Before we start I'd like to put out a little request. If you are someone that is or has cared for a loved one in or out of a nursing facility I"d love to hear your comments. Several of you have written to me by email about your experiences and I'd love it if you felt free to talk about them here. It has always been my hope from the inception of this blog that we could create a kind of community to support one another through this passage of time....That being said, I'd love to hear about music too.
When I was 11 years old my sixth grade teacher discovered I could read (she tested me by making me read 2001: A Space Odyssey, goodie!) she had me borrow a book of hers acquired in college which had classic short stories and I took it home. After a week I'd read about 4 stories and thought the best was a fictional account of Paul Revere's ride narrated by a dentist from that era.
It was Sunday night, I had to take the book back to school the next day but I couldn't find it. It was lost. I'd looked everywhere. I remember that night standing in the bathroom staring at myself in the mirror praying that God would send me a sign and help me find the book. I knew it had some sentimental value to the teacher and would be irreplaceable. If God could just give me a sign somehow...Then it happened. I got a headache. I laid on my bed moaning to myself how I'd messed up big time and lost the teachers special book. I was on my bed when my mom came in the room she suggested I go get an aspirin, I did and it turned out the book was on the shelf next to the aspirins. Wow, just like that I was saved. The sign was actually there, the headache was the sign from God I was looking for.
I like it better when the signs from the heavens are non pain inducing.
After our white German Shepard, Duke, was either stolen or ran away, a new dog started showing up in our yard. We named her Lady. Whenever we'd take the horses out on trail rides up into the hills, going away for hours at a time, she'd come along. She was a yellowy mid size mutt and a happy girl. In contrast Duke had always been somewhat sad and brooding, probably because he'd been abandoned by the previous owners of our house. I imagined Lady to be like those 60s Lassie stories, an irresistible happy go lucky dog that people fell in love with and adopted for a month and then she'd be on her way a rogue at heart, ready for the next adventure.
Her adventure with us included puppies, which were born in the horses tack and feed barn. Within a month we had another surprise our new horse, whom we'd been surprised to find pregnant, foaled and we had a sweet little girl horse to play with after school. A time of abundance. Surprises abounded.
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A week ago a friend of ours here at the blog passed away, . His name was Larry (L.A.) Johnson, he was at home on his houseboat in Redwood City, he was 62. He's picture is still on the list of subscribers.
I met Larry by phone in 2007 when I was organizing a series of shows at the hip Los Angeles venue, Largo. The shows were protesting the war in Iraq and at the same time celebrating the community of musicians that were featured at Neil Young's Living With War website. Several hundred of us had written songs about the war and they were up on the site for folks to listen to, each listen became a "vote" and one of my songs went into the top 10. Then a few months later a mysterious journalist wrote a rave review of the song and signed it RB Warford. Larry told me later it was likely a surprise attack from Neil himself, who apparently likes to cloak himself in the 'garb of the every man and wander amongst the natives'. Of course I was thrilled.
At any rate, Larry brought a film crew down to the first Largo show and interviewed me and some of the other musicians while we were doing our thing. It was alot of fun and I'm told that film still lives there in the official archive next to some valuable piece of Neil performance.
Larry was a film maker that was one of the primary cinematographers on the Woodstock film. I'm pretty sure he also helped film Dylan's film 'Renaldo and Clara'. But for many years, the last 20 or more, he was Neil Young's production manager and friend.
Larry and I stayed friends by email and phone and he was always supportive of my musical efforts and particularly my organizing of benefits, often calling it the "good work". He has a mother with dementia and we talked at times about our loved ones suffering from the condition. He will be missed.
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A week ago Aviara, the nursing home where Paul lives, lost his hearing aids. I've been too upset to write about this. It's confounding, frustrating and infuriating. He can barely hear without them. And they cost a bundle, about two thousand dollars. I'd been afraid of this, so when they were new, before I even took them in, I put Paul's name on them with bright red fingernail polish. Bleh.
I looked through all the drawers all of his dirty laundry, which by the way has been piling up for over a week. I looked under and around his bed. Nowhere.
On Monday I left a message with the "social worker" at the home, I left 2 messages actually, and didn't get a return call. So I went in today and looked some more and brought home the papers to fill out a formal complaint. Whatever.
While I was there someone from the family of Paul's room mate, an elderly man in his 80s, talked with me about her experiences with lost hearing aids. "One was crushed, another set was found in the washing machine, the third and fourth just disappeared", I'm paraphrasing but you get the idea. "A pair specially ordered slippers" lasted a month.
Where do they go?
Things I found this week:
The new song about Haiti (see below), an upbeat email from my friend Lenny Kaye, A few new guitar students, Some chat room time with old friend Lynne Robinson, A new gig for February, My picture in the Taylor magazine arrived today, Some quality time with Paul doing a crossword puzzle together (he didn't have to hear me for that), Paul's son Taiyo will be coming to visit around Easter, Paul's friend Philip K Dick's daughter will be visiting early March, I remembered that I like to play music in front of people last week when I played at Ducky Waddles Emporium, being flirted with by a couple of guys, Alexander is writing a science fiction story.
Thanks for your thoughts here. My mother has vascular dementia. My brother had been the caretaker for her and my father. My dad died just over two years ago. And then my brother developed odd symptoms early in 2008, and wouldn't go to the hospital. He said he wanted to live long enough to see Bush out of office, and he wasn't sure doctors would help.ReplyDelete
Caretakers are very skeptical about taking care of themselves. He'd been a medic in the Navy. He finally agreed to go to the hospital on January 16, 2009. He watched the inauguration from his hospital bed, and seeing Cheney rolled out in a wheelchair was a Dr. Strangelove bonus. That same day he was transferred from Provo to the VA hospital in Salt Lake City. He died in their hospice room on Feb. 2, 2009, almost exactly a year ago.
