Sent 90% of My Elder Care Book to My Editor

I am thrilled I completed and sent 90% of my elder care book to my editor!-just before leaving for my 2-week, 6-country Mediterranean Cruise.

I look forward to reviewing her comments when I return.

BTW, I am at JFK, awaiting my flight to Barcelona-now.

Ten Tell-tale Signs That Your Aging Parents Need Help

I noticed gradual changes in my (fiercely independent) parents’ decline each time I returned home to Chicago. Eventually, I realized I needed to pay closer attention to the not-so-obvious warning signs.

My parents had begun to sleep till 4PM, were eating leftovers older than me, and they were driving dangerously. I took steps to bring in help twice a week (4 hours at a time) and to have food sent to them. Once they needed full time help, the familiar home health caregiver remained on as part of the round-the-clock team.

How do YOU know your aging parents need help?

Here is a helpful list by By: Clare Absher RN, BSN

“Our nurses have compiled the following list... Do any sound familiar?”
• Not paying household bills on time or at all; Bills and important documents are not put away in appropriate places and left lying around
• Not recognizing need for, arranging, or scheduling necessary household repairs and maintenance; Lawn not mowed, trash disposed of, and mail retrieved with any regularity
• Driving safely becoming an issue such as increase in violations, accidents, easily becomes lost in familiar areas, and signs of deteriorating vision
• Not preparing meals, eating at regular times, or missing them completely; Poor selection of food is often on hand or old outdated food left in refrigerator
• Declining personal hygiene as indicated by unkempt hair, dirty or lengthy nails, poor oral hygiene, body or urine odor, unshaven, and wearing same clothes over and over
• Lack of interest in keeping up with housekeeping chores like laundry or cleaning or simply complains that it is too difficult or tiring to continue doing them
• Losing track of medications, missed doses, mistakes like overdosing or interactions resulting in health concerns if not hospitalizations
• Reluctance to leave the house, run usual shopping errands, visit friends and family, sleeping long periods, and uninterested in usual hobbies or activities
• Getting up and down stairs and in and out of home becoming difficult; Walking unsteady on level ground, complaining of dizziness, and falls are likely or have already occurred
• Not making sound decisions that are likely to cause self harm or danger to others such as leaving the stove turned on or cigarettes burning and not recognizing an emergency or knowing the appropriate response

Can I Get Paid to Care for a Family Member?

Here is a helpful piece by Clare Absher RN, BSN at HomeCareFiles.org

The short answer is "Maybe". Some states provide programs that pay family members to care for loved ones at home however they are usually somewhat limited. These programs vary widely from state to state and even within the same state. Although most states offer some type of respite or temporary relief for family caregivers, they often won't pay them on a regular basis to provide care leaving big gaps in caregiver services.

Most long-term care in the US is provided by informal and unpaid family caregivers. Family caregivers are undoubtedly the backbone of our long-term care system and vital to meeting the needs of our aging population. As a result of our country's dependence on families to care for loved ones at home, the federal government enacted the Family Caregiver Support Program (FCSP) in 2000.

All states now provide some type of support in varying degrees under FCSP which focuses efforts on family caregiving relief. State units on aging with assistance of local area agencies on aging oversee and administer family caregiving services. Many local programs offer families counseling and support groups, training, and respite care to give family caregivers a break. Click on your state contact links below to learn more about specific help offered in your area for family caregivers.

Information about additional family support programs may also be available through contacting your local social services, senior services, or county health departments. In some states, Medicaid (government health insurance for low-income Americans) will pay family caregivers to provide care to family members at home. However, note that Medicare (government health insurance for older Americans) will not pay for long-term or ongoing home care regardless of whether such services are provided through an agency or a family member. Take some time to research programs in your area that might be applicable to your situation including any reimbursement for family caregivers. To get started click on your state contact links below to learn more about specific help offered in your area for family caregivers.

Search for State Contacts for family caregiver support services offered by each state at HomeCareFiles.org.

You might also consider trying the Family Care Navigator offered by the Family Caregiver Alliance for additional information on this topic.

We Dont All Get To Serve As Caregivers

My dearest friend was unable to serve as caregiver for her beloved Mom.

Her Mom was vibrant, energetic, serene, and full of plans for her future. At 75, just after returning from a birthday cruise with her husband, her body shut down and she fell brain dead. It was such an abrupt ending to a full and wonderful life.

She left a daughter who insists her Mom was her whole world! They were best friends, spoke every day, never quarreled, and visited every weekend.

My friend’s relationship with her Mom was cut short.

She was never given the opportunity to care for her declining Mom.

Fortunately, there was no unfinished business between them—no ill will, no regrets.

She was closer to her Mom than anyone I have ever seen.

I mourn for her loss.

Tips From Gary Barg-The Fearless Caregiver

My dad retired at the age of 61 in 1990. He looked forward to working with my mom in the new business that they had just opened, traveling, singing with friends (not necessarily singing well, but enjoying every minute) and seeing what life had to offer.

Unfortunately, life did not have much to offer past the first few months of his retirement. One summer day, my mom noticed a strange bump on my dad's head and they went to the doctor to check it out. His doctor called a few days later and, although it was the beginning of the Fourth of July weekend, told them to check into the hospital immediately. Dad had an aggressive case of multiple myeloma and passed a year later.

The first days after his diagnosis were hectic as Dad's condition progressed rapidly and he was not able to communicate with us either his wishes or where his important documents were located. We learned (as many families do) the hard lessons the hard way and developed a simple list to help start the conversation with loved ones.

Fearless Caregiver Family Checklist
The most loving gift a person can give to ones family is to put your affairs in order before a disaster or medical emergency. To assist in providing that gift, we have compiled the following list. The information and documents you should have prepared include:

---All bank accounts, account numbers and types of accounts, and the location of banks.
---Insurance companies, policy numbers, beneficiary as stated on the policies and type of insurance (health, life, long-term care, automobile, etc).
---Deed and titles to ALL property.
---Loan/lien information, who holds them and if there are any death provisions.
---Social Security and Medicare numbers.
---Military history, affiliations and papers (including discharge papers).
---Up-to-date Will in a safe place (inform family where the Will is located).
---Living Will or other Advanced Directives appropriate to your state of residence.
---Durable Power of Attorney.
---Instructions for funeral services and burial (if arrangements have been secured, name and location of funeral home).

Happy Thanksgiving and may the easy lessons be yours.



Gary Barg
Editor-in-Chief
Today's Caregiver magazine

Burr Oak Cemetery finally opens for relatives to check graves

Burr Oak Cemetery is partially opening to the public for the first time since July. November 19, 2009 BY MARK BROWN Sun-Times Columnist

When Burr Oak Cemetery opens partially to the public today for the first time since all hell broke loose in July, visitors may notice a number of changes, from a repaired main entrance gate to filled potholes to improved drainage.
But probably the most noticeable difference will be the hundreds and hundreds of two-by-fours now sprouting throughout the 105-acre Alsip cemetery like guideposts for some new tract subdivision.

The hefty stakes -- 3,000 in all, each painted with what amounts to a graveyard address -- will serve as location markers for those trying to track down the final resting place of their loved ones.

The lack of such markers -- a permanent installation in most cemeteries -- was one of the main causes of confusion when thousands of family members converged on Burr Oak last summer after the arrest of four individuals in what authorities allege was a grave reselling scheme.

Everyone wanted to determine if their family member's grave was among those that had been violated, but many ended up wandering around lost and confused.
A greater cause of confusion, however, was that there are about 140,000 graves in Burr Oak, yet only 43,000 headstones.

That situation is not so easily solved, although a newly created database of burial records, coupled with the temporary markers, should allow visitors to locate the spot where their family member is supposed to be buried -- "within a few inches," said Roman Szabelski, a veteran cemetery operator brought in as a consultant to Burr Oak's new management.

The disparity between graves and headstones is not evidence of malfeasance by past cemetery management, says Szabelski, but rather an indication of the economic constraints on its clientele. Most people buried at Burr Oak over the years simply chose not to mark the grave.

