Yes, she breathes. I'm still here. Just been AFK for most of the past year.
2009 and 2010 were tough years health-wise for me, and so I did very little writing and picture taking. Did very little, period, other than working on not feeling so crappy. Taking lots and lots of new thyroid medication and getting lots and lots of antibiotic injections got me feeling improved enough that in April 2011 I thought I detected light at the end of the very long, dark, twisted tunnel I'd been in.
Well. We all know what that light means, don't we. Just how bad the effect of train vs. you depends on how big that damn train is and how many cars it's pulling. Mine was large enough to knock me into 2012, where I'm feeling pretty much like I did in 2009 before all the thyroid tweaking and antibiotic injecting.
What happened was I found out my dad, Sam, was having some problems handling activities of daily living. I started helping as much as I could given the distance, living 400 miles apart (though, here in California, Northern California is worlds apart from Southern California). I had been trying to get him to move up here for years. Finally, he said yes. Woo hoo! For a variety of (health and financial) reasons, though we talked fairly regularly, we'd only seen each other twice since I moved up here almost 19 years ago. We were both pretty excited at the thought of actually being able to spend time together.
It became apparent, however, that something was off. In talking with a friend of mine who saw both of his parents through increasing dementia, it became clear to me that my dad was in the early stages. Like many so afflicted, Sam was generally able to cover it up, so long as you didn't try to deal with business/financial issues, or question them too closely about all those changed doctors appointments, and different answers to the same questions. It is easy, I found, for someone with stage 1-2 dementia to sound perfectly normal on the phone.
(Though some people with dementia don't like the phone, and develop what appear to be rude or abrupt phone manners, which can be the result of their suddenly not remembering who they are on the phone with, or what they were talking about, so they don't say much, or abruptly terminate the phone call. This is more common as the person moves into stage 3-4 dementia.)
It became apparent that I needed to get down there and see for myself what was going on, how he was actually functioning on a daily basis. L.A. being too far for me to safely drive, and not having flown on a commercial airline since I became chemically sensitive to fragrances and other chemicals in 1990, I didn't know how I was going to accomplish that...until my friend Karen found herself off of work (due to her own tough year).
Karen had been talking for years about flying me down to L.A. in her plane so I could see my dad, but the timing had never been right for such a trip. Not until May 2011. God was apparently laughing at someone else's plans last summer, as this was the beginning of a couple of amazing months. Amazingly stressful, amazingly exhausting, amazingly productive, all due to my having some amazing friends without whom I would not have been able to get through the summer, let alone the rest of the year. I'll spare you the amazing narrative and just touch on some highlights.
I found my dad to be quite ill--dehydrated, anemic and malnourished. There were weeks of Meals-On-Wheels food packs in the fridge, and the cupboards, fridge and freezer were full of food, but Sam was not eating much more than cranberry juice, nuts, fruit and crackers, and too little of those to maintain his normal weight. He hadn't gone to the doctor in over a year, and had refused entry to the social worker I'd previously asked his doctor to order to get an assessment in January 2011. So, while I was there, I make an appointment for us to see his doctor. I got one for late afternoon on Friday of the week I was there.
The rest of the week was spent going through Sam's Stuff. I don't think he'd thrown out a piece of paper, magazine or junk mail since the early 2000's. He also never met a mail order catalog that didn't have at least three things to buy, especially if there were "twofer" offers. He like giving things to people, so he bought all kinds of stuff that was just everywhere, jammed in amongst the bags and piles of papers, in closets, drawers, under furniture, on every horizontal surface... He also apparently couldn't pass up freebies ("Free, with your subscription to/order of [insert cause/magazine/company name here]"). Clocks, flashlights, key chains, tote bags, little toys, big toys, gimme hats and windbreakers, throws. OMG. The worst of it, though, was all the paper.
Karen flew out two days later, leaving me in L.A. to continue clearing out all this stuff, after she spent a day and night helping me sort through things while we chatted with my dad. Karen also got to meet a couple of my friends, Suzan and Beverly. Suz and I have known each other for 40 years, Beverly for almost 25 years or so. Beverly was working to meet some crushing deadlines, so we didn't get to spend much time together but she did take care of housing and feeding me while I was there for 8 days. Suzan, once she realized I'd been working through my dad's stuff till 3AM every morning, came to help and worked with me through the same grueling hours I was.
Suzan picking up the reins on the L.A. side of things. See? Amazing friends.
