Family members and friends received this email from my mom yesterday evening.
This might be tacky, but sometimes it’s reality also.
Less and less function. Can’t stand, walk, or use pot on own without tremendous help. Is it disease progression? They think maybe. No one knows for sure. Doctor won’t order physical therapy, due to fragile bones. I am miserable, miserable. Poppin House, should we need, is $195 day (not free after all). Ron says no nursing home, but beyond his capabilities, I fear (my words, not his). They recommend catheter to help, but then you have a risk of UTI infection. Will use “Depends” in meantime, I guess – what else? I used to pee a lot, but now hold and suffer, in addition to all the cancer pain.
If I can be comfortable, I want to live longer. If I can’t, then, no. I am at hell’s door, it feels like. Help……………………
I didn’t check my email until right before bed, so I didn’t get this until after 10pm. I quickly called my mom, who was in the process of trying to get to the toilet with the help of Ron, so she said she’d call back. When she did, she was in tears. Ron had dropped her… because she has absolutely no control of her weak, fragile bones, it’s really hard to try to pick her up and get her anywhere, including the toilet. So I went to bed not knowing what we would do…. she said for me not to take the day off of work though.
I got up this morning, went to the gym, and drove to work like usual. But I didn’t feel right doing it. While I love my job and am usually fine separating work from everything going on at home with my mom, I knew we needed to figure out a plan for my mom. She can’t continue like this. So, I called my principal, got ready for my sub, and came to my grandma’s house (where my mom is still living).
Hospice was here this morning and put her on bedrest. That means nobody can get her out of bed except the Hospice nurses and doctors. They put in a catheter, so now we eliminated the need for her to get up to use the bathroom (even though the hospital toilet was next to the bed, it was still too hard to manage). We needed to decide whether we keep her here or bring her to the Poppin House (which is Hospice). We still have all of the race money that we raised, but it would only pay for a month of the house…. Also, it’s much more cheerful at my grandma’s house, and she has the constant company of my grandma, plus Ron is always around, and it’s close to our house. It would be much more difficult for her to have visitors at the Poppin House. We decided she would stay here. Hospice is bringing out a new hospital bed for the living room (the one in the bedroom isn’t paid for by Hospice, and apparently they have to pay for your bed when you’re in their care). She’ll be in the living room for the remainder of her time (unless things get so bad we have to move her to Poppin).
There is a lot of care that goes into taking care of my mom, especially now that she’s on bed rest. Before she could use her motorized wheelchair to go into the kitchen and heat up food, but now she can’t do that. Someone will need to be with her nearly all the time (and my grandma has Alzheimer’s so we can’t depend on her for care when nobody else is around). Ron can do it all all week, plus Hospice comes out Monday through Friday. Ron sings on Friday nights and once a month on Sundays, so I will be with my mom taking care of her Friday evening/nights. I’m working on arrangements for my own boys, as I can’t have them here with me while I’m tending to her (especially in a house that is not kid friendly or toddler proofed).
I strangely feel calm and okay during all of this. I’ve been mourning and grieving already the last few months and I know what is coming. It’s a slow enough transition that we’re just taking it as it comes. Then I begin to think I’m a horrible person for actually dealing with something okay. I feel like I should be crying all the time. Don’t get me wrong, there’s plenty of crying and bad days..but there are also good days in there, which just feels wrong.
To everyone who donated to my mom or participated in the race, we want you to know that the money is still very appreciated and will be used for her. We have plenty of medical bills adding up, and there will probably be a time in the near future where we need more help than just family, and we’ll have to get nurses to come in (which is expensive). But for now, while we can manage with family, we are going to. If she does end up in the Poppin house, we need to conserve as much as we can now.