I was able to be with him, and try to take of him during the last two months of his life. He'd been an artist, but left because he thought the systems of art were worse than the military. Instead, he took care of our parents and taught neighbor kids how to play guitar, basketball and football. We spent the summer of 1967 working as waiters in Wash, DC. We spent our days off in the National Gallery of Art and wandering the Mall. He was the guy who dragged me to a DOORS concert when I was in high school, to Bucky lectures at the College of Creative Studies in 1968. That was my freshman year of college. Two days before he died, the Arena Stage in DC committed to doing my play on Buckminster Fuller. I was able to tell him about it. He said, "That sound fun."
A month or two later, when I flew back for meetings and contracts, I visited the National Gallery. I looked for the Dali painting that had been by the front door. In 1967, on each visit, we used to sit in front of it and ponder it, before moving on to the rest of the collection. As I vaguely recalled, it was about the Last Supper. I finally found it, down by the elevators and escalators at one end of the passageway to the new contemporary art building. It was, indeed, the Last Supper. Much to my surprise, rising above and looming over the tableau, there was a geodesic structure. I'd forgotten all about it. When I studied the painting in that summer, right after high school, I'd never heard of Buckminster Fuller. Bucky's daughter Allegra, confirmed that Dali and Bucky knew each other, but that's a whole other story.
It makes one wonder about the structures and lack of structures that move our lives... the startling syntropies and entropies. Like you, I instinctually believe that the randomness of accidents shouldn't be explained away, even if and when, at other times, I find that there are many "more things in heaven and earth than are dreamt of in..." ...etc., etc., etc.
Today is my father's birthday and he has Altziemers and is in a nursing home in Minnesota while I am so far away living in Greece. I miss him, or rather I miss the man he was, as he is no longer aware of his surroundings.ReplyDelete
I last spoke with him on his birthday a year ago and his last words to me were "I love you kiddo"..since then I have heard only breathing at the other end of the phone. Still, I hope that the last words my own children hear me say are also ones of love.
I made an arrangement with a local florist who delivers bouquets of balloons which seem to provide him with a great deal of joy and attention for days..she used to include goodie baskets with his favorite treats, but now he is on soft food. The florist gets reimbursement from my debit acct..which is a leap of faith on my part..giving those numbers to a stranger..but it has worked well for several years.
I'm delighted that Paul was finally found eligible for Medi-Cal. I assume that his disability coverage came through. Did anyone advise you to apply for retroactive reimbursement for your costs from the date of application/eligibility? Shouldn't Medi-cal take care of the lost hearing aides and dental care? (It always irritated me that the nursing homes didn't have to carry insurance against staff imcompetence and lost items. YOU WOULDN'T BELIEVE HOW MANY DENTURES ARE REPLACED BY TAX PAYERS!!).
I don't know if you received my previous comment about retiring from Medicaid after over 20 years of working Medicaid policy issues in two states (most recently on dental coverage). If you ever need my assistance on Medicaid issues, I'm there for you..although Medi-Cal is different from the other states.
I wish you the best for 2010..any news about the Itlian concert? It looks like I will be in the States when you are in Europe..Carree Moore, Antiparos, Cyclades, Greece..
So sorry to hear about your brother Doug. I can see already what a challenge it is moving from caregiver to citizen. I think because we end up having to empathize so closely, having to "mind meld" to figure out what there needs are we can lose ourselves in in the process. Fortunately, for me Alexander and my teaching kept me one foot in the real world.ReplyDelete
As for your Buckminster Fuller and Dali painting story, I love it. Serendipity at work once again. I saw your play in San Diego back in 2000 and I must say it's one of my all time favorite plays! What a fabulous and high minded character he was. And you too for keeping his legacy alive.
Carree, I will definitely get in touch if I make it over to Greece. I'd love to see the archaeological sites someday.
Lost and found one messiah at Ducky Waddles Emporium. Welcome back to the stage, screen?, zine...your insights are shedding some light in the tunnel of caregivers and friends around the globe. I find it inspiring that Alexander is creatively writing a sci-fi story. The circle of continuity flows through his pen. It appears that ducks are lining up in a row for you. I've got a sweet feeling about it too. Happy trails to you in this new year of the Tiger.ReplyDelete
make sure that cindy tkes time out to nurture cindy xReplyDelete
Cindy, just read your blog, I know your frustration with the nursing home. Searching for a nursing home for my dad was agonizing. I don't know about Aviara, but the search for help for dad was horrible. I finally found a place, Valle Vista in Escondido, that was amazing. From the outside you would never imagine the caring and love that was inside. It was kind of a fifties building, nothing fancy. The care, food, physical therapy on the inside was amazing. There were many "fancy" places that just piled their people in the aisles like cord wood. Visiting often and at odd hours makes a difference. There are also adovcates that can help you if they do not do their job. NEVER let any friends or relatives go to Villa Pomerado. Always ask what drugs they have their patients on. Dad only had vitamins and aricept (to slow dementia down) One place had him on tons of other stuff at - to make their lives easier.) Never assume that they will do the right thing. Take time with friends for yourself too. Don't feel guilty...just do the best you can.. Take care my friend. Kathy (Laws) SavageReplyDelete