So, Friday at the doctor's office. The doctor asked my dad how he was doing. "Fine!", my dad replied, as always, "Just fine! Couldn't be better."
"How's your lightheadedness?" asked the doctor. "Oh, fine, fine, it only happens once in a while," my dad reported.
"Only every damn time you stand up and sit up!" I rather vigorously interjected. (Later, when reading through my dad's medical records I collected from his L.A. doctors, I read something in his cardiologist's report that just cracked me up: "The patient has a delightful disregard of his own health history." My dad, no matter how bad things were, no matter how much pain he was in, was always, always, "I'm fine! Couldn't be better.")
So, I filled the doctor in on what I'd directly observed. My dad's best and oldest friend (in years, not age, though that, too), L.M. was there, too, and filled the doc in on what had been going on that she observed and my dad told her over the past year. The doc drew blood for tests, and we arranged to have a home health care agency start doing assessments to see what type of support he needed.
That was on Friday. Karen flew me home late on the next Monday. On Thursday, the doctor called with the test results: as we suspected ('we' being L.M., the doctor, and I, not my dad, of course, since he was "Fine!"), it looked like he had colon cancer again, almost 14 years after he had surgery, chemo and radiation for colon cancer, when he was 75.
The doc wanted my dad in the hospital for further testing, so I spent the weekend and the following Monday morning convincing Sam he had to go in for the tests so we could see what was going on inside of him. His friend Doug picked him up and got him checked into the hospital.
(Highlights, Melissa, highlights!)
He indeed had cancer again. This time, along with another section of colon and some lymph nodes, they also took out his spleen. Fortunately, the kidney was okay, and the pancreas was okay for now. As weak and debilitated as he was, given the extent to which the cancer had infiltrated, if they didn't operate, he would have been in excruciating pain within a few weeks, and dead soon after. Given the type of cancer (hereditary nonpolyposis colorectal cancer [HNPCC], a.k.a. Lynch syndrome, which also affects everything else in the abdominal and chest cavity, and, in women, the ovaries and endometrium), we knew it could return somewhere else, likely the liver or lungs, anytime in the next 12-24 months.
Having been through chemo and radiation before when he was still relatively strong and healthy and it having then totally kicked his ass, he opted not to do chemo this time 'round. No further surgeries or treatment, either, when/if the cancer popped up again.
While I'd originally thought my dad would be able to live in an Independent Living apartment, once I'd visited him the first time, I realized he needed assisted living. After talking several times with his very nice GI doctor, I decided that he needed to come stay with me for a couple of weeks once he was discharged from the skilled nursing facility, so I could assess his actual functional capacity once he'd healed and detoxed at least some of the anesthesia.
Great idea. The only problem is that my home was looking more like an episode of Hoarders than a place to house not just one sick person (that would be moi) and a lizard, but also my dad who probably needed to use a walker all the time as he wasn't too steady on his pins.
I needed to declutter and reorganize. Fast. Of course, if I'd been able to do these things to begin with, things wouldn't have gotten the way they were. When your executive and other frontal lobe functions are screwed up, figuring out this stuff isn't easy. Thank goodness for AF once again. That is, Amazing Friends. Karen, Juliette, and my neighbor's girlfriend, Cathy, dug into my garage first, clearing it out and sorted everything into Toss, Recycle, Donate, Give Away categories, leaving a much smaller pile of Ask Melissa things for me to go through. Once that was done, Karen organized and stabilized some shelving units I already had, and she and Juliette organized all my emergency supplies and nonperishables.
Next came a couple of rooms, both of which had become warehouses for all my herp care & keeping, herp rescue, herp rehab, herp society, knitting, CND support, and school stuff: books, journals, magazines, supplies, newsletters, etc. Also a wonderful Cargo for Conservation box from U.S. Fish & Wildlife Service that I used to use in education programs. And boxes of various herp and wildlife artifacts (owl pellets, anyone? Anyone?)
I gave a ton of herp books and herp artifacts, and the Cargo for Conservation box (with USFWS's approval) to some friends at the Northern California Herp Society. My neighbors' kids got lots of the kid-suitable stuff, as did Children's Village, who also got most of my art supplies, including hundreds of rubber stamps, and an electric keyboard.
