room party and followup
Dec. 2nd, 2018 05:07 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
kareinaThe last time I had a chance to post was three days ago, so it is time to try to catch up. Mom is still with us. Her spirt is strong and she has been smiling and laughing, every day. However, the heart attack she had on Friday after Thanksgiving was her fifth trip to ER for heart issues since March. This one presented a bit differently than the others, since the first symptom she noticed was shortness of breath, so they went to the ER, where she was diagnosed with fluid in her lungs which was “probably related to heart issues”. Further investigating discovered that the stent, which had been cleared out last time she was in, was blocked again, so they cleaned it out again, put in a new stent, and a balloon pump to help the heart beat at full strength (though I am not clear if that was all in one go or during different procedures, as that was all done before I got to Seattle).
When the dust settled from that mom announced that she is done with the ER and all of the unpleasant things that happen when they are trying to save your life. She requested that she need never again face breathing tubes, chest compressions, electric shocks, etc. That decision was a major factor in our decision to gather. My sister Amber was the first to arrive; she flew in from Toronto, where she and her husband had been spending Thanksgiving with her husband's family. My aunt Barbara flew in from Alaska (arriving Monday evening), I flew in from Sweden (arriving late Tuesday evening, so they didn’t bring me to the hospital till Wednesday morning), my sister Kirsty flew in from Australia (arriving Wednesday during the day, so she went directly to the hospital).
(Note: this is the first time we sisters have all been together since 2010, and the first time we were all in the same place as Aunt Barbara since Amber’s wedding, many years before that).
News of our impending arrival really perked mom up and she started doing a bit better. We each came in about half a day apart, and each arrival brought her (and all of us) much joy. The docs had tried twice (once on Monday, once on Tuesday, both before my arrival) to wean her from the balloon pump, by decreasing the interval at which it pumps, dropping from 1 pump for every heart pump to 1:2, and then 1:3, but neither attempt went well, and they needed to bring it back to a 1:1 rhythm to stop the AFibs (it turns out that mom is one of those people who really don’t handle AFib well at all).
After we arrived, and she was doing better, they tried switching her meds to one(s?) which might make her heart strong enough to beat on its own, and they did another test weaning during the night between Wednesday and Thursday. This time they were able to reduce the balloon pump frequency all the way to 1:3 without causing problems, so they put it back to full strength and scheduled the removal for 16:00 on in conjunction with the room party we girls had planned.
One of the things that led to the “let’s have a party” idea was that Amber had gone shopping while in Toronto and picked up two new party dresses, one of which is a full length evening gown. Since she didn’t go home before flying here, she had them with her, so we had to give her a reason to wear them. But that meant that the rest of us needed to dress up, too. Therefore, on Wednesday evening while I did a slumber party with mom in her room (Beth and Amber had each done so the two nights previously) the rest of them looked through the closets at Beth’s house till everyone (including Beth’s two lovely daughters, Anahi and Lucia) found appropriate party clothes. Then Thursday during the day, while Aunt Barbara and mom hung out together, we sisters went to a second hand store to find me a party dress. They love to shop, so they wen through the racks and found a ton of dresses for me to try on, which I did, even the ones made from synthetic fabric, so that they could take photos. (one of the dresses was a 1920’s style flapper dress totally covered with sequins over a very, very synthetic base fabric which was kinda cute, but would have been horrid to wear for any length of time). Eventually we narrowed the choices down to two options, and, since Amber had two party dresses, we decided to get both, and she and I would both do a costume change later in the evening.
Then hit a grocery store for party snacks (while Beth went to a nearby shop for decorations) and we ran home, packed jewellery for everyone, and returned to the room. We got the room decorated and everyone into their party clothes (we bought mom a tiara and a feather boa, and one of the nurses gave her a pretty patch work quilt, so she was dressed up, too) and took photos of everyone with mom. Then we were shooed out of the room so that they could do the procedure to remove the balloon, and while we were waiting, we took more photos by the Christmas tree in the lobby.
