![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gerisullivanMy mother died 1.5 hours ago. This is my first public post on the subject; those who have been following the situation in some or all of my locked posts over the last couple of weeks will see some familiar ground covered below. For those hearing of her recent illness, hospitalization, diagnosis, and transfer to hospice care for the first time, my apologies. I intended to post an overview of the situation several days ago, but it remained only an intention until now.
In April of 1989,![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
elisem said something I've quoted hundreds of times since: "The problem with grief is that when it knocks, you're always home."
Indeed.
Mom went into the hospital in Lansing, Michigan on Monday, January 23rd with an extremely sore foot and urosepsis. My sister kept me updated by phone and email the first week. Sue also lives in Lansing. She works in the lab of the hospital my mother was in, which eased things considerably. The urosepsis -- a UTI gone septic -- had happened before, but there were some uncharacteristic personality changes this time around. As I wrote back on January 26th, when I went down to New York for the most excellent Whisperado CD release party, I packed the car so that if I needed to head to Michigan, I could do so directly from New York without first returning to Toad Woods.
The medical roller coaster ride took one loop de loop in the week that followed. Mom was soon on the mend from that, but after a couple of nights, it became obvious that recovery was going to take a bit more time than we hoped. I reached the point where I needed to be there. Sue had run lead for a week; I wanted to provide what support I could in person rather than from 700+ miles away.
When I left Toad Woods on Monday, January 30, to drive west, the primary question was whether my mother would still be in the hospital when I arrived, or whether she would have been moved that day to a nursing home for rehab. We hoped that the rehab would be enough to enable her to return to her apartment instead of remaining in the nursing home on long-term care, but we knew it would be some time before anyone would be able to accurately assess that. Instead of Plan A, the medical roller coaster went into full speed ahead mode and remained there for the next 10 days, complete with twists, turns, terrifying drops, and countless loop de loops until we moved Mom to Hospice House of Mid-Michigan this past Wednesday afternoon. The last 4 days had their final bumps and dips, but we were clearly past the chaos that was the ride until then.
Mom was diagnosed as terminal on Wednesday, February 1st. Friday's planned move to the nursing home I selected of the three I visited since arriving Tuesday night was delayed when infection popped back up. This time, tests showed she'd caught C. Diff (Clostridium Difficle) and she spent the last 11 days of her life in contact isolation. The long-sleeved gown I had to wear while in her room weren't bad, but she noticed and didn't like the loss of skin-to-skin contact that accompanied the requirement that everyone coming into her room had to wear gloves. Sue and I didn't like the loss of skin contact, either. Touch is *so* important. Touching through gloves was better than no touch at all, but it was still agonizingly hard.
It was all hard, of course. Fortunately, everyone we dealt with accepted the Living Will Mom wrote 12+ years ago in Minnesota as valid, and the health care proxy and alternate she identified met Michigan's Durable Power of Attorney for Healthcare requirements. (Michigan doesn't have a living will statute, and it's up to the health care provider to decide whether and how to honor any that are presented to them.) My sister and I were very much on the same page most of the time as we navigated our way through all the treatment questions and decisions. Those times when we were bounced into different cars on the roller coaster, we worked hard to listen to each other and to get back to a place where we could make joint decisions.
Every person is unique. Many if not all of us want our uniqueness to be special, to be important in some way. I took perhaps too much pride in Mom after the doctor told Sue that he'd never before seen anyone with that much blockage in so many arteries who was still alive. Hey, *my* Mom showed the doctor something he'd not seen before! She helped him learn something new about the human body and its capacity to continue living way out in the margins of existence! Yay, Mom.
Except for what it did to her in the process, of course. She was throwing clots -- the January 31st MRI showed at least 6 small new ones in various areas of her brain in addition to the stroke damage from a decade ago. I witnessed what I am sure was her throwing a couple more clots this past Thursday night and Friday morning. Everything was impaired, but until the last 48 hours or so, she was still able to do a truly surprising amount given the clot damage combined with her overall condition.
It took us several days-that-seemed-like-months to get to the "comfortable" part of "comfort care" yet, and pain control was equally tricky. Given that, I'm downright grateful for the short term memory deficits and cognitive impairments that left her reporting at any given moment that she was in no pain, and that she hadn't been in pain a minute before when we know all too well that she had been.
