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I visited the first AFH [Adult Family Home] today for consideration in placing Mom. I truly liked the people who run it -- they are lovely. They also have 3 kids (one is 3 y.o. which is Mom's totally squishing age ), and one resident has a cat that the family adopted!!! They have a lot of talent and experience, as well as a super attitude. BUT, there are things that make it not a "done deal". The main thing is that I can't really put myself in Mom's mind on this one. She had told me a long while ago, that she didn't want an AFH, she'd prefer a skilled nursing type of facility. But things have changed dramatically from that time. It is also, still off-island, albeit much closer than Lakewood [ugh!], and summer is coming up quickly, which still means up to a 3 boat wait most likely. Also, I can't drive it alone because of the energy the visit takes out of me, as well as the drive still being longer than I can handle in my current state of health. That can always improve, but I have to think of here and now. Also, being ferry dependent means that the problem still exists re: getting to her 24x7 since the ferry does stop working for some hours overnight. Also, the actual house is small, and definitely not Mom's style. But, I am not sure just what would bug her now, v. appease her. Certainly WSH is not her cuppa tea, but there is a lot of room for her to walk and /or pace, and different people she can play off of; both staff and other residents. Here, it's just 5 other residents, 3 men, 2 women, and the caregiver on shift. Of course, the owners will both be involved and accesible. Her bedroom is dark, the "view" nasty, but we could prolly put some bird feeders up, and maybe put a potted plant out there for her enjoyment and camouflage. We'd also put her stuff in her room to try to personalize it, but it's a dark room nonetheless. And, the floors outside the Bedroom are hardwood. But, these are lovely people who seem to really care and "get it". That's huge!!! Nick is an LPN which is fabulous. Sabla has worked in an alzheimer's place for many years, and she's a doll and very pretty (which Mom will love! I can hear her now, touching her face, and telling Sabla, "you have beautiful skin!"). But is this the one? The right one? The best one? I can't imagine making Mom change into a new place more than this one time. It would truly be horrific for her. So, my game plan is that the place I select is the best and final place. There lies the worse part of the conundrum. I truly believe it would be horrible for Mom to have to acclimate to one more place, but two is prohibitive. So what do I do? What is the right choice?
Sending smart vibes my way will be greatly appreciated! Peace!
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08:47 PM - link - |
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I just read an article sent to me via Co-Cure mailing list that is pretty upsetting.
"MD accused of falsifying findings in 21 important pain-drug studies
ProHealth
March 16, 2009
'His findings had a huge impact on the field…. Doctors have been using (his) findings very widely.' – Dr. Steven Shafer, editor, Anesthesia and Analgesia Apparently, the medical community was “universally hoodwinked” by the highly respected, influential, and much-published pain drug researcher, Dr. Scott Reuben, who has reportedly admitted making up “some or all” of the data in at least 21 important studies between 1996 and 2008. Now, researchers in the field say, they will be re-examining the literature and may need to repeat certain clinical trials. These were studies supporting the safety and ‘benefits’ of such drugs as Pfizer Inc.’s Bextra, Celebrex, and the Fibromyalgia drug Lyrica; Merck’s Vioxx; and Wyeth’s antidepressant Effexor, which Reuben’s studies reported could also be used for pain. While the others maintain their FDA-approved status, Bextra and Vioxx (both Cox-2 inhibitors) became infamous when they were pulled off the market after evidence mounted that they increased patient risk of stroke, heart attack, and death. An anesthesiologist specializing in post-surgical pain relief at Baystate Medical Center in Springfield, Massachusetts, Dr. Reuben was put on leave of absence after the hospital’s internal review board reportedly ascertained in a routine review that they had not approved some of his research. Their subsequent investigation revealed the extent of his allegedly unsubstantiated publications.
Dr Reuben
Journals which have retracted at least 13 of Dr. Reuben’s published studies so far include Anesthesia and Analgesia, and Anesthesiology. They've emphasized that Dr. Reuben's co-authors on the papers have not been accused of wrongdoing, according to Anesthesiology News, which broke the story on March 4. “The retracted studies aren’t expected to affect the drugs’ regulatory status because Dr. Reuben’s studies weren’t part of the packages that manufacturers submitted to the FDA or European authorities," according to a New York Times report on the situation dated March 11. Nevertheless, some hospitals, including University of Pittsburgh Medical Center, say they’re reviewing their pain treatment protocols and conducting their own studies to verify the effectiveness of drugs that Dr. Reuben has reported on."