Mom tells us that the procedure didn’t hurt, and she rather enjoyed the time, since it was the good looking young doctor who had to apply pressure on the entry point for the whole 40 minutes, so she passed the time flirting with him and telling him the story of her arranged marriage with Terry.
We had been told in advance of the procedure that if it wasn’t going to go well for her that she could die very soon after the removal, or it could take a few hours. There was also the possibility that she would do well and get to recover, but that one was a real long shot, given how weak her heart was. All of that also added up to a reason for a party—she is the kind of person who deserves a good farewell party, if it goes that way, and a good celebration party if it goes that way. We had told them in advance that we were going to have a party, but I am not certain just how seriously they took us, till they actually saw it. It was a fabulous party, with good food, pretty clothes, little mini top hats, fake moustaches on sticks, amazing singing (Anahi and Lucia are both very active in musical theatre and sound fantastic), lots of laughing, and a few tears. Mom’s rule for us all is “it is ok to be sad, and even to cry, but do it with a smile on your face”.
The party wound down a bit after 22:00, and we tidied up a bit and some of us went back to the house to get sleep, while others decided to wait with her, in case she was going to die they didn’t want her to be alone. I was one of the ones who went home, since I had spent 26 hours traveling, and only gotten like five hours sleep during that time, so I was still a bit behind on sleep. Before I left, I told mom that in the morning I would bake some reiska (her favourite bread), and if she was still here when I got back she could have some. After I was back at the house, I set a bread sponge, did my yoga and went to sleep at about 20 minutes before midnight.
That night mom asked to have her various tubes, IVs, etc. to come out just after midnight, so they called the house to see if anyone wanted to come back in to be with her. Beto (Beth’s husband) woke me just after 01:00 to let me know of her decision, and to see if I wanted to go back. I woke up thinking “I have to bake reiska”, but when I understood that I had only been sleeping for an hour and that Beto was going to drive people in straight away I decided to keep sleeping (which is to say I was really too tired to get up).
So he left and I snuggled down into my pillows again, and I heard mom’s voice say “get some sleep kiddo”. However, I didn’t fall back asleep, and after some minutes of laying there I woke up enough to get up and go do that baking. They didn’t have any real butter in the fridge (there was a butter-oil blend, but I am a purist), but there was a package of whipping cream that hadn’t been used at Thanksgiving, so I whipped that into butter and put the butter milk into the big loaf. I also made a smaller vegan loaf of reiska for Amber, since she eats only vegan food these days. (This is the first time I have ever made it with olive oil instead of butter, and she said it was good.)
When the bread was done (around 03:30) Beto drove back to the house to pick me up (good thing the hospital is less than three miles from the house, with all of the running back and forth that has been happening). I brought in the bread, fresh butter, some raspberry jam (the one vegan bread topping I saw in my quick look in the fridge) and a box of fresh raspberries they had). Those who were still awake were glad to have the hot bread, and the others we glad to have it when they woke up. Mom was sleeping then but seemed to smile when the bread smell reached her, and I think she appreciated it.
Some time after she woke up on Friday morning, she asked for reiska and coffee to dunk it in (her favourite way to eat it), and it made me very happy (and a bit weepy) to be able to give it to her (not that she ate much).
She tells us that she loved the party we gave her and assured us all that she has had a good life and is ready to go. However, as Friday progressed, she continued to do ok. Her heart beats weakly, and sometimes irregularly, but it is still beating, and her spirit and sense of humour remains strong. She slept a lot and, when awake would tell us that she just wanted another 10 minute nap, so, of course, we encouraged her to take one. By around 14:30 I was much too tired to stay awake, so when one of the sisters suggested that perhaps it was time to switch to doing shifts instead of everyone staying in the room all the time, I gratefully went back to the house, did a quick yoga session, explicitly told them that they shouldn’t wake me, even if there is news or a change in situation, and went to sleep at 15:30, and slept for nine hours.