Sue and I did and are continuing to do a good job of supporting each other. My really quite phenomenal support network is doing its job and more in terms of keeping me together as the coaster continued to speed along its live-churning tracks. On Saturday, I took the heart-wrenching steps away from my mother's bedside, away from Hospice House, and to the Lansing airport where I started my journey to Boston. Yes, I was racing a blizzard into town. Knowing that it was coming was one of the things that enabled me to leave when I did. I knew that if I stayed, rebooking the miles-ticket flight to a later time, the next day, or the day after would be only a little more likely than my winning the $88 million lottery drawing. I'd already stayed 2-3 days longer than my outside edge for the return drive home. And...and...and.... Lots of family history, lots of backstory on the dynamics, lots of everything.
debgeisler and MikeWLHB picked me up at Logan Airport and have kept me cossetted and well-fed ever since. Apple Cinnamon Sweet Rolls...yum. I kept in touch by phone, talking with the nurses taking care of Mom, with my sister, and with my sister-in-law and niece. Leslie and Sara arrived Saturday afternoon, which meant that Mom wasn't alone while Sue was at work. It all worked out. Saturday evening, several hours after Leslie and Sara arrived, Mom responded to Sara's presence and both Sara and Leslie were able to talk with her very briefly. Then it was back to her journey through the final days and hours before her death.
Early Sunday evening, Mary Pat, the day shift nurse, called Sue at home, telling her she didn't need to drop everything and rush right over, but that to time her return for the night "sooner rather than later." Leslie and Sara had planned to go down to my Dad's in Battle Creek, but they stayed with Susie by Mom's side through the final few hours. Angie, the nurse I'd spent so much time with Thursday and Friday nights was in the room when Mom took her last breath. Sue called me 5 minutes later, after Angie had listened with her stethoscope for a few minutes and confirmed that yes, it was over.
I'd previously heard only good things about hospice services from the family members and other loved ones who have had cause to use them. That and the tour still didn't prepare me for just how wonderful Hospice House was once Mom was there. There's a lot more to that experience, there's a lot more to the entire story, and there's a lot more still to come.
I return to Michigan on February 22nd to help Sue clear out Mom's apartment and/or do whatever else needs doing at that point. And to retrieve my car, which I left in Lansing. Later today or tomorrow Deb will drive me over to Toad Woods to pick up the last of the supplies for "Space Cowboys on Hawaiian Holiday," the event I'm running at Boskone this coming Saturday night. I'm expecting more than a little shoveling to get into the house -- Hartford got over 20" of snow, and Toad Woods is just a little bit north and east of there. Hmmm...I should take the camera along. Something about carrying 8 hula hoops through 18+ inches of snow holds a perverse appeal, one that needs to be documented. Then it's back to Deb and Mike's, on to Boskone, and back to Michigan. Thank goodness for the laptop that enables me to have my work with me pretty much wherever I go. It's likely to be slow-going, as I was reminded Sunday evening while working on a newsletter layout. But it will also help provided grounding and focus as I move through these days.
Mom's being cremated, per her wishes. She wrote her own obituary sometime back and left it where we'd find it, which we did the night we were packing things for her expected move to a nursing home the following day. That was after the terminal diagnosis, but before the C. Diff infection and before it was clear just how near the end most likely was. I don't have a copy yet. When I do, I'll probably post it here.
I had a complicated, difficult relationship with my mother. For the past several decades, my wish was that she would live a very happy life in India before going off planet to a sector I never wanted to visit. Instead, she moved to Minneapolis for the last years of her working life, and I was the on-site kid running point through her first couple of strokes and diabetes diagnosis.galacticvoyeur can tell you just how much Mom still got to me then, and how good it was for me after Mom moved back to Michigan at the beginning of 1998. My sister has been running point ever since.
For all of the difficulties, both Sue and I were happy to be at her side, to be there for her and with her as her life was ending. For me, the whole thing has been an utterly intense, valuable learning experience, both mentally and emotionally. And, as I said earlier in this post (at least, I think I did), the experience is far from over yet. The grief of saying goodbye while she was still alive is different than the grief and reality now. It's all intense, it's all big, and I don't yet know what going through all that's still to come will be like. I only know that I am blessed with friends and loved ones who are here for me, all in their own ways, as I am there for them in mine. And, yes, I've said it all to often to others: I know to go as gently as possible through the minutes, hours, days, and weeks to come. And then some.
Even though the LJ time stamp marks when I started this message rather than when I posted it, just over 4 hours have now passed since Mom died. I made it through the first 1.5 hours by calling Tom Whitmore WINOLJ, and who I hadn't managed to call or otherwise update since this whole thing started. This LJ post and a cup of tea saw me through the next 2.5 hours. And now...now I'll find out what comes next.
