About Me

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I am mundane and magical, Silly and serious. I am an underachiever who suspects that someday in the eternities I may yet blossom and even fruit. I am a collector of spirits and essences, a studier of mood and nuance.I have many many faults and yet I've always been loved. I am a good friend, but I will let you go if you so desire. I believe in Somewhen. I laugh easily and cannot often cry, which I know is a Flaw. Like You, I am a work in progess.

Thursday, October 5, 2017

I was getting my mom dressed for dialysis and she asked. "Where are you going?" I said "You're going to dialysis" She said, "Oh, I thought I was done with that." I said, "Did you think I would just take you off dialysis without talking to you about it?!" She thought the dialysis crew was kicking her out. I assured her that that was not the case, that she would be the one to determine whether she would continue with dialysis or not. She said, "but what about what the nurse said?" I told her the nurse was telling me that her health has declined in important ways and that she expects it will decline more and quickly. I went over this in more detail with her. I felt s bad that she thought she was just done. I suggested we have someone come to talk about hospice and that I wasn't suggesting she choose that now, but there might be a time when she feels too bad to want to go to dialysis anymore and she should know what hospice is. I asked her if she wanted to set up  an appointment to have someone come to talk to her about it. She doesn't now. I asked her if she didn't remember that I told her that when I went for lunch from now on I'd be going home to pick Bruce up so he could help her into the car since I can't do that anymore. She didn't remember. She thought she was at the end of her rope. She's probably been very scared but she's been sweet and stoic. I think she was greatly relieved. I told her again that to save any mobility she has left she would need to physically do things and that I didn't know what she could preserve or maybe get back. She doesn't have the oomph to exercise though, so I think her nurse is right about decline. When we sat her up today she sounded very congested and she hadn't sounded congested at all when she was laying down. This makes me think she could contract pneumonia. They weren't too concerned about it at the dialysis center. Our lawyer came to visit her at dialysis today. He said he thought she looked better than I described. They did labs today so I should have more information when I get those results. I also need to get a lab set up to check to see if the C-diff is really gone this time. Bruce just makes my mom happy. I am so grateful for him. And it's hard for him to leave the house, but he will do it for her.

In house news, the windows will be here tomorrow. And I picked out the granite (it was less expensive than the Corian I was planning on) and the flooring and the tile for the kitchen. Clark got the fridge and the sink, so we are progressing on the house. Clark also offered to help with my mom and because Bruce is agoraphobic and I'm afraid he will hurt himself helping my mom I think we should take Clark up on the offer if he's there on dialysis days.

Tuesday, October 3, 2017

The dialysis nurse asked to speak to me privately today. She said from what she has seen in the last 2 weeks (my mom has lost more than 12 pounds, is increasingly lethargic and is very physically weak) that I can expect a rapid and serious decline in her condition. The nurse has been a hospice nurse so I am guessing this is probably accurate. Mentally my mom is still very much here and I don't think she's quite ready to die. I feel so bad for her.

Thursday, September 28, 2017

So, I am feeling terrible. Today was a dialysis day and it went ok till it was time to go home. I'm already wheeling my mom out and trying to tow her oxygen and balancing a pile of belongings like pillow, blanket etc. I can get her out of the car pretty efficiently but in, especially after dialysis is a totally different story. She has little muscle tone. She cannot stand independently, she needs a LOT of support. She cannot walk. I had a gait belt on her today because on Tuesday when I tried to get her in the car she ended up laying on her face butt hanging out of the car, legs out of the car and unable to get in any way vertical. Fortunately, a taxi driver who had seen us in that state once before saw us and came to help for which I was deeply grateful. I sent him a card and $40 this morning. He had suggested I stand in front of her and walk her to the car, have her pivot and sit down on the seat and then sort of spin her in. I tried. What happened is that as soon as she was even in front of the car door opening she lost all power and started going down. It's like she sees a surface and her body just lays down. I can't pick her up (describing this to Bruce he says things like "Can't never could" and I chew my teeth in an effort not to physically attack him) So today, no one in sight to help she has her face on the car seat but she's mostly out of the car. I am screaming that I can't pick her up ad she needs to try to sit up so I can try to muscle her into the car or at least somewhat onto the seat. She can't and she's very sensitive to my screaming which is sheer panic because i feel I am going to have to call 911 to get her in the car. I know my mom. she is feeling guilty and like there's something she should be doing, but she CAN'T and somehow I manage to get part of her butt on the seat then into the car but she is not erect and I have used all my strength and right now I am very sore and know I will hurt worse in the morning. All the way hme I am apologizing to her bu that doesn't do a lot of good. she says she will get better which breaks my heart. I say we need to schedule a van to take her in her wheelchai. She adamantly does not want to do this. But if not one or both of us is going to be seriously injured or die. I can see having a stroke in the fucking parking lot.

Wednesday, September 27, 2017

Today was lawyer day. Bruce and I made out living wills and wills. It was a rather tense and emotional day. Hard to think about my death.

Tuesday, September 19, 2017

Oxygen

My mom now has oxygen at 2 liters per hour. Her Dr wrote the prescription but the company providing the oxygen says there isn't enough documentation to bill Medicare. So, hopefully documentation will be made (Every home health care nurse and the nurses in the hospital all ask if she uses oxygen at home- her level was in the 70's at the hospital when she went to get her carotid catheter replaced. The nurses could get it into the low 90s or high eighties by chanting " Smell the roses, blow out the candles" But she naturally breathes very shallowly so it isn't a level she will sustain. $150 a month till documentation is provided that she needs this. She needs it and fortuately can pay. Jeez!!!!

Thursday, September 14, 2017

Stress

My mom got sent home again from dialysis. Last time there was a clot. This time there was too much variance between her arterial and venous pressures and Celeste, her nurse, tried many things to at least squeak her through today, but it didn't work. So now I'm waiting for someone to call me to tell me when my mom can be scheduled for surgery to replace her carotid catheter. I hope today because she needs dialysis to stay alive. She also is going to need surgery to improve her fistula which is not maturing properly and once that is corrected (hopefully a second surgery will do the trick) that will need more time to mature.

My mom has been so sweet and has been trying so hard to do all the things she's been told can help her live and this is just a kick in the teeth.

Sunday, September 10, 2017

40th High School Reunion

Not long ago I got notification of my 40th high school reunion. I was surprised to find I wanted to go. I'm an introvert and while I am curious about the lives of more people than I ever interacted with, well, I never interacted with them. I didn't even attend my own high school graduation. So yes, I was surprised. I thought about this and I think much of it has to do with the fact that I NEED a vacation. I'm planning to go for at least 1 or two weeks.

When I told my mom that I would be going, next June, her first question was if The Ghost was going. At that point I didn't know, but it turns out he is not which pretty much guarantees that I won't see him again in this life. I truly doubt I'll go to any 50th reunion. But that's ok. It would have been hard on me and perhaps awkward. I've made plans to visit my friend Grace and I am going to rent a cabin and I've invited another friend. She can bring her husband if she wants to. I hope to see cousins and maybe another couple of friends. I invited Bruce and my mom but neither off them want to go. I'll have to make arrangements for nursing care for my mom and food preparation and stuff and transportation to and from dialysis. But I'm really planning to go. And I'm really planning to take some time to just be. Hell, I may even go to Disneyland or something. I will go to thebeach (Grace lives in Costa Mesa)

The reunion is actually going to be in Mission Viejo at a hotel and I've requested 3 nights there. Then I can stay with Grace and I am looking for a good cabin in Crestline or some town nearby in the San Bernardino mountains.  Something with a fireplace and not all too modern.