When I woke, I promptly sent a message to the Sister’s channel in messenger to let them know I was up if whomever was on duty wanted to come home, and Beth sent Beto home to pick me up and bring me in, and then she and Lucia went home with him. I had brought my computer with me, but foolishly forgot the international power converter that Beth had lent me at the house, along with the power strip it was plugged into (I had used it to charge my phone and Bluetooth adapter overnight), so I couldn’t use it (I had used it often enough while flying that I don’t think there was enough battery left to be worth trying to bother with it. So, I amused myself doing yoga, dancing (we are playing music mom enjoys via pandora all the time, and every so often she requests a new artist/channel), reading, and playing with my phone.
(I have never been a computer game person, and have never had any games on my phone at all, but Beth showed me one she plays that involves filling in cross word patterns from a set of only a very few letters (rather than from clues), and this struck me as something that would be a great way to get better at Swedish spelling and to fill in gaps in my vocabulary, so I went looking for one. The one I found is similar enough to the one Beth plays, and I am finding the game itself to be useful, as I try to think what other words I can make from those four or five letters, and as I look up the meanings of those words I don’t know yet, I find the “game” aspect of it to be very, very annoying. Sadly, I can’t find anything in the settings to turn off all of the fireworks and notifications of how many points I am accumulating, etc. I tried emailing them to ask how to turn it off, but who knows if they will ever reply. However, I just now asked on FB if anyone can recommend one which is just the puzzle, an no annoying fireworks, interruptions for praise, or announcements of the accumulation of points, so perhaps someone will know of something.)
Around 07:00 on Saturday Amber and Kirsty got up and decided to swing by a store on the way to the hospital and asked if I wanted anything. I ordered the power adapter and asked them to pick up a new power strip from the store so that we could take it to the hospital without needing to unplug anything at the house (it wasn’t worth waking Beth to see if they already have a spare, an extra spare power strip is always useful). Of course, when they arrived with the power adapter and power strip, I now had company, so didn’t bother to get the computer out. Mom woke up after they got there and was surprised to still be in the hospital room, she had been dreaming of being at a beautiful crypt with a line of people coming by to touch it in farewell.
Mom took another nap, and Amber and I left Kirsty with mom and we went on a quest for a guest air mattress for the house. By the time we returned (with the mattress) both Beth and Aunt Barbara had arrived, and a bit later mom’s cousin Bonnie and her daughter Sharon dropped by for a short visit.
During the day we girls spoke to one of the cardiologists, who let us know that mom is now stable enough that she no longer needs the ICU, but that since she has chosen end-of-life “comfort care” (no life-prolonging meds or drastic measures, but only meds designed to make certain that the time she has left is comfortable) they can transfer her to hospice care. We had the choice between hospice in this hospital, which is so close to Beth’s house, and another quite a bit further away, so, of course, we choose the close one. However, given that it is a weekend, we have no idea how long it will take to get a room for her and do the transfer, so in the meantime we continued to decorate her current room, adding Christmas lights and more drawing on the window with the special metallic window markers we had bought for the party.
I had been up since just after 01:00 on Saturday, so when my friend Josie (who lives in the Seattle area) came by at 15:30 I had her take me back to the house, where we visited till it was time for her to head off to her evening activity, and then I went straight to bed just before 18:00 (very happy that I had done yoga already that day). I woke briefly when Beth came in some time later to (I thought at the time open the box with the new air mattress) get something from the printer (I am sleeping in the downstairs living room) but went right to sleep thereafter and never heard the girls bring in the new, huge, very tall air mattress. Thus, I woke up just after midnight to see Kirsty getting settled for the night in her huge princess bed, which made my little futon on the floor nest look like something for Cinderella. (Note: even so, I like my floor bed better—I have a suitcase for a headboard, and my pillows won’t fall off the edge of the bed in the night. If I were on the huge air mattress my pillows would fall, and I would be sad.)