In April of 1989,
elisem said something I've quoted hundreds of times since: "The problem with grief is that when it knocks, you're always home."Indeed.
Mom went into the hospital in Lansing, Michigan on Monday, January 23rd with an extremely sore foot and urosepsis. My sister kept me updated by phone and email the first week. Sue also lives in Lansing. She works in the lab of the hospital my mother was in, which eased things considerably. The urosepsis -- a UTI gone septic -- had happened before, but there were some uncharacteristic personality changes this time around. As I wrote back on January 26th, when I went down to New York for the most excellent Whisperado CD release party, I packed the car so that if I needed to head to Michigan, I could do so directly from New York without first returning to Toad Woods.
The medical roller coaster ride took one loop de loop in the week that followed. Mom was soon on the mend from that, but after a couple of nights, it became obvious that recovery was going to take a bit more time than we hoped. I reached the point where I needed to be there. Sue had run lead for a week; I wanted to provide what support I could in person rather than from 700+ miles away.
When I left Toad Woods on Monday, January 30, to drive west, the primary question was whether my mother would still be in the hospital when I arrived, or whether she would have been moved that day to a nursing home for rehab. We hoped that the rehab would be enough to enable her to return to her apartment instead of remaining in the nursing home on long-term care, but we knew it would be some time before anyone would be able to accurately assess that. Instead of Plan A, the medical roller coaster went into full speed ahead mode and remained there for the next 10 days, complete with twists, turns, terrifying drops, and countless loop de loops until we moved Mom to Hospice House of Mid-Michigan this past Wednesday afternoon. The last 4 days had their final bumps and dips, but we were clearly past the chaos that was the ride until then.
Mom was diagnosed as terminal on Wednesday, February 1st. Friday's planned move to the nursing home I selected of the three I visited since arriving Tuesday night was delayed when infection popped back up. This time, tests showed she'd caught C. Diff (Clostridium Difficle) and she spent the last 11 days of her life in contact isolation. The long-sleeved gown I had to wear while in her room weren't bad, but she noticed and didn't like the loss of skin-to-skin contact that accompanied the requirement that everyone coming into her room had to wear gloves. Sue and I didn't like the loss of skin contact, either. Touch is *so* important. Touching through gloves was better than no touch at all, but it was still agonizingly hard.
It was all hard, of course. Fortunately, everyone we dealt with accepted the Living Will Mom wrote 12+ years ago in Minnesota as valid, and the health care proxy and alternate she identified met Michigan's Durable Power of Attorney for Healthcare requirements. (Michigan doesn't have a living will statute, and it's up to the health care provider to decide whether and how to honor any that are presented to them.) My sister and I were very much on the same page most of the time as we navigated our way through all the treatment questions and decisions. Those times when we were bounced into different cars on the roller coaster, we worked hard to listen to each other and to get back to a place where we could make joint decisions.
Every person is unique. Many if not all of us want our uniqueness to be special, to be important in some way. I took perhaps too much pride in Mom after the doctor told Sue that he'd never before seen anyone with that much blockage in so many arteries who was still alive. Hey, *my* Mom showed the doctor something he'd not seen before! She helped him learn something new about the human body and its capacity to continue living way out in the margins of existence! Yay, Mom.
Except for what it did to her in the process, of course. She was throwing clots -- the January 31st MRI showed at least 6 small new ones in various areas of her brain in addition to the stroke damage from a decade ago. I witnessed what I am sure was her throwing a couple more clots this past Thursday night and Friday morning. Everything was impaired, but until the last 48 hours or so, she was still able to do a truly surprising amount given the clot damage combined with her overall condition.
It took us several days-that-seemed-like-months to get to the "comfortable" part of "comfort care" yet, and pain control was equally tricky. Given that, I'm downright grateful for the short term memory deficits and cognitive impairments that left her reporting at any given moment that she was in no pain, and that she hadn't been in pain a minute before when we know all too well that she had been.
