take a walk, that or go buy a triple expresso and power shop.
It's not that I don't realize that sharing your experience and working through the stresses, frustraitons, questions, and heartaches of caregiving isn't important. I know it is, but as my southern Mama always said:
"There's more than one way to skin a cat."
So, here's how I would run a support group. (dream scenario)
There would be couches, not metal chairs.
There would always be food and drink--and not just grocery store bought cookies.
There would be beautiful artwork.
There would be fresh flowers.
There would be music playing (sometimes jazz, sometimes, oldies, sometimes classical).
Stickers would be given out for doing things for yourself--making a phonecall, signing up for a class, etc. You would get to stand up, announce what you did for you, and get claps and/or hugs.
There would be show and tell--your latest photograph of your garden, a drawing, mom's broach, Dad's WWII medals, etc.
We'd share our favorite poems, books, and movie suggestons.
We'd have a gripe session and start off with cues such as:
"You wanna know what bugs me?!"
We'd throw eachother a potato to keep it going and anger would get a clap--we need to use our frustrations as energy so they won't implode on us.
We'd have guest speakers occasionally--but not all doctors and elder-care based. We'd have life coaches, a performer from the circus, a juggler who would teach us how to juggle, a policeman teaching us safety practices, a wardrobe consultant for you and your loved one...
We'd plan events--like a mother-daughter fashion show, or a WWII gathering of all the vets in the area--or a vintage car show and ride. We;d raise money for Alzheimer's or Parkinson's--or to sponsor a road trip!
We'd finish each session with either yoga or a walk or dancing. Movement is vital!
There. I might actually attend a group like this.
How 'bout you?
Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon www.mothering-mother.com
Thursday, February 14, 2008
The Last Weeks of Life: What's It Like?
Every passing is different, and yet, there’s something universal about those final days, hours, and moments.
Most people don’t want to talk about this, and now, most by far, do not have an intimate, up-close experience with death.
I needed to know how to do this. How to be there, how to incorporate this monumental event into my being.
This is what I wrote a few weeks before my mother passed away:
I’m on this euphoric high. It’s not real, I can tell. I’m not on any drugs, but it’s that out-of-body feeling. I’m excited, hesitant and nervous about everything. Walking around feels different, like the balls of my feet are the only parts of me touching the ground. I can’t stop thinking. I need to keep moving. If I slow down everything will fly off the earth.
What will I do? How do I start? I don’t think I can handle more changes. I’m leery of what’s next. I’m thinking about the funeral, the trip to Georgia. I see the cemetery, the gravesite, the mound of orange dirt, the chairs, and the green tent. I see me, shaking hands, a long line of people streaming out in front of me.
I’ve been in this cocoon for so long, these walls are so familiar. I leap ahead to her actual death. Me, there, next to her—will she wake up? Say something? Scream? Will she grab me? Will she just fade away, not saying anything?
During those last days, I kept one book nearby: How We Die by Dr. Nuland. It doesn’t sound like a happy book, and maybe it’s not, but when you need this information, you really need it.
This book became my practical template for what I was about to face. He writes of how we view death in our modern culture. We have to die from a disease now, not old age or because it’s our time. They used to call it “a natural death,” or he died from “complications.”
We’re into blame nowadays.
We think we have to pin everything on something, but life (and death) doesn’t cooperate. It’s complex, ambiguous, and all piled on top of each other like a plate of food from a church homecoming dinner. Forget trying to differentiate the ambrosia from the sweet potato casserole.
As my mother neared the end of her life, I was too tired to blame--nothing like three years of front-line caregiving to wear a person completely out. I read Dr. Nuland’s words about the end of Alzheimer’s. So much of it, I had already experienced. It was as though he were my fortune telling and my trusting palm laid open on the table.
I took deep breath after deep breath wondering how much longer. When someone’s 92, no long eating, barely swallowing, and even if you resuscitate them, what would you bring them back to? She’d still have Alzheimer’s; her body would still be wracked with the end stages of Parkinson’s. No feeding tube or shocking of her heart would change those facts.
Mother’s actual death took about three weeks.
Three of the longest weeks of my life.
Mother was in a coma and couldn’t be aroused without great effort, and then, only to look at me blurry with a backdrop of panic.
After saying my good-byes and making sure that each family member had that opportunity as well, and after I called the Chaplin, and say the Psalms, I stopped trying to rouse her.
I had to do all those things—my checklist. I made as many funeral arrangements as possible, and then it was time to be quiet. Hospice nurses came a few times to take her vitals, but I sent the bathers away.
It was just my mother and me most days.
I let my family go on with their lives.
Ironically, it rained for two straight weeks.
Good ole' Florida rain. Buckets.
I chose against a feeding tube.
This is a family and personal choice, and I don’t think I could have stuck to my decision if hospice had not assured me that this is humane, and that allowing the body to naturally shut down is a valid choice.
I watched every twitch, was she in pain? Not that I could tell.
I bathed her face and hands, swabbed the inside of her mouth with Vaseline. I kept her room quiet, cleaned and decluttered. We were in death-mode, and as unappealing as that sounds, it felt like the right thing to do.