I was part of a contingent of reporters and photographers given a quickie tour of Burr Oak on Wednesday in preparation for today's reopening, which will be limited to individuals bearing a "ticket" with the location of the grave they seek to visit.

Overall, Burr Oak looked only slightly more bedraggled than any cemetery would on a bleak November day, with dead leaves covering many of the headstones that are flush to the ground.

Frankly, I'm not so sure how many people will be able to satisfy themselves that their family's grave has not been disturbed, even if they're able to find it with some assurance.

What does a 25- to 30-year-old grave look like if it was dug up four or five years ago?

I can say with some degree of confidence that the family members of George Scott, 1903-1975, Corinne Scott Street, 1899-1998, and John Dillard, 1910-1971, have no apparent cause for concern, having eyeballed their graves myself. But somebody may want an explanation for a recently disturbed unmarked grave site just to the side of John Grant, 1909-1997.

More common are large areas without headstones where the grass is splotchy and uneven. Burr Oak officials say they have not tried to identify disturbed graves, citing the criminal investigation.

We were kept at a distance from the crime scene area where sheriff's investigators this summer found human remains sticking out of a dirt pile where they had allegedly been dumped, although anybody can walk right up to the spot along the cemetery's northern border on 123rd Street just east of Cicero.

That area remains fenced off. Szabelski said the sheriff is finished with the site and has collected all visible remains but that there remains concern something "might wash to the top" during a rain.

Burr Oak officials are trying to control the reopening by limiting it to specific cemetery sections daily from today through next Wednesday. The cemetery will close Thanksgiving Day, then reopen to everyone on Friday, Nov. 27.

Until then, though, no drive-in or walk-up traffic will be permitted. Every visitor will have to take a bus from a specially designated transportation center at 12250 S. Cicero, just north of the Condesa del Mar.

You can't get on the bus without a ticket, which must be obtained through a new cemetery Web site, www.burroak alsip.com. The cemetery folks are encouraging everyone to go on the Web site before coming to the transportation center, although there will be some help desks available there. I know some of you would rather have a phone number, but they tell me there is none.

Some of you may remember my story from last month about how Burr Oak resumed burials and immediately ran into a situation where they dug up a casket that wasn't supposed to be there -- with the result that a South Side couple ended up buried with a stranger between them.

Szabelski said he is reasonably confident that the burial records are accurate and that such mishaps won't be commonplace. We'll see.

Best Cities for Seniors

My parents lived in one of the best, I live in one of the worst. I might have to move one day.

Here is an article sharing the results of a study of US cities and how well they take care of seniors.

A new study from Sperling's BestPlaces identifies those places which do the best job of caring for its elderly population. The "Best Cities for Seniors" study examined the state of senior care in the 50 largest metropolitan areas in the United States.

"This is different from the usual studies of retirement living," said Bert Sperling, the study's primary author. "When we first retire, we have the energy for traveling and sightseeing. At some point, we will all need specialized resources and facilities to help us cope with aging. That's what this study examines."

This unique new study, produced in partnership with Bankers Life and Casualty Company, identifies cities that offer the best resources for less active seniors. The study analyzed nearly 50 categories such as various senior living facilities, comprehensive medical care, specialized transportation services, and a significant senior population.

Top Ten Cities for Seniors• Portland, OR
• Seattle, WA
• San Francisco, CA
• Pittsburgh, PA
• Milwaukee, WI
• Philadelphia, PA
• New York, NY
• Boston, MA
• Cincinnati, OH
• Chicago, IL

Portland, Oregon
The City of Roses has progressive senior health services, garnering top scores for adult day cares, assisted living facilities, and senior meal services. Another particular strength is a transportation system that boasts clean and convenient public transit and excellent special access services.

The emphasis on senior health care seems to make a difference- Portland residents have a long life expectancy and a low incidence of heart disease. One caveat is the gray and gloomy weather- only Seattle has fewer sunny days per year.

Seattle, Washington
The biggest city in the Pacific Northwest has a low violent crime rate and, like Portland, offers excellent health care and transportation services for seniors. Seattle ranks near the top in life expectancy and low incidence of heart disease.
Seattle's only obvious drawbacks are the high cost of living and a lack of sunny days (the fewest among the nation's 50 largest cities). Another unique facet of these top two Northwest cities is an acute lack of religious involvement. Seattle and Portland do offer ample religious facilities, but they also have the lowest percentage of church-going residents in the nation-- so be prepared to sit alone in the pew.

San Francisco, California
"The City by the Bay" garnered the highest scores for public transit and special access services, and also scored well in low rates of heart disease and cancer. San Francisco is also known for its mild climate, though summers by the Bay can be surprisingly cold. Low property crime and a very high concentration of seniors already living there helps to assure that new residents won't feel lonely or unsafe.
Seniors who choose to settle down here should be financially well-off, as San Francisco has the highest housing costs and cost of living of the 50 cities in this study.

Pittsburgh, Pennsylvania
Pittsburgh has a very highest percentage of senior residents in our top ten cities. There is a very strong spiritual community, with a great number of religious congregations and one of the highest percentages of church-going residents. The Steel City's solid transportation system has some of the most comprehensive special access services in the country, and Pittsburgh has a very high number of hospitals per capita. The cost of living is low, and both houses and apartment rentals are affordable, though it falls short in the number of facilities for assisted living and adult day care (think "gray care").

Milwaukee, Wisconsin
Milwaukee scores very well in the health category, thanks to many hospitals per capita and exceptional senior living facilities. It also ranks highly in the transportation category with the shortest commute time in this study and excellent special access services.

Milwaukee also has a healthy and affordable economy and benefits from consistency- the city doesn't score significantly low in any of the major categories.

Philadelphia, Pennsylvania
A high percentage of seniors call Philly home, so new residents won't have any trouble meeting new friends. Philadelphia is second only to New York in the social amenities, thanks to numerous colleges, libraries and museums.

Philadelphia has excellent adult day care and superb assisted and independent living facilities. Property crime is also low. The downside is that it has low scores in health indicators such as life expectancy, heart disease and cancer rates.

New York, New York
New York is sometimes considered by its residents to be the center of the universe, where you can find almost everything you want or need. Unfortunately, there are some drawbacks to living in the center of it all. New York has the lowest geriatric doctor to senior ratio and some of the lowest scores for senior living facilities and services.

A comprehensive (if crowded) public transit system ensures that seniors will be able to get around the city easily. Also, the high cost of living can be a significant burden.

Boston, Massachusetts
As one of the nation's education centers, historical Boston gets high scores for the social category. There's also a low crime rate and a strong spiritual foundation in Beantown.

Boston gets high scores for the availability of specialized senior living facilities, but despite its reputation as a center for health care, it has a low ratio of physicians who specialize in geriatrics. Living in Boston can be expensive, with some of the highest apartment rents in our survey, but this is partially offset by a stable economy and a low unemployment rate.

Cincinnati, Ohio
Cincinnati is number three overall in the senior health care category and ranks first in independent living facilities. With a low cost of living and affordable housing, it's easy on the pocketbook, and it has a surprising number of cultural attractions.

However, Cincinnati has uniformly low scores in the health categories such as life expectancy and cancer rates.

Chicago, Illinois
The Windy City posts average scores for senior living facilities, but falls short in the areas of doctor to senior ratio, poor senior meals services, and health indicators such as life expectancy.

Despite living in the home of the blues, residents here report a low incidence of depression. Also, Chicago has a high percentage of religious attendees, so residents are more likely to find community in their church group.

Bottom Five Cities for Seniors
• Passaic, NJ
• Miami, FL
• Nassau-Suffolk, NY
• Orange County, CA
• Riverside-San Bernardino, CA

"Those at the bottom of the list are all great cities, but they don't offer the specific combination of senior services and facilities such as those found among the top cities in our study," said Bert Sperling.

For example, although Miami has some of the study's best scores for life expectancy and cancer rate, it also has some of the lowest scores for senior living facilities. It may be that the majority of Miami's elderly residents (and there are many) have sufficient resources to provide for their own living arrangements, and rely less on commercial facilities.