Sue and I did and are continuing to do a good job of supporting each other. My really quite phenomenal support network is doing its job and more in terms of keeping me together as the coaster continued to speed along its live-churning tracks. On Saturday, I took the heart-wrenching steps away from my mother's bedside, away from Hospice House, and to the Lansing airport where I started my journey to Boston. Yes, I was racing a blizzard into town. Knowing that it was coming was one of the things that enabled me to leave when I did. I knew that if I stayed, rebooking the miles-ticket flight to a later time, the next day, or the day after would be only a little more likely than my winning the $88 million lottery drawing. I'd already stayed 2-3 days longer than my outside edge for the return drive home. And...and...and.... Lots of family history, lots of backstory on the dynamics, lots of everything.
debgeisler and MikeWLHB picked me up at Logan Airport and have kept me cossetted and well-fed ever since. Apple Cinnamon Sweet Rolls...yum. I kept in touch by phone, talking with the nurses taking care of Mom, with my sister, and with my sister-in-law and niece. Leslie and Sara arrived Saturday afternoon, which meant that Mom wasn't alone while Sue was at work. It all worked out. Saturday evening, several hours after Leslie and Sara arrived, Mom responded to Sara's presence and both Sara and Leslie were able to talk with her very briefly. Then it was back to her journey through the final days and hours before her death. Early Sunday evening, Mary Pat, the day shift nurse, called Sue at home, telling her she didn't need to drop everything and rush right over, but that to time her return for the night "sooner rather than later." Leslie and Sara had planned to go down to my Dad's in Battle Creek, but they stayed with Susie by Mom's side through the final few hours. Angie, the nurse I'd spent so much time with Thursday and Friday nights was in the room when Mom took her last breath. Sue called me 5 minutes later, after Angie had listened with her stethoscope for a few minutes and confirmed that yes, it was over.
I'd previously heard only good things about hospice services from the family members and other loved ones who have had cause to use them. That and the tour still didn't prepare me for just how wonderful Hospice House was once Mom was there. There's a lot more to that experience, there's a lot more to the entire story, and there's a lot more still to come.
I return to Michigan on February 22nd to help Sue clear out Mom's apartment and/or do whatever else needs doing at that point. And to retrieve my car, which I left in Lansing. Later today or tomorrow Deb will drive me over to Toad Woods to pick up the last of the supplies for "Space Cowboys on Hawaiian Holiday," the event I'm running at Boskone this coming Saturday night. I'm expecting more than a little shoveling to get into the house -- Hartford got over 20" of snow, and Toad Woods is just a little bit north and east of there. Hmmm...I should take the camera along. Something about carrying 8 hula hoops through 18+ inches of snow holds a perverse appeal, one that needs to be documented. Then it's back to Deb and Mike's, on to Boskone, and back to Michigan. Thank goodness for the laptop that enables me to have my work with me pretty much wherever I go. It's likely to be slow-going, as I was reminded Sunday evening while working on a newsletter layout. But it will also help provided grounding and focus as I move through these days.
Mom's being cremated, per her wishes. She wrote her own obituary sometime back and left it where we'd find it, which we did the night we were packing things for her expected move to a nursing home the following day. That was after the terminal diagnosis, but before the C. Diff infection and before it was clear just how near the end most likely was. I don't have a copy yet. When I do, I'll probably post it here.
I had a complicated, difficult relationship with my mother. For the past several decades, my wish was that she would live a very happy life in India before going off planet to a sector I never wanted to visit. Instead, she moved to Minneapolis for the last years of her working life, and I was the on-site kid running point through her first couple of strokes and diabetes diagnosis.
galacticvoyeur can tell you just how much Mom still got to me then, and how good it was for me after Mom moved back to Michigan at the beginning of 1998. My sister has been running point ever since. For all of the difficulties, both Sue and I were happy to be at her side, to be there for her and with her as her life was ending. For me, the whole thing has been an utterly intense, valuable learning experience, both mentally and emotionally. And, as I said earlier in this post (at least, I think I did), the experience is far from over yet. The grief of saying goodbye while she was still alive is different than the grief and reality now. It's all intense, it's all big, and I don't yet know what going through all that's still to come will be like. I only know that I am blessed with friends and loved ones who are here for me, all in their own ways, as I am there for them in mine. And, yes, I've said it all to often to others: I know to go as gently as possible through the minutes, hours, days, and weeks to come. And then some.
Even though the LJ time stamp marks when I started this message rather than when I posted it, just over 4 hours have now passed since Mom died. I made it through the first 1.5 hours by calling Tom Whitmore WINOLJ, and who I hadn't managed to call or otherwise update since this whole thing started. This LJ post and a cup of tea saw me through the next 2.5 hours. And now...now I'll find out what comes next.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2006-02-13 12:41 pm (UTC)