Monday, May 26
May. 26th, 2025 09:52 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gottawonderToday I am grateful for:
Getting back to our place in the early morning.
Getting some sleep, though it's tough after such a long drive. I often lay in bed for a while feeling like I'm still moving in the car.
Seeing all my sweet animals today, and hopefully seeing River tomorrow. I miss them so much whenever I'm away.
Seeing my Sweetie again when he got home from work.
My friend "I" came to pick up her bunny (my Sweetie also looked after him this week, since "I" was visiting a friend).
Feeling weird about being home, and looking around at everything that needs to be done. It feels like the world should just stand still for a while.
Yet, the grass grows, and chores need to be done, and things need to be washed, and other things put away. Entropy stops for no one.
So, I helped "I" take all of Bun's accessories out to her car, then swept and washed the floor where we had Bun's cage. We had a visit too.
Then we unpacked the car, since my husband will want to drive it to work tomorrow. I put most of it away, and some clothes needed to be washed so I put them in the washer.
Then we ate, and after my Sweetie went to bed (very early, about 7 pm, since his work schedule is nuts right now) and I went outside to mow what I could before it stormed.
Then when the lightening began, I went back inside and had a bath.
I decided to write about my week, which might take a while.
I left last week to be with Mom, and got there on Saturday morning. It was tough to drive that distance and stay focused, when I didn't know if Mom would be alive or not when I got there.
She was in the hospital, so I went straight there. At first, I was told by a security person that the hospital was "closed"; I don't think he spoke much English and it was hard for him to understand what "palliative care" was. If I had just walked past him confidently, I would have been fine, but I thought his job was to screen people or something. No idea why he didn't refer me to the nurse's desk.
I ended up calling my sister P, who was with Mom, and figured out where Mom was.
I tried to steel myself for seeing Mom lying in bed, and it was pretty shocking. She was more or less sedated to the point of being unconscious, she didn't have her dentures in, and she really barely looked like herself.
Some of my family were there with her, and through the week they would be coming and going often.
I wasn't sure if I could deal with interacting with Mom in this situation. I've wondered what this time would be like; if I could manage to be present.
I was with our neighbor a few years ago, when he was dying. The first visit he was awake and lucid, a few days later he was sedated the way Mom was, and near death.
Holding Mom's hand and touching her was very comforting for me, and all of us took turns with her. I'm glad she was surrounded by people who love her.
I decided to stay with her until she passed, not just visit her and leave. There was a room across the hall from Mom's room for family that made it possible to stay there at the hospital. It had a cot and a couch, a microwave and a coffee maker. People kept bringing food, and I left sometimes to eat, though I always worried that she would die while I was away.
My Sister P stayed the whole time too, and for a few days her daughter stayed, and one night my brother T stayed.
Mom was already in this state for a few days before I arrived, and I was at the hospital for five and a half days. She lived for a week without any fluids.
I guess this is how we "let" people die now, is to make them as comfortable as possible, sedate them heavily so they don't feel anything, and stop giving them fluids.
It was a tough thing to accept, that she had to be sedated like that, but from all accounts it was absolutely necessary.
How all of this came to be, is that Mom's hip surgery went well, but got infected. After they did the second surgery to clean the incision, she was in a great deal of pain, and was agitated and pulling out her IV antibiotics, and crying out. She was so miserable, so tired, and hurting herself.
At first she was eating and drinking fine, but she had started refusing to swallow her pills. Her very necessary pills. Then, she refused to eat or drink, then it became apparent that this was the onset of what is usually the end stage of dementia, is that she just did not remember HOW to swallow. The food just sat in her mouth, and when she tried to swallow, it got into her lungs.
From what I understand, this is how many people with dementia finally die. The "not eating" is not something that she would have recovered from, it's an actual stage of dementia, and it can develop very quickly. In her case, about two weeks of sometimes refusing to eat, to completely being unable to swallow anything.
Generally this is when, in modern times, they just stop forcing them to try, and allow things to follow their course.
It was pretty grim, and it took a long time, but it did really give us all the time to absorb what was happening, and mercifully she was drugged enough that she was no longer in pain and crying out and fighting everything.
It was odd how for that week, the hospital kind of felt like Mom's home? Everywhere that she has been, has felt like that. The farm, her house in town, her room at the care home, and then this place. Our family gathered there, sitting around her bed, talking and visiting, laughing too.
We would get lulled into sort of feeling that this was sort of a "new normal", that she was stable and comfortable. Like she was just sleeping. It would go on like that for hours at a time, then she would have a stretch of different breathing, and we'd all think that was it, wake everybody up, all go in with her, and then it would even out again.
