Merry Christmas!

Church Members Bring Holy Communion

My parents were active members of St Dorothy’s Church for more than thirty years. Because of this, the pastor and other church members visit regularly and even bring first Holy Communion, a sacred ritual for Catholics. Each time my Mom was hospitalized, in fact, a priest and other members paid Mom a visit. For Thanksgiving, they brought dinners for my parents and me.

Today, a member brought first Holy Communion to my parents and me. They will come back tomorrow for Christmas Eve.

It is nice to have ongoing support from their spiritual community.

Mom and Karla Thanksgiving 2007

I Hired A New Caregiver Today!

Since I have served as a long-distance caregiver, I have realized how challenging it is to find good night time help.

In all, I have hired 10 caregivers, including the newest one. They have lasted from one week (a state agency replacement who spent more time smoking than caregiving) to four years (a state agency homemaker who began working eight hours a week for my parents in 2004 before my mom got sick).

Most of the time, I have managed four shifts of workers, and sometimes five.

The caregiver that I hired in November to share the nighttime caregiver duties, has consistently proven to be a problem. In fact, I hear only negative feedback about her from the other caregivers, and most importantly from my Dad. He has never felt comfortable around her. Personally, I find her to be emotionally unstable and extremely unprofessional. I feared her volatile personality could turn violent-that is why I fired her last night. I have watched her closely and conclude she cannot help herself.

Rigorous searching along with a stroke of luck brought me a new candidate yesterday. She was recommended to me by a Department of Aging director whom I’d met the previous day at a family caregiver support meeting. During the interview, I was pleased she was the consummate professional, thorough with her application, and appropriately personable.

I trained her this evening.

update: She began working Sunday night (December 2). So far, the other caregivers like her and Dad approves!

Family Caregiver Support Groups Help!

I attended family caregiver (of aging adults) support meetings at two separate locations yesterday.

Staff of the Salvation Army facilitated both groups. Chuck Sturbis led the first meeting, where I was the sole caregiver in attendance and Niyi Braimah M.S. M.A., led the second meeting of 9 attendees.

Both gentleman advised us of the myriad services offered by Chicago’s Department on Aging—services for both seniors and their caregivers. Some include case management, home delivered meals, legal counsel, respite, training/education, and counseling. The phone number is 312-744-4016.

I was impressed by the wide variety of senior activities offered at the centers including: computer training, exercise classes, health screenings, free meals, transportation, line dancing, pool and chess tournaments, personal trainer sessions, defensive driving classes, tax preparation, Spanish lessons, bible study, trips and tours, holiday parties, choir practice, music and dance therapy.

Sharing personal accounts of our specific family care giving issues in the group was extremely cathartic. I plan to attend more of these sessions when I come back to town!

Chicago Department on Aging Expands Caregiver Support Groups

Monthly Caregiver Support Groups

In Chicago, the Department on Aging has expanded Caregiver support group efforts adding additional monthly meetings at 12 regional and satellite centers throughout the Chicago metropolitan area. There are two centers near us. 1) The Satellite Center group meets the 4th Tuesday of the month at 10AM; 2) The Regional Center group meets the 2nd and 4th Tuesday of each month at 2PM.

Weekly Caregiver Days

Weekly Caregiver Days are now offered by five Chicago Regional Centers beginning in November 2007. Specifically these centers will feature a day of activities ranging from art classes to exercise sessions to computer training workshops for caregivers. Importantly, companion/”babysitting services” will be provided for elderly loved ones from 830Am til 430Pm on those days.

I look forward to exploring tomorrow!

Physical Therapy Has Reversed my Mom's Weakened Condition

During the time my Mom was in hospice care, her mobility began to deteriorate to the point where she required a wheelchair for movement. Since she was released from hospice last month, her new home health care agency assigned a physical therapist to help her.

The results of the first 6 sessions have been nothing less than miraculous. She has resumed walking comfortably with her walker, she is more alert than ever, and her emotional well-being reflects these improvements. She even smiles more often and her voice is stronger.

My Mom’s recovery demonstrates the power of physical therapy and of all the related exercises that strengthen the muscles. We can all learn from this experience!

Replacing Ancient Household Appliances

I am convinced that we bought our household washing machine and clothes and dryer from Sears, while Richard Nixon was still in the White House.

It should come as no surprise to me that yesterday, the Sears appliance repair guy informed us they no longer made parts for our antiquated clothes dryer—it is more than 35 years old. It had finally died, and its sister, the washing machine, was also on its last leg. In fact, both the washer and dryer have been dying a slow death, requiring more frequent visits from the household appliance repair guys.