Methodology
The data categories include health, economy, transportation, housing, social, crime, environment, disease, and spiritual. Each data category was statistically weighted to reflect the needs of the senior population, and the 50 largest U.S. cities received points based on their relation to the other cities' scores in that data category. Categories were suggested by senior living experts from the International Longevity Center, Health and Human Services, and Bankers Life.

This study could not have been done without the assistance of Total Living Choices which provided information about each city's senior living options and resources, and MealCall which supplied information on senior meal programs.

More Tips on How to Care for the Caregiver

Ten Tips for Family Caregivers

* Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.

* Watch out for signs of depression, and don’t delay in getting professional help when you need it.

* When people offer to help, accept the offer, and suggest specific things that they can do.

* Educate yourself about your loved one’s condition and how to communicate effectively with doctors.

* There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.

* Trust your instincts. Most of the time they’ll lead you in the right direction.

* Grieve for your losses, and then allow yourself to dream new dreams.

* Stand up for your rights as a caregiver and a citizen.

* Seek support from other caregivers. There is great strength in knowing you are not alone.

* Caregivers often do a lot of lifting pushing and pulling. Be good to your back.

Burr Oak Cemetery Photos

GRAVE SHAME Couple planned to be buried together at Burr Oak

Lorraine and William Scott had hoped to be buried next to each other at Burr Oak Cemetery.

October 14, 2009 BY MARK BROWN Sun-Times Columnist
After his July 10 death, William Scott's body was kept in storage for three months so he could be laid to rest alongside his late wife, Lorraine, in scandal-scarred Burr Oak Cemetery once it reopened for business.

But when cemetery workers tried to dig Scott's grave last week on the deeded burial plot he and Lorraine purchased in the 1950s, they unearthed an unpleasant surprise -- a casket and remains that weren't supposed to be there.

Now Mr. and Mrs. Scott must share their eternal resting place with a stranger lying between them.

This latest embarrassment for Burr Oak took place just weeks after a judge authorized the resumption of burials at the Alsip cemetery that has been closed to the public since being declared a crime scene in early July.

While the decrepit pine box and its unknown skeletal inhabitant appear to have no connection to the corpse dumping and grave reselling investigation that led to criminal charges against four former Burr Oak employees, it's certainly fresh evidence of the problems that incomplete record-keeping could continue to cause the cemetery as it tries to move forward.

Put simply, it can't be sure who's buried where.

Trudi Foushee, who manages the cemetery for owner Perpetua Holdings of Illinois, downplayed the latest incident and its portent for future operations. She said the discovery of the stray coffin had been explained in advance to Scott's family, which went ahead and authorized the burial to take place as scheduled last Thursday.

But the Scotts' daughter, Karla, a Miami, Fla., businesswoman, suggested she had little choice after waiting three months to bury her father -- two months after the actual funeral.

"All of this I found out at the very last minute," she said Tuesday from her late parents' Chatham home. "I was already on my way here. I wasn't even given warning. It's a very awkward situation."
Scott declined to discuss specifics of what happened with her father's burial plot, saying, "I really can't talk about that right now."

Brian White, a police commander for Cook County Sheriff Tom Dart, offered information that may help explain her reticence.

White, whose investigators were called to the scene after the remains were found, said Burr Oak officials outlined the circumstances to Scott and offered to proceed by burying her father at a discounted rate adjacent to the unknown grave -- one spot removed from her mother -- or dig up her mother's casket and move both parents to another spot in the cemetery.

By law, the unidentified remains could not be moved.
With a lousy choice like that, you can see why Scott just looked for closure.

Foushee argued that the unidentified remains never would have been disturbed if not for the intervention of Roman Szabelski, a court-appointed consultant helping to oversee the cemetery's reopening.

Szabelski, who runs Catholic Cemeteries for the Chicago Archdiocese and originally took over Burr Oak as receiver after the scandal broke, ordered William Scott's grave dug closer to his wife's than was originally marked by work crews, Foushee said. The backhoe then unearthed the unexpected coffin, she said.

Sheriff's investigators said some bones and part of the coffin already had been dumped on a truck before the mistake was found. They were later returned.

Szabelski wouldn't discuss the matter, but I'm having trouble following Foushee's logic that he's somehow to blame, when she says the records show there shouldn't have been a body there.
Obviously, the Scotts bought their plots expecting to be buried side by side.

From segregated cemeteries to Emmett Till's casket, the Burr Oak scandal has touched on so many uncomfortable truths of African-American history, and William Scott's grave debacle adds one more.

Scott, it turns out, was a survivor of the Tulsa Massacre, also known as the Tulsa Race Riot of 1921, when a white lynch mob destroyed that town's all-black Greenwood neighborhood, killing dozens if not hundreds of African Americans, the facts long in dispute. Scott, then 9, was left homeless.

He later came to Chicago, met and married Lorraine, served as a military cook during WWII, and supported his family with a factory job at Western Electric, also finding time to work as a 6th Ward Democratic precinct captain. Scott was 96 when he died. Lorraine died in 2008. They deserved a better ending.

You wonder how much more heartache this one cemetery can cause.

Tulsa Massacre Survivor Waits 3 Months to be Buried

I received a call from Mark Brown of the Sun Times today regarding being the latest victim of the Burr Oaks Cemetary scandal. I was surprised he was very familiar with details of our unusual case. We owned 4 plots and almost were unable to use them as planned.

In addition to discussing some of the Burr Oaks situation, I informed him of the horrors of the Tulsa Massacre.

We spoke for about 20 mintes.

His goal is to publish an article featuring another Burr Oaks family tomorrow.

We will see what he publishes.

I buried my Dad at Burr Oak today

It was an appropriately rainy day, the day Dad said his final goodbye.

Karla wept.

Will Go To Chicago Today To Bury Dad Thursday

I will take my 2nd trip to Chicago today (Tuesday)to lay my Dad to rest. The burial is planned for Thursday. Of note, it will be two months after my Dad's funeral.

Taking Care of Parents Also Means Taking Care of Finances

Here is a very helpful article highlighting a caregiver who exemplifies what an eldercaregiver lives. It offers great advice.

By WALECIA KONRAD New York Times---September 19, 2009

Denise Egebrecht needed a break.

It had been three years since her 86-year-old mother, Eleanor Schwartz, moved in with her and her husband in their home in Johnsburg, Ill. Mrs. Schwartz has Alzheimer’s disease and has trouble moving around, so Mrs. Egebrecht helps her mother with her shower each day, makes sure she’s fed and takes her on small excursions to the mall in a portable wheelchair. The routine includes occasionally reminding her mother of what day it is and where she’s living.

Mrs. Egebrecht does all this while also raising her 8-year-old daughter Jaqueline and juggling a full-time job.

“My mom took care of me all of my life,” says Mrs. Egebrecht. “Of course I’m going to take care of her now. She’ll live here as long as she’s able.”
But money was an issue. For a time, Mrs. Egebrecht was out of work, having lost her job last year. Although her husband was still employed, without her salary she found it increasingly difficult to pay $180 a week for the adult day care center Mrs. Schwartz attends regularly.

Then, through the Family Alliance office in her town, Mrs. Egebrecht heard about a $1,000 “respite care” grant sponsored by the Alzheimer’s Foundation of America.

Intended to give primary caregivers the break they so often need, the grant money must be used to pay for temporary substitute care, said Carol Steinberg, executive vice president of the Alzheimer’s Foundation. Mrs. Egebrecht applied for and received the grant, which meant her mother could continue to go to the adult day care center and Mrs. Egebrecht had time to find another job, which she has.
Mrs. Egebrecht is one of the growing numbers of Americans facing the financial squeeze that can come from caring for elderly parents.

About 30 percent of adult children in the United States contribute financially to their parents’ care, according to the Pew Research Center. On average these children pay $2,400 a year on everything from uncovered medical expenses to making sure the refrigerator is stocked each week. The money often goes to parents who diligently saved all their lives, but in the face of longer life spans and chronic illness, the savings just isn’t enough.

With all of the overwhelming emotional and medical aspects of caring for elderly parents, it’s natural to ignore the consequences of spending large amounts of money on them. But so often adult children end up ignoring their own savings and retirement accounts or, worse, go into debt, because they’re taking care of their parents, says Tim Casserly, a lawyer in Albany who specializes in issues of elderly care.

