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.

I write to vent. But I think it is inappropriate to write about this particular day. But I am so astonished and worn out and concerned and hoping with all my heart I can be patient and cheerful and empathetic.

Bare Bones Update

I'm very tired and very worried.

My mom was in the hospital from Monday evening till Thursday afternoon. She should have been in there earlier but I am a hospital neophyte. And I intend to stay that way. I told her I will only take her to the hospital again if she asks me to. The staff members were all very very nice. And efficient. But I felt their the Dr's and the Palliative care people's subtle emphasis on End Stage Renal Disease. My mom did choose to start dialysis though, and that entailed having a carotid catheter installed as her fistula isn't seasoned enough to use yet. She was a trooper. But she has been so weak and so nauseous and she wasn't eating or drinking. This morning I was so excited because she ate some oatmeal and drank some cranberry juice, but it gave her diarrhea afterwards. I have learned to change briefs pretty efficiently. And I am so glad she is letting me, both for hygiene reasons and because she is so weak I am afraid she will fall. She's in good spirits. She missed her tv and Toby and the no-hospital feeling of home. Bruce has been so good to her, for her and with her. And she is grateful for everything we do.

Tomorrow I attempt to take her to dialysis at the regular center for the first time. I hope it goes well. I'm really anxious for them to change the dressing on that port as I have no supplies to do it and haven't been taught and I am terrified of it massively bleeding. I will remember to take a blanket. a pillow and have her in a buttoning shirt.

She had an assessment at the hospital by an occupational therapist and a physical therapist. They were optimstic that she could regain strength and function. I certainly think she could if she could eat and drink. It worries me gravely that she is eating and drinking almost nothing. The home health care nurse came today to get those services rolling. I am grateful. If she needs labs done between dialysis days they will be able to do them at him. They will be able to administer IV fluids. They can assess whether or not she will need oxygen. There's a lot they can do and I want them to do it while we see if dialysis can give her a decent quality of life. If it doesn't, then we will look toward hospice. Quality of life is more important than quantity.

Back Yard as of July 26, 2017

The patio is almost done. I've ordered 6 glider chairs and 6 side tables. Bruce put together one of the glider chairs, the instructions were terrible but he did it. He wonders why I am getting so much seating. I want the back yard to be able to comfortably accommodate some people. He wonders who.

Tomorrow Dan and Clark are going to work on the water feature. I wonder if the firepit is usable now. I could go for a fire!

Peace Today

Because I make awesome hotcakes. but seriously thankful because that negative stuff wears me out and especially when applied to my mom's situation which seems way too tenuous to want to waste precious time with it. I think Bruce helped, he talked to her companionably for a long time last night.

