Entering the home stretch
Today, my beloved puppy, Minnesota, threw up at home, and then passed blood in the kitchen. He is at the vet now, and they are not sure what is wrong. I'm hoping that it's curable.
Earlier today, a volunteer arrived and Matt and I got a brief break. We went and got some food at Wendys and then walked around for a bit, just kind of shell-shocked. We packed dishes for the kitchen, prepared paintings to be moved, and bickered back and forth with Pat. She figured that she needed a new bed, new chairs, a large couch for a small space, and she was absolutely living when I put my foot down and said NO. Matt got her a television yesterday at Costco that she will never be able to use and never watch, but maybe it's a small price to pay for just getting her out. But she has a $2K bed that she doesn't like because my dad researched and picked it out. It is a full-size, not queen, and it will fit, and it will be better for her myriad health problems, including her back pain. That is why my dad got it for her. She wanted a cheap Costco trundle bed and mattress. She likes to explain things to people.
"Well, I liked it for its frame. And this way, Ann (her sister) can sleep in it when she comes to visit."
"But a mattress is the most important thing about the bed. This isn't going to be good for your health, and you have to sleep in it all the time. Ann may come and sleep over one night a year."
We did that dance for awhile. When Matt and I got back from our respite, I took Pat to her hair appointment. I dropped her off, then ran to Subway and got her lunch. Then, I went to Bath and Body and got her some pretty soaps for her bathroom and some foot cream for my dad's dry feet. I got back to the salon, and she had convinced the stylist to cut her fingernails, then remove her old polish, then replace it. The woman didn't charge her, but I slipped her a tip on the way out.
I had the distinct privilege of sitting in a chair in a beauty salon and listening to my mother talk about what horrible people we are. Every once in awhile when she would say something truly bizarre "They only gave me one day to get out," "They say I have to be out tonight," I would pipe up, "You know, I can hear everything you're saying, right?"
Then she pressed me for what Matt and I had done. I told her, and so then the story turned into, "I got up at 5am to start packing as fast as I could because they want me out, and they went out and had a good time and left me to do all the work."
Yeah, walking around with Wendy's. We sure know how to have a good time.
We got home and she started in on all of her various complaints while Matt and I packed her knickknacks, four suitcases of clothes, many with the tags still on, a couple more boxes of clothes, then boxes of the contents of her drawers. There is no way this will all fit. No way. But sorting through it over the next few days should keep her busy for awhile.
This afternoon, Matt had to go up to Sunrise for last paperwork, and Burke and Lori (my uncle and aunt) came down from Draper, and my aunt Ann came up from Manti. Lori and Ann immediately swooped my mom away, but not before I stood up and swept my arm widely in front of me and said, "She is taking the bed downstairs. She can take any furniture in this house, but we are not buying her another piece of furniture!" And then I shook my finger in Burke's face and said, "And you're not buying her a bed!" And then I stormed out of the house with my coat to smoke a cigarette.
Burke came out and talked to me and we took a walk and talked and talked and talked. When Matt got back, we all took a drive (because otherwise, Pat interrupted us every five seconds by saying, "Not everything they say is true,") and discussed whether we should postpone the nursing home in favor of putting her in a detox unit. She is on a lot of medications. For years, Matt and I wondered whether it was the medications causing her dementia. Lori is convinced that Pat is mentally ill, but not that she has dementia or alzheimer's. We explained that we too thought for years that it was the medications, but we and the medical professionals are convinced that it's dementia. I told Burke, "This feels like hell, putting her in a nursing home, but detox just seems like it would be cruel."
Matt put it more cogently: "I am afraid it might kill her, and I'm not willing to do it just to satisfy my curiosity."
We decided to call her docs tomorrow and ask that they prescribe a regimen that will wean her down slowly, and we will see if there are any changes.