Read this article which was posted March 4th, ISSUE: MARCH 2009 | VOLUME: 35:3, in "Anesthesiology News" for a more detailed account of the Rx data in question and the specific articles that are suspect. Peace
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PS all of the pain Rx have been something that either my Mom or I have been on, so I'm glad I've been on top of things as much as possible. A huge thanks to Co-Cure as well.
10:57 PM - link - |
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It's official about the Seattle P-I The last print edition will be on Tuesday, March 17th, but it will continue online at seattlepi.com. As Sue Frause, a journalist and Whidbey Island resident says via our FB wall, "It's the best case scenario for a very sad situation ... and also the first large daily paper in the country to go strictly online. So hopefully it can become a model for other newspapers ..." Apparently, the NY Times was there to witness today's events, and this news made Huffington Post's "front page"; an honor of sorts.
 "Tonight will be the final run, so let's do it right," publisher Roger Oglesby told the newsroom
"Seattle Post-Intelligencer To Go Online Only
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[snip]
The P-I's roots date to 1863, when Seattle was still a frontier town and James Watson founded its precursor, the Seattle Gazette, as a four-page weekly.The newspaper changed hands, names and offices several times _ including when the 1889 great Seattle fire destroyed its office _ before newspaper baron William Randolph Hearst bought the P-I in 1921 through a representative. Hearst later revealed his ownership of the newspaper in an editorial, according to the P-I archives. "Every idea, every movement, every debate in Seattle's civic life was reflected on the front page of the paper," said Leonard Garfield, executive director of the Museum of History and Industry in Seattle. Some of the newspaper's more famous employees over the years included novelist Tom Robbins, columnist Emmett Watson and Frank Herbert, author of the science fiction novel "Dune." Former P-I columnist Susan Paynter, who retired in 2007 after 39 years at the newspaper, said the P-I pushed the envelope on stories, running early pieces on abortion and the Equal Rights Amendment. "The P-I was really on the forefront of telling the average person's story and why it mattered," Paynter said. Horsey, the cartoonist who won the newspaper's only two Pulitzer Prizes in 1999 and 2003, said much would be lost when the print product ceases publishing. 'A daily newspaper tells the stories of a community and lets the people of a city know who they are, who their neighbors are, and the life and issues they share," Horsey said. "When you lose any one newspaper, you lose a piece of that.'
[snip]..." Gordy and I were just talking about how we love the tactile and need to "feel" paper when we read. We can't wrap our minds around a Kindle II as a replacement for books and newspapers. We like our personal library, and we like to borrow from our public library. I know that there are advantages to being online only, or something to download onto an electronic device, even ecologically, but I won't let it go without much kicking and screaming along the way. It's sad to see that my grandkids will probably not have much memory of newspapers in "hard copy", especially Robyn who is a voracious reader like her Papa and me. She already proudly displays her library, it was one of the first things she showed us when we visited her -- atta girl! So, this is a sad day, and a portent of the future of paperless reading methinks. On the plus side, it will now have a broader audience opportunity, and trees will be saved, and ink won't be all over my hands and clothing and face when while reading.
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01:06 PM - link - |
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I love Jon Stewart !! [love his mind too!] There's been this ongoing "bit" about the media pundits promoting stocks as "the experts", creating buy and sell frenzies et al, and Jon, of course, points out the ludicrous, the discrepancies, and inane; it's what he does - it's a comedy show with a political bent.