We would come and go, go get food, go sleep in the other room, (others went home for the night, to return the next day, others only came for one or two visits to say goodbye).
Sister N did say goodbye, but apparently didn't really want to do that, but came because her daughter insisted.
Trainwreck chose not to come at all, and none of her adult sons came.
Some of the other grand children chose not to come, but all of the children did, and many of the grand children brought their children.
During this week, our family also got together like we have for about forty years now, for our "May Long Weekend". It was okay, but subdued. None of us felt like we should cancel it, as it was something we knew Mom would want us to do together. It's important to remember happiness and life.
I went for the afternoon, then went back to the hospital.
The staff remarked that we were a very "present" family. She was not alone at all that week. I think there was always someone beside her, except for maybe a few minutes here and there. Someone holding her hand, adjusting her blankets, smoothing her hair.
My sister P is a nurse's aide, and she did a lot of shifting Mom in her bed to keep her from having pressure points, doing mouth care, putting Voltaren on her sore knees (there were moments when even through the sedation you could tell she was uncomfortable). She was there for the whole time Mom was there, sleeping at the hosptital, showering, and leaving for short periods to go get food and have a break.
In many ways it was not an unpleasant time. The family was very close to each other, and there was something very intimate about this shared experience, and to be present with Mom like this.
When she took her last breath, it was pretty early in the morning. I had been sleeping and sister P woke me to say that her breathing was very different. I sat with Mom for about four hours, with sister P and our sister in law S. I kissed her forehead and held her hand as she slipped away.
Our sister L arrived only a few minutes later, and we cried together. We had all been crying a lot already all week, but we cried again.
I even stayed with Mom after, not feeling strange at all being with her body, still warm. Sister P and I stayed while the nurses washed her, and I was surprised at how gentle they were, as if she were still alive.
There are certain things they do before the body is picked up by the funeral home. She was washed carefully, they removed her gown, there is a tag. Then they wrapped her carefully in the bed sheets. Seeing her that way helped me process the finality, since there was otherwise such a gradual transition into death that it didn't quite seem final.
In some ways, as painful as all of this was, it was also kind of beautiful to be with her to the end. To make sure she was cared for, to see what happened to her. To spend this week with her so intensely was a strange experience. To have an experience that is likely very rare these days, of having the family surround her for days, keeping vigil. Something that felt ancient.
I didn't even realize you COULD be with a person for days and days in the hospital, staying with them until the end.
It has given me a great deal of insight now, into what others have experienced with their loved ones.
I then went back to the farm, to stay with my brother and his wife. We weren't sitting around crying, for the most part we were kind of carrying on with things.
I got to have my big walk around the farm. It's quite a hike. I love the farm very much, and I don't know if it will be in our family much longer, so I try to drink it in when I can.
Then we had our Aunt's funeral on Saturday. Trainwreck missed that too, though she was planning to come. She thought it was Sunday.
It was a good funeral, I was happy with what I chose to wear (a fairly simple pair of dress pants and a nice blouse). It was a warm, sunny day which was pretty much perfect, as it had been cold and rainy before that.
There was a tea at the local drop in center afterwards, for mingling. Most of the people who attended the funeral were there.
I was doing okay considering that Mom had just died, and here we were at my Aunt's funeral. I didn't want to cry.
I did fall apart a bit when I went to hug my Uncle M (Mom's brother, it was his wife who passed). He too has dementia, though he was well aware that his wife, and now his big sister who raised him after their mother died, had both passed. He was beside himself, wondering what he would do without them.
So, after the tea, some of us got together at Sister N's place for a good visit.
That's not everything, there was so much visiting, so much talking. I spent time outside on the farm, seeing the animals, walking, talking on the deck.
Then I made the long drive home, trying not to cry the whole time.
It was a rough week, but in many ways also very beautiful. People do die, and I would rather experience something like this than to stay away from it, and not feel it in it's fullness.
Getting back to our place in the early morning.
Getting some sleep, though it's tough after such a long drive. I often lay in bed for a while feeling like I'm still moving in the car.
Seeing all my sweet animals today, and hopefully seeing River tomorrow. I miss them so much whenever I'm away.
Seeing my Sweetie again when he got home from work.
My friend "I" came to pick up her bunny (my Sweetie also looked after him this week, since "I" was visiting a friend).
Feeling weird about being home, and looking around at everything that needs to be done. It feels like the world should just stand still for a while.
Yet, the grass grows, and chores need to be done, and things need to be washed, and other things put away. Entropy stops for no one.
So, I helped "I" take all of Bun's accessories out to her car, then swept and washed the floor where we had Bun's cage. We had a visit too.
Then we unpacked the car, since my husband will want to drive it to work tomorrow. I put most of it away, and some clothes needed to be washed so I put them in the washer.