For years, Matt and I both wondered whether she would be different off the medications. But she won't be. And I actually came around to the idea of detox-- Burke said they would take her in a matter of hours-- but we decided to try the assisted living first. They make it sound like they are doing us a favor by not engaging us in a longterm contract, but it is really to protect THEM. Burke and Matt and I are all a little afraid they'll kick her out. But surely she isn't the worst they have ever seen. Right? And she is more of a pill hoarder than a pill popper. She doesn't like how she feels if she mistakenly takes Hydrocodone twice in five minutes, and we threw out 5 or 6 full bottles of it when my dad had his triple bypass. So, that suggests that she isn't taking them so much as keeping them. It's a security thing. Also, she breaks them in half. Matt and I both know people who have been pill poppers, and there is no such thing as breaking them in half or stopping at 2. So, she may not actually even need detox. I was going three days between fentanyl patches the three weeks we were out here for the heart surgery, and she didn't even notice most of the time. She didn't shake or sweat or puke either.
Burke and Lori offered to take Pat tonight to spend the night at their house. They loaded the back of Burke's truck with the suitcases, some of the boxes, the bed. My uncle Mark will come by with his truck tomorrow and we'll load up other furniture, other boxes, the paintings, small tables, dresser, nightstand. But Burke also volunteered them to move her in and unpack her because she is so angry at Matt and me right now. We accepted. We will end up going up there tomorrow, but may not have to have the long day we anticipated. Which is good, because as it is, we will have to find someone to come and stay with Dad.
Dad had some blood drawn yesterday. The nurse called today and said the meds they were giving him to bring down the swelling in his abdomen had spiked his potassium to critical levels, so we had to throw that medication out, start him on a new one, and "Watch him, because he could have a heart attack."
Matt and I had been wondering why he wasn't losing weight with his lack of food the past two months or so. Last night, I noticed that except for his torso, which is still distended, he has SHRUNK. In other words, he is starting to waste away from the cancer. He is just starting to have some trouble with incontinence, which horrifies him and puts him in a foul temper. I can't say I blame him.
Burke and Lori finally got Mom out the door, and I went back to sit with my dad and he said, "She didn't come back to say goodbye."
Burke and I had talked about that and decided that she should come down next week so we didn't have to do a final goodbye tonight on top of everything else. I asked my dad what he was thinking about. Matt put up a wall of family pictures on the wall in front of my dad's hospital bed, and often when we are sitting in there, we just sit and stare at them. I wonder if I will ever be able to look at any of these pictures again after this. My dad told me, "I am just wondering how this went so terribly wrong. How did they miss it for so long? How did I miss it? Did I even ever have a chance?"
A week ago, when I wasn't so exhausted, that would have tormented me. Now, all I can do is just nod sadly. It really goes back to when doctors put 7 stents in his heart. That led to him needing a triple bypass. That led to his cancer going unidentified and untreated until his finger required a partial amputation and he had 40 lymph nodes removed, all riddled with cancer. Mistakes were definitely made. But what I return to again and again is this: None of us get out alive. I once read a Raymond Carver story about a death being traced back to a pitcher of lemonade being made. If only that hadn't happen, none of the other events would have occurred, and that person would still be alive (a car accident? I don't remember all the details now). I can understand why my dad is thinking about it, though. He doesn't want to die. And he hears my mother running around all day talking about how she wishes she were dead.
Last night, when I was having my pity party for one, the doorbell rang. It was the guy who painted their condo. Twice. Because she didn't like the color. He got to know my dad pretty well, and he was shocked and devastated, so he came over at 9pm. My dad actually got up and hung out with him for awhile. Then the doorbell rang again, and it was the drug fairy with a cream to put under my dad's arms on his lesions, because it's red and sore looking. He can't feel it, though, because another side effect of his surgery is numbness. I rubbed the cream all over his lesions, and it wasn't as bad as I thought. I also removed his socks and rubbed the Bath and Body stuff on his feet.
Up until Monday morning, when he had his first bout with incontinence, I really thought that maybe the doctors were all wrong about how long he had. But Matt and I both think he is in the home stretch now. I cheated and read the Hospice handbook on what to look for at the end. The incontinence is a bad sign. The wasting is a bad sign. The potassium is a *really* bad sign. But we didn't really expect it to get anything else but worse.
Right now, though, he is sitting on the couch and he and Matt are watching the Jazz basketball game. I have a glass of Riesling next to me. Pat is gone, and the house is quiet. I can already see what people have meant, though, about missing the crazy. I think you just get hooked on the constand release of endorphins that accompanies situations of high stress. I almost feel guilty now, like with her gone, it's going to be *too* easy.
But I'll get over it.
