Catching Up

Flowers make me happy! The orchid was purchased at my favorite store, Trader Joe's, because it doesn't cause my allergies to go on high alert. The tuber rose, below, brought back from Hawaii from my friend, however gives me a headache! I love them and rather than just tossing them into the trash I photographed them for posterity. How often has anyone brought me back flowers from Hawaii? Never!


I often find that I don't want to record any of the events that have caused despair, but if I don't then they buzz around my head until I unload them somewhere. I haven't kept this blog up for quite some time for a variety of reasons most of which I'd love to forget.
I have become an IPod junkie! Well maybe not completely but I do have two tiny shuffles. One has Neil Diamond music on it; his music saved my life in the 80's when I could barely get out of bed from CFS/FM while living in a cabin in the Big Sur area with my second husband who frankly I hoped would fall off of the planet. Apparently he has but I never got word when he passed away. Neither of us would move out of the cabin; I finally won and he moved on . . . Another decade passed before I was finally able to start digging myself out of the dark hole that had swallowed me up. When I was around 10 a woman intuitive doctor told my mother that I would have 3 difficult periods in my life where the health issues would be so severe that I'd be lucky to get through each day. Oddly enough she was right! There wasn't even a name for CFS or FM back in the late 50's early 60's, in fact I wasn't properly diagnosed until 1995 and by that time I was in such a funk that I finally gave up fighting and filed for disability which isn't a good for the morale. So, here we are in 2008 and Neil Diamond is once again getting me back on my feet. I love having his voice in my ear. The second IPod has Enya, Celtic Woman and Loreena McKennitt on it. The IPod shuffle is so tiny that I worry about misplacing them. I'm planning to make a case or box to keep them in. I have a feeling that a more expensive larger IPod is in my future, but right now these two are more than I need.

Stacy has had all of her appointments on the road to a kidney transplant and just as I expected we've run into a snafu with the last one. The urology clearance might just put an end to the brass ring! I can't say that I'd be any too happy about a scope entering my body and looking around my bladder but Stacy absolutely cannot deal with it. The urologist was shocked when Stacy became hysterical in the midst of the exam, so much so that he broke out in a sweat and stopped. But he did see, and so did I on the video monitor, scar tissue that most likely came from the 14 months she had a super-pubic catheter when she was 8 months old. The scar tissue needs to be taken care of by laser and then an extensive exam of her bladder has to be completed before Stacy will be considered for a transplant. We're both feeling dejected. But I wasn't prepared for how much I would be effected after the urologist dismissed us, "go home and I'll get back to you." What in the blazes does that mean. I tried to get an answer to that and he just shrugged and left the room. My understanding is that he's a very good doctor who will come up with a solution; it's been 8 days now and not one word from his office. We're definitely in limbo.

Mom has become even more of a worry! I talked her doctor into having an MRI done last month, which she doesn't remember having done, and when we got the results last week she didn't understand anything beyond, "The MRI showed atrophy consistent with someone her age," she dismissed, "and someone who is going through the memory loss and the other problems she's having." She insisted to the doctor that she can still drive and when he asked her how long it had been since she'd driven she of course had no idea. I said that it had been nearly 18 months. Happily he said, "I'm sure that your daughter will take you anywhere you need to go. Where is
it you'd like to go?" She had no idea, "If they'd let me drive I might be able to figure out where I'd like to go."
When we got home she said, "How does he know what my brain looks like? And, see, I'm just old so there's nothing wrong with me." I couldn't stand it! "Well you had an MRI and your brain is shrinking so yes, there is something wrong with your memory." The scene that followed left me so drained that I'm just now recovering from it. Alzheimer's is awful! In the midst of dealing with doctor appointments and tests for both Stacy and mom Riverside County decided to toss something else into the mix. I got a summons for jury duty. Part of me wanted to make a deal with them: take care of mom and Stacy, sit for 3 hours 3 times a week at dialysis and see to all of their needs and I'd be only to happy to take a break from my life and sit on a jury. Instead I wrote them about my care giving status and then received a letter informing that I needed proof of what mom and Stacy needed, a letter from their doctor would suffice. I wrote the letter, the doctor signed it and I haven't heard anything yet.
Mom now dresses in the wrong clothes, if it's hot she'll put on a sweatshirt and her best pants. If it's cool she'll wear a t-shirt. We had an altercation this morning when I told her it would be a good idea to change her pants and sweatshirt. She managed to find a short sleeve shirt, it is after all 80+ here, but she couldn't understand why I kept saying that she had on her good pants. She couldn't find any pants in her closet. With Neil Diamond in my ears I searched her room for pants. Why they were all on the floor in her closet under plastic bags is a mystery! Five pairs of pants only one of which needed to be laundered. She cried, "Have I become that crazy?" I told her she probably couldn't find a hanger to put them on. . . She comes in and out of the house from her casita so often that when I hear the front door open I cringe, there always seems to be something she needs in the way of losing the book she was reading, what day is it, what time is it, do we need to eat, are we going anywhere, what day is it, it's too hot in her room, too cold, is there anything she can help me with????? No wonder I love having the IPod in my ears. Yes, I know that I'll miss her terribly, but I already miss here! This woman isn't the mother that always helped me get through my days and was my best friend; a stranger has arrived who looks like mom . . . we've both been robbed of our last years together. The pain is often unbearable.

Hopefully, I'm getting a much needed break April 4-8th! My friend made reservations at the Bellagio and my daughter, her husband, and boys will be here with mom and Stacy. They all decided that I was heading for a padded cell if I didn't get out of here for a few days. If I didn't have a sense of humor, the art challenges, my friend, and finding a tidbit of happiness every day I would already be in that padded cell.

I never learned to swim when I was a kid, I'm so sun sensitive that I have to be covered up all of the time and it's a good thing that I look good in hats. Mom looks ridiculous in hats, so not everyone can wear hats! Anyway, there is a pool at the clubhouse that we pay dues for. My friend was a lifeguard and swimming instructor in his youth and was determined to get me into the pool. I finally ended up with workout shorts and a tank top; did I mention that I do bathing suits? I insisted that I needed an inner tube and being the gentleman that he is he even carries the bright blue thing to and from the pool; I guess he'd do anything to get me into the water. We discovered that if we get to the clubhouse just before 8pm we can get a key to the locker room and can swim until 10pm. Did I say swim? He swims and I paddle around with the inner tube around my middle, must be quite a sight, but I'm having a blast! I doubt that I'll ever truly swim, I just don't have the energy to keep kicking, but who cares? I always had a feeling that I'd love being in the water. My friend constantly gives me gifts like nightly swimming, breakfast out after we take mom and Stacy to dialysis, (I wonder how long mom will be able to continue sitting with Stacy during treatment?) planting and caring for the garden in the backyard and a myriad of other things.

To be continued . . .

Self Portrait

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.