Then we ate, and after my Sweetie went to bed (very early, about 7 pm, since his work schedule is nuts right now) and I went outside to mow what I could before it stormed.
Then when the lightening began, I went back inside and had a bath.
I decided to write about my week, which might take a while.
I left last week to be with Mom, and got there on Saturday morning. It was tough to drive that distance and stay focused, when I didn't know if Mom would be alive or not when I got there.
She was in the hospital, so I went straight there. At first, I was told by a security person that the hospital was "closed"; I don't think he spoke much English and it was hard for him to understand what "palliative care" was. If I had just walked past him confidently, I would have been fine, but I thought his job was to screen people or something. No idea why he didn't refer me to the nurse's desk.
I ended up calling my sister P, who was with Mom, and figured out where Mom was.
I tried to steel myself for seeing Mom lying in bed, and it was pretty shocking. She was more or less sedated to the point of being unconscious, she didn't have her dentures in, and she really barely looked like herself.
Some of my family were there with her, and through the week they would be coming and going often.
I wasn't sure if I could deal with interacting with Mom in this situation. I've wondered what this time would be like; if I could manage to be present.
I was with our neighbor a few years ago, when he was dying. The first visit he was awake and lucid, a few days later he was sedated the way Mom was, and near death.
Holding Mom's hand and touching her was very comforting for me, and all of us took turns with her. I'm glad she was surrounded by people who love her.
I decided to stay with her until she passed, not just visit her and leave. There was a room across the hall from Mom's room for family that made it possible to stay there at the hospital. It had a cot and a couch, a microwave and a coffee maker. People kept bringing food, and I left sometimes to eat, though I always worried that she would die while I was away.
My Sister P stayed the whole time too, and for a few days her daughter stayed, and one night my brother T stayed.
Mom was already in this state for a few days before I arrived, and I was at the hospital for five and a half days. She lived for a week without any fluids.
I guess this is how we "let" people die now, is to make them as comfortable as possible, sedate them heavily so they don't feel anything, and stop giving them fluids.
It was a tough thing to accept, that she had to be sedated like that, but from all accounts it was absolutely necessary.
How all of this came to be, is that Mom's hip surgery went well, but got infected. After they did the second surgery to clean the incision, she was in a great deal of pain, and was agitated and pulling out her IV antibiotics, and crying out. She was so miserable, so tired, and hurting herself.
At first she was eating and drinking fine, but she had started refusing to swallow her pills. Her very necessary pills. Then, she refused to eat or drink, then it became apparent that this was the onset of what is usually the end stage of dementia, is that she just did not remember HOW to swallow. The food just sat in her mouth, and when she tried to swallow, it got into her lungs.
From what I understand, this is how many people with dementia finally die. The "not eating" is not something that she would have recovered from, it's an actual stage of dementia, and it can develop very quickly. In her case, about two weeks of sometimes refusing to eat, to completely being unable to swallow anything.
Generally this is when, in modern times, they just stop forcing them to try, and allow things to follow their course.
It was pretty grim, and it took a long time, but it did really give us all the time to absorb what was happening, and mercifully she was drugged enough that she was no longer in pain and crying out and fighting everything.
It was odd how for that week, the hospital kind of felt like Mom's home? Everywhere that she has been, has felt like that. The farm, her house in town, her room at the care home, and then this place. Our family gathered there, sitting around her bed, talking and visiting, laughing too.
We would get lulled into sort of feeling that this was sort of a "new normal", that she was stable and comfortable. Like she was just sleeping. It would go on like that for hours at a time, then she would have a stretch of different breathing, and we'd all think that was it, wake everybody up, all go in with her, and then it would even out again.
We would come and go, go get food, go sleep in the other room, (others went home for the night, to return the next day, others only came for one or two visits to say goodbye).
Sister N did say goodbye, but apparently didn't really want to do that, but came because her daughter insisted.
Trainwreck chose not to come at all, and none of her adult sons came.
Some of the other grand children chose not to come, but all of the children did, and many of the grand children brought their children.
During this week, our family also got together like we have for about forty years now, for our "May Long Weekend". It was okay, but subdued. None of us felt like we should cancel it, as it was something we knew Mom would want us to do together. It's important to remember happiness and life.
I went for the afternoon, then went back to the hospital.
The staff remarked that we were a very "present" family. She was not alone at all that week. I think there was always someone beside her, except for maybe a few minutes here and there. Someone holding her hand, adjusting her blankets, smoothing her hair.
My sister P is a nurse's aide, and she did a lot of shifting Mom in her bed to keep her from having pressure points, doing mouth care, putting Voltaren on her sore knees (there were moments when even through the sedation you could tell she was uncomfortable). She was there for the whole time Mom was there, sleeping at the hosptital, showering, and leaving for short periods to go get food and have a break.