Earlier today, a volunteer arrived and Matt and I got a brief break. We went and got some food at Wendys and then walked around for a bit, just kind of shell-shocked. We packed dishes for the kitchen, prepared paintings to be moved, and bickered back and forth with Pat. She figured that she needed a new bed, new chairs, a large couch for a small space, and she was absolutely living when I put my foot down and said NO. Matt got her a television yesterday at Costco that she will never be able to use and never watch, but maybe it's a small price to pay for just getting her out. But she has a $2K bed that she doesn't like because my dad researched and picked it out. It is a full-size, not queen, and it will fit, and it will be better for her myriad health problems, including her back pain. That is why my dad got it for her. She wanted a cheap Costco trundle bed and mattress. She likes to explain things to people.
"Well, I liked it for its frame. And this way, Ann (her sister) can sleep in it when she comes to visit."
"But a mattress is the most important thing about the bed. This isn't going to be good for your health, and you have to sleep in it all the time. Ann may come and sleep over one night a year."
We did that dance for awhile. When Matt and I got back from our respite, I took Pat to her hair appointment. I dropped her off, then ran to Subway and got her lunch. Then, I went to Bath and Body and got her some pretty soaps for her bathroom and some foot cream for my dad's dry feet. I got back to the salon, and she had convinced the stylist to cut her fingernails, then remove her old polish, then replace it. The woman didn't charge her, but I slipped her a tip on the way out.
I had the distinct privilege of sitting in a chair in a beauty salon and listening to my mother talk about what horrible people we are. Every once in awhile when she would say something truly bizarre "They only gave me one day to get out," "They say I have to be out tonight," I would pipe up, "You know, I can hear everything you're saying, right?"
Then she pressed me for what Matt and I had done. I told her, and so then the story turned into, "I got up at 5am to start packing as fast as I could because they want me out, and they went out and had a good time and left me to do all the work."
Yeah, walking around with Wendy's. We sure know how to have a good time.
We got home and she started in on all of her various complaints while Matt and I packed her knickknacks, four suitcases of clothes, many with the tags still on, a couple more boxes of clothes, then boxes of the contents of her drawers. There is no way this will all fit. No way. But sorting through it over the next few days should keep her busy for awhile.
This afternoon, Matt had to go up to Sunrise for last paperwork, and Burke and Lori (my uncle and aunt) came down from Draper, and my aunt Ann came up from Manti. Lori and Ann immediately swooped my mom away, but not before I stood up and swept my arm widely in front of me and said, "She is taking the bed downstairs. She can take any furniture in this house, but we are not buying her another piece of furniture!" And then I shook my finger in Burke's face and said, "And you're not buying her a bed!" And then I stormed out of the house with my coat to smoke a cigarette.
Burke came out and talked to me and we took a walk and talked and talked and talked. When Matt got back, we all took a drive (because otherwise, Pat interrupted us every five seconds by saying, "Not everything they say is true,") and discussed whether we should postpone the nursing home in favor of putting her in a detox unit. She is on a lot of medications. For years, Matt and I wondered whether it was the medications causing her dementia. Lori is convinced that Pat is mentally ill, but not that she has dementia or alzheimer's. We explained that we too thought for years that it was the medications, but we and the medical professionals are convinced that it's dementia. I told Burke, "This feels like hell, putting her in a nursing home, but detox just seems like it would be cruel."
Matt put it more cogently: "I am afraid it might kill her, and I'm not willing to do it just to satisfy my curiosity."
We decided to call her docs tomorrow and ask that they prescribe a regimen that will wean her down slowly, and we will see if there are any changes.
For years, Matt and I both wondered whether she would be different off the medications. But she won't be. And I actually came around to the idea of detox-- Burke said they would take her in a matter of hours-- but we decided to try the assisted living first. They make it sound like they are doing us a favor by not engaging us in a longterm contract, but it is really to protect THEM. Burke and Matt and I are all a little afraid they'll kick her out. But surely she isn't the worst they have ever seen. Right? And she is more of a pill hoarder than a pill popper. She doesn't like how she feels if she mistakenly takes Hydrocodone twice in five minutes, and we threw out 5 or 6 full bottles of it when my dad had his triple bypass. So, that suggests that she isn't taking them so much as keeping them. It's a security thing. Also, she breaks them in half. Matt and I both know people who have been pill poppers, and there is no such thing as breaking them in half or stopping at 2. So, she may not actually even need detox. I was going three days between fentanyl patches the three weeks we were out here for the heart surgery, and she didn't even notice most of the time. She didn't shake or sweat or puke either.