And if you jeopardize your own finances now, you risk putting your children in the same tough spot down the line.

One way out of this bind? Take full advantage of the hundreds of government and nonprofit programs and services geared to the elderly throughout the country. “There’s lots of help out there, but also lots of reasons why families don’t use it,” said Mr. Casserly.

Some people may think their parents have too much money to qualify even though many of the programs are available to elderly people with incomes of more than $100,000. Or the parents may be too proud to accept help.

What’s more, these services can be difficult and time-consuming to find. And it can be a challenge to deal with the paperwork and red tape, especially when you’re already overwhelmed by the daily demands of taking care of an older parent.
To help make the search for help easier, here is expert advice and several resources that will help you find what you need to take care of your aging parents.

THE FIRST STEP Have the hard talk.
“So often I see clients who are in the middle of this situation but know very little about their parents’ finances,” said Henni Fisher, a Brooklyn clinical social worker who specializes in geriatrics. Your parents may be unwilling or unable to give details. Or you may be uncomfortable bringing up the subject.
“It isn’t easy making the transition from the one being cared for to the one giving the care,” said Ms. Fisher.

But you can’t put the conversation off any longer. Reassure your parents that you’re not trying to take control away from them. You’re simply trying to make sure that they have everything they need and that you understand everything they want.
During this conversation, or series of conversations, be sure to ask about one of the largest expenses for older people: assisted living or nursing home facilities. Do your parents have long-term care insurance that can help with this monumental expense? If they don’t, should they get it? (For more information, see our previous article “Getting Insurance for One’s Frailest Years.” (There is a link to it with the online version of this column.)

THE DOCUMENTS You’ll also want to make sure your parents have the proper paperwork in place. In an emergency, you’ll need legal authority to act on your parents behalf. Make sure your parents have signed a durable power of attorney authorizing you or some other trustworthy person to take over financial decisions — including signing checks and paying bills — on their behalf.

And keep in mind these other necessary documents: A durable power of attorney for health care (also called a health care proxy) authorizing someone to make medical decisions when your parents cannot; and a living will outlining your parent’s wishes if life support is needed.

These forms may be available at your local senior center. Or, a lawyer who focuses on elderly issues can answer questions and help put this paperwork in place. To find one near you, go to the National Academy of Elder Law Attorneys (www.naela.org). (If you live in New York State you may need a lawyer’s help sorting out a new 12-page complex power of attorney form, advises Mr. Casserly.)

HIRING AN OUTSIDER Many families find relief when they hire a geriatric care manager. These consultants, which can cost anywhere from $50 to $200 an hour, will assess your parents’ situation, offer counseling and help you find the local services you need.

So vital are these new professionals that my colleague Lesley Alderman will be devoting next week’s Patient Money column to tips on finding the right care manager for your parents’ situation.

Burr Oak Cemetery Reopening for Business

Yesterday, I spoke with the state appointed receiver for Burr Oak Cemetery. I will move forward with planning my Dad's internment. Next steps are to contact the funeral director, the priest, the airline, the rental car company, and any friends who may want to attend.

7 Questions to Ask an Estate Liquidator

The time has come for me to liquidate some of the Scott household assets in Chicago. I will begin with clothing because I feel they should be put to good use now.

My Mom was a clotheshound and accumulated the equivalent of 7-8 closets of high quality, fashionable outfits. She also had many fabulous coats and more than 100 pair of shoes (conservative estimate). Everything is in great condition.
I will explore options for clearing the house of all but furniture. I may hire professionals.

Here is a helpful article by Nell Bernstein, the Caring.com senior editor, on questions to ask an estate liquidator.

Despite the fancy title, estate liquidators can do a lot more than auction off expensive heirlooms. Whether your parents are moving to a retirement community or just downsizing to make independent living more manageable, a good estate liquidator can help them find a new home for all kinds of excess belongings -- and make some money to help finance their new life in the process. These questions will help you hire the right one.

1. Are you bonded and insured?
This should be a given for any legitimate liquidator.
2. How long have you been in business?
Estate liquidators sell belongings in all kinds of venues, but many rely on a personal client list for the bulk of their sales. Someone who's been in business for at least several years is more likely to have a loyal clientele who will want to see what she's got to offer.
3. How do you advertise and who comprises your customer base?
A proprietary e-mail list that numbers in the hundreds -- at least -- is what you're looking for, says Kathy Pimpan of Total Estate Liquidation http://www.totalestateliquidation.com. Other means of advertising to ask about include flyers, newspaper ads, a website, and faxes to repeat customers.
4. What methods will you use to sell my parents' belongings?
Sunday "open house" estate sales are only the beginning these days, says Pimpan, who also uses auction house placement, eBay listings, and consignments. If your parents don't want strangers tromping through their house and going through their belongings -- or the process of selling their things is too emotionally loaded for them -- try finding a liquidator who will do "outright buys," suggests Pimpan -- offering your parents a lump sum for their belongings and then selling them later, without needing your parents' involvement.
5. Do you have a relationship with any local charities?
If you'd prefer that belongings with little resale value go to a homeless shelter rather than winding up in landfill, you'll want to ask this question.
6. How often do you hold a sale?
This question will screen out dabblers, suggests Kathy Pimpan, such as antique dealers who sometimes advertise themselves as "liquidators" in order to get good deals for themselves.
7. Do you understand the emotional meaning of "stuff"?
This may be an unspoken question -- something to watch for rather than ask explicitly. Parting with long-held belongings can be emotional for older people, so you'll want someone who demonstrates empathy and restraint. Someone who talks "over" your parents at a first meeting or brushes off their concerns (reasonable or otherwise) may not have the people skills necessary at a time like this.

Here is a link to the article:
http://www.caring.com/checklists/estate-liquidator-questions

104-Year Old Woman Cannot be Buried Like My Dad

WBBM 780 - Chicago's #1 source for local news, traffic and weather - 104-Year-Old Woman Is Latest Burr Oak Victim

Posted using ShareThis

I Eulogized My Dad 3 Weeks Ago Today

I am glued to the television watching Teddy Kennedy's funeral. My Dad's was also in a Catholic Church: St Dorothy's at 10AM. The Knights of Peter Klaver opened with a decorous ceremony. Fr Bob officiated. I wrote and read Dad's obit and delivered his eulogy.

3 weeks ago today.........................

May Dad Rest In Peace.

see my eulogy remarks here:
http://www.youtube.com/watch?v=8aJ2ToZn6nY

Nursing Home Compare Tool

The AARP just posted an article by Dr. Carolyn Clancy advising us about a helpful new tool for caregiver planning. Here is the article:

In January the federal Centers for Medicare & Medicaid Services unveiled a new tool called Nursing Home Compare (see this link)

http://www.medicare.gov/NHCompare/Include/DataSection/Questions/ProximitySearch.asp?bhcp=1

You can use this tool to look up nursing homes in your area by name, city, county, state or ZIP code.

The tool provides information on nursing homes that have been approved to take patients insured by Medicare and Medicaid. It assigns ratings to nursing homes based on reviews of how many and what type of staff members they have, how well the homes perform on health inspections and how they rank on quality measures.

Each nursing home is given a star rating (from one to five) for its performance on each of these three elements. These ratings are then combined into an overall rating.

This new rating system is based on a 20-year-old law that reformed how nursing homes provide care. It also reflects more recent quality improvement efforts led by consumers, health providers and nursing home experts.

Overall, the new tool gives consumers a snapshot of the care that individual nursing homes provide. It also gives consumers the background to ask more informed questions before they decide on a facility.

I must note, however, that Nursing Home Compare can’t answer all your questions. It cannot tell how things may have changed—for better or worse—once a nursing home was given its rating.

The best way to get a complete picture of a nursing home is to visit it in person. Ask questions of the people who take care of residents, not just those who work in the front office.

