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.

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!!!!

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.

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.

Updates on the Landscaping

We have moved to the inside of the house now. The front room is being worked on. I dread the kitchen, bu I am also very much looking forward to it. The landscaping is mostly done. I have a bunch of flowers and shrubs that I thought I was going to plant today. So far it hasn't happened. I als planned t clean the chicken coop. Hopefully I will do something out there!

Saturday I had friends over and we made a fire in the firepit and roasted weenies and made s'mores. I haven;t toasted a marshmallow in YEARS but mine came out perfect! It was fun. Dayan brought River's acoustic guitar and played a little. Jetty Lee bit Kaige but that was the only sour note. Everyone had fun.

Here are some pics of the yards and the chickens

Aint Bea Pookie Pi and Glory

Vim, Aint Bea. Pookie Pi and Glory

Dusk and Rudder

 Vim (white Leghorn in front), Dusk (to the left), Glory, Pookie Pi, Aint Bea, Rudder

Vim (she's my favorite)

Update on My Mom

Today is Sunday 09/10/2017.  My mom is having a good but quiet day. I am having a good but quiet day. Many of the past days have not been good or quiet. First of all, C-diff.... Oh NASTY NASTY bacteria!!!! And very contagious although, miraculously, neither Bruce nor I have succumbed. And I wasn't wearing gloves for the first bit of it. C-diff causes terrible, incredibly stinky diarrhea where the sufferer has no control whatsoever. We went to a three part washing system. An outside squirt off, followed by 2 runs through the washer in hot water with bleach. C-diff can live on surfaces for 90 days. Alcohol will not kill it. It laughs at hand sanitizer. Hot water and soap dilutes it to something that may be innocuous. Only bleach kills it. When I got the diagnosis I was required to call my mom's home health care service and her primary Dr's office. People in contact with her wear protective clothing. Now, my mom is at this point dialysis dependent. She is not passing any urine. She would die without dialysis. So I have to take her and she is on the machine for at least 3 hours and 15 minutes, plus travel time. I've felt so badly for her! Everything is covered with chux. There was no stopping the virulent diarrhea. You could smell her from a great distance and I couldn't change her till I got her home. Before I learned about barrier cream I was worried she'd end up in the hospital just from sitting in the irritating mess. It was awful. Of course she's been dehydrated. Most people have fluid removed during dialysis, my mom has been getting fluids. And she lost a lot of weight. Most diabetics have a strict diet with little carbs or potassium. I've been told to feed her whatever she will eat. But C-diff also kills your appetite. She doesn't want to eat. Even though we are almost done with a 2 week course of very strong antibiotics 3 times a day (which have been effective as far as I can tell) she still doesn't want to eat or drink much. And she's supposed to have potassium, so I am begging her to eat foods she used to like, like avocado or bananas. She isn't hungry. Her Dr gave her Marinol (synthetic THC) to quell nausea (she's had nausea badly) and to stimulate her appetite and it seems to have helped for the nausea but hasn't had much effect on appetite. I wonder if natural cannabis would be better. Her Dr wouldn't say so directly but he did say there is a dispensary in nearby Mesquite NV where marijuana is legal. I think about going.

I'm still shocked at my mom's loss of functions. She's still mentally all there but she is losing physical abilities so fast it makes my head spin. She can't stand alone. Her physical therapist, who I really like because he can motivate her to do things I cannot suggested she have a medical recliner so that she would not be laying down all the time. Her oxygen level is in the 82-85 range which is not good. Sitting up, even in a recliner would help. She has used it twice and once was briefly. He tried to get her to stand and march in place Friday. She could only stand for about 45 seconds and forget marching. This was with him spotting her. Some of the CNAs who come to shower her don't seem to realize that she can't stand or walk. The one who came Friday did not call beforehand and I had waited till 4 before I assumed no one was coming and went out to do errands. That was a horrorshow. One of the CNAs, Melissa is good with her. Takes her time. Puts lotion on my mom. Sanitizes the shower after and dries my mom's hair. Makes good and sure the site on her chest where her catheter is won't get wet. the oe on Friday did none of this.

My mom has remained grateful and funny and uncomplaining though I wish she would tell me more about how she feels so I can maybe do something about it. Some days she is so weak and tired she doesn't want to go to dialysis and I have to stress to her that not going is not an option unless she is ready for hospice. She tries so hard to cooperate. It's heartbreaking.

She really likes the flannel shirts Bruce donated to her cause. Dialysis makes you cold and she is under heaped blankets at home even when it's over 100 degrees outside. I bought her some new flannel shirts and she likes those. I also got her and electric throw to use at dialysis but she wont use it because she's afraid of a bout of diarrhea. Fortunately she hasn't had that happen for awhile thanks to the antibiotics. I can usually get her home before she has to go and it's much less smelly and of a better consistency. I'll have to take another stool sample in to see if the bacteria is eradicated, it might not be even after the two weeks  in which case the Dr will either up the strength or go to an even stronger antibiotic. It can also come back. Nasty bug!!!!!

I feel like my mom is tolerating the dialysis better. it doesn't wipe her out as much as it used to. But I am still very concerned about how she sees her quality of life.

She's still very funny. We've been having work done on the house and the other day I told her that Bruce has been working his ass off. Without pause, she retorted, "What ass?" I had to tell him my mom is scoping out his ass.