I knew this was coming so in anticipation of having to replace these appliances, I had actually searched for washers and dryers online about six months ago—so, I was already somewhat familiar with the process of ordering big-ticket items online-- without having to actually go onto the show room floor.

Because we are brand loyal to Sears, I went directly to Sears’s website to search for washing machines and dryers.

Since there are so many models with a variety of features available, it can be an overwhelming experience to review and compare them all. Without the aid of the expertise of an appliance sales person to answer my questions, I could easily make a mistake.

Fortunately, Sears has added a new feature: an online assessment tool that guides you through the major choices and that helps you determine which model will best suit your family's needs. Some of the questions it asked our about volume of laundry, size of loads, gas or electric for the dryer, and price ranges. I carefully answered the questions and was delighted to see that my choices had been narrowed down to only six models.

My next decision-making tool was to read online evaluations and ratings (1-5«) from customers who had actually purchased those models. I found this to be immensely helpful. (As it is helpful for choosing books, hotels, computers, cameras etc). It made it even easier for me to settle on my choices: The Whirlpool, Super Capacity Plus gas dryer and Whirlpool Super Capacity Plus washing machine.

I purchased items that were on sale, I ordered delivery service, and I bought five-year warranties/maintenance agreements from Sears. I also paid an extra $10 per item to have the delivery team remove the old machines.

I ordered the items at 5:30 p.m. Eastern standard Time on Thursday; they promised delivery on Sunday. I'm surprised to know they have Sunday deliveries. I suppose they are appealing to working families who need access to services both Saturday and Sunday.

My next steps are to ensure that the Sunday daytime caregiver knows how to open the door in the back yard that leads to the basement and that she has access to keys to the backyard gate.

I will see the new items when I arrive on Tuesday for the Thanksgiving holiday (11-22-07).

Foot Massage for Mom Today

I gave Mom a foot massage with a special mint foot lotion today.

She beamed a big smile!

Today I will interview another replacement caregiver.

A current caregiver recemmended a women to provide relief for our night time caregiver. She is one of her Mom's tenants.

Here is my interview agenda.

• Have her complete job application (see NewCaregiverHelp.com for sample employment application)
• Describe the job duties
• Interview candidate
• Share Scott Family Caregiver Team Principles
• Discuss night time schedule
• Introduce candidate to Mom and Dad
• Give candidate a tour
• Discuss on-the-job-training schedule

Wish me luck. Our night time caregiver needs help!

Hospice Drops My Mom

Miracle of all miracles!

My Mom, who was diagnosed as hospice ready in February 2005, is being dropped from hospice after 4 months of service.

She continues to beat the odds.

Although I wil miss the extra layer of support for her, I am glad she continues to improve.

I must now explore how to provide continuity of care for her. I will sign the release papers in Chicago tomorrow.

Dad, on the other hand, will continue to receive hospice service!

Test your knowledge of long term care.

Test your knowledge of long term care.

1. Family caregivers provide what percentage of long term care?

a) 20%
b) 30%
c) 50%
d) More than 80%

2. In 2006, on average, one year of care for a semi-private room in a nursing home costs:

a) $28,000
b) $38,000
c) $42,000
d) $62,000


3. The government will pay for my aging parent’s health care when they become incapacitated. They will even pay me to care for my loved one.

a) True
b) False

4. Hospice is a place you send the terminally ill to die.

a) True
b) False

5. The average caregiver is:

a) Born before 1940, cares for her husband, is wealthy
b) Born before 1960, lives 6 hours away, and is highly trained at skilled nursing care include changing diapers and lifting seniors
c) Born in 1960, married, female, works full or part time, has older children at home, spends 20 or more hours a week caregiving for at least 4 years.

