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Sep. 16th, 2013 05:14 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
sherryillkI sorta feel like I've been avoiding LJ.
Actually, I know I've been avoiding LJ.
My last post was about Elementary. The post before that had been partly about my finger, which in the grand scheme of things, was inconsequential. The majority of that post, was not, and was about my grandmother. When I posted it, she had been doing pretty bad that day but seemed to perk up a bit at night, so much so that she was able to eat a little bit and we thought she might be getting better.
She didn't.
The very next morning, she had a high fever, looked absolutely awful and we feared for her life. We quickly bundled her up and got her to the ER. That was on the 1st of August.
I was right with my fears -- she had pneumonia and it was most likely aspiration pneumonia. And if you know anything about dementia or Alzheimer's, that's very bad. The doctor told us she was critically ill and she could pass away at any time. Her test results were very abnormal. She had pneumonia in 1/3 of one of her lungs and her salt levels were through the roof. Every single doctor told us in all their years of practicing medicine, they had never seen a person with such high salt levels.
We were devastated. They recommended hospice and didn't want to treat her. We insisted that they do everything they can to prolong her life -- for now -- since we needed to get the family together to make decisions. And that started two weeks of very little sleep, worrying, rushing around, trying our best to do what was right and what we needed to do.
It became very clear that Grandma didn't have much time left. Hospice was the only option and although I wanted her to be at home with us when she passed, apparently that isn't done in the Chinese culture. So we ended up moving her to a facility. It took a long time for us to find the right one. In the end, we found one in Portland that had a large number of Chinese residents and Chinese speaking staff. It was also the place where my paternal Grandfather passed away in.
And during this time, we were also trying desperately to help my cousin in China get a visa to come to the US to see Grandma for the very last time. I wrote letters, got letters from doctors, gathered documents to send to her both electronically and physically. And during that time, someone from the family always had to be with Grandma just in case she passed away so she would have someone with her when she goes. We took shifts. My brother, who lives in Seattle, came back practically every weekend even though he had just started a new job. My cousin Clark stayed with her overnight pretty much every single night she was there. We desperately hoped she would last long enough for my cousin to make it over here. And we made arrangements for what had to happen after. Family drama reared its head over and over again. None of us coped very well.
It was a very stressful time. I was exhausted through pretty much the entire time. And I was sad, so sad. I'm still really sad.
In the end, Grandma passed away late on the 19th. At the end, she was on oxygen and was given morphine to make her comfortable. My mother had stayed out in Portland that night with the intention of being with her in the morning. She had left a few hours earlier. My 2nd Uncle and Aunt had only just left so only my cousin was there with Grandma when she passed. When we got the phone call, I was still with my father at the restaurant. We quickly closed up and rushed out to see her one last time.
It was a very surreal moment. You could just see there was no longer any life there and that her spirit was no longer there. I tried but I couldn't hold back my tears. Everyone was there. That day, everyone had been in to see her -- all of her children, all of her US grandchildren (aside from Kent who saw her the day before because he had to get back to Seattle for work), and even her great granddaughter. And apparently that night had been a full moon. And the Chinese Ghost Day, which according to legend, those who are on the verge of death would never be able to make it past Ghost Day because their weakened spirits would never be able to fight off the ghosts who would take them away. That night, there was another death right after Grandma's, an elderly man who was also Chinese. When we left, we lit a stick of incense to guide my Grandmother's spirit back to my Uncle's house.
At the time, my cousin in China still hadn't gotten her visa yet. I sent all the documents out to her on the 6th. They arrived in China on the 9th. My cousin filed the paperwork on the 10th and was able to get an interview for the 12th, which she ended up passing. But the processing time for the visa was one week so in the end, she didn't even receive her passport back with the visa until the 22nd. And that was two days after my Grandmother passed. So now she wasn't coming to the US to see her one last time, she was coming for the funeral. She flew out for the US on the 25th.
We ended up having the funeral a week later on the 26th, the day after my cousin arrived. It was an open casket funeral and was very touching, very beautiful. My 2nd Uncle was the only one who was able to speak but even he broke down several times during it. None of us were able to hold our tears. I'm getting emotional just thinking about it because it was just so heartbreaking. And so very sad.