Mama Drama

Having a fight with my mom an it is totally draining me. It's also making me feel guilty, and as if I should not speak bad truth to my MOTHER who is old, infirm and waning. However, that is not what I did. The fight was about the car she gave to my friend Grace because a) she could not drive it and B) my alcoholic, unlicensed, uninsured nephew refused to give her her key. At the time I told her she could have the car disabled, have it taken to a junkyard (you should have seen what a mess it was) or she could give it away. My friend Grace offered to take it. My mom signed the title and we had the car towed, pronto. While my widowed sister in law screamed that it should be hers or Corey's.... The whole point was to do it fast before Corey had a wreck possibly hurt or killed someone and got my mother's whole estate taken from her. But my mother felt it was too fast. Did she want the car? Could she drive the car? It would have been a done deal, except that when Grace tried to get the title changed to her named the DMV told her there was a lienholder on the title, so we had to contact the credit union it was financed through and get them to take the lien off. I knew my mom had paid off the car, it was a 1997 Camry. She had owned it free and clear for YEARS. But she was miffed with the speed with which we had acted and the credit union had become another credit union and blah blah blah. I tried several times to resolve it. I got nowhere. Meanwhile, Grace had taken that car apart and cleaned it thoroughly and gotten it into as much running condition as she could without driving it. A LOT of work and Grace is a skilled worker. My mom has for some reason labelled Grace as her enemy. I cannot fathom why. When her wreck of a house had the burner of a fairly new electric stove burning on HIGH for MONTHS Grace was the one who went and turned the thing off. Not the nephews. They are lucky the house did not burn down. I think my mom is jealous of Grace and it makes me sick. Anyway, we were getting notices threatening a lawsuit because the car, still on my mom's name, was not registered. It was a fiasco. I did not have the time or the know how of how to resolve it so I finally resorted to contacting the lawyer (who my mom has met like 5 times in her life and while he is a nice guy and I like him he makes $230 an hour and she has amended her trust to give him his outstanding student loan-currently $60,000.) But she objects to me resolving the matter and she objects to me involving the lawyer (on the basis of money mind you) Anyway I did, after a year, resort to resolving it and his secretary (Notary public) came by yesterday with papers for her to sign. She knew the lady was coming but she is further mad that I brought her into her bedroom (it's hard for my mom to get up and about) Also, papers to resolve this issue were not the only papers she brought, the lawyer, unbeknownst to me though he had written me an email mentioning it but I didn't read that till later) sent durable power of attorney papers naming me as her durable power of attorney. I had no idea. Now my mom already feels she is losing control. I have wanted durable power of attorney because it would make acting on her behalf so much easier but this was just sprung on her. Shocked I asked if that was necessary and the secretary said it's just somethin people sign in her situation. That's disingenuous. My mother said to just give it to her and she would sign it. And she did. But we've been arguing and she's been pouting ever since. Thing is, my mom is no angel. When she said, "I don't trust you" I told her flat out I had less reason to trust her than she had to distrust me. I asked if she wanted to get into it. She said she did so I started ennumerating things she has done to me. The last thing i want is contention but I am not up for installing her on a pedestal and kissing her ass either. Nope. Just not. Even if I landed on the street, which I easily could. So today has been an unpleasant day. I don't know how much longer this situation will last. To me it's just plain stupid and self defeating. she refused breakfast this morning (I did test her blood sugar and it was 235 so she may have eaten somethig in her room) And I tested it again and it was 166 in the afternoon so my fear of low blood sugar reaction was unfounded. I brought her dinner and just left it with her and I believe she ate it. but good grief! WHY all this drama?

4th of July, 2017

I was about to go bugfuck crazy. I needed some fun. So I messaged my friend Rebecca and we decided that she and me and 3 of her kids would go have a meal and go bowling.

Now, I probably haven't been bowling in close to 20 years. I sure haven't been in the 16 years I've been involved with Bruce, though I used to beg. But, Bruce's dad, at some point in quite a varied career path was a professional bowler and Bruce was a good bowler (in the 200s)  He SAYS he won't go because he cannot smoke in the alleys anymore, but I think it also has to do with going with a person whose good bowling days are in the 60s.

The last time I remember bowling I was sick as a dog. But I was very happy because I was on a roadtrip with Miles and we were in Moab. We'd been to Mi Vida  restaurant on the top of the bluff (long since closed) It was an upscale joint. I was so sick I only ordered French onion soup and I remember the stretchy, rich cheese. Miles ordered something with capers and when it came the look on his face was so hilarious I will never forget it. I was so dang sick that things seemed hallucinogenic. Despite that, I was the one driving. And damned it I didn't see myself run a red light right as I ran it. I was very surprised and upset, but not as upset as I was when I noticed the police car right behind me. As I was getting my ticket Miles was cracking jokes which made things worse in my opinion but sick as I was and embarrassed I could not help thinking the man was funny. We proceeded to the bowling alley and I bowled my usual dismal score (I average about 60) but I had a lot of fun. As we were leaving the proprietor came running out after us. He said we hadn't paid. Now I thought we had, I've never stolen anything on purpose. I paid him out there and was further embarrassed. That was one funky illness! I don't remember getting back to our motel.

Anyway, the bowling today was fun. We went to Fiesta Family Fun Center and shoe rental was free because of the holiday. I wasn't the worst in our group, but I sort of felt badly that I wasn't. The high score was 99, so we all sucked. But happily.

Now I;m about ready for bed and should go there and grab some sleep as I need to be up at about 4 am to get my mom to the hospital to check in at 5:15. I'm sure fireworks will have me up way past midnight. I'm worried about the surgery. I think it's pretty minor, it's outpatient, but my mom will need to protect that arm for the rest of her life and it's going to be very fragile. She has to go to her nephrologist the next day.