My father’s ghost

I had one of my rare dreams the other night—a dream that I am in (as me) and involving people and places that actually exist. It was a long and complicated dream and I’ll spare you the details. But as part of it, I was hanging around with a bunch of ghosts. Not scary ghosts going “whooo” and rattling chains, simply spirits of dead people. One of them was my dad. And at first (in the dream) it was cool to have my dad’s ghost around—not much different from having a flesh-and-blood Alzheimer’s dad—there but not there, you know?

But as I spent more time trying to communicate with my father’s ghost, I realized something horrible. Something that stayed with me when I woke up, even as the other details of the dream faded away.

My father’s ghost still had Alzheimer’s.

How unfair is that? In the dream, and now, awake, I raged against that. That is not how it is supposed to be. If you have dementia, when you die, you get everything back. You have to. You die and you go to the Elsewhere bar and have a drink. Whatever it was your soul was supposed to learn (or teach you) by stripping away your memories and your personality, you learn it and have a good chuckle, and then you hold the door for some newcomers (8 per hour, just from the US).

You don’t come back as a sad, demented ghost.

I don’t know what in my psyche triggered that dream and I can only hope that it was wrong.

(cross posted to my Shamanic Musings blog)

Anniversary & Hopes, plus more death

It's been a year today since I saw my dad. Tomorrow it will be a year since he died. That means, somewhere around the time I was putting Nutter to sleep, the anniversary of the last time my dad seemed to know who I was passed. It seems so far away, but I know that's because I spent so many years saying goodbye to my father and missing him when he was right there in front of me. One good thing about a long goodbye is that your mourning is totally different.
When my black cat died in 2006, unexpectedly, it was like part of me had been ripped out. I spent months crying and it was a year before I got another cat (not a replacement cat). I spent 18 months saying goodbye to Nutter, and although it was awful to take him into the vet and have the needle put in his leg and see the light go out of his big, pretty eyes, I didn't cry for weeks or even days. I still have my moments (like right now) when I miss my silly white kitty, but I'm okay with the fact that he died. He was 15 and he had cancer and he was done. He told me he was done and I honored that and let him go.
By the time my dad died last year, he was done too, and watching him die was like a battle. I can't even go back and re-read that section of this blog. It was horrible to have my cat killed (and face it, even though we say "put to sleep" and it was a gentle, painless act, at the end my cat was dead and I signed the paper making it so), but it was more horrible during his last days to watch the cat suffer, and to try everything to fix him and not be able to make it better for him—except to offer him that final needle. It really did stir up memories of last year and watching my father suffer with no hope of recovery.
I know I've said it before but why is a human allowed to suffer yet we can easily end the suffering of an animal, a lesser creature? If there was the slightest chance he could have woken and been my father again...oh how I would have fought for treatment. Instead the only treatments prolonged his pain. I can only hope that long before his body gave out, my father's mind and soul had fled to the Elsewhere Bar. No one should have to live for weeks in a body with a fever of over 100, with a broken and bleeding mind, burning up from an untreatable infection. I can't imagine how much physical pain he must have been in. Maybe that's why I was so intolerant of Nutter's final days. We took him to the vet and tried a last ditch treatment, which didn't work and left my kitty sprawled on the floor crying in pain, still unable to eat, hardly able to breathe. The very next morning, I made the call for his final appointment. No way was I letting that go on, as they say, "until nature took its course." I spent too long last year watching Nature's ineptitude with my dad.
I have so many wishes about my father’s death. I wish that he had died from that heart attack the year before (the same heat wave that killed my black kitty, in 2006). The hospitalization for the stent implantation sent him on a long spiraling journey to his death. We would have ranted and raved of course, saying he had more good years left in him, but he didn't. He had maybe 6 months (that next spring is when he started getting really violent) and "good" is relative. I wish that when he hit his head at the nursing home and the doctor told us he wouldn't survive the night, that he hadn't survived not only the night, but the next 6 weeks. His true, horrid suffering started then--with the seizures, the massive brain damage, the ongoing bleeding from the heart drugs (for the damn stent), and of course the lovely MRSA that finally did him in, although it took its time doing so.
I wonder if the resentment and anger over how my dad died will ever fade. I can get over that he had Alzheimer's, even though he got it way too early and his life was cut short. But the actual manner of his death, how he looked…I haven’t been able to put from my mind. The nursing home did the best they could keeping him comfortable and I hold no blame in my heart toward them. I hate that hospital though.

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A new interview with Terry Pratchett, the author I like so much that got diagnosed right after my dad died, just came out. He says he has Alzheimer's but it's actually posterior cortical atrophy (which is some kind of weird variant, I guess). He's having trouble getting dressed and driving but he's still writing. I just read his newest book, Nation, which isn't part of his Discworld series. He was diagnosed partway through writing it. I didn't count how many times the book made me cry. It's not about someone with dementia--it's about two children from different cultures coming together to rebuild civilization after a tidal wave--but it has themes of social isolation, and descriptions of being a grey ghost in the world, unable to communicate with anyone. I wonder if he wrote any of it consciously as a metaphor for his condition? It also has a rather unhappy ending, in that what you WANT to happen doesn't. Rather like how Stephen King ended the Dark Tower series--the only way it could end, but not the happy and desirable outcome. Pratchett claims he has a few more books in him before the darkness takes him, and I hope so. Although the Discworld books don't have an overarching plot like the Dark Tower did, I still want to read more of them. Maybe Pratchett will try to come up with an ending, but I hope not. I hope that when his mind does leave this world, it goes there, to the back of an elephant standing on some turtles (or is it the other way around?) and he becomes a living part of Discworld and for him it goes on forever.