You will be able to ask more informed questions after you review the data that go into Nursing Home Compare’s rating system, including:

• Health Inspection Results: Major aspects of nursing home care are included in this measure. Trained people conduct the health inspections by visiting each nursing home, checking medical records and talking to patients. Even though inspection standards are the same from state to state, there are differences in how visits are carried out. That’s why it’s a good idea to compare nursing homes within the same state to get more accurate information.

• Staffing Levels: This measure looks at the overall number of personnel compared to the number of residents. However, staffing levels are more than just numbers—they also include the percentage of trained nurses and other personnel. Nursing homes collect and report this information once a year, so the data may not always be accurate or current. Keep in mind that quality is generally better in facilities with larger staffs that work directly with residents. Make sure you ask about what kind of and how large a staff a nursing home has.

• Quality Measures: Ten important elements of quality of care are covered in the rating system. They include how well the nursing home prevents and treats bedsores and helps people maintain key living skills, such as eating and dressing. Like the staffing data, these data are reported by the nursing home, not by an independent agency.

To get a fuller picture of the quality of care at a nursing home you may be considering, ask the staff about these elements and about other steps they take to improve residents’ care.

The Nursing Home Compare website includes a checklist to use when you visit a nursing home. It also provides links to other resources that can help you know what to look for when deciding on a facility. In the near future, the website will add a section that gives consumers’ perspectives on nursing home quality of care.

As we get more data to help us make decisions about nursing home quality, it’s up to us to put that information to good use. Data alone aren’t enough to arrive at decision, but they are a step in the right direction. A personal visit at which you ask informed questions builds on this foundation.

What To Say When Someones is Grieving A Loss.........

Prolonged Grief Disorder (PGD)

Recent research has psychometrically validated the criteria for Prolonged Grief Disorder (PGD) - a disabling intense state of grief that persists for months, sometimes years. Though not a recognized mental disorder in the DSM-IVTR and ICD-10, inclusion could become a reality with the upcoming DSM V and ICD-11.

I have worked with a few individuals whose significant bereavement would fall into this category. Unable to move forward, paralyzed by the loss and grieving deeply, these individuals were often chastised by family and friends for "not getting on with it already." Often, friends and family don't realize that such statements are hurtful.

The inclusion of PGD as a recognized disorder would bring credibility to this specific grieving process. With it, too, would come ways to deal with the disorder. Dr. David Kessler, Grief and Loss Specialist for Tributes.com offers the best and the worst things to say to someone in this grief state :


The Worst Things to Say:

* At least she lived a long life, many people die young.
* He is in a better place. I am amazed by the number of well-wishers who say this to me!*
She brought this on herself.
*There is a reason for everything. How stupid is this one?
*Aren’t you over him yet? He has been dead for a while now.


The Best Things to Say:

* I am so sorry for your loss.
* I wish I had the right words, just know I care.
* I don’t know how you feel, but I am here If can help in anyway.
* You and your loved one will be in my thoughts.
* My favorite memory of _________ is _________

by Dr Deb http://drdeborahserani.blogspot.com/2009/08/prolonged-grief-disorder-pgd.html

Burr Oakes Cemetery Creates Problems For Our Family

Photos taken at my Mom's burial in Burr Oakes Cemetery, Maplewood Section, on May 3, 2008

I cannot bring closure to my Dad’s death nor can I proceed with legal activities because I cannot bury my Dad.

Yes, my parents bought plots (in the 1950s) in the now infamous, Burr Oakes Cemetery, outside Chicago. This is where four people have been accused of reselling plots and dumping the remains of old bodies in an empty, abandoned lot. The cemetery is an offical crime scene.

Not only did the scandalous story make international headlines, I heard about it in the middle of the Atlantic Ocean, sailing to England on the Queen Mary 2.

According to the news reports, county government has stepped in to oversea day-to-day management of Burr Oakes because it is considered a crime scene. It has been closed to all business for more than one month. It is uncertain WHEN it will reopen. In the meantime, hundreds of families are unable to bury loved ones and thousands more are unable to visit their loved ones.

My Dads funeral director has attempted to contact Burr Oakes directly, I have attempted to contact them directly, our family attorney has attempted to contact them directly—all in vain.

I am in limbo.

I do not know when I should make arrangements
--for a return trip to Chicago (flight, rental car etc),
--for a formal burial service (priest, funeral home, friends etc), nor
--for the numerous agencies involved to process death certificates.

Of note, until an official burial date is stamped on the death certificate, it cannot be used in any official capacity.


I deliberately delayed Dad's funeral with the expectation that Burr Oakes would have reopened by August 8. It is one week after my Dads funeral; he continues to “lie in wait” at the funeral home.

This is not right!

I Felt Like A Good Daughter at Dad’s Funeral

It felt really good to hear positive comments about my caregiving for Mom and Dad at my Dad’s funeral, 3 days ago.

Laverne led by singing my praises as a devoted daughter who dedicated 4+ years to caring for her parents and keeping them in their home, as they wished. She acknowledged all the hard work, long hours, monthly trips to Chicago, and good decisions I made—even all the way from Miami.

Next, Gwen highlighted my dedication to putting my parents’ care and comfort first and to all my hard work as a good daughter.

Shirley commented on how frequently we connected; as she visited Dad weekly. She said I was a great daughter and she loves me.

Dad's Funeral is Today

I saw Dad at the funeral home last night. No matter how prepared I thought I was to see him, I was not prepared to see him. The realization of the finality of it all caught me my surprise and my emotions overwhelmed me.

I know this is normal.

Today is his funeral at St. Dorothy's.

Off To Chicago For Dad's Funeral

I am packing to spend time indefinitely in Chicago.

I am planning my dad's funeral; I will need to complete all administrative duties associated with being executor of his will; and I will need to begin to make arrangements for how to deal with the house. Importantly, my parents bought the house in 1958 and it is my childhood home.

There's so much to process - so much that awaits me. It is all a very stressful time.

God grant me:
The serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference

Asking For Help Is Not Easy

I’ve always prided myself on being fiercely independent – self sufficient to the max-never needing anyone’s help.

Now that Dad is gone and I’m left with an empty house, I probably need help with major life decisions and activities. After all, I am executor of the will and beneficiary of all the residual assets. Dad has no living relatives.

I pray I will have the willingness and wisdom to ask for help and to accept help when offered.

During these times, I’m amazed by how many people offer to help. Often they say let me know if there’s anything I can do for you. I think they really mean it!

I am so unaccustomed to asking for help that in my old way of thinking, I don’t trust them sometimes. I think it’s the perfunctory and polite thing to say.

Hopefully, I am willing…………………

Gratitude

I am grateful I had the strength and resources to honor Mom and Dad's wishes to remain in their home (never going to a nursing home). I kept Mom at home for 3.5 years and Dad for 4.5 years. I modified the house to accommodate two invalids and hired round the clock care. They deserved the best!

I Am Officially An Orphan

William Arthur Scott Lived 96 Years

William Arthur Scott
March 15, 1913–July 10, 2009


"He was a wonderful husband and father

- the kind of real family man you seldom find."

William (Bill) Arthur Scott was born on March 15, 1913 in Tulsa Oklahoma to Arthur Scott and Olivia Dupree. His mother died when he was very young, and Jimmie Scott married his Dad and helped raise him as her son. He attended Guardian Angels Boarding School in Levinworth Texas and graduated from Booker T. Washington High School in the Greenwood district of Tulsa Oklahoma.

Bill was a survivor of the USA’s most brutal incidence of genocide and property damage in the 20th century -The Tulsa Massacre of 1921, in which angry white mobs, backed up by the local government, murdered innocent black citizens, looting and burning till the entire all-black Greenwood section of Tulsa was demolished and the survivors were relocated to detention camps. The attacks left young William and his family of five homeless and destitute. Yet, he overcame the harsh conditions of his childhood, without bitterness, and with a determination to live the American Dream.

He never spoke of the Tulsa Massacre until it gained nationwide attention in 2000, and then only when asked. He preferred to look at the positives in life. With the support of his loving wife Lorraine, he became a model of a family man - a provider, a protector, and a nurturer. He was an example to his beloved daughters, and to neighbors and friends within his community of a caring person devoted to helping and giving. To him, family and community were everything.