When I went upstairs Amber and her husband Dave were there—he had just arrived from San Francisco, so after a short visit with them they brought me to the hospital so that Beth could go home and get some sleep. Now I am happily curled up in the corner with my computer, which means that I have had a chance to type this all up before I forget. Wish it was better news. We don’t know how much longer mom will be with us, but she knows she is loved, and she is content that she has had a good life, and she encourages us all to keep on smiling.
When the dust settled from that mom announced that she is done with the ER and all of the unpleasant things that happen when they are trying to save your life. She requested that she need never again face breathing tubes, chest compressions, electric shocks, etc. That decision was a major factor in our decision to gather. My sister Amber was the first to arrive; she flew in from Toronto, where she and her husband had been spending Thanksgiving with her husband's family. My aunt Barbara flew in from Alaska (arriving Monday evening), I flew in from Sweden (arriving late Tuesday evening, so they didn’t bring me to the hospital till Wednesday morning), my sister Kirsty flew in from Australia (arriving Wednesday during the day, so she went directly to the hospital).
(Note: this is the first time we sisters have all been together since 2010, and the first time we were all in the same place as Aunt Barbara since Amber’s wedding, many years before that).
News of our impending arrival really perked mom up and she started doing a bit better. We each came in about half a day apart, and each arrival brought her (and all of us) much joy. The docs had tried twice (once on Monday, once on Tuesday, both before my arrival) to wean her from the balloon pump, by decreasing the interval at which it pumps, dropping from 1 pump for every heart pump to 1:2, and then 1:3, but neither attempt went well, and they needed to bring it back to a 1:1 rhythm to stop the AFibs (it turns out that mom is one of those people who really don’t handle AFib well at all).
After we arrived, and she was doing better, they tried switching her meds to one(s?) which might make her heart strong enough to beat on its own, and they did another test weaning during the night between Wednesday and Thursday. This time they were able to reduce the balloon pump frequency all the way to 1:3 without causing problems, so they put it back to full strength and scheduled the removal for 16:00 on in conjunction with the room party we girls had planned.
One of the things that led to the “let’s have a party” idea was that Amber had gone shopping while in Toronto and picked up two new party dresses, one of which is a full length evening gown. Since she didn’t go home before flying here, she had them with her, so we had to give her a reason to wear them. But that meant that the rest of us needed to dress up, too. Therefore, on Wednesday evening while I did a slumber party with mom in her room (Beth and Amber had each done so the two nights previously) the rest of them looked through the closets at Beth’s house till everyone (including Beth’s two lovely daughters, Anahi and Lucia) found appropriate party clothes. Then Thursday during the day, while Aunt Barbara and mom hung out together, we sisters went to a second hand store to find me a party dress. They love to shop, so they wen through the racks and found a ton of dresses for me to try on, which I did, even the ones made from synthetic fabric, so that they could take photos. (one of the dresses was a 1920’s style flapper dress totally covered with sequins over a very, very synthetic base fabric which was kinda cute, but would have been horrid to wear for any length of time). Eventually we narrowed the choices down to two options, and, since Amber had two party dresses, we decided to get both, and she and I would both do a costume change later in the evening.
Then hit a grocery store for party snacks (while Beth went to a nearby shop for decorations) and we ran home, packed jewellery for everyone, and returned to the room. We got the room decorated and everyone into their party clothes (we bought mom a tiara and a feather boa, and one of the nurses gave her a pretty patch work quilt, so she was dressed up, too) and took photos of everyone with mom. Then we were shooed out of the room so that they could do the procedure to remove the balloon, and while we were waiting, we took more photos by the Christmas tree in the lobby.
Mom tells us that the procedure didn’t hurt, and she rather enjoyed the time, since it was the good looking young doctor who had to apply pressure on the entry point for the whole 40 minutes, so she passed the time flirting with him and telling him the story of her arranged marriage with Terry.