We had her cremated so that was after the funeral. First there was a lunch, thanks for all the people who attended the funeral. After that, we went to my Uncle's house to do all the stuff that needed to do -- jump over the fire, burning joss paper. After that, it was time for the cremation. In the end, it was only my branch of the family who ended up going to it. None of the Uncles' families were willing to go so we went. It was me, my parents, my brother, my sister and her husband who watched them put her casket into the machine along with one of the flower wreaths and we watched. None of us could bear to push the button however... And that was the last time we saw my Grandmother whole.
Because the whole cremation process takes hours to complete and hours after that to cool, there was no way we could get her in an urn and entombed the same day. So we did that the next day. They ended up picking the same cemetery that my paternal grandparents are at, a beautiful place high up in the Portland hills. That's important for the Chinese people, that they be laid to rest "up a mountain." She had a beautiful view which was nice for a final resting place. That had less tears but at the same time, when the slab of stone was put into place over her urn, it was very final and very unsettling. I still can't quite believe that's where she's at now, and that's where she'll be forever...
My Grandmother lived with my family for twenty years. She practically raise me and my siblings. She and I have always had a difficult relationship but for the last couple of years, she has been my constant companion. After it became clear she needed looking after constantly, I was the one who looked after her for most of the day. My life revolved around her. I had alarms set up for when I needed to get her to the bathroom to pee. I fed her, tried to make sure she got enough nutrients. At the end, we were hand feeding her all her meals. I changed her when she had accidents and I washed her clothes and linens. I made sure she didn't wander off and I was constantly alert to try and see to her need. After so many years of her taking care of us, we were taking care of her.
Dementia is the worse sort of disease. It robs a person of their life, their personality, and their dignity. It makes you, the caretaker, feel constantly guilty, worried, anxious and stressed. You wonder if you're doing enough, if you're failing her in some way because there should be more you're doing. It's frustrating and gross, and mentally exhausting. Your happiness ends up being tied to their happiness, which is awful because they can no longer make themselves understood. My Grandmother had complete aphasia. She spoke complete gibberish. I haven't been able to understand her for a very long time. It's been years since we've had a conversation. I never knew what I needed to do for her to make her happy and it was so hard trying to please her when I had no idea how to do so.
I've been told we've given her great care, that she only lasted this long because of it. People with dementia are apparently not supposed to live this many years after they've been diagnosed. But I still can't shake the feeling that we didn't do enough, that we ultimately failed her. Life with her had not been perfect and I feel so guilty now that I hadn't made more of an effort to try and make it as perfect as it could have been. Why didn't I make more allowances for her? She couldn't help it, her brain was deteriorating... It wasn't her fault and yet sometimes it felt like it was. When she wakes you up multiple times in the night, getting up every single time even after you've tucked her in...or when she decides the floor is an acceptable place to pee and then proceed to walk through it and track it around the house...Or even worse, when she doesn't realize she's constipated and starts using her fingers to pry the feces out of her because it's uncomfortable...and then she decides to carry around those feces in her pocket or leave them in random places in the house...it was just so hard to keep your cool and be understanding and patient.
Objectively, you know you can't fault her, but living through it was just very hard. We tried our best but now, it feels like it just wasn't good enough. And now she's gone and you'll never be able to make it up to her.
August has been a very long month. I don't think I'll ever be able to look at the end of Summer in the same way ever again. I still find myself crying every so often when I think or talk about her. I don't think I'm done grieving yet but I'm not sure when I ever will be... This is the first time a truly meaningful death has occurred in my life and I just don't know how to deal with it yet. Most of the time, I just don't want to, throwing myself into other things so I won't think about it because otherwise it feels like I'll always be in tears or just sad all the time.
So that's why I haven't been around LJ. It just felt weird to go on LJ, pretend everything is normal when everything has changed in my life. I couldn't write about it before and it felt wrong not to and be on LJ so I just stayed away. But now it's been almost a month since my Grandmother passed and I can't believe she's been out of my life for so long already... I still want to just avoid it all but it felt like a good time to finally write this entry. I feel like there's so much more that I haven't said, that I can't say but writing this out does make me feel a bit better so maybe it was a good idea after all...
Actually, I know I've been avoiding LJ.
My last post was about Elementary. The post before that had been partly about my finger, which in the grand scheme of things, was inconsequential. The majority of that post, was not, and was about my grandmother. When I posted it, she had been doing pretty bad that day but seemed to perk up a bit at night, so much so that she was able to eat a little bit and we thought she might be getting better.