I guess that's all anyone can hope for, whether they call it Heaven or crossing the rainbow bridge or going to the Elsewhere Bar, that it goes on forever and no one's in pain anymore. To quote Kurt Vonnegut: "everything was beautiful and nothing hurt".
(screenprint of Terry Pratchett interview)

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Since I last posted, saying I was putting Nutter to sleep, I also lost Zeebo and Onnie, two of my parrots. Zeebo died a couple of weeks after Nutter, with no warning. He was a hybrid and they don't live long--his sister was ancient at 16 and he was 15. A couple of weeks later, Onnie left me too. With no job, I can't afford necropsies, so I don't know what killed them, only that I feel very, very bad. My pet cemetery box has grown to be a pet cemetery shelf, I have so many tins of ashes. Ironically, on that same bookshelf are all my Discworld books.

Tales of Loss

So much bad news in my life.
Since August 2005, I have lost 3 parrots (Gwennie, Goober and Prism), a cat (Zen) and a father (the presumptive subject of this blog), plus a job (Connecticut Publishing). My white cat is going to be put to sleep tomorrow, if he survives the night, and my sure-thing job ended without warning, so let's up that count to 2 jobs and 2 cats. Plus my health is still not what it should be--I was nearly immobilized by my leg going bad in the spring, although it's better now due to nearly constant therapy.
Last year, when I was watching my father die, my friend asked me how I got out of bed in the morning without being crippled by grief. I told him honestly that if I gave in, even for one day, and called in sick to my life, that's where I would end up--in a bed the rest of my life, unable to get up and face the world.
There is good among the bad, of course. I've been named a Featured Blogger at Wellsphere:

Gevera Bert Piedmont Alzheimer's & Dementia Community

So anyone who goes there searching for information on Alzheimer's will have access to my blog posts. I've got a few articles in my archive that I want to write about and hopefully I'll get to them over the next few days. So many new treatments seem to be coming out. Too late for my dad, but I try to think that it's not too late for someone else's dad (or mom, husband, wife, etc.)

Ask Medicare Webcast September 18 noon EDT

Sharing with any who might be interested:

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Dear Bert,

On behalf of Medicare, I’d like to invite you to a live Webcast unveiling Ask Medicare, a new caregivers initiative from the Centers for Medicare & Medicaid Services (CMS), that will be held at 12:00 pm EDT on Thursday, September 18, 2008. (See below for more information about the initiative.)* I came across your blog while researching caregiver blogs for this project and I found your relationship with your father very touching and relatable. Several years ago I helped my mother care for my grandmother in hospice at our home so I recognize some of the challenges and questions that you’ve addressed here; I hope that this new site will prove a helpful resource for other caregivers out there. I feel really good about being involved with this project and excited to see an institution like Medicare make an effort to reach out to citizens in a way that makes since for how normal people live their lives.

Here’s the basic info on the launch (sorry it’s long but I found it all important):

During the Webcast you’ll have the opportunity to submit questions related to caregiving that may be answered by Kerry Weems, Acting Administrator of CMS, as well as other leading experts from organizations including the Administration on Aging, the National Alliance of Caregiving, and AARP. We will also be unveiling the new Ask Medicare Web page, www.medicare.gov/caregivers. This web page will provide updated, easy to use information and tools to assist caregivers in talking with their loved ones to make a family plan and in making informed healthcare decisions about a variety of topics from Medicare coverage to technology updates to emotional support.

How can you be a part of the conversation?

1. Register for the live Webcast here. The Webcast will be held Thursday, September 18th, from 12:00 PM to 1:00 PM EST.

2. Share this opportunity with readers. Perhaps you could mention the event in a post and let your readers know we are welcoming all interested eyes and ears to be a part of the initiative. If you’re interested, we can send you a link to a countdown widget that you can add to your page leading up to the Webcast and that links to the event registration page.

3. Ask your questions. Submit your questions related to Medicare and resources needed for caregivers using the form available on the Webcast registration page. You can also submit your questions during the Webcast using a similar form on the specified link.

4. Share your story. We are collecting caregiver’s personal stories that could be shared with our readers. Tell us your experiences as a caregiver and your advice for others. I’ve attached a letter from my colleague Wendy Davis with more guidance, if you are interested.

*Ask Medicare was developed in consultation with caregivers and partners to provide answers to common problems and address a wide range of questions about caregiving. We're reaching out to caregivers who can provide helpful feedback, interact with leaders of this initiative, and ultimately feel confident sharing this resource with their readers. CMS is the US federal agency which administers Medicare, Medicaid, and the State Children's Health Insurance Program.

I hope you’ll be able to join us for the launch and provide your reflections on the new site. Getting feedback from bloggers who attend the launch is going to be priceless going forward in making the site practical and valuable.

Please contact me with any questions leading up to the launch or if you would like to be more involved.

Best wishes,

Nicole Landguth

p.s.- Here’s a link to our Blogger Code of Ethics for your reference. At Ogilvy, we take this code very seriously and want to express the value we see in maintaining a mutual relationship with those we reach out to.

Nicole Landguth

Nicole.Landguth@ogilvypr.com

360 Digital Influence

Ogilvy Public Relations Worldwide

1111 19th Street NW

Washington, DC 20036

186 buffalo bill's defunct

My father's birthday just passed, our first one without him, and next week is my parent's anniversary. That marks 1 year since he was beating my mom in the yard and when the neighbor tried to help he got bitten by the dog.
In honor of my dad, I re-wrote ee cummings' famous poem "buffalo bill's defunct":


Bob Rizza's
defunct
who used to
drive a calm oceangreen
pickup
and sell onetwothreefourfive chevysjustlikethat
Jesus
he was a quiet sweet man
and what i want to know is
how do you like your blueeyed boy
Mister Death
(unfortunately I can't seem to maintain the proper line spacing to match the original)