174 married to a monster

CNN.com had this article about what it's like to have a spouse with AD up a few weeks ago.
Joan Gershman, 59, does not mince words when describing how Alzheimer's disease has affected her marriage. "For 34 years, we were partners, lovers, friends -- and all of sudden I am living with a monster," she said of her husband, Sid, 65, who was diagnosed in 2005.
I wonder if he hurts her like my dad did my mom? She always had bruises. And my dad would see them and ask who did that to her. He never believed it was him.
For Gershman, keeping it all inside took its toll. People in her support group rarely spoke about Alzheimer's emotional effect on marriages, so she started the Web site thealzheimerspouse.com. An average of 750 people visit the site each day, and she has heard from spouses around the world.
750? I'm happy with my 50 or so a day. I need to set my sights higher, apparently. Although it doesn't matter. If only 1 person comes a day, and that person feels better because s/he visited, that's what counts.
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173 Woman with AD killed in my town

This is really sad. I didn't know her, but she lived in my town.
The woman struck and killed while walking across Interstate 91 Monday evening has been identified as Patricia Carruthers of Wallingford....Carruthers was in the early stages of Alzheimer's disease and apparently had walked away from her home...sometime before 6 p.m. Monday...
(I)t appears as if Carruthers had wandered across the southbound lanes and into the northbound lanes, where she was hit by at least one vehicle, and maybe a second....
Carruthers, 63, was a former lawyer and a former teacher at Pond Hill School.
She held a bachelor's degree and master's degree in education from Southern Connecticut State University and had earned her law degree from the University of Connecticut School of Law in Hartford in 1989.
Just goes to show that keeping your mind active doesn't stop AD, does it?
(P)olice were still trying to determine the sequence of events in the accident.
Police said there were two vehicles involved -- a tow truck and a tractor-trailer -- but it is still unclear exactly what happened.

I can only hope that when the truck(s) hit her, she died instantly and never knew what happened. One second she was walking on the highway, the next my dad was greeting her at the door of the Elsewhere Bar. Say hi to my dad for me!
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Her obituary is online and it turns out I knew one of her sons in high school. I'd say it's a small world, but it's Wallingford, after all.

172 Medicare no longer paying for hospital mistakes

This is a bit off topic from Alzheimer's, but not from my dad.
Medicare won't pay hospitals for errors
Almost every condition they are no longer paying for my dad had, and the combination of those conditions are what killed him.
It's a new way to push for patient safety: Don't pay hospitals when they commit certain errors.....
Even when a hospital makes a preventable error, it still can be reimbursed for the extra treatment that patient will now require. Some errors can add $10,000 to $100,000 to the cost of a patient's stay.
Or kill them. Like my dad. :(
(O)ne in four hospitalized patients is outfitted with a urinary catheter. The tubes trigger more than half a million urinary tract infections a year, the most common hospital-caused infection.
Check. My dad had a UTI caused by being catheterized for months, starting when he was tied up in that awful emergency room without food, water or medicine for all those days.
Yet many patients don't even need catheters...and many who do have them for days longer than necessary....(N)early half of hospitals don't even keep track of who gets one.
Beginning Oct. 1, Medicare no longer will pay those extra-care costs for eight preventable hospital errors, including catheter-caused urinary tract infections, injuries from falls, and leaving objects in the body after surgery. Nor can hospitals bill the injured patient for those extra costs.
My dad had everything on that list except foreign objects left in his body after surgery.
Next year, Medicare will add three more errors to the no-pay list; ventilator-caused pneumonia and drug-resistant staph infections are top candidates.
We all know that my dad died of a drug-resistant staph infection from a cathether-induced UTI, after a hospital-caused fall.
On the one hand, this idea seems great to me. Punish the hospitals for giving shitty care! But in the long run, who is going to pay for these errors? They will just raise the prices of everything. No hospital is going to "eat" all that money.
Hospitals screw up, badly, all the time. A friend of mine who is a nurse was telling me a couple of weeks ago that while she was on vacation, someone from her emergency room called to say "we just killed a guy, what do we tell the family?" They forgot a critical step in the guy's care, and by the time they figured it out and went to rectify it, he was dead. Horrifying. If I make a mistake at work, a coupon might get printed with a wrong expiration date, or someone's name is misspelled, or there's a typo in a headline. If she makes a mistake, a person can be hurt or even killed. Not a job I want to have.
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new online resources

I have added these to my links, to the right:

Over 1.3 Million Americans are cared for through hospice each year, and there is a daughter, son, brother, husband, or friend acting as a family caregiver for each patient. The emotional challenge of caring for a loved one during the last few weeks can be draining and extremely stressful without support and help.