6. What percent of those receiving formal or informal care are residing at home?

a) Less than 10%
b) 25%
c) 50%
d) More than 85%

7. Employed caregivers miss an average of how much time per month away from work

a) 30 minutes
b) 4 hours
c) 1 day
d) 2 days

8. Once you designate a power of attorney, you cannot change your mind
a) True
b) False

9. Guardianship is the best solution for all caregivers of aging loved ones
a) True
b) False

10. Alzheimer’s disease is easily diagnosed with a simple test because the cause is clearly known.

a) True
b) False

11. The average nursing home patient is:

a) 85 or older and has Alzheimer’s
b) A stroke victim who has no family
c) A widowed man who had an accident

12. Most people aged 65 and older have long term care insurance?
a) True
b) False


13. Most older Americans discuss end-of-life wishes and have planned their estates.

a) True
b) False

14. A reverse mortgage is beneficial for all seniors.
a) True
b) False

15. Average life expectancy has increased by about ____ years to ____ years since the Social Security program was implemented in the 1930s

a) 15 to 78
b) 25 to 65
c) 20 to 85
d) 12 to 75

16. Those 65+, although they represent 12% of the total population, they account for ____% of total national healthcare expenditures, ____% of hospital stays (admissions), and nearly ____% of all days in the hospital!

17. Only cancer patients may receive hospice care.
a) True
b) False

18. The average 4-hour home healthcare visit costs:
a) $40
b) $52
c) $60
d) $76

19. What is the most requested form of help by caregivers:

a) FMLA time
b) Adult Day Care
c) Free funeral planning
d) Respite Care
e) Meals on Wheels

20. Since 1993, the Family and Medical Leave Act (FMLA), (a federal law) offers eligible workers up to ________ a year of unpaid leave for family caregiving without loss of job security or health benefits.

a) 12 weeks
b) 4 weeks
c) 2 weeks
d) 5 days

21. Injuries from falls are the 6th leading cause of death among the elderly.
How often do those aged 65+ fall each year?

a) 1 in 20
b) 1 in 10
c) 1 in 5
d) 1 in 3

answers in previous post dated September 6

Test Your Knowledge of Long Term Care.

Test your knowledge of long term care.

Take the test first. See posting dated September 15.

Answers

1. Family caregivers provide what percentage of long term care?

a) 20%
b) 30%
c) 50%
d) More than 80%

2. In 2006, on average, one year of care for a semi-private room in a nursing home costs:

a) $28,000
b) $38.000
c) $42,000
d) $62,000

3. The government will pay for my aging parent’s health care when they become incapacitated. They will even pay me to care for my loved one.

a) True
b) False

Most elders and their families assume the government funds long term care. As a result, very few plan for long-term care.

Government programs such as Medicare, Medicaid, and Veteran’s Administration cover long term care costs only under specific and limited number of conditions.

Medicaid covers long term care costs for those who qualify meaning their assets and income are below $2000.

Medicare only covers short term treatment of acute illness or accidents. A physician must prescribe these medical services. In many cases, treatment lasts only thirty days.

Most long term care is provided free of charge by family members.

4. Hospice is a place you send the terminally ill to die.

a) True
b) False

Hospice care is a service that provides comfort care for any person who has a life-threatening or terminal illness. Most hospice patients are cared for in their own home or the home of a loved one. Hospice care is a family-centered approach that includes a team of doctors, nurses, social workers, counselors, clergy persons, and trained volunteers. They work together focusing on the dying patient’s needs-- physical, psychological, or spiritual. The goal of hospice is to help keep the patient as pain-free as possible, with loved ones nearby until death. All hospices consider the patient and family together as the unit of care and they even provide help with bereavement.
Medicare and Medicaid cover virtually all hospice costs including medication, respite care, equipment ) oxygen tanks, hospital beds) once the patient qualifies.

Importantly, hospice staff is on-call 24 hours a day, seven days a week.

5. The average caregiver is:

a) Born before 1940, cares for her husband, is wealthy
b) Born before 1960, lives 6 hours away, and is highly trained at skilled nursing care include changing diapers and lifting seniors
c) Born in 1960, married, female, works full or part time, has older children at home, spends 20 or more hours a week caregiving for at least 4 years.

6. What percent of those receiving formal or informal care are residing at home?

a) Less than 10%
b) 25%
c) 50%
d) More than 85%

7. Employed caregivers miss an average of how much time per month away from work

a) 30 minutes
b) 4 hours
c) 1 day
d) 2 days

8. Once you designate a power of attorney, you cannot change your mind
a) True
b) False

9. Guardianship is the best solution for all caregivers of aging loved ones
a) True
b) False

Guardianship, a complicated and time-consuming process, should be a solution of last resort.

10. Alzheimer’s disease is easily diagnosed with a simple test because the cause is clearly known.

a) True
b) False

Scientists do not yet fully understand what causes Alzheimer's disease. Age is the leading risk factor followed by family history.