I felt this incredible barometric pressure. No relief. I’d never paced so much in my life. Was I making the right decisions? Should I call 911 and scream, “Save her!” Or do I sit here, quiet, calm, and allow this to happen?
I chose to allow and the pressure lifted.
I found my own sense of closure.
I needed this time.
I needed this low pressure, this finishing of duties, this still and quiet room.
This was the end of a life, and that is profound and sacred.
I wrote hourly.
Stroked her hair, sat beside her, and waited.
~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon and in most bookstores
Kunati Publishing
Most people don’t want to talk about this, and now, most by far, do not have an intimate, up-close experience with death.
I needed to know how to do this. How to be there, how to incorporate this monumental event into my being.
This is what I wrote a few weeks before my mother passed away:
I’m on this euphoric high. It’s not real, I can tell. I’m not on any drugs, but it’s that out-of-body feeling. I’m excited, hesitant and nervous about everything. Walking around feels different, like the balls of my feet are the only parts of me touching the ground. I can’t stop thinking. I need to keep moving. If I slow down everything will fly off the earth.
What will I do? How do I start? I don’t think I can handle more changes. I’m leery of what’s next. I’m thinking about the funeral, the trip to Georgia. I see the cemetery, the gravesite, the mound of orange dirt, the chairs, and the green tent. I see me, shaking hands, a long line of people streaming out in front of me.
I’ve been in this cocoon for so long, these walls are so familiar. I leap ahead to her actual death. Me, there, next to her—will she wake up? Say something? Scream? Will she grab me? Will she just fade away, not saying anything?
During those last days, I kept one book nearby: How We Die by Dr. Nuland. It doesn’t sound like a happy book, and maybe it’s not, but when you need this information, you really need it.
This book became my practical template for what I was about to face. He writes of how we view death in our modern culture. We have to die from a disease now, not old age or because it’s our time. They used to call it “a natural death,” or he died from “complications.”
We’re into blame nowadays.
We think we have to pin everything on something, but life (and death) doesn’t cooperate. It’s complex, ambiguous, and all piled on top of each other like a plate of food from a church homecoming dinner. Forget trying to differentiate the ambrosia from the sweet potato casserole.
As my mother neared the end of her life, I was too tired to blame--nothing like three years of front-line caregiving to wear a person completely out. I read Dr. Nuland’s words about the end of Alzheimer’s. So much of it, I had already experienced. It was as though he were my fortune telling and my trusting palm laid open on the table.
I took deep breath after deep breath wondering how much longer. When someone’s 92, no long eating, barely swallowing, and even if you resuscitate them, what would you bring them back to? She’d still have Alzheimer’s; her body would still be wracked with the end stages of Parkinson’s. No feeding tube or shocking of her heart would change those facts.
Mother’s actual death took about three weeks.
Three of the longest weeks of my life.
Mother was in a coma and couldn’t be aroused without great effort, and then, only to look at me blurry with a backdrop of panic.
After saying my good-byes and making sure that each family member had that opportunity as well, and after I called the Chaplin, and say the Psalms, I stopped trying to rouse her.
I had to do all those things—my checklist. I made as many funeral arrangements as possible, and then it was time to be quiet. Hospice nurses came a few times to take her vitals, but I sent the bathers away.
It was just my mother and me most days.
I let my family go on with their lives.
Ironically, it rained for two straight weeks.
Good ole' Florida rain. Buckets.
I chose against a feeding tube.
This is a family and personal choice, and I don’t think I could have stuck to my decision if hospice had not assured me that this is humane, and that allowing the body to naturally shut down is a valid choice.
I watched every twitch, was she in pain? Not that I could tell.
I bathed her face and hands, swabbed the inside of her mouth with Vaseline. I kept her room quiet, cleaned and decluttered. We were in death-mode, and as unappealing as that sounds, it felt like the right thing to do.
I felt this incredible barometric pressure. No relief. I’d never paced so much in my life. Was I making the right decisions? Should I call 911 and scream, “Save her!” Or do I sit here, quiet, calm, and allow this to happen?
I chose to allow and the pressure lifted.
I found my own sense of closure.
I needed this time.
I needed this low pressure, this finishing of duties, this still and quiet room.
This was the end of a life, and that is profound and sacred.
I wrote hourly.
Stroked her hair, sat beside her, and waited.
~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon and in most bookstores
Kunati Publishing
Monday, February 11, 2008
What's It Like To Be With Someone as They Die?
I wanted to know what it was going to be like.
I knew my mother was most likely going to die at home--in my home.
I had only experienced death in a hospital setting. Different animal.
Living with dying and death is something I had to learn how to do.
In that order. Dying is sometimes a slow process.
Dying is aching, doubting, hoping.
Death is final.
I wrote about my mother’s death in Mothering Mother.
I wrote about it moment-by-moment. I wrote it that way–sitting beside her, journal in hand. A word, or thought, or phrase that represented hours, days, and weeks as my mother took her “good old time.”
She made sure I didn’t miss a thing.
And I didn’t. I glued myself there.
