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)

185 drug to HALT Alzheimer's may be available by 2012

Way too late to help my dad, and the parents and loved ones of those currently suffering. But it will help the next generation. (Emphasis mine.)
Daily pill that halts Alzheimer's is hailed as 'biggest breakthrough against disease for 100 years'
A daily capsule of rember, as the drug is known, stops Alzheimer’s disease progressing by as much as 81 per cent, according to trial results. Patients with the brain disorder had no significant decline in their mental function over a 19-month period....
It is the first time medication has been developed to target the ‘tangles’ in the brain that destroy nerve cells, leading to deteriorating memory.
The drug helps to disrupt this process, preventing the formation of new tangles and loosening those already created.
...Eventually the drug could be used to stop the disease in its early stages before symptoms have even appeared, it is hoped....The drug works by dissolving the tangle of tau fibres which releases waste products that kill nerve cells, and by preventing the fibres from becoming tangled.....The trial was a Phase 2 study, which checks the safety and efficacy of the drug, but if a large-scale Phase 3 trial due next year repeats the findings, the drug could be available for prescribing by 2012. At the same time, the research team is investigating a way of diagnosing Alzheimer’s at its earliest stages when tau tangles are first being formed in the brain.
People may have these tangles in their 50s, long before symptoms develop, and the researchers hope the drug could be used as a preventive treatment.
I'm not even sure what I could say to comment on this. I hope it's true. By 2012 I'll be well on my way to being 50 and my dad was diagnosed at 62--meaning he probably had his tangles way before that. I honestly believe he had the beginning stages of AD when he was around 55--would that be tangles in his 40's?
I hate living in fear.
And of course, the article was about Great Britain's availability. Are they even looking at approval for the US yet? I'll have to look into it more.
(screenprint)

184 playing "what if"

I had lunch with a friend yesterday. Her grandfather just got diagnosed with non-specific dementia. He’s in a psych ward at a nursing home now. He was diagnosed while in the hospital for heart surgery.
So we got to talking about dementia and things related to it. I told her if I had to go back in time, I’d tell my mother NOT to allow my father to undergo the heart surgery he had in September 2006. So many bad things can be traced back to that procedure. It’s the first time he was abused in a hospital setting (tied up). It made him ever more paranoid about going places, always full of fear he’d be brought back to that hospital. And of course, the blood thinners he was put on caused his brain bleed to be out of control. The out of control brain bleed put him in that semi-coma, so he was catheterized, and got a UTI, which got MRSA in it, which killed him.
Too simplistic, I realize, but there is a direct connection.
Of course, if he was still alive, would he still be home? Or would my mom be forcing herself into penury so the government would pick up the tab? Or would he have had a heart attack and died?
Which takes me to my next scenario. If he had died having that heart attack while mowing the lawn 2 years ago, he never would have beaten up my mom. Never would have gotten MRSA and suffered for weeks. I would not have to have told the doctors to change his medications so that he would hurry up and die and not suffer anymore. I would not have that on my conscience.
Of course, if that had happened, and no crystal ball had told me what my dad’s future would have been, I’d be ranting that he was still healthy and able to communicate and we should have had years more with him. And it totally would have sucked for me if my cat and dad died the same weekend.
But I guess these sorts of musings tell you that you never know what the future holds, and as bad as present may seem, the future could be a lot worse if this didn’t happen.