We had been told in advance of the procedure that if it wasn’t going to go well for her that she could die very soon after the removal, or it could take a few hours. There was also the possibility that she would do well and get to recover, but that one was a real long shot, given how weak her heart was. All of that also added up to a reason for a party—she is the kind of person who deserves a good farewell party, if it goes that way, and a good celebration party if it goes that way. We had told them in advance that we were going to have a party, but I am not certain just how seriously they took us, till they actually saw it. It was a fabulous party, with good food, pretty clothes, little mini top hats, fake moustaches on sticks, amazing singing (Anahi and Lucia are both very active in musical theatre and sound fantastic), lots of laughing, and a few tears. Mom’s rule for us all is “it is ok to be sad, and even to cry, but do it with a smile on your face”.
The party wound down a bit after 22:00, and we tidied up a bit and some of us went back to the house to get sleep, while others decided to wait with her, in case she was going to die they didn’t want her to be alone. I was one of the ones who went home, since I had spent 26 hours traveling, and only gotten like five hours sleep during that time, so I was still a bit behind on sleep. Before I left, I told mom that in the morning I would bake some reiska (her favourite bread), and if she was still here when I got back she could have some. After I was back at the house, I set a bread sponge, did my yoga and went to sleep at about 20 minutes before midnight.
That night mom asked to have her various tubes, IVs, etc. to come out just after midnight, so they called the house to see if anyone wanted to come back in to be with her. Beto (Beth’s husband) woke me just after 01:00 to let me know of her decision, and to see if I wanted to go back. I woke up thinking “I have to bake reiska”, but when I understood that I had only been sleeping for an hour and that Beto was going to drive people in straight away I decided to keep sleeping (which is to say I was really too tired to get up).
So he left and I snuggled down into my pillows again, and I heard mom’s voice say “get some sleep kiddo”. However, I didn’t fall back asleep, and after some minutes of laying there I woke up enough to get up and go do that baking. They didn’t have any real butter in the fridge (there was a butter-oil blend, but I am a purist), but there was a package of whipping cream that hadn’t been used at Thanksgiving, so I whipped that into butter and put the butter milk into the big loaf. I also made a smaller vegan loaf of reiska for Amber, since she eats only vegan food these days. (This is the first time I have ever made it with olive oil instead of butter, and she said it was good.)
When the bread was done (around 03:30) Beto drove back to the house to pick me up (good thing the hospital is less than three miles from the house, with all of the running back and forth that has been happening). I brought in the bread, fresh butter, some raspberry jam (the one vegan bread topping I saw in my quick look in the fridge) and a box of fresh raspberries they had). Those who were still awake were glad to have the hot bread, and the others we glad to have it when they woke up. Mom was sleeping then but seemed to smile when the bread smell reached her, and I think she appreciated it.
Some time after she woke up on Friday morning, she asked for reiska and coffee to dunk it in (her favourite way to eat it), and it made me very happy (and a bit weepy) to be able to give it to her (not that she ate much).
She tells us that she loved the party we gave her and assured us all that she has had a good life and is ready to go. However, as Friday progressed, she continued to do ok. Her heart beats weakly, and sometimes irregularly, but it is still beating, and her spirit and sense of humour remains strong. She slept a lot and, when awake would tell us that she just wanted another 10 minute nap, so, of course, we encouraged her to take one. By around 14:30 I was much too tired to stay awake, so when one of the sisters suggested that perhaps it was time to switch to doing shifts instead of everyone staying in the room all the time, I gratefully went back to the house, did a quick yoga session, explicitly told them that they shouldn’t wake me, even if there is news or a change in situation, and went to sleep at 15:30, and slept for nine hours.
When I woke, I promptly sent a message to the Sister’s channel in messenger to let them know I was up if whomever was on duty wanted to come home, and Beth sent Beto home to pick me up and bring me in, and then she and Lucia went home with him. I had brought my computer with me, but foolishly forgot the international power converter that Beth had lent me at the house, along with the power strip it was plugged into (I had used it to charge my phone and Bluetooth adapter overnight), so I couldn’t use it (I had used it often enough while flying that I don’t think there was enough battery left to be worth trying to bother with it. So, I amused myself doing yoga, dancing (we are playing music mom enjoys via pandora all the time, and every so often she requests a new artist/channel), reading, and playing with my phone.