AGIS.com has partnered with the Hospice Foundation of America (HFA) to offer expert advice and information on end-of-life issues for caregivers. This new addition to the AGIS eldercare portal showcases HFA’s unique expertise in caregiving issues involving terminal illness, grief, emotional pain and other complex issues associated with the last months or weeks of a loved one’s life.

HFA’s Ask the Expert section is located at: http://www.agis.com/community/Ask-The-Experts/hfa/

AGIS End of Life section is located at: http://www.agis.com/eldercare-basics/Support-Services/End-of-Life/

AGIS’ new information section includes information on comfort through treatment of illness-related symptoms, hospice care and grief. Individual sections on the site feature additional information on solace and grief management strategies for both caregivers and ailing loved ones that enable practical and comforting solutions for every step of the process. The new AGIS interactive HFA “Ask the Experts” section enables families to find specific answers to personal challenges easily online.

While no one can ever be fully prepared for the emotions and situations that come from caring for a dying loved one, HFA and AGIS desire that no family caregiver will ever have to face this time alone.

171 I need your help!

I would like to develop some kind of flyer, a PDF for downloading, about things to say and do when someone you know has Alzheimer's. How to treat the afflicted person, how to talk to the family, etc.
So send me your suggestions, anything you can think of, however obvious it might seem to you.
If you want to be credited, tell me how. I have no problem with putting links to your (relevant) blog or website. This will be free--I don't plan on making money from it in any way (although I will plug the Unforgettable Fund of course).
Comment on THIS post or email directly to me (geverabert at yahoo dot com).
I just feel like I have to do something. I'll collect ideas for a few weeks and then put it together.
Thank you.

170 Alzheimer's develops literally overnight

This is pretty scary:
An advanced imaging study has captured the fact that amyloid plaques, the harbingers of Alzheimer's disease, can develop in just 24 hours.
That means between yesterday and today, you go from being okay to having Alzheimer's. Just like that. I'm sure it takes a while for the damage to show up in your actions, though.
Once the plaques develop, damage is evident in nearby nerve cells almost immediately...
"Knowing that plaque occurs quickly implies that something initiates it," (Dr. Bradley Hyman) said. "That is the next question to be answered."....
The studies showed that nerve cell changes associated with Alzheimer's disease appear within days. The results confirm suspicions that plaque formation is a primary event in the abnormal cell activity that underlies Alzheimer's disease.
It makes me think of things I've read about the Black Death in medieval Europe. Some strains were so virulent that you went to sleep healthy and "woke up dead" as they say--getting it and dying overnight. Scary to think AD comes on that fast...and to have it happen that way, there does have to be a trigger, right?
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169 Obesity treatment may help AD? & feeling lonely

This is an interesting little blurb I came across totally by accident: New Obesity Treatment offers hope for Alzheimer's Patients. (Screenprint is here--article actually vanished between bookmarking it and writing about it!)
Doctors pushed electrodes deep into a man's brain during surgery in an effort to control his appetite. Once the electrodes were stimulated, vivid memories were unlocked of an experience 30 years earlier.
The article doesn't say that they have actually TRIED this on anyone with AD. Personally, I don't think it sounds like it has much promise. #1, AD isn't about "forgetting", it's about physical degeneration of the brain. Dead neurons, plaque, etc. Can an electrode make the neurons grow back? #2, from what I understand, doctors are VERY reluctant to go inside the skulls of living AD patients and muck around with their already screwed-up brains. "Pushing electrodes deeply" sounds messy and imprecise and not like it would work well even on overeating, except in the case maybe of those Prader-Willi people who have no sense of satiety and eat themselves to death.

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about me: I've been feeling lonely and cut loose in the 2 or so months since my dad died. Maybe I miss the drama of having a dying father and all the attention I got when he died. But it seems to me...maybe I'm crazy...that people are avoiding me now that he's died. The same people who couldn't pledge enough support during those two horrible final months have vanished. I finally said something today to one of my best friends about it...she expressed guilt over neglecting me, and said it wasn't because my dad died, but she really didn't give a reason. And that's just how it's been. People I used to see once a week (or more) have dropped to every other week...once a month....can it really be I haven't seen some of these people since my dad's memorial service? Yes, indeed, that is true.
Having never lost a parent before I'm not sure if what I am going through is normal or not. I am sad, true, and often at odd times (usually when I am driving long distances alone, especially if I end up going past the exit for the nursing home), and at those times I might leak a little around around the eyes, but I'm always ALONE when that happens. I don't have crying breakdowns around other people. There's no reason for them to avoid me. Or maybe they just all got their fill of me in October and November. Who knows.