At specialized centers, doctors can diagnose "possible" or "probable" Alzheimer's disease correctly up to 90 percent of the time. Doctors use several tools to diagnose "probable" Alzheimer's disease. These tools include a complete medical history and tests that measure memory, problem solving, attention, counting, and language abilities. Medical tests such as analysis of blood, urine, or spinal fluid are used to determine if the dementia has another cause.

11. The average nursing home patient is:

a) 85 or older and has Alzheimer’s
b) A stroke victim who has no family
c) A widowed man who had an accident

12. Most people aged 65 and older have long term care insurance?
a) True
b) False

Less than 10% of those 65 and older have Long Term Care Insurance. This product did not appear on the market until the 1980s.

By 2005, roughly 7 million LTCI policies were in force in the United States. Most policies sold today (90 percent) cover services received in a range of settings, including institutions and at home. Typically, policies reimburse the insured for long-term care expenses up to a fixed amount, such as $100 or $150 per day.

To receive benefits, the insured must meet the policy's disability criteria. Nearly all policies define disability as either severe cognitive impairment or the need for help in performing at least two “activities of daily living” such as bathing and dressing.

In 2005, the typical purchaser was age 61 and had fairly substantial income and assets. Nearly half (49 percent) of purchasers had incomes over $75,000 per year and more than three-fourths (76 percent) had over $100,000 in liquid assets. By comparison, only 30 percent of the general population age 50 and older had liquid assets in excess of $100,000.

13.Most older Americans discuss end-of-life wishes and have planned their estates.

a) True
b) False

Lack of planning for long term care causes major problems for families concerning eldercare housing, medical, end-of-life, money matters and day-to-day care

14. A reverse mortgage is beneficial for all seniors.
a) True
b) False

A "reverse" mortgage is a loan against the home that does not have to pay back for as long as the owner lives there. With a reverse mortgage, you can turn the value of your home into cash without having to move or to repay the loan each month. Eligibility requires the home owner to be at least 62 years of age and to have majority equity. Once the owner dies, the bank takes possession of the home.

Although there are significant advantages for some elders, not everyone will benefit from this financial management tool.

15. Average life expectancy has increased by about ____ years to ____ years since the Social Security program was implemented in the 1930s

a) 15 to 78
b) 25 to 65
c) 20 to 85
d) 12 to 75

16. Those 65+, although they represent 12% of the total population, they account for ____% of total national healthcare expenditures, ____% of hospital stays (admissions), and nearly ____% of all days in the hospital!

Although they represent 12% of the total population, they account for 36% of total national healthcare expenditures, 36% of hospital stays (admissions), and nearly 50% of all days in the hospital!

The population over age 65 are very disproportionate users of healthcare.

17. Only cancer patients may receive hospice care.
a) True
b) False

Patients with both cancer and non-cancer illnesses are eligible to receive hospice care. The determining factor is if the patient is diagnosed terminally ill with 6-months or less time to live.

18. The average 4-hour home healthcare visit costs:
a) $40
b) $52
c) $60
d) $76

The national average cost of a home health aide is $18 per hour.

19. What is the most requested form of help by caregivers:

a) FMLA time
b) Adult Day Care
c) Free funeral planning
d) Respite Care
e) Meals on Wheels

Respite care is when someone comes and gives the regular caregiver some "time off" from their duties. Many local government and community agencies provide this help free of charge.

20. Since 1993, the Family and Medical Leave Act (FMLA), (a federal law) offers eligible workers up to ________ a year of unpaid leave for family caregiving without loss of job security or health benefits.

a) 12 weeks
b) 4 weeks
c) 2 weeks
d) 5 days

21. Injuries from falls are the 6th leading cause of death among the elderly.
How often do those aged 65+ fall each year?

a) 1 in 20
b) 1 in 10
c) 1 in 5
d) 1 in 3

How did you do????

Helpful Service: Grocery Ordering From Afar

An old college buddy, Mary Lou, sent me the following helpful tip:

I looked into something for my parents during their most recent 'crisis' and thought maybe you would be interested for your Web page about caring for aging parents.

My folks are homebound when my dad can't drive and this worries them to no end. My mother gets especially obsessed about grocery shopping. Well, in their area (Long Island) I found out that the grocery chain Walbaums will deliver online orders for a small fee. This means that even though my folks don't have a computer, I can order and pay for their groceries from here, even request an approximate delivery time and day, without anyone leaving home. Of course they have yet to use the service, but just knowing that any one of their children could take care of their grocery order remotely seemed to be a big relief to them. You can review the site at http://shopwaldbaums.com/.