(I have never been a computer game person, and have never had any games on my phone at all, but Beth showed me one she plays that involves filling in cross word patterns from a set of only a very few letters (rather than from clues), and this struck me as something that would be a great way to get better at Swedish spelling and to fill in gaps in my vocabulary, so I went looking for one. The one I found is similar enough to the one Beth plays, and I am finding the game itself to be useful, as I try to think what other words I can make from those four or five letters, and as I look up the meanings of those words I don’t know yet, I find the “game” aspect of it to be very, very annoying. Sadly, I can’t find anything in the settings to turn off all of the fireworks and notifications of how many points I am accumulating, etc. I tried emailing them to ask how to turn it off, but who knows if they will ever reply. However, I just now asked on FB if anyone can recommend one which is just the puzzle, an no annoying fireworks, interruptions for praise, or announcements of the accumulation of points, so perhaps someone will know of something.)
Around 07:00 on Saturday Amber and Kirsty got up and decided to swing by a store on the way to the hospital and asked if I wanted anything. I ordered the power adapter and asked them to pick up a new power strip from the store so that we could take it to the hospital without needing to unplug anything at the house (it wasn’t worth waking Beth to see if they already have a spare, an extra spare power strip is always useful). Of course, when they arrived with the power adapter and power strip, I now had company, so didn’t bother to get the computer out. Mom woke up after they got there and was surprised to still be in the hospital room, she had been dreaming of being at a beautiful crypt with a line of people coming by to touch it in farewell.
Mom took another nap, and Amber and I left Kirsty with mom and we went on a quest for a guest air mattress for the house. By the time we returned (with the mattress) both Beth and Aunt Barbara had arrived, and a bit later mom’s cousin Bonnie and her daughter Sharon dropped by for a short visit.
During the day we girls spoke to one of the cardiologists, who let us know that mom is now stable enough that she no longer needs the ICU, but that since she has chosen end-of-life “comfort care” (no life-prolonging meds or drastic measures, but only meds designed to make certain that the time she has left is comfortable) they can transfer her to hospice care. We had the choice between hospice in this hospital, which is so close to Beth’s house, and another quite a bit further away, so, of course, we choose the close one. However, given that it is a weekend, we have no idea how long it will take to get a room for her and do the transfer, so in the meantime we continued to decorate her current room, adding Christmas lights and more drawing on the window with the special metallic window markers we had bought for the party.
I had been up since just after 01:00 on Saturday, so when my friend Josie (who lives in the Seattle area) came by at 15:30 I had her take me back to the house, where we visited till it was time for her to head off to her evening activity, and then I went straight to bed just before 18:00 (very happy that I had done yoga already that day). I woke briefly when Beth came in some time later to (I thought at the time open the box with the new air mattress) get something from the printer (I am sleeping in the downstairs living room) but went right to sleep thereafter and never heard the girls bring in the new, huge, very tall air mattress. Thus, I woke up just after midnight to see Kirsty getting settled for the night in her huge princess bed, which made my little futon on the floor nest look like something for Cinderella. (Note: even so, I like my floor bed better—I have a suitcase for a headboard, and my pillows won’t fall off the edge of the bed in the night. If I were on the huge air mattress my pillows would fall, and I would be sad.)
When I went upstairs Amber and her husband Dave were there—he had just arrived from San Francisco, so after a short visit with them they brought me to the hospital so that Beth could go home and get some sleep. Now I am happily curled up in the corner with my computer, which means that I have had a chance to type this all up before I forget. Wish it was better news. We don’t know how much longer mom will be with us, but she knows she is loved, and she is content that she has had a good life, and she encourages us all to keep on smiling.
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Date: 2018-12-02 05:11 pm (UTC)(no subject)
Date: 2018-12-02 08:43 pm (UTC)(no subject)
Date: 2018-12-06 09:12 pm (UTC)