Using bidet toilets or seats for older people (NYT)

The New York Times has a blog called “New Old Age.”  In a recent blog
post, the author mentions the use of bidet toilets “as a safer and more
effective way for the elderly to clean themselves.”

The author notes that the idea is to use a “bidet toilet” rather than a
free-standing bidet.  Here’s the description:
“A bidet toilet has a wand under the seat that moves into
position and sprays warmed water over the perineal area;
some also come equipped with warm-air dryers. More practically,
for those not interested in major plumbing investments, bidet
seats can be installed atop existing toilets.”

A variety of possible benefits are mentioned.  The author notes that
nothing has been proven.

Here’s a link to the blog post:

newoldage.blogs.nytimes.com/2012/03/27/begin-the-bidet

Begin the Bidet
New York Times
By Paula Span
March 27, 2012, 3:32 pm

Robin

“When Medicine Gets Personal: The DIY Clinical Trial”

This is an interesting post to the Health Blog of the Wall Street Journal (wsj.com).  It’s about an article in the journal Personalized Medicine about the do-it-yourself (DIY) science movement.  The journal article, written by Melanie Swan (melanieswan.com), lays out seven steps to “accelerating the professionalization” of do-it-yourself studies by laypeople.

Here’s a link to the WSJ blog post:

blogs.wsj.com/health/2012/03/30/when-medicine-really-gets-personal-the-diy-clinical-trial/

Health Blog/WSJ
When Medicine Really Gets Personal: The DIY Clinical Trial
By Amy Dockser Marcus
March 30, 2012, 3:38 PM

And here’s a link to the article in Personalized Medicine:

www.futuremedicine.com/doi/abs/10.2217/pme.11.97

Good luck to all your lay researchers!

“You’re Looking at Me Like I Live Here and I Don’t” – New film

The New York Times has a blog called “New Old Age.”  In a recent blog post, a new film
titled “You’re Looking at Me Like I Live Here and I Don’t” is described.

The film, shot in April 2009, stars Mrs. Lee Gorewitz, who lives in a dementia unit
at a care facility in Danville, CA.  The film is basically a picture of dementia from
the inside out.  It will air on PBS stations tonight (March 29) in San Francisco.

The blog post notes:

“Mostly, the camera follows her wanderings through the unit, her
interactions with other residents and staff, her sudden swings from
conviviality to despair to anger. We hear the background noise and
conversation, if you can call it that, of residents and aides. Family
members are never in the frame. We are there only to the extent Mrs.
Gorewitz is. What she cannot tell us, we don’t know. … The title of the
film is simply something Mrs. Gorewitz said one day, sitting at the
edge of her bed, not far from tears and playing with a bunch of small
stuffed animals.”

Here’s a link to the blog post:

http://newoldage.blogs.nytimes.com/2012/03/28/dementia-from-the-inside

Dementia, From the Inside
New York Times
By Jane Gross, Founding Blogger
March 28, 2012, 8:19 am

Sounds like a very powerful movie….

Robin

NIH and FDA Rare Disease Day recordings

Yesterday, I received a couple of emails from local support group member and volunteer Lily Shih about the NIH and FDA Rare Disease Day that she attended nearly a month ago.  None of the disorders in our local support group were discussed specifically.  Lily shared the following.

Robin

——————————

From Lily Shih:

I found that the NIH and the FDA have put recordings from Rare Disease Day on their websites!  Isn’t technology grand?!

NIH Rare Disease Day
Feb 29, 2012 Recordings
videocast.nih.gov/Summary.asp?File=17141

This day was more catered towards scientists and physicians.  Most presentations were hard to follow along.

FDA Patient Advocacy Day
Mar 1, 2012 Recordings
www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm277194.htm

This day was very organized and extremely helpful to advocates with useful info.  I recommend watching these videos.

The FDA day was especially helpful. If you watch the first video with the acting director, Dr. Rao, you’ll see how the day unfolded and know which presentation will be of interest to you. You can learn about the history of the FDA, their org chart, their drug review process, what the Dept. pf Orphan Disease is all about, and hear first hand how they WANT to work with patient advocates. Very impressive, that Dr. Rao!

Advice from a caregiver about things to do following a loved one’s death

On an online Lewy Body Dementia caregiver support group, I saw this post by a caregiver who lost her mom in early March 2012.  The post is about the things she learned following her mother’s passing.  Find the lessons that apply to your family!

Robin

——————————–

I also lost my mom this month, too, and I agree that the aftermath is
nasty, no matter how much planning has been done.

Here’s what I learned:

– Do not close bank accounts until all bills are paid, probate is
complete (if there is something to probate) and any money owed to her
(estate) has been received. This also helps with keeping records of where
her money has gone.

– Get many copies of the death certificate. Every time you get a check
that is made out to the estate of, there will be forms to fill out and
notarize and a certified death certificate to accompany that form. And, at
least in Minnesota, you have to hold onto the checks for 30 days before you
can even turn the form in. It would have been a lot simpler if I had kept
her bank account open.

– In Minnesota, you only have to go through Probate if there are assets
of over $50,000. For anything less, you can do an informal probate. And,
if it is just a matter of things like insurance refunds, even informal
probate isn’t necessary – just the notarized form and the death
certificate.

– You have to notify EVERYONE. The county generally has the
information, but it is wise to confirm that they know if something like
Medicaid is involved. If VA benefits are involved, you have to be sure to
inform them AND be aware that they may require that you return the last
benefit check or amount. Credit cards need to be closed (if you haven’t
already). I’m sure there are others I haven’t encountered yet.

– Have a prepaid funeral account for at least $10,000. Between the
service, cremation or burial or both, funeral director, church and other
costs (lunch, musicians, pastors, printing) this is a minimum. If, as the
passing is approaching, you are concerned that you don’t have enough in the
account, add to it right away.

– Be sure you understand all the rules of the cemetery. They have all
sorts of rules about what the marker can look like, how large it can be,
how it should be set, etc. And, even if they have a rule, if you need
something that is outside of their regulations, ask for it. You may need
to go through a process, but you are often successful.

– And a suggestion. If you have a number of siblings, let each take
responsibility (and power) over parts of the funeral. And accept how they
decide to handle it. It’s important to their grieving process and your
sanity.

– And, when mistakes or other bad things happen, try to take them in stride.
Taking things too much to heart and getting upset by them doesn’t help
anyone and leads to ulcers. The mistakes or downright awful things that
happen are someday going to be the things you remember – maybe even fondly
or with humor – years from now.

– Oh, and even if it is modest, you are entitled to an executor’s fee.
Originally, I thought I should be doing all of this out of love. Nope.
The love angle hasn’t changed, but the days away from work (beyond
bereavement pay), the gas, the other things I can’t take care of because of
what I need to handle for this “estate,” call for some kind of
compensation. Not only will I take a small executor’s fee before turning
the reconciliation over to Medicaid, but as I revise my will this year, I
will be sure that something is set aside for the person who has to handle
all this nasty business.