Emotional Roller Coaster

Serving as long distance caregiver for parents in their 90s (for 2.5years) has given me such an emotional roller coaster ride. Sometimes I feel like my emotions are ping ponged around as I take one step forward and two steps back.

I experience such emotional highs and lows that I often don’t recognize myself.

Common emotional states that I bounce around are:

denial to acceptance
fear to hope
uncertainty to knowing
disgust to compassion
disillusionment to maturity
anger to forgiveness
depression to healthy grieving
anxiety to serenity

Sometimes my only respite is feeling numbness.

This visit bombarded me with countless “ping-ponging” moments.

--First, I met with funeral directors to explore pre-arranging funerals for my invalid parents who are in hospice.
--Then, I met with church officials to discuss funeral guidelines.
--Next, I met with obituary program printers to finalize program materials including scanning of photos and finalizing slide show/video show. I left a deposit. Of note, I began working on my mom’s obituary booklet two years ago, when the doctor told me repeatedly she was in critical condition.
--I spoke with several of Mom and Dad’s church friends and club members to gather input in to planning special funeral ceremonies. Of note, when I returned home, several of them had left messages on my answering machine.
--I located my Dad’s military discharge papers to help procure a flag for his ceremony. I've been told I will also be able to get a military grave marker. The funeral director says they will send out soldiers to fold his flag at the cemetery.
--I met with the funeral director I will use and she gave me quotes for a double funeral as well as individual funerals. I felt very protected by her and trust her implicitly. We attended the same grammar school and she is now president and CEO of the family business. She insisted that in addition to planning individual funerals, that we plan a double funeral. In her experience there is a great likelihood this will be the case.
--I notified all the caregivers of the funeral director to be contacted in case of emergency.
--I finally met the hospice physician. She came by to analyze my mother's open skin wounds.
--I spoke with a dear grade school and high school friend for hours. She came to visit us and she recommended the funeral director I selected.
--The hospice minister came by to visit my parents.
--I saw my parents come to life when a good church friend brought her poodles by for a visit.
--I met the CNA who bathes Dad twice a week.
--I met a substitute nurse who came to check on my parents.
--I selected caskets, flowers (white roses), musician, and outfits.
--Before I left, I set aside outfits for both mom and dad.
--I contracted pest control service. I was here while she ferreted out the problem.
--I found life insurance policies and contacted the underwriting company to determine the status.
--I hired repairmen to fix the clothes dryer.
--I bought my parents new comforter sets. The old ones had worn out.
--I agreed to sell the other car. It is possible that one of the caregivers will purchase it from us. It is a 94 Buick that has only 28,000 miles.
--I had good, long talks with all 4 caregivers.
--I made my parents room more senior friendly by moving more items down to the basement. Now, the door swings open and freely, and there is more room to maneuver.
--I was able to witness my dad finally using the portable commode.
--I created a plan of next steps in case of “emergency”. First on the list is contacting Reverend Miller at the church to determine his availability to perform a funeral.
--I paid bills and handled all correspondence.
--I gave emergency contact info for when I go to India (September 19-October 1).
--I was told my Dad is still officially in hospice because of his heart. Mom does not qualify.
--I got prescriptions refilled.
--I bought my Dad new slippers. (Actually, I bought them in Miami; the adjustable kinds with Velcro closures are difficult to find.
-- I arranged for my dad's name to be added to the weekly prayer list at St. Dorothy's. Mom's name has been listed weekly for 2 1/2 years.
--I bought a new cake that my Dad likes and eats daily now.

I feel serene knowing I have attended to the present and planned for the inevitable.

For now, my emotions are in check.

I went to pre-arrange funerals today

The funeral director told me I was the most organized client she’s ever met.

Senior Humor Website

Here is a website that provides some senior humor and some thought-provoking material. Enjoy!

http://www.sticksite.com/oldfolks.htm

My 94-year old Dad has needs

Charlotte informed me all the caregivers overhear Dad calling Mom to his bedside to inform her he has needs. He wants Vivian to leave the bars down on her hospital bed.

Even though my Dad’s arthritis causes severe pain, his libido has not diminished.

Letter Asking For Help!

Dear Ernestine August 10, 2007

I am writing to ask for your help. You are one of my mom's oldest and dearest friends.

As difficult as it is to face reality, I am trying to do what’s best by planning my Mom’s end of life services now. I will make much better decisions if I make them now while I have a clear mind rather than waiting until I am grieving. Both Mom and Dad are under the care of hospice.

