While photographing some dying palm trees last week I looked down and saw this rather odd shadow. Love the hat! I'm working on a portfolio of palm trees, after all I do live in the land-of-palm-trees. Isn't it a good thing that shadows aren't actually the same size we are?!?!I'm beginning to think that I should have named this blog MIA. Every morning my first thoughts are about what I'll blog about and every night I become frustrated that I didn't find the energy or time to follow through.
I wrote on my other blog that we were going to Loma Linda for a five hours kidney transplant evaluation. They lied! It was over six hours of meetings and discussions with nurses, a doctor, coordinators, dietitian and financial people. The upshot is that the financial stuff is in place, phew! Medicines can run in the thousands each month and once a transplant occurs the meds need to be taken for the rest of ones life. The diet won't be as restrictive as the one Stacy has been on for the last 7 years, but I wasn't ready for how much weight she might gain from the anti-rejections meds so sugar intake needs to be closely monitored plus, one of the meds can cause diabetes if the sugar intake is too high! Yikes! But she'll be able to eat foods high in potassium like potatoes and tomatoes which I could live on! And she can drink more than 1/2 cup of liquid a day. A low salt, low sugar, and low fat diet seems to be in our future.
I think that Stacy's father was surprised to hear that a kidney transplant is just another way of living with renal failure and not a cure. Once your kidneys go life as you know it is pretty much over. He seemed to believe that she'd get a kidney and be free of doctors etc. Not so. The first three months after a transplant one is closely monitored for possible signs of rejection that most often occur if an infection is present. No visitors or leaving the house for 2 months! Fun! Directly after a transplant there are twice a week visits to the hospital, 2 hours away, then once a week, and finally once a month. At some point there is only a twice or once a year visit to the hospital. But monthly labs need to be taken by the local nephrologist who keeps tabs on BP, weight gain, and signs of diabetes along with a myriad of other things.
Stacy and I met with a transplant doctor whose main concern is that Stacy could go into a seizure induced coma and might miss her scheduled meds which could compromise the new kidney. After much discussion he decided that the likelihood of that happening very often is almost nil. The other concern is that her bladder no longer functions so one of the tests that is required it a miserable one to determine what percentage of her bladder still functions. Then there is lab work, heart tests, mammogram, pap smear and on and on. We thought we had the full list of tests that she needs but in the mail yesterday was a revised copy that sent me into hysterics! I had just about figured out how to make all of the appointments at Eisenhower Medical Center which is about 40 minutes away when the new list landed with a thud in the mailbox. The transplant team prefers that all of the tests are done at LLMC but gave us a break due to the driving distance. After I ranted and raved for awhile, which most likely stirred up the flu-like FM symptoms I've had since 9pm last night, a brilliant thought came out of the air. Phone the nurse coordinator at LLMC for help! We might end up going to LLMC for some of the tests, but at this juncture it might be a blessing!
I've already run into a couple of snafus making appointments. The orders weren't correctly written by the nurse at the dialysis clinic, no diagnosis on them, so those need to be redone before I can proceed scheduling the tests. And I haven't been able to find a dentist. I might have a GYN that will see Stacy. I have an appointment on Tuesday to see one so I'll ask.
In the meantime I've had some interesting days figuring out strategies for dealing with Alzheimer's. Mom has taken some falls, balance problems? and earlier this month decided one night that she needed to go somewhere. Fortunately, she couldn't figure out what to wear and came into the house and then into my bedroom to find out what to wear. The casita/guest room is detached from the house near the front door entrance. I had fallen asleep with the TV on so when she started talking I was as disoriented as she was. I quickly assessed what was going on, nothing she said made sense but I knew that what she was doing was very real to her and I needed to stay calm and talk her back into some sort of reality. That took some doing. It seems that she might have been asleep and woke up thinking that she was late and needed to get dressed even though it was dark outside. She had gotten her underwear on and then couldn't figure out the clothes situation. She kept repeating, "I was able to get my bra and panties on, but can't get dressed." She had pulled her robe on over her shoulders before coming into the house.
Quite a number of shirts were on her bed and pants were draped on a chair. She's always been tidy and still is so I wondered how long she'd been trying to get dressed. I got her tucked into bed and had her a drink a huge glass of water. From experience I know that she hallucinates and becomes more confused if she's dehydrated. She finally realized that needing to go somewhere wasn't reality nor was the fact that I'd taken a shower in her bathroom leaving the water running all night, nor had I turned on the TV with only the sound on. Voices had come out of the TV. Mom has a habit of pouring out the water I hand her to drink when I'm not looking. I practically stand over her now to make sure she drinks enough.
Because she's been falling and thought that she needed to go somewhere I've taken one more key off her keyring. The gate key is now in the house attached to a large antique one. Daily we go through, "Did you know that my house key no longer opens the gate?" I tell her that it's in the house so that we can all use it. "Okay." She's thought that going out each morning to pick up the newspaper from the driveway is her job. She doesn't read it much; I imagine that most of the news no longer makes sense to her, but old habits are deeply ingrained and hard to break. I can't help but wonder how long it will take before she stops thinking she needs to pick up the newspaper. The day before the night incident she'd opened the gate about every half hour looking for the newspaper that she'd brought into the house early in the morning. She had no memory of bringing it in. The gate was an expensive but obviously necessary thing to install. She can't get out without the key.
I sent for a free book, "Coach Broyles' Playbook for Alzheimer's Caregivers" that arrived yesterday via UPS. What a great gift! I can't recommend it highly enough. Fast read with lots of information, tips, and strategies. I knew that shadows worry mom but had no idea why, or why she shadows me so much in the evening. Shadowing has been known to drive me nuts!
I'm attempting to ignore the flu-like symptoms by working on two fabric paper quilts I've started. All week I've been looking forward to the weekend when there would be less distractions; I'm feeling a bit depressed over the FM flare-up. I just got over a cold that hung on for 3 weeks! I never get colds so my immune system must be worse than usual. I started physical therapy for my knees, arthritis, and occasionally the exercises cause an FM flare-up; can't win sometimes.