She didn't.
The very next morning, she had a high fever, looked absolutely awful and we feared for her life. We quickly bundled her up and got her to the ER. That was on the 1st of August.
I was right with my fears -- she had pneumonia and it was most likely aspiration pneumonia. And if you know anything about dementia or Alzheimer's, that's very bad. The doctor told us she was critically ill and she could pass away at any time. Her test results were very abnormal. She had pneumonia in 1/3 of one of her lungs and her salt levels were through the roof. Every single doctor told us in all their years of practicing medicine, they had never seen a person with such high salt levels.
We were devastated. They recommended hospice and didn't want to treat her. We insisted that they do everything they can to prolong her life -- for now -- since we needed to get the family together to make decisions. And that started two weeks of very little sleep, worrying, rushing around, trying our best to do what was right and what we needed to do.
It became very clear that Grandma didn't have much time left. Hospice was the only option and although I wanted her to be at home with us when she passed, apparently that isn't done in the Chinese culture. So we ended up moving her to a facility. It took a long time for us to find the right one. In the end, we found one in Portland that had a large number of Chinese residents and Chinese speaking staff. It was also the place where my paternal Grandfather passed away in.
And during this time, we were also trying desperately to help my cousin in China get a visa to come to the US to see Grandma for the very last time. I wrote letters, got letters from doctors, gathered documents to send to her both electronically and physically. And during that time, someone from the family always had to be with Grandma just in case she passed away so she would have someone with her when she goes. We took shifts. My brother, who lives in Seattle, came back practically every weekend even though he had just started a new job. My cousin Clark stayed with her overnight pretty much every single night she was there. We desperately hoped she would last long enough for my cousin to make it over here. And we made arrangements for what had to happen after. Family drama reared its head over and over again. None of us coped very well.
It was a very stressful time. I was exhausted through pretty much the entire time. And I was sad, so sad. I'm still really sad.
In the end, Grandma passed away late on the 19th. At the end, she was on oxygen and was given morphine to make her comfortable. My mother had stayed out in Portland that night with the intention of being with her in the morning. She had left a few hours earlier. My 2nd Uncle and Aunt had only just left so only my cousin was there with Grandma when she passed. When we got the phone call, I was still with my father at the restaurant. We quickly closed up and rushed out to see her one last time.
It was a very surreal moment. You could just see there was no longer any life there and that her spirit was no longer there. I tried but I couldn't hold back my tears. Everyone was there. That day, everyone had been in to see her -- all of her children, all of her US grandchildren (aside from Kent who saw her the day before because he had to get back to Seattle for work), and even her great granddaughter. And apparently that night had been a full moon. And the Chinese Ghost Day, which according to legend, those who are on the verge of death would never be able to make it past Ghost Day because their weakened spirits would never be able to fight off the ghosts who would take them away. That night, there was another death right after Grandma's, an elderly man who was also Chinese. When we left, we lit a stick of incense to guide my Grandmother's spirit back to my Uncle's house.
At the time, my cousin in China still hadn't gotten her visa yet. I sent all the documents out to her on the 6th. They arrived in China on the 9th. My cousin filed the paperwork on the 10th and was able to get an interview for the 12th, which she ended up passing. But the processing time for the visa was one week so in the end, she didn't even receive her passport back with the visa until the 22nd. And that was two days after my Grandmother passed. So now she wasn't coming to the US to see her one last time, she was coming for the funeral. She flew out for the US on the 25th.
We ended up having the funeral a week later on the 26th, the day after my cousin arrived. It was an open casket funeral and was very touching, very beautiful. My 2nd Uncle was the only one who was able to speak but even he broke down several times during it. None of us were able to hold our tears. I'm getting emotional just thinking about it because it was just so heartbreaking. And so very sad.
We had her cremated so that was after the funeral. First there was a lunch, thanks for all the people who attended the funeral. After that, we went to my Uncle's house to do all the stuff that needed to do -- jump over the fire, burning joss paper. After that, it was time for the cremation. In the end, it was only my branch of the family who ended up going to it. None of the Uncles' families were willing to go so we went. It was me, my parents, my brother, my sister and her husband who watched them put her casket into the machine along with one of the flower wreaths and we watched. None of us could bear to push the button however... And that was the last time we saw my Grandmother whole.