As a young man in the 1930s, he migrated to Chicago in search of prosperity. It was on the job at the Jitterbug Restaurant, where he worked as a cook, that he found more than employment. It was from behind the counter there, in 1943, that he fell in love at first sight with Lorraine Joan Hoskins, when he spotted her walking down the street. They became lifelong soul mates and eventually married on April 9, 1944. They lived as a married coupled for 64 years.

Bill served as a cook in the military during WW II, giving many servicemen happy memories of mealtimes, thanks to his gift as a chef. Long after he left cooking as a career, he continued to cook delicious meals for his family, and to treat friends to dinner parties where they sampled his many delectable dishes, including his special BBQ.

Always dutiful and hard working, Bill held multiple jobs to support his family. In his sixties, he even worked three jobs at once including a full time factory job, a part time security guard job, and a clerk position for his local elected official. After 30 years, he retired from Western Electric, where he rotated in several telephone manufacturing positions. While there, he was always on time and never called in sick.

In 1962, Bill and Lorraine adopted two infant sisters and raised them to graduate from college and go onto graduate school. During those years the children were growing up, Bill was always there, doing all that he could to make life beautiful, comfortable, and bountiful. And in the process, he created not only a wonderful life, but many wonderful memories.

Around the house Bill's boundless energy went into the many things that kept family life running smoothly. He was cook, cleaner, handyman, painter, decorator, organizer, housekeeper, suitcase packer, and gift wrapper. He was the Easter-egg dye man, the toy assembler, and EVERY year at Christmas he decorated the house inside and outside. He was also a tree house builder and gardener, who took pride in making the outdoor environment as orderly and attractive as the inside. And on the road he was the family chauffeur and gas station attendant.

Bill placed these demands on himself, and he loved living up to them all- happy to be able to fulfill the dreams that he had for himself, his beloved wife, and his daughters.

For 20 years Bill Scott served the community where he lived as precinct Captain (Chicago's 6th Ward). He took an active leadership role during every election season. He never took the privilege and duty of voting for granted. In fact, he had a passion for participating in the democratic process, and in assisting others in the exercise of the privilege. He went door to door on Chicago's South Side, rain or shine, registering his neighbors during each election season. On Election Day, each year, he provided personal transportation to voters who needed his help.

He was baptized in 1985 At St Dorothy’s Church, where he was an active member of the Knights of Peter Klaver, which he served as group secretary. He was often seen serving Sunday breakfast during all the major church events. His favorite was Mother’s Day.

Predeceased by his daughter Stephanie, his beloved wife, Lorraine, and his only sister, Freddie Payne, he is survived by his daughter, Karla Joy Scott.
****************

Mourner’s Bill Of Rights

You have the right to experience your own unique grief.
You have the right to talk about your grief.
You have the right to feeling multitude of emotions.
You have the right to be tolerant of your physical and emotional limits.
You have the right to experience “grief bursts”.
You have the right to make use of ritual.
You have the right to embrace your spirituality.
You have the right to search for meaning.
You have the right to treasure your memories.
You have the right to move toward your grief and heal.

Adapted from www.centerforloss.com by Alan D Wolfelt PhD

Dad May Not Leave Hospital

I just spoke to the hospice nurse at Mercy hospital. Dad vomited Friday night. She believes he will not leave the hospital. He is cold and more unresponsive than ever.

I know he is ready................

Dad in Hospital 3X This Past Month!

Hospice placed Dad in the hospice unit of Mercy 3X since June 7--3 nights, 5 nights, and now, 9+ nights.

He went back last Saturday, June 27; They were going to send him home today; I made those arrangements.

Now, they say he has respitory problems. They will keep him.
I am on the phone NONSTOP with caregivers, Hospice, hospital, agency, and friends who are keepers of the salary checks.

CHANGE CHANGE CHANGE!!!!!

Dad is back in hospital

I am so stressed over all this I think Dad will outlive me!

I think about death a lot—especially as I am immersed in stories of Michael Jackson’s life and death.

Nursing Home Costs--Average in U.S.=$77,000

State-By-State Long Term Health Care Costs by the AARP

To find the average cost in your state for a nursing home, assisted living facility, adult day center, or home health aide, locate your state in the tables below. The answers may surprise you.

This information was taken from two surveys done by the MetLife Mature Market Institute. These dollar figures represent an average cost based on a sample of long-term care services/facilities in your state for 2007. Your actual costs will vary. Use these costs as a guide in your long-term care planning.


http://www.aarp.org/family/caregiving/articles/state-by-state_long-term.html

Emmet Fox Says We Will See Our Loved Ones Again

Will you meet your relatives and friends when you go over? Where there is a strong emotional link either of love or hatred there is likely to be a meeting. Where there is a strong link of genuine love there is sure to be a meeting. Where there is no particular feeling between two people there will not be a meeting. There is a real danger that if you allow yourself to indulge in hatred of anyone, you will meet when you both have passed over. To prevent this from happening, destroy the link by ceasing to hate.



The so-called dead are very sensitive to our thoughts, and for this reason excessive grief is deprecated. It saddens them and prevents their focusing their attention as they should upon the new life that they are starting. Of course, it seems very hard to tell people not to grieve when one whom they have dearly loved has passed out of sight, but remember that is there is a link of love you will certainly meet again, and that nothing that is good, or beautiful, or true, can ever be lost.



We can pray for those who have passed on, and indeed it is a sacred duty to do so. The practice was generally discontinued after the Reformation because it had been greatly abused and commercialized, but, nevertheless, it is an excellent practice in itself. Realize peace of mind, freedom, and understanding for them



In my Father’s house are many mansions. If it were not so, I would have told you. I go to prepare a place for you (John 14:2).

Funeral Arrangements and Memorial Services

The AARP provides the latest on funeral costs:

Funerals and Burials are Among the Most Expensive Purchases

• In 2001 (latest year figures are available), the average cost of a traditional adult funeral was $5,160 (without any extras).
• Burial costs are an additional $2,000 or more.
• In-ground burial can add another $2,400 to total expenses.
• Flowers, obituary notices, acknowledgment cards, burial liners or vaults, and special transportation can add an additional $1,000.
• Funeral and burial costs combined can easily reach as much as $10,000.

This is consistent with my Mom’s total funeral costs which were close to $10,000 This was after throwing in the family limo for free.

The Funeral Rule
The Funeral Rule requires funeral homes to provide price lists of available options (general services, caskets, outer burial containers). Homes must disclose prices by telephone and offer lists for review at each facility. You should call or visit at least three funeral homes and cemeteries to compare prices. With three lists, you can more accurately assess the total costs and be able to compare.

What is on the Price List?
All available services and their cost, including:
• Funeral director services for initial conference, consultations, paperwork, and overhead. This fee is added to all bills.
• Transportation of the body to the funeral home and to the place of final disposition.
• Care of the body, including embalming and " casketing, " or dressing the body.
• Use of facilities for a viewing, wake, or visitation, and the funeral or memorial ceremony at the funeral home.
• Other options: purchasing flowers, preparing obituary notices, or providing music.
• Alternative arrangements: cremation or immediate burial where the body is interred without embalming, usually in a simple container and no viewing or ceremony with the body present.

Caskets and Outer Burial ContainersA casket is the single most expensive item in a traditional funeral. Traditionally, caskets were sold only by funeral homes, but now cemeteries and third parties sell caskets, even on the Internet. Available in many styles and prices, caskets may be made from metal, wood, fiberglass, or plastic.

Under the federal Funeral Rule, a funeral home cannot charge extra if you provide your own casket from an outside source. No casket is required for a direct cremation, immediate burial, or when donating one's body to science.
Most cemeteries require the use of a grave liner or vault. These outer burial containers surround the casket in the grave to prevent the ground from sinking as settling occurs over time. In some locations, both funeral homes and cemeteries sell vaults and liners. In some areas, it is possible, and less expensive, to purchase an outer burial container from a third party.

Veteran Funerals
If the deceased was a veteran, the U.S. Department of Veterans Affairs provides small burial allowances. All veterans can receive a burial flag and burial in national cemeteries. Burial at no charge may be possible in an area where a national Veterans Cemetery is located. Call 800-555-1212 for the toll-free number of your regional Veterans Affairs office or visit their Web site.