In many ways it was not an unpleasant time. The family was very close to each other, and there was something very intimate about this shared experience, and to be present with Mom like this.
When she took her last breath, it was pretty early in the morning. I had been sleeping and sister P woke me to say that her breathing was very different. I sat with Mom for about four hours, with sister P and our sister in law S. I kissed her forehead and held her hand as she slipped away.
Our sister L arrived only a few minutes later, and we cried together. We had all been crying a lot already all week, but we cried again.
I even stayed with Mom after, not feeling strange at all being with her body, still warm. Sister P and I stayed while the nurses washed her, and I was surprised at how gentle they were, as if she were still alive.
There are certain things they do before the body is picked up by the funeral home. She was washed carefully, they removed her gown, there is a tag. Then they wrapped her carefully in the bed sheets. Seeing her that way helped me process the finality, since there was otherwise such a gradual transition into death that it didn't quite seem final.
In some ways, as painful as all of this was, it was also kind of beautiful to be with her to the end. To make sure she was cared for, to see what happened to her. To spend this week with her so intensely was a strange experience. To have an experience that is likely very rare these days, of having the family surround her for days, keeping vigil. Something that felt ancient.
I didn't even realize you COULD be with a person for days and days in the hospital, staying with them until the end.
It has given me a great deal of insight now, into what others have experienced with their loved ones.
I then went back to the farm, to stay with my brother and his wife. We weren't sitting around crying, for the most part we were kind of carrying on with things.
I got to have my big walk around the farm. It's quite a hike. I love the farm very much, and I don't know if it will be in our family much longer, so I try to drink it in when I can.
Then we had our Aunt's funeral on Saturday. Trainwreck missed that too, though she was planning to come. She thought it was Sunday.
It was a good funeral, I was happy with what I chose to wear (a fairly simple pair of dress pants and a nice blouse). It was a warm, sunny day which was pretty much perfect, as it had been cold and rainy before that.
There was a tea at the local drop in center afterwards, for mingling. Most of the people who attended the funeral were there.
I was doing okay considering that Mom had just died, and here we were at my Aunt's funeral. I didn't want to cry.
I did fall apart a bit when I went to hug my Uncle M (Mom's brother, it was his wife who passed). He too has dementia, though he was well aware that his wife, and now his big sister who raised him after their mother died, had both passed. He was beside himself, wondering what he would do without them.
So, after the tea, some of us got together at Sister N's place for a good visit.
That's not everything, there was so much visiting, so much talking. I spent time outside on the farm, seeing the animals, walking, talking on the deck.
Then I made the long drive home, trying not to cry the whole time.
It was a rough week, but in many ways also very beautiful. People do die, and I would rather experience something like this than to stay away from it, and not feel it in it's fullness.
no subject
Date: 2025-05-28 05:18 am (UTC)no subject
Date: 2025-05-28 05:25 am (UTC)no subject
Date: 2025-05-28 05:08 pm (UTC)I'm so sorry for your loss. And I think your entry is one of the most beautiful and truthful descriptions of loss that I've ever seen. So many people avoid talking or even thinking about death that it's become a kind of unknown to most people these days. I think you will value this entry for the rest of your life. To be honest, I cried just reading it. My mom died in a very similar way, although she was in hospice for a shorter period of time. I also asked the nurses to hold the sedating meds she was on, because I didn't believe she knew I was there, and it was really important to me that she know I was present. They did hold the meds, but she never fully woke up, which in retrospect was probably a good thing, in that she wasn't in pain anymore. I did get to crawl in bed with her in the hospice, just so I could cradle her head and sing her lullabies. It's something I'll always remember, along with how peaceful and close to her I felt.
I love the way your family was so present with your mom. Personally, I believe that the presence of loved ones must somehow be sensed by the person dying, even if they appear unconscious. It's a huge kindness to simply be there, with them, through this experience.
I had similar thoughts after my parents died about how odd it was that the world was carrying on with its natural cycle of growth and newness. Losing someone makes you feel like everything should stand still, if just for a moment, to mark their passing. I'm very glad that you had this time, both before and after her death, to just process the moment, to grieve, and to be with your family. Many hugs to you from Tennessee. Sherlock
no subject
Date: 2025-05-29 05:02 am (UTC)I'm glad you were able to spend that time with your Mom as well. I'm glad you were able to touch her and sing to her.
As much as they might not be conscious, the love must reach them somehow.
no subject
Date: 2025-06-02 02:09 am (UTC)no subject
Date: 2025-06-02 05:48 am (UTC)