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.

“The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life” – new book

This recent New York Times article is about a new book “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life,” by Ira Byock, MD.  The author of the short review says:  “What makes Dr. Byock’s book particularly valuable is the chance to eavesdrop on the doctors we’re often quick to blame. He tells what it’s like on the other end of the stethoscope.”  The reviewer is “most appreciative of [Dr. Byock’s] front-line insights into the way medicine operates at the end of life.”

One take-away from this book must be that we all need to have advance directives or we may suffer the fate described of the family matriarch in the ICU whose niece objects to stopping all treatment as “letting her die [when] only God can take a life.”  Apparently most Americans do not have advance directives.

Here’s a link to the full article:

newoldage.blogs.nytimes.com/2012/03/20/the-caregivers-bookshelf-dying-by-degrees

The New Old Age Blog: Caring and Coping
The Caregiver’s Bookshelf: Dying by Degrees
The New York Times
By Paula Span
March 20, 2012, 4:25 PM

“Wallet Smarts” (caring.com)

This short article on caring.com is about changing a purse or wallet for someone with dementia to something that might be safe to carry.

I read about this article on California’s Link2Care email support group.

Robin

——————————

www.caring.com/articles/wallets-preserve-older-adults-dignity

Wallet Smarts That Preserve an Older Adult’s Dignity and Security
By Paula Spencer Scott, Caring.com senior editor
Last updated: February 02, 2012

A loved one who lives with a family caregiver probably has little need to carry a wallet or pocketbook — but that doesn’t mean that many older adults don’t want to continue the habit.

A purse or wallet, after all, is something he or she probably carried since the teenage years. Giving it up now feels like yet another loss and symbol of worthlessness to many older adults. Lack of documentation and money can create needless anxiety.

Understandably, you may worry about safety and security. Here’s what helps:

Exchange a driver’s license for an official ID. A license is a powerful source of identity, security, and importance. Seeing an empty space in the wallet where a driver’s license used to rest is disconcerting. A solution: Take your loved one to get an identification card at a local DMV office. (In some states, you can do it online.) It’s not a license to drive, though it looks similar to one.

Provide a little cash. Large amounts of money can get lost, given away, or spent on unnecessary items. But it’s better for someone obsessed about having a wallet or purse to have the security of seeing a few bills in the billfold. Without visible cash, your loved one may experience a constant, low-grade anxiety that “all my money is gone,” or “I’m broke.” He or she may get on a jag of wanting you to go to the bank together to get some, to be reassured.

Get a credit card with a very low balance. You do want to remove your loved one’s credit cards if financial responsibility has become problematic. One option is to replace a card with one that has a low limit that you can monitor. Some caregivers replace effective cards with outdated ones that no longer work; when their loved one tries to use it, they find out that it’s denied and get upset in the moment, but then they often forget about it. Other people are content to see some cards in their wallets that look like credit cards — library card, membership cards, plastic hotel room keys. Lacking the wherewithal to actually use them, someone with dementia, especially, will feel reassured by simply seeing something there that looks right “just in case.” Experiment to see what works in your specific situation.

“Caring for the Caregiver”

Local support group member and volunteer Denise is reading the book “How to Care for Aging Parents.”  She is offering occasional reports on the highlights of the book.  She has read the third chapter, which is about caring for the caregiver.  Here are Denise’s take-aways.  Despite the title of the book, the information applies to all caregivers, not just adult children caregivers.

Robin

*******************************

Denise’s Notes to

Chapter three – “Caring for the Caregiver”
of the book “How to Care for Aging Parents”
by Virginia Morris and Robert Butler
2004

The last couple months I’ve been reading “How to Care for Aging Parents,”” by Virginia Morris and Robert Butler, 2004, and passing on tips appropriate for all caregivers.  Chapter one looked at the importance of discussing end of life preferences, finding important documents, getting organized, and making a plan.   Chapter two talked about changing relationships and when to intervene.  Now, I give you chapter three, ‘Caring for the Caregiver.’  This chapter provides some guidelines to prevent your developing compassion fatigue.