Happy Father's Day to Daddy!

Dad's Bedroom is Ready To Accommodate His New Condition

Barbara and I rearranged Dad's entire room to accommodate him with his new condition. We changed the layout and removed lots of clutter.

We even moved the other mattress, box spring, frame, headboard down to basement---BY OURSELVES.

Now, there is ample room to move around and assist him from both sides of his new hospital bed.

Dad is a Different Patient Now

A New Routine With New Caregiver Instructions

We finally brought Dad home from the hospice unit after two stays of 3-nights and 5-nights.

After remaining relatively comatose in the hospital, eating soft foods in a semi-sleep state, he came home with a whole new burst of energy.

He recognized me and the caregivers, was animated, he fought with the EMTs, and even asked for his favorite fried chicken that he ate by himself. I was thrilled to have parts of him back. He was feisty and alert.

The nurse came by to give new instructions now that his condition has dramatically changed.

He will remain in the hospital bed with bars up.
His toilet will now be his diapers
He must be turned every two hours
There is morphine to ease pain (ONLY AS NEEDED). The caregivers are not fond of drugs and neither am I.

Prior to his arrival, Barbara and I converted his room to more of a hospital room. We moved the other bed (box spring, frame and all to the basement). We removed a lot of items he will no longer need. We cleared the pathway for caregivers to better handle him from BOTH sides of the hospital bed.

It is all a big change. He is heavy to maneuver for turning, changing diapers, cleaning him, and changing linens.

Time will tell if the ladies can handle him. I will monitor closely.

I Extended My Stay Until Dad is Settled Into New Routine

My flight left without me yesterday. I bought a one-way return ticket on another airline. For now, I will leave tomorrow night.

Home wins!

I spent 8.5 hours with Dad in hospice unit yesterday. The doctor suggests Dad go into a nursing home. I did a values comparison grid about the two choices: keeping him at home scored a 91% vs a 35% for moving him to a nursing home.

I spoke with the caregivers to see if they can care for a comatose Dad. They are trained for this work.

I spoke for a long time with the chaplain.

They will probably send him home today with mostly NEW caregiving requirements.

Victory--Dad Finally Ate at 5:30

Spent 7 hours with Dad in the hospice unit today. He was completely unresponsive and did not eat breakfast or lunch.

Finally, at 5:30, a nurse showed me a trick to get him to eat. I fed him for 45 minutes while he slowly ate---in a semi-comatose state.

They say they will discharge him back home tomorrow.

I dont know if we are ready to care from him in his condition.

Dad's in Hospice Unit

I arrived in Chicago yesterday. My Dad was placed in the hospice unit at Mercy hospital twice this week.

I don’t know how to describe how I feel seeing my Dad in the hospital-- frail, disoriented, and unresponsive. He was happy to see me so he smiled. I brought his favorite, Sees candy, so he perked up but he was mostly fading in and out of consciousness, or he was irritable.

The hospice unit is warm. Although, I was alone with Dad, it was good to have some alone time with him.

When the priest came in to pray, that’s when I lost it.

My Dad is completely unrecognizable.

I fed him pureed food. He ate ever so slowly with his eyes closed the entire time.
The hospice nurse gave me a book that describes the stages of moving on. I was shocked to realize Dad is exhibiting them all. I am so unfamiliar with death and avoid dealing with it as much as possible.

I will continue later……………………

Time to go back to the hospital.

Dad Rushed to Hospital Hospice Unit at 2AM

At 2AM, Dad was rushed to the hospice unit at Mercy Hospital. He screamed about excruciating chest pains. It took hospice more than two hours to get him there from the time they received the first crises call about a possible heart attack After getting 4 hours of sleep, I spoke to daytime caregiver, weekend caregiver, night time caregiver (from Dads bedside), hospice unit nurse, Maggie, and hospice unit Chaplain Robert. Such a world wind of emotions!

God grant me the serenity to accept the things I cannot change.
The courage to change the things I can.
And the wisdom to know the difference

Groom's 93, Bride's 89

BY MICHAEL LaFORGIA Palm Beach Post File this under ``It's never too late.'' June 8, 2009

Sunday, before a crowd of friends and relatives, Ebenezer Rose, 93, wed Monica Hayden, 89, in a ceremony at the Crowne Plaza hotel on Belvedere Road.

The couple said they decided to take the plunge after a brief courtship.

Rose, who as a younger man traveled the world as a missionary for the Seventh-Day Adventist Church, met Hayden in church about 20 years ago.

''She had eyes on me all these years,'' said Rose, who lost Bernice, his wife of 58 years, about four years ago. ``By God's grace, we're here.''

He proposed to Hayden, whose two husbands are gone now, too, the second about six months ago.

'I told her, `Each of us is living a lonely life. Why not get married?' ''

When the day finally arrived, Rose dressed in a dapper tan suit and sat in a chair in front of the crowd of well-wishers, awaiting his bride.

She appeared at last to a flourish of music, decked out in white gloves, a beaded shawl and a glittering tiara. A wide grin spread across Rose's face, and stayed there.

After the kiss, and the champagne toast, and the meal and the cake, after the last guests had wished them health and happiness, Mr. and Mrs. Ebenezer Rose lingered a moment to consider their new life together.

''It was more than I expected,'' Mrs. Rose said, her tiara sparkling in the light.

``Beautiful.''

Nine Stages of Caregiving

Gail Sheehy wrote an article for AARP.org outlining the stages of caregiving. She calls it The Labyrinth of Caregiving. It reminds me of the 5 stages of grief because it is a process that ebbs and flows.

It has been FOUR years and FIVE months since I have been a solo, long-distance caregiver. I continue to evolve in my role emotionally and spiritually.

Here are Sheehy's stages:

1. Shock & Mobilization
Your entrance to the labyrinth of caregiving starts with shock and mobilization. You get a call that your mom's fallen, your dad's had an accident, your spouse has a frightening diagnosis. Who to call? Where to start? It's a rollercoaster—you may be up and down for weeks or even months.

2. The New Normal
You realize, perhaps for the first time, you have a new role—family caregiver. This isn't a sprint. It's going to be a marathon. You are living with a new uncertainty and you're not going back to the old normal.

3. Boomerang
Everything has settled down into a new normal routine. It's been months, maybe a year or more. You're handling it, thinking "OK, I can do this," when BOOMERANG! A new crisis erupts. You need to call a family meeting. Who else can help? You need to start thinking about how to take care of the caregiver—that's you!

4. Playing God
You've become very good at caregiving by now. You're the only one your loved one trusts. You believe you're the only one who truly understands what he or she needs. You're seen as heroic. You're playing God. But you know what? We ain't God. We can't control disease or aging. And if we keep trying we'll be overcome by stress and fatigue and come to a dead end.

5. I Can't Do This Anymore!
You were convinced you could do it differently. But a few years into it you break down in tears and total fatigue. You've given up so much. You absolutely must come up for air or you'll go down in despair. Call for help! Start taking at least one hour every day to do something that will give you pleasure and refreshment. Your loved one also needs some time with other people who offer stimulation of a different kind.

6. Circle of Care
You need to create a circle of people who will assume some responsibility for
aspects of care. Let members of your family and friends who have not been involved know that you have reached the end of your rope. They may assume you're handling it all. Even long distance, they can definitely be helpful. And don't be shy about asking for assistance from neighbors, coworkers, your community. A professional care manager can save your life.

7. Coming Back
At the seventh turning, you begin coming back. It is clear now that your loved one is not going to get well and will become more and more needy and dependent. You are approaching the center of the labyrinth. This is where you must begin the process of separation. It is a slow and painful process, but the other way is to lose your self and go down with the person you're caring for. That would be a double tragedy.

There is life after caregiving. What were your lifelines before caregiving? You must have some transports to joy? Pick them up again. They will lead you out of the labyrinth.

8. The Long Goodbye
This is the last turning. Inevitably, there will be times that you will likely feel: Why can't you die? Enough already. Then, of course, you'll feel guilty for thinking such a thing. But it is entirely human and predictable.