So, Cramer decided to come on tonight as a guest, I can't wait -- I do hope he has a sense of humor, v. being on the offensive. We will see. Enjoy:
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01:23 PM - link - |
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Kind of a post of free-association today to try to play some catch up. It's been a tough coupla weeks, but not without some humor and love too. Bob dying truly threw me -- subsequently, I've not been getting much sleep, which exacerbates everything else, including how to handle things that may not be so hard otherwise. Grieving is tough stuff. But that's life. I've been in a huge fibro-flare. I actually forgot just how much it hurts.. ouch! Having been on opiates (thank god /dess I'm finally off them), and having focused so much on the stomach issues and acute pain, truly made me numb to the debilitation of FMS. Along with that, the hands, the carpal tunnel syndrome has been resurfacing in a big way. Someone told me once that a body can't concentrate on multiple #10 (on a scale from 1-10 with 10 the worse) pain, that it only feels one of them. I didn't believe then, but I do now . I'm totally crumple inward like an old crone. I have a lot of work ahead of me to work through the pain and get it livable. I'm lucky to have some really really good healing support currently in my life. Katie is getting a dachshund next week and that will be very very wonderful. We all miss Brody, and this is his Dad. Very kewl. Mikey has been coming weekly to visit, and mostly to spend time with Papa (Gordy) and do a mano a mano thing. I get to come interrupt and get hugs and laugh and the news. Good stuff. Mom has been in a lot of pain of late, and there have been a lot of calls between me and the doctors at WSH. I still need to follow up with her shrink to make sure she's off Zyprexa. I had fought it initially due to elderly warnings, and now there is a lot of bru-haha and lawsuits and other nasties to support my initial concern. I'm visiting Mom today and will maybe get a chance to talk face to face. The transmission was totally rebuilt and other arcane expensive things done to Mom and Dad's toyota, but it's worth it for 1. the "smell things" and 2. hopefully another 100k miles. I've been doing facebook of late and have reconnected with some very wonderful people from my past that I had lost touch with. We don't talk a real lot - but we can see each other's notations and photos and day to day life activities by visiting the sites. It's not deep (necessarily) but it's a way to touch base and catch up. Love the surprises of new people found! Major blues and woes and hoops to traverse as the saga unfolds to try to find a place for Mom to live. I had mentioned before that due to a 13million dollar budget cut at WSH and a new Director, they have decided to de-certify any and all people that "can't get better" like the elderly and alzheimer's patient wards, so Mom has been in the queue for a while now to be placed. They are under pressure to just get her out, and are pushing places that are far away, not right for her in my opinion, and specifically they push AFH. Mom can't do well in an adult family home, she needs skilled nursing. But, most places will not even visit with, and then consider her because of 2 major issues:
1. Medicaid - they say they take medicaid patients, but the truth is, like with Homeplace, they actually reserve those beds for the residents who have been there paying OOP for 18 - 36 months. I can not pay that or, if allowed, even supplement that.
2. The stigma of having been at WSH. It is so out of whack with reality, but the stigma exists. If you've been reading my blog for a while, you know that due to understaffing and some policy issues the private facility had, Mom got into "the system" and ultimately evolved into a state of emotional and physical mania. The interim 2 week facility changed her meds DAILY because they said they could monitor her. Well anyone knows that most meds do not have a 1/2 life of 0, so she was essentially put on meds before others were out of her system. And contra-indicated ones and also side effects begat side effects and behaviours that were out of control. AND, to top it off, the care was not that good, or the watch that close, because of falls she had, and the horror of when I went to the john with her because no one else could, and I went to help change her, and saw dried feces stuck her her bum -- that is not healthy, and certainly painful. So it was truly WSH that got Mom back into a reasonable way of life and health. I will not reiterate what that was like, day one of admittance, but it's in the blog here - you can do a search if you want to. WSH has done wonders for her and her care. But, she still has had falls, we still consult and adjust her meds, she still has outbursts from pain and fear, and she still has alzheimer's which inherently causes emotional and physical pain. It is so important that I get Mom into a good place, preferably one closer to me so it doesn't take 3 hrs to get there, and I don't depend on Gordy to drive me, and one that she'll be able to get established in, and comfortable in, and no more shocks of change, or the need to find more than one set of doctors for her care. Her case is so complicated that it will be tough to get people caught up on her case and in sync with my choices. Olivia gave us a scare healthwise, but she is well now! Zach and Val are still fabulous. Val has had a recent growth spurt and he's looking more like the Desert Lynx he is, but he's still a doll. There is more family news to report, but I will do that in another post. This has gone longer than anticipated (we know I don't write "quickies") and I must get myself & food ready for the visit to Mom. Peace