And thank heavens for Craigslist! While I love the local Freecycle lists, it does take time and effort to list things and manage their distribution. Cathy took photos of the stuff on my driveway and created a Craigslist posting. All but a few things were gone by the end of the following day. When I dug out another stash of several hundred books--reference, science, herp, curriculum, my master's program textbooks, etc.--after my NCHS friends had been and gone, I posted their free availability on CL in the early afternoon, and they were gone by sunset. Yes, I'm sure that lots of my CL stuff has ended up being sold at flea markets and in used book stores and online marketplaces, but if I could have done it myself, I would have. I was just grateful to have the stuff out of here so I could start rearranging things so my dad could come stay until we found him an elder care residence to move into.
Suddenly (well, over the next couple of months), the guest room, living room and dining room reappeared. Mike (my Cyclura lizards, for those of you new to my blog), of course, was fascinated by the whole thing - people coming and going, whole new territories to explore and incorporate into his existing territory (the rest of the house), new-to-him furniture to crawl under and reorganized stacks of things in the not-for-Sam-rooms to climb on. I'd hear Mike in the early mornings, taking time to explore before he trotted down the hall for his bath, and again in the late afternoons when he typically goes walkabout before going to sleep. Treppie (my desert tortoise) was also busy exploring everything, especially all the 'new' floor space.
Karen and I took a commercial flight to L.A.. Beverly picked us up at the airport and took us to pick up a small rental truck. We met Suzan (and some fellows who work for the delivery service she uses to do all the heavy lifting and stowing) at the apartment, and got all my dad's clothes and things packed up and on the truck. Fast forward a bit again, and Doug drove my dad up here.
Sam enjoyed meeting Mike and Treppie (and some of my two-legged friends), and they enjoyed meeting him. Mike and Treppie would hang out with Sam in the dining room. Treppie's new favorite place to sleep was under Sam's bed. Mornings were enlivened by Mike and Sam trying to occupy the guest bathroom at the same time.
Sam ended up hospitalized with pneumonia five days after he got here. As I read through the hospital medical records the day he was discharged, I found something in the radiology report that indicated to me that the cancer was likely already in his lungs. The hospital ordered a home health agency to work with Sam after his discharge. We were well cared for by a wonderful team from Gentiva. I couldn't physically handle all the caregiving, so Sam got excellent care from CNAs from At Home Nursing. (Both of the CNAs got their training at the local American Red Cross chapter, which totally rocks.) We met with an oncologist, who ordered blood work and a CT. I knew before the CT that cancer was present, based on the CEA test result. I decided not to tell him until after the doctor told me the results of the CT scan, which he did after the CT was done a week or so later.
Through it all, whenever Sam talked to his friends and to the home health folks, he assured them he was "Fine! Couldn't be better." He knew he was dying, as we were able to talk frankly about what was going on. He was ready to go, wanted to go, he told me, and after his granddaughter and her family came to visit, he started slipping away.
Two days later, Sam died.
In the days following his death, Treppie and Mike roamed the guest bedroom--Sam's room--and Sam's end of the dining room table, and then the rest of the house, looking for him.
I was going through a box of Sam's papers last night, and found a little piece of paper cut years ago from a newspaper. It was folded up and tucked into a stack of his museum and theater membership cards. I have checked online to see if I could find the author's name, but found only "author unknown". Those of you who knew my dad will probably see him in this; I certainly do.
Miss Me, But Let Me Go
When I come to the end of the road and the sun has set for me, I want no rites in a gloom-filled room - why cry for a soul set free? Miss me a little but not for long, and not with your head bowed low. Remember the love that we once shared, miss me but let me go! For this is a journey we all must take, and each must go alone. It's all a step on the road to home. When you are lonely and sick of heart, go to the friends we know, and bury your sorrows in doing good deeds. Miss me but let me go.
When I am able to, I will take my dad's ashes back down to L.A. and put him in the crypt with my mom, next to my sister's, just down the way from his parents.
|Sam & Sue Kaplan|
Union Service Plan Pharmacy
(I recommend the following resources for anyone dealing with family members who have or whom you suspect have dementia: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss, by Nancy Mace, 5th Ed. (Hardcover from Amazon; eBooks: Kindle; Nook), and a website for those dealing with Alzheimer and other dementia and memory loss impairments: Caring.com.)
For those for whom an LIS blog entry would not be complete without a photo of Our Boy, here's one taken today, at age 14 years and 4 months of age (since I didn't post on his hatchday last September). The look on Mr. Grumpy's face is because he continues to hold me personally responsible for the shorter Winter days and cooler temps which prevent him from sunning in front of open windows and doors.
Labels: Half Moon Bay, kombucha, Mike, Sam's Chowder House