It would be nice to not still own this domain (if anyone out there needs it, let me know and I'll transfer it over eventually), but Dad's had a pretty aggressive recurrence.
Doctors still think it may be resectable, so they (and Dad) want to try for a surgery as soon as the doctors can schedule it. Surgery involves the ENT surgeon as well as a brain surgeon, so I guess scheduling is tricky.
In the mean time, David and I have called in Palliative Care (which is not hospice) to help manage dad's pain and have a team that sees him regularly at home because I've not been super pleased with the admin/communication side of his current oncology team.
Also, Dad isn't comfortable with me taking care of him (though I clean out his affected eye and change bandages multiple times a day, which I am grateful to be able to do), but I am an anxious mess with him moving up and down the stairs and trying to manage sleep with the restlessness and pain. I'm hoping the palliative care team will be better at overall communication and looking at the big picture and helping sort out accessibility issues -- and perhaps convincing stoic Dad that it's okay to take pain meds when he hurts.
I'm also hoping the social worker can help assess and help us find a housecleaner or meal service for dad (I've hired lawn care for him).
I'm managing, but kind of only barely. I'm holding it together with antidepressants and staying busy, but I feel like I'm not doing a good job taking care of everyone, Dad included. There are not enough hours in the day, and dinner is a surprise pretty much every day.
We are desperately trying to make an accessible walk-out apartment for dad in the basement of his house, which has required me to learn how to drywall (which I'm awesome at, by the way). I'm hoping to clean and paint a lot of concrete this week and move a bed and some furniture in a place where Dad can have some privacy without stairs. I'd also like to be living in the same house, which means I have to paint a lot of floors to make it inhabitable. I've also got a 9-hour gig tomorrow and then piano lessons on Wednesday and more employment obligations.
Several people have asked if they can help, but then aren't available when I do ask, which makes me not want to ask again because I feel like I'm bothering people. I also know everyone has their own crap to deal with. I'm just so angry for my dad that this nonsense has happened when he spent the past 3 years caregiving for Mom.
Anyway, if anyone does want to do something, or visit Dad, or bring him a beer, please text me first. He's sleeping a lot, but loves his friends. If anyone else wants to bring dinner to me and the kids, or a Bambi Burger to my dad, that would be an incredible help. We have eaten frozen pizza or butter noodles or ordered Grubhub more times than I care to admit.
Graham just did a play, where he had 3 pages of Shakespeare text to speak ... he was delightful, dramatic, and adorable. He made everyone laugh a few times, and then he made everyone cry when he was murdered violently onstage (spoiler alert, but really, are there any spoilers in a 400-year-old play??). Kenny went to the show opening night, though it was past his bedtime. Graham was amazing.
Doctors still think it may be resectable, so they (and Dad) want to try for a surgery as soon as the doctors can schedule it. Surgery involves the ENT surgeon as well as a brain surgeon, so I guess scheduling is tricky.
In the mean time, David and I have called in Palliative Care (which is not hospice) to help manage dad's pain and have a team that sees him regularly at home because I've not been super pleased with the admin/communication side of his current oncology team.
Also, Dad isn't comfortable with me taking care of him (though I clean out his affected eye and change bandages multiple times a day, which I am grateful to be able to do), but I am an anxious mess with him moving up and down the stairs and trying to manage sleep with the restlessness and pain. I'm hoping the palliative care team will be better at overall communication and looking at the big picture and helping sort out accessibility issues -- and perhaps convincing stoic Dad that it's okay to take pain meds when he hurts.
I'm also hoping the social worker can help assess and help us find a housecleaner or meal service for dad (I've hired lawn care for him).
I'm managing, but kind of only barely. I'm holding it together with antidepressants and staying busy, but I feel like I'm not doing a good job taking care of everyone, Dad included. There are not enough hours in the day, and dinner is a surprise pretty much every day.
We are desperately trying to make an accessible walk-out apartment for dad in the basement of his house, which has required me to learn how to drywall (which I'm awesome at, by the way). I'm hoping to clean and paint a lot of concrete this week and move a bed and some furniture in a place where Dad can have some privacy without stairs. I'd also like to be living in the same house, which means I have to paint a lot of floors to make it inhabitable. I've also got a 9-hour gig tomorrow and then piano lessons on Wednesday and more employment obligations.
Several people have asked if they can help, but then aren't available when I do ask, which makes me not want to ask again because I feel like I'm bothering people. I also know everyone has their own crap to deal with. I'm just so angry for my dad that this nonsense has happened when he spent the past 3 years caregiving for Mom.
Anyway, if anyone does want to do something, or visit Dad, or bring him a beer, please text me first. He's sleeping a lot, but loves his friends. If anyone else wants to bring dinner to me and the kids, or a Bambi Burger to my dad, that would be an incredible help. We have eaten frozen pizza or butter noodles or ordered Grubhub more times than I care to admit.
Graham just did a play, where he had 3 pages of Shakespeare text to speak ... he was delightful, dramatic, and adorable. He made everyone laugh a few times, and then he made everyone cry when he was murdered violently onstage (spoiler alert, but really, are there any spoilers in a 400-year-old play??). Kenny went to the show opening night, though it was past his bedtime. Graham was amazing.
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| 6-yr-old Graham was in Macbeth last week. Dad declined a May 7 surgery because he wanted to see his grandson in a Shakespeare play that didn’t open until May 9. |
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