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11:52 AM - link - |
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My dear dear dear friend, Bob Johnson died. I just got a phone call from Sue, his wife. Bob phoned me before his surgery, but I called back too late to reach him before he left for the NYC hospital. He and I have been friends and flirts and loved each other ever since we met in Mr Fusco's algebra class my first year at Conard High School. No matter where he or I went throughout our lives, we'd find each other somehow and phone, or visit, and talk and talk and reminisce and play catch up. He has a daughter, Katie, a young woman. Recently he sent me a photo of both Katie and Sue. According to Rob, Katie used "denial" as her "drug of choice" regarding RRJ's cancer once he was diagnosed. He was doing great on his chemo, so we were all so hopeful. When they determined the cancer was small enough to excise without impacting his heart, they scheduled the surgery. According to Sue, the surgery on Wednesday the 18th, went well, and the next day he was up and grumbling about "the damn ice chips" he was only allowed to have - he's hungry! On Friday, Sue and he were laughing and having breakfast in hospital. They expected him to be home by Sunday. About 1:00PM the RNs and/ or MDs saw his Oxygen levels dropping. Things turned to crap from there. I didn't want to push Sue too much about details, I let her tell me what she could. They intubated him, and according to Sue, they kept him alive, and working on him, until his daughter, Katie could make it to NYC to say goodbye. I recall what it was like with my Dad, and hope that that isn't what she remembers of her Dad. Sue & Katie will be moving into the Johnson family's long time home on the street formerly known as Oswegetchie Road. Bob's cat will be living there, and I hope that he will accept the family and family pets when they move in, and visa versa. He's such a piece of Bob, and was always such a comfort and joy to him. RRJ always was a cat-person. You gotta love a man who is a cat-person! All the animals in the neighborhood would visit their home; they always fed strays, and had a plethora of visitors. A long time Johnson family tradition! I wish I could reach Rich and Nancy and send them my love and tell them how much I miss him. I sure hope Bob's Mom isn't driving him as nutsy now as she always seemed to do on planet earth. His Mom chose the name "Robert Ryan" for him because she adored the actor. I'm sure his Dad welcomed him with a big ol' swedish "manly man" thumping hug. I just remember so many days spent at his home in WH and also his beach home. There were many days of being on the boat, and overniters in the boat. And fishing, sharking and adventures we had. Visits to DC, meeting his then roomie, the incomparable Ray Surette. Christmases celebrated, and apartments shared. Always the love and joy and tears and "if onlys" along with the shoulda woulda couldas. I was there when his Dad took ill. Jim bought Bob's Austin Healy 3000. His folks came over with Bob one thanksgiving. RRJ was in my 8mm film. Peg went boating with me, Rob and Rich. I knew Blackie and met Rich's dog that was part wolf. Rob was there for me right after Paul and I broke up. On and on and on, our journeys were always intermingling. It's such a dark hole in the world now where he's not anymore. No more "Diamonds and Rust" phone calls. I can't imagine that piece missing in my life. He was one of my best friends. He even visited me way back when I was in the hospital, and I had no recollection of same until he recently told me. He did finally tell me he loved me - and I held nothing back either. I hope he knows I love him and he forgives my not having caught him by phone prior to his surgery. Damn. They already had a wake for him, and they will ultimately follow his wishes and cremate him and scatter the ashes off his boat in Long Island Sound. Sue wants an autopsy first and it's now about the living, so I said nothing, but I know he'd hate that. But, soon, his Pisces water sign (Rob's birthday is February 22nd), will be able to hang out in the ocean; it will cleanse and renew his spirit. I hope the currents do it's job so that he finds his way to me -- maybe in some Salmon's fishiness, or a drop of water splashing me, and he says hello. It hurts so much. I don't know how to "make it better". We needed eachother and I let him down before the surgery. He kind of thought I had "magical" insight and could help him be well. He trusted me when I told him he'd get better.
It had worked so far, and I know it helped him knowing that I "had his back". I just can't shake the feeling that I did something wrong and let him down by not connecting prior to his surgery. Marilyn would call it "magical thinking" on my part, and a piece of my "old trauma" reasserting itself, but it doesn't diminish the guilt and sadness and the missing him. Robert Ryan Johnson, Bob, Rob, dearheart, man of the water, and lover of cats, I love and miss you more than you can know. xo+
Peace.
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04:01 PM - link - |
"walk this way..."
Igor [prnounced Eye-gore] from "Young Frankenstien" [pronounced Steen] --
there's more!
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We salute the Grammy nomination of the late great
Dave Van Ronk's final concert album: 