I was scared. Didn’t know if I could do it.
But as we got there–almost three years of her living (and dying) with me as Parkinson’s and Alzheimer’s took its toll, I found that I was ready.
I had to be there. Follow through. Finish what I promised.
I wrote about it because I could find so little on it.
So little about something we all must do.
Sorry to be so morbid here, but I think it’s important.
Our society is so youth oriented that we don’t look at the full picture–birth to death.
Death was so much a part of people’s lives in the dark ages that they came up with a Latin phrase they used to write over their doors.
Momento Mori. It means, “We all must die.”
It’s known in literature to denote “symbols” of death–black, the skull, the sickle, etc. It dates back to the Roman times, to a general who had a slave walk behind him as he paraded down the streets celebrating his latest victory. The slave would call out, “Momento mori!” Meaning, look behind you, you are but a mortal.
We tend to remember the Carpe Diem version,“Seize the Day!”
It’s the end of “Eat, Drink and Be Merry,” we forget,“for tomorrow ye may die.”
Heavy stuff, I know. But if you’re about to face this, as I had to face this, you might be ready for a frank discussion
That’s why I say we look at it in February and leave the frivolity for May.
We have to incorporate living and dying into our lives in a healthy way. To embrace, and let go, and embrace again.
Readers of Mothering Mother know about my push and pull, mother-daughter relationship. But there was so much that occured before then. Relationships are difficult to translate to the page. So much history, so many tangles and layers.
It took a long time to get to that place–the love, forgiveness, acceptance place. And then, when I finally stopped trying to “fix” us, we were well into the dying process.
We tend to hero-ize or villanize people in our lives.
Good and evil, wicked witch, white knight.
Especially when we’re young–everyone falls into one category or another. The ambiguities and juxtapositions of life come over time.
Daddy was my hero.
I needed one, and he did a good job filling it.
But that made his passing deeper, and bitter-sweet.
Grieving is not only about the five stages of grief. (Kubler Ross–denial anger, barganing, depreesion and acceptance).
We think we can check them off like a grocery list.
No, it’s a circle. We keep going round and round, double back, get stuck, leap frog, only to find ourselves back at square one. But each time we rail against, drown in it, we’ve made progress. Minute progress.
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
Kunati Publishing
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
http://www.kunati.com/
I knew my mother was most likely going to die at home--in my home.
I had only experienced death in a hospital setting. Different animal.
Living with dying and death is something I had to learn how to do.
In that order. Dying is sometimes a slow process.
Dying is aching, doubting, hoping.
Death is final.
I wrote about my mother’s death in Mothering Mother.
I wrote about it moment-by-moment. I wrote it that way–sitting beside her, journal in hand. A word, or thought, or phrase that represented hours, days, and weeks as my mother took her “good old time.”
She made sure I didn’t miss a thing.
And I didn’t. I glued myself there.
I was scared. Didn’t know if I could do it.
But as we got there–almost three years of her living (and dying) with me as Parkinson’s and Alzheimer’s took its toll, I found that I was ready.
I had to be there. Follow through. Finish what I promised.
I wrote about it because I could find so little on it.
So little about something we all must do.
Sorry to be so morbid here, but I think it’s important.
Our society is so youth oriented that we don’t look at the full picture–birth to death.
Death was so much a part of people’s lives in the dark ages that they came up with a Latin phrase they used to write over their doors.
Momento Mori. It means, “We all must die.”
It’s known in literature to denote “symbols” of death–black, the skull, the sickle, etc. It dates back to the Roman times, to a general who had a slave walk behind him as he paraded down the streets celebrating his latest victory. The slave would call out, “Momento mori!” Meaning, look behind you, you are but a mortal.
We tend to remember the Carpe Diem version,“Seize the Day!”
It’s the end of “Eat, Drink and Be Merry,” we forget,“for tomorrow ye may die.”
Heavy stuff, I know. But if you’re about to face this, as I had to face this, you might be ready for a frank discussion
That’s why I say we look at it in February and leave the frivolity for May.
We have to incorporate living and dying into our lives in a healthy way. To embrace, and let go, and embrace again.
Readers of Mothering Mother know about my push and pull, mother-daughter relationship. But there was so much that occured before then. Relationships are difficult to translate to the page. So much history, so many tangles and layers.
It took a long time to get to that place–the love, forgiveness, acceptance place. And then, when I finally stopped trying to “fix” us, we were well into the dying process.
We tend to hero-ize or villanize people in our lives.
Good and evil, wicked witch, white knight.
Especially when we’re young–everyone falls into one category or another. The ambiguities and juxtapositions of life come over time.
Daddy was my hero.
I needed one, and he did a good job filling it.
But that made his passing deeper, and bitter-sweet.
Grieving is not only about the five stages of grief. (Kubler Ross–denial anger, barganing, depreesion and acceptance).
We think we can check them off like a grocery list.
No, it’s a circle. We keep going round and round, double back, get stuck, leap frog, only to find ourselves back at square one. But each time we rail against, drown in it, we’ve made progress. Minute progress.
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
Kunati Publishing
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
http://www.kunati.com/
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