Burke and Lori offered to take Pat tonight to spend the night at their house. They loaded the back of Burke's truck with the suitcases, some of the boxes, the bed. My uncle Mark will come by with his truck tomorrow and we'll load up other furniture, other boxes, the paintings, small tables, dresser, nightstand. But Burke also volunteered them to move her in and unpack her because she is so angry at Matt and me right now. We accepted. We will end up going up there tomorrow, but may not have to have the long day we anticipated. Which is good, because as it is, we will have to find someone to come and stay with Dad.
Dad had some blood drawn yesterday. The nurse called today and said the meds they were giving him to bring down the swelling in his abdomen had spiked his potassium to critical levels, so we had to throw that medication out, start him on a new one, and "Watch him, because he could have a heart attack."
Matt and I had been wondering why he wasn't losing weight with his lack of food the past two months or so. Last night, I noticed that except for his torso, which is still distended, he has SHRUNK. In other words, he is starting to waste away from the cancer. He is just starting to have some trouble with incontinence, which horrifies him and puts him in a foul temper. I can't say I blame him.
Burke and Lori finally got Mom out the door, and I went back to sit with my dad and he said, "She didn't come back to say goodbye."
Burke and I had talked about that and decided that she should come down next week so we didn't have to do a final goodbye tonight on top of everything else. I asked my dad what he was thinking about. Matt put up a wall of family pictures on the wall in front of my dad's hospital bed, and often when we are sitting in there, we just sit and stare at them. I wonder if I will ever be able to look at any of these pictures again after this. My dad told me, "I am just wondering how this went so terribly wrong. How did they miss it for so long? How did I miss it? Did I even ever have a chance?"
A week ago, when I wasn't so exhausted, that would have tormented me. Now, all I can do is just nod sadly. It really goes back to when doctors put 7 stents in his heart. That led to him needing a triple bypass. That led to his cancer going unidentified and untreated until his finger required a partial amputation and he had 40 lymph nodes removed, all riddled with cancer. Mistakes were definitely made. But what I return to again and again is this: None of us get out alive. I once read a Raymond Carver story about a death being traced back to a pitcher of lemonade being made. If only that hadn't happen, none of the other events would have occurred, and that person would still be alive (a car accident? I don't remember all the details now). I can understand why my dad is thinking about it, though. He doesn't want to die. And he hears my mother running around all day talking about how she wishes she were dead.
Last night, when I was having my pity party for one, the doorbell rang. It was the guy who painted their condo. Twice. Because she didn't like the color. He got to know my dad pretty well, and he was shocked and devastated, so he came over at 9pm. My dad actually got up and hung out with him for awhile. Then the doorbell rang again, and it was the drug fairy with a cream to put under my dad's arms on his lesions, because it's red and sore looking. He can't feel it, though, because another side effect of his surgery is numbness. I rubbed the cream all over his lesions, and it wasn't as bad as I thought. I also removed his socks and rubbed the Bath and Body stuff on his feet.
Up until Monday morning, when he had his first bout with incontinence, I really thought that maybe the doctors were all wrong about how long he had. But Matt and I both think he is in the home stretch now. I cheated and read the Hospice handbook on what to look for at the end. The incontinence is a bad sign. The wasting is a bad sign. The potassium is a *really* bad sign. But we didn't really expect it to get anything else but worse.
Right now, though, he is sitting on the couch and he and Matt are watching the Jazz basketball game. I have a glass of Riesling next to me. Pat is gone, and the house is quiet. I can already see what people have meant, though, about missing the crazy. I think you just get hooked on the constand release of endorphins that accompanies situations of high stress. I almost feel guilty now, like with her gone, it's going to be *too* easy.
But I'll get over it.
Oh, Jen. I'm so sorry for what you're going through, but also very much in awe of the way you're documenting it. People will thank you for this.
ReplyDeleteThinking of you,
Tom U.
<3
ReplyDelete