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 . . .