Start by setting limits

– First, think about what your motivation is for all the caregiving you do.  Harboring resentment for being asked to do more than you are willing and/or able, is harmful, unhealthy stress.

– Then, make a list of true necessities and another list of extras.  If you have the resources (including other family members and/or volunteers), delegate so you can be there for the things only someone with a close, personal relationship can do.  If everything falls at your feet, get real about your feelings and limited energy and time.

– Next, write up a schedule to get those necessities done.  Be sure to include time for yourself to recharge.  There will be enough interruptions to that schedule you will be glad to be rested when demands increase.  Get used to saying, “No,” even to yourself, so you can stick to that schedule.

– Finally, let go of futile battles.  Fruitlessly trying to get a loved one to change their ways is unnecessarily increasing stress for both of you.  Make your best argument, then drop it, at least until circumstances change enough to warrant revisiting the issue.

Deal with your emotions

It is inevitable that strong emotions will surface when caring for a loved one who is ill or frail over a long term.  Following the guidelines above will help alleviate feelings of caregiver guilt and resentment.

If anger and resentment do arise, try writing about what makes you mad.  Once you identify the source of the aggravation, change what you can about the situation to avoid future conflicts.  If your efforts prove unsuccessful, consider talking to a therapist, social worker or support group.

Hopelessness, sorrow and grief are common, normal feelings when you are watching someone you love struggle with declining health.  In many cases their reduced abilities and changed personality cause you to grieve the person you once knew.  You may even be kicking yourself for thinking, at some particularly miserable point, they would be better off dying sooner than later.  This type of sadness is called ‘anticipatory grief’ and everyone deals with it differently.  Cut yourself some slack, talk it out with someone who understands (another good use of a support group),  and don’t forget to tell the person you’re losing how you feel about them.

Twelve Steps to a Healthy Mindset

Most of them you’ve heard a million times already like, take time for yourself / indulge yourself / relax / laugh / pursue hobbies, stay connected with friends for social support / keep up with the news for perspective, and seek spiritual support.  They’re important but I found these two unique and worthwhile:

#4 Set aside 15-30 minutes just to worry.  Jot whatever is distracting you from work or sleep to think about at a designated time.  You may find when get to it, that it wasn’t that critical after all.

#7 Take action rather than just grumble when you’re not happy with poor service, rude orderlies, chronically late home-care workers, etc.  Calmly, but persistently, move up the chain of command until you get satisfaction for your complaint.  It will give you a sense of control and alleviate unhealthy frustration and anger, aka: stress.

Compassion Fatigue – Article and Websites

Three people emailed me a Good Morning America news story on “compassion fatigue” today so I guess the story is resonating with a lot of people.

Compassion fatigue is “a term used to describe the symptoms of secondary post-traumatic stress caused by caregiving.”  One person describes it this way:  “Your impulse is to rescue. You don’t have any personal boundaries, but you become isolated and lose your self-care in the process.”

The article raises the case of the Sunnyvale, CA mother who killed her 22-year-old autistic son and herself in early March.  She had told a neighbor that she was overwhelmed with caring for her son.

The article also mentions the Compassion Fatigue Awareness Project, which has a website compassionfatigue.org.  That site has a list of symptoms of compassion fatigue here:

compassionfatigue.org/pages/symptoms.html

You can find a compassion fatigue self-test here:

www.proqol.org/ProQol_Test.html

Finally, Healthy Caregiving has training materials and workbooks on compassion fatigue.  See:

www.healthycaregiving.com/

Here’s a link to the news story that has been circulating far and wide today:

gma.yahoo.com/compassion-fatigue-strikes-family-even-animal-caregivers-202818789–abc-news.html

Compassion Fatigue Strikes Family, Even Animal Caregivers
By Susan Donaldson James
Good Morning America
Wed, Mar 21, 2012 4:28 PM EDT

Though it’s a Good Morning America news story, there doesn’t seem to be video/audio associated with it.