Because the whole cremation process takes hours to complete and hours after that to cool, there was no way we could get her in an urn and entombed the same day. So we did that the next day. They ended up picking the same cemetery that my paternal grandparents are at, a beautiful place high up in the Portland hills. That's important for the Chinese people, that they be laid to rest "up a mountain." She had a beautiful view which was nice for a final resting place. That had less tears but at the same time, when the slab of stone was put into place over her urn, it was very final and very unsettling. I still can't quite believe that's where she's at now, and that's where she'll be forever...
My Grandmother lived with my family for twenty years. She practically raise me and my siblings. She and I have always had a difficult relationship but for the last couple of years, she has been my constant companion. After it became clear she needed looking after constantly, I was the one who looked after her for most of the day. My life revolved around her. I had alarms set up for when I needed to get her to the bathroom to pee. I fed her, tried to make sure she got enough nutrients. At the end, we were hand feeding her all her meals. I changed her when she had accidents and I washed her clothes and linens. I made sure she didn't wander off and I was constantly alert to try and see to her need. After so many years of her taking care of us, we were taking care of her.
Dementia is the worse sort of disease. It robs a person of their life, their personality, and their dignity. It makes you, the caretaker, feel constantly guilty, worried, anxious and stressed. You wonder if you're doing enough, if you're failing her in some way because there should be more you're doing. It's frustrating and gross, and mentally exhausting. Your happiness ends up being tied to their happiness, which is awful because they can no longer make themselves understood. My Grandmother had complete aphasia. She spoke complete gibberish. I haven't been able to understand her for a very long time. It's been years since we've had a conversation. I never knew what I needed to do for her to make her happy and it was so hard trying to please her when I had no idea how to do so.
I've been told we've given her great care, that she only lasted this long because of it. People with dementia are apparently not supposed to live this many years after they've been diagnosed. But I still can't shake the feeling that we didn't do enough, that we ultimately failed her. Life with her had not been perfect and I feel so guilty now that I hadn't made more of an effort to try and make it as perfect as it could have been. Why didn't I make more allowances for her? She couldn't help it, her brain was deteriorating... It wasn't her fault and yet sometimes it felt like it was. When she wakes you up multiple times in the night, getting up every single time even after you've tucked her in...or when she decides the floor is an acceptable place to pee and then proceed to walk through it and track it around the house...Or even worse, when she doesn't realize she's constipated and starts using her fingers to pry the feces out of her because it's uncomfortable...and then she decides to carry around those feces in her pocket or leave them in random places in the house...it was just so hard to keep your cool and be understanding and patient.
Objectively, you know you can't fault her, but living through it was just very hard. We tried our best but now, it feels like it just wasn't good enough. And now she's gone and you'll never be able to make it up to her.
August has been a very long month. I don't think I'll ever be able to look at the end of Summer in the same way ever again. I still find myself crying every so often when I think or talk about her. I don't think I'm done grieving yet but I'm not sure when I ever will be... This is the first time a truly meaningful death has occurred in my life and I just don't know how to deal with it yet. Most of the time, I just don't want to, throwing myself into other things so I won't think about it because otherwise it feels like I'll always be in tears or just sad all the time.
So that's why I haven't been around LJ. It just felt weird to go on LJ, pretend everything is normal when everything has changed in my life. I couldn't write about it before and it felt wrong not to and be on LJ so I just stayed away. But now it's been almost a month since my Grandmother passed and I can't believe she's been out of my life for so long already... I still want to just avoid it all but it felt like a good time to finally write this entry. I feel like there's so much more that I haven't said, that I can't say but writing this out does make me feel a bit better so maybe it was a good idea after all...
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no subject
on 2013-09-16 02:42 pm (UTC)I'm not sure if this will be of any help but besides the other feelings of loss and grief, many caretakers (I did) feel a sense of failure after the loved one dies. It slowly fades with time to be replaced by a vague sort of sadness wishing things had been different.
*hugs*
no subject
on 2013-09-16 08:15 pm (UTC)no subject
on 2013-09-17 02:15 am (UTC)It always felt weird to me how I seemed stuck in one place but the world just kept on speeding by. I hope you get some peace soon, it's always difficult.