California

I'm leaving for California for a couple of weeks early in the morning on June 8.I'm going to my 40th HS reunion, I will see friends and family and spend a few days in my beloved Crestline. Trying to get the bills all paid and supplies in and everything ready to just go. I notice I am stressed and short fused.

Hospice

Well, I got sick and even though I wore a mask I passed it along to Bruce and to my mom. I'm still coughing a lot, but mostly functional. At the height of it, which lasted about a week, I had to sit down between even simple tasks to tend my mom to try to catch my breath. All I really wanted to do was sleep. Bruce smokes and he is having even more trouble than I did. My mom, well she decided she was done. She pushed her call button twice the other night and told me plainly, clearly and decisively that "she wants to go to sleep and not wake up" So yesterday morning I called hospice and she has started the process of transitioning from this world to the next. I think she could have lived years longer and Bruce and I would have been happy to care for her but she doesn't want that. I skipped the morphine last night because I wanted to make sure this is what she really wants to do and she said she did this morning. Last night she had a blessing from elders in her church. I hope it gives her peace. I am overwhelmed and sad and just full of thoughts and questions. And I'm tired. Not that I can sleep but hospice here is very different than it was in FL. There I had 24/7 help and support. There was a CNA all day and a nurse all night.Right there. Here, I've had nurses drop off med, take her vitals and this morning I had the nurse help me administer medication, change her sheet, her diaper and her blouse but then they leave. They are just a call away they say, but it is diy here. I'm sure I will adjust and it probably won't be a long time in any case. I can't get my head and heart around the fact that my mom is going to die

I haven't updated for a log time. I've been exhausted. My mom got her carotid catheter out, which is good from a standpoint of less risk of infection but means she will be on needles from now on. Her numbers are good but she keeps saying (just as we are leaving) that she doesn't want to go to dialysis. She knows she'll die if she doesn't. I told her if she tells me she doesn't want to go the day before and the day of dialysis I won't take her, but that this is not a decision to be made lightly because even if she changes her mind and wants to go after a missed day or two, her body will be affected and she's pretty fragile. I told her I understand that she says she's ready to die but that right now she feels pretty normal and her mind is still there and I am thinking the process of dying will not be very pleasant. So far, she's been agreeing to go to dialysis.

She was supposed to get her hair done today and have a shower (I pay Clark, our big, kind neighbor to shower her) $60 a pop which he didn't ask for but which seemed fair to me given that the CNA services would charge $35 for a bedbath. I can do a bedbath. It is not nearly as satisfying as a shower. But Clark didn't get back to me today, s another day it will be. Kim asked to change her hair to Friday (she's going to have blue hair, not the usual little old lady blue hair, but kind of punk. I hope she likes it when it gets done.

The house still isn't finished. But it's coming along. Garage door and opener ordered, estimate for gates accepted and scheduled. I found a lady who will tole paint our front door. I'm excited about that.


My grandma's dishes. Vernon Ware Gingham. My mom bought them for her in maybe the 1950s? I have good memories of these dishes. I think of expanding the collection. It makes me think of more gracious times

Thinking of having built ins added for the trash and recycling where all those vacuums are now...

I remember folding napkins for the senorita's skirt

The front room. This is my taste. I wanted it to look like a cabin. I guess I am desert chalet boho

Tokens from friends are all over this room

I love the lamps. They are made of natural materials, the leaves are real and the lighting is perfect for evening tv watching

This is the Sunroom. I told Bruce he could decorate it with the caveat that it had to remain a usable dining room. It's not finished (no room is) He's going to make a puzzle wall of his art. The woodburning stove (which I didn't take a picture of) need to be painted black and the hearth fixed. We are on blue clay up here and we've had to have extensive repairs to foundation cracks. The tile took forever and it was way more expensive than we thought it would be. The hearth has a big crack that needs to be fixed. Also the chimney on the stove is only single thick and it has to be triple thick 

Bruce spray painted his filing cabinet. I think it looks cool

Vertebrae chairs. Stiff, but stylsh

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.

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.

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.

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.