No one can answer your most burning question. How long? It's important at this turning to have end-of-life conversations. Encourage your loved one to talk about fears and wishes and goals. What kind of activities give him or her pleasure? And what kind of medical interventions does he want—or want stopped? Hard as it may be, follow your loved one's wishes. This is his or her death, not yours. You are on a different journey.

9. Afterlife of the Caregiver
And then, suddenly, it's over. Your loved one has passed on. You have completed the labyrinth of caregiving. Now what? Maybe you've forgotten who you were before. You've been consumed for so long by caring for someone you love. You have given of yourself and done a beautiful thing. After the first months of mourning, grief will come out of nowhere when you least expect it. Don't sit around and wait for depression to set in. Pick up your passion—whatever you do where time passes and you don't even notice—and follow it. It will lead you on a new path. Look at it as an adventure! And God bless you.

Dad is in hospice for TWO years

Dad is determined to beat the odds. There is no way to think about this without feeling uncomfortable. Hospice is a comfort-care service provide for a person (and their family) once a doctor has diagnosed them as terminally ill (6 months).

Dad continues with both good and bad days. He has good care and I know that helps his spirit desire to thrive.

Most of the time, I am satisfied with the service provided.

Here is an excerpt from my post from May 29 2007:

According to VITAS, the nation's largest hospice provider, End-of-life patient care pushes and tests us every day. Each day is a new life for hospice patients, continually creating new demands on caregivers. Each day, hospice must re-define itself to address the dynamic needs of patients and families.

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. They provide the following descriptions of hospice services from their website: caringinfo.org

How Does Hospice Work?

Hospice care is for any person who has a life-threatening or terminal illness. Most reimbursement sources require a prognosis of six months or less if the illness runs its normal course. Patients with both cancer and non-cancer illnesses are eligible to receive hospice care. All hospices consider the patient and family together as the unit of care.

The majority of hospice patients are cared for in their own homes or the homes of a loved one. “Home” may also be broadly construed to include services provided in nursing homes, hospitals and prisons.

Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week.

Who is the Hospice Team?

Hospice care is a family-centered approach that includes, at a minimum, a team of doctors, nurses, social workers, counselors, and trained volunteers. They work together focusing on the dying patient’s needs; physical, psychological, or spiritual. The goal is to help keep the patient as pain-free as possible, with loved ones nearby until death. The hospice team develops a care plan that meets each patient's individual needs for pain management and symptom control.

It is important to find out what the role of the patient's primary doctor will be once the patient begins receiving hospice care. Most often, hospice patients can choose to have their personal doctor involved in the medical care. Both the patient's physician and the hospice medical director may work together to coordinate the patient's medical care, especially when symptoms are difficult to manage. Regardless, a physician's involvement is important to ensure quality hospice care. The hospice medical director is also available to answer questions you or the patient may have regarding hospice medical care.

The team usually consists of:
The patient' s personal physician;
Hospice physician (or medical director);
Nurses;
Home health aides;
Social workers;
Clergy or other counselors;
Trained volunteers; and
Speech, physical, and occupational therapists, if needed.

What Services Does the Hospice Team Provide?

--Among its major responsibilities, the interdisciplinary hospice team:
--Manages the patient’s pain and symptoms;
--Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
--Provides needed medications, medical supplies, and equipment;
--Coaches the family on how to care for the patient;
--Delivers special services like speech and physical therapy when needed;
--Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time; and
--Provides bereavement care and counseling to surviving family and friends.

In many cases, family members or loved ones are the patient's primary care givers. Additionally, hospice recognizes that loved ones have their own special needs for support. As a relationship with the hospice begins, hospice staff will want to know about the primary caregiver's priorities. They will also want to know how best to support the patient and family during this time. Support can take many different forms, including visits with the patient and family members; telephone calls to loved ones, including family members who live at a distance, about the patient’s condition; and the provision of volunteers to assist with patient and family needs.

Counseling services for the patient and loved ones are an important part of hospice care. After the patient's death, bereavement support is offered to families for at least one year. These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered by the hospice or the hospice may make a referral to a community resource.

I decided to go online to locate VITAS closest to my parents and picked up that heavy telephone to determine how the Scott family can receive their services.

I spoke with Cindy a helpful call center specialist. I provided her with my mother’s and father’s Social Security numbers, insurance information and medical diagnoses. She says the next steps are to have their doctor contact them to authorize hospice service. Once they receive that call, they will send out a registered admissions nurse to conduct an assessment of why parents need.

Hopefully, they will be able to schedule an appointment with the registered admissions nurse to coincide with my upcoming trip to Chicago at the end of the week: May 31 through June 5, 2007.

I will keep my fingers crossed, that my parents will both be accepted and that we will soon begin to receive professional help with things we don't know how to handle emotionally.

I will keep you posted on the outcome.

Nine Tips for Accessible Travel by Your Elderly Parents

Nine Tips for Accessible Travel by Your Elderly Parents

Here is a helpful article written by Candy B. Harrington of disaboom.com. It will be interesting to observe trends in elder travel on my upcoming crossing on the Queen Mary. This luxury liner attracts a more mature clientele, some of whom will no doubt need assistance with travel.

Are your elderly parents reluctant to travel because they just don’t get around like they used to? Well they’re not alone. According to the 2002 US Census, nearly 23 million people had difficulty standing for an hour, while 21 million people had difficulty walking up a flight of 10 stairs.

But that doesn’t mean globetrotting is out of the question for senior citizens; in fact, with a little advance planning your parents can still enjoy travel. Here are a few tips to share with them, before they make their next trip.

• Even if you can walk, reserve an airport wheelchair if you tire easily. Some airports are huge and you could easily put on several miles while in transit, and arrive at your destination exhausted.

• You are not required to remove your shoes at the airport security checkpoint if you are physically unable to do so. Just tell the TSA agent that you can’t do it, and they will hand wand you and swab your shoes for explosive residue.
• Tell the gate agent that you would like to pre-board the aircraft. This means that you will board before the rest of the passengers. Pre-boarding allows you to take things at your own pace, and gives you a little extra time to get settled in your seat.

• If you need wheelchair-accessible transportation from the airport to your hotel, choose a hotel that has a free airport shuttle. Under the Americans with Disabilities Act, if the hotel provides free transfers, they must also provide free accessible transfers, even if they have to contract out the service.

• Cruises are a great accessible travel choice, but new cruise ships are huge and it can be very tiring to walk from one end to the other. If fatigue is a factor, rent an electric scooter and have it delivered directly to your stateroom. Check with the cruise line for their approved vendors.

• If you drive to the cruise departure port, remember that parking is free at all Florida cruise ship piers for cruise passengers who have permanent accessibility modifications installed on their vehicles.
• If you tire easily, be sure and request a hotel room near the elevator. For safety's sake, it's also advisable to ask for a ground floor room whenever possible.

• Remember, in Europe the first floor is not at street level, so if you want a room at street level, ask for a room on the ground floor. Many small European hotels only have stairway access to the first floor, and if they have an elevator it's usually very small.

• Don’t forget to pack your accessible parking placard with you whenever you travel. It’s good everywhere in the US (except for New York City), Canada and Europe.
Finally, encourage your parents to do extensive pre-trip research, and expand their horizons. There really are a lot of accessible travel offerings out there and the internet is a great place to find updated access information.

Candy Harrington is the editor of Emerging Horizons and the author of Barrier-Free Travel; A Nuts and Bolt Guide for Wheelers and Slow Walkers. She blogs regularly about accessible travel issues at www.BarrierFreeTravels.com.

See Related Accessible Travel Articles
For tips and information about finding and booking an accessible hotel room, read Finding an Accessible Room Beyond ADA Compliance.

Completed and FAXED Insurance Forms to Dad’s dentist.

Dad will see a new dentist today. Friends will transport him in his wheelchair since he is unable to walk. He has been excited about going all week long.

I went to Aetna’s website, downloaded a dental form, completed it and FAXED it, (along with copy of Dad's insurance card) to the new dentist.

Technology certainly helps this long distance caregiver to do her job.