I would like you to play a role. Specifically, would you be willing to speak about my mom for two to four minutes during the funeral or wake service? You could simply jot down one of your most favorite memories and then talk about it briefly.

I am planning some combination of a funeral at St. Dorothy's, a viewing at a funeral home, and the burial at Burr Oak Cemetery. I know absolutely nothing about funerals and I have avoided them ever since I lost my sister back in May 1983. I am doing as much research as possible now.

I am asking you in advance so you will have some time to formulate your thoughts.

Also, who else do you think I should ask?

I would appreciate any thoughts you have about all this. You have known my mom very well---for more than 50 years!!!!!!!!

Thank you in advance for your support!

I have been coming to town every month to oversee all my parents’ affairs. As you know, I hired a staff of round-the-clock caregivers. I know you have met several of them.

Love Always,


Karla Scott.

Benefits of Funeral Preplanning

Procrastination has ruled my behavior when it comes to planning my parents' funeral, their wake, finalizing cemetery arrangements, writing an obituary, choosing eulogists etc. Why? because of all the complex emotions surrounding death, grieving, my ignorance of funerals, vulnerability, and mostly fear I will make wrong decisions because I am the sole decision maker.

Because of the recent string of close calls with my Mom, I have resumed activities (I began two years ago when my Mom was critical) of funeral planning.

I wrote my Moms obituary program, I pulled out the DVD with videos and photos (I did this work two years ago), I contacted casket manufacturers, funeral brokers, the cemetery, and funeral homes. I have also consulted with close friends of my Mom and several of my close friends.

Although my panic and feelings of being overwhelmed still run high, I take comfort in knowing I am taking action steps.

My Next Steps:

Choose funeral home
Consult with funeral home director
Formalize plans
Make funds available
Leave a deposit with funeral home. Prepay at today's prices.
Begin paying cemetery fees of opening/closing plots and for concrete liners ($1510 per person)
Order and pay for caskets online (500% savings)
Contact St Dorothy’s church
Choose eulogist
Find caterer
Select flowers and music
Form a team to help me carry this out.

Here are helpful notes about funeral preplanning that I found online from The Preplanning Network.

Since mortality faces us all, the importance of preplanned arrangements should be emphasized. Preplanned arrangements spare survivors the burden of having to make decisions and incurring expenses on your behalf during their time of grief. Most importantly, planned arrangements ensure that your wishes are fulfilled. Historically death has been a taboo subject that people attempt to avoid until they are faced with the responsibility of making arrangements for the disposition of a deceased family member or friend. Making arrangements for disposition at the time of need can prove to be a difficult and an often unnecessarily expensive proposition.

Benefits of planning NOW!!

---You can beat inflation by locking in a price now. Why pay more down the road for the same products and services?
---You make decisions with the head vs. the heart. When you are under the strain of grief, you are vulnerable to making bad decisions and overspending.
---You can make decisions together. You can incorporate the wishes of your loved one and you can involve all family members. Never make lonely, hasty decisions.
---You can pay over time from earnings vs. an immediate cash outlay from savings

Forgiveness

The message of forgiveness appears often in my life lately and has inspired me to research this spiritual principle. In processing the data froml my search, what I have I realized is that my actions towards my parents demonstrate that I am already forgiving them. Their controlling and often critical manner over the years caused me lots of pain. As an adult, I have the choice to let go of the negative thoughts and replace them with positive loving, compassionate ones. I acknowledge that they did their best as parents, only wanting the best for me.

Yesterday, a good friend shared with me a definition of forgiveness that surpasses all the rest: it is simple, it is accurate, and it is easy to apply.

Forgiveness is remembering only the good.

When I hear this definition, I am instantly catapulted down memory lane to my childhood where fond, loving memories abound.

After my parents adopted us, they hired a full-time live-in nanny to take care of us. They gave up their bedroom for seven years. So the nanny would have a place to live.

Every year, we had two Christmas trees filled with all the toys on our list and other items that we needed.

Every year, our dad decorated the house from top to bottom for all the key holidays, including Christmas, Easter, and July 4. Dad died our Easter eggs every year; he wrapped Christmas presents; and he strung Christmas lights and other Christmas decorations outside our two-story house. Our house was always the prettiest one on the block.

Dad built us a tree house in our backyard.

One of my common questions was what's next, mommy. We had active lives as children with weekends that included picnics, amusement parks, museums, trips to the beach, birthday parties, and trips to Disneyland. I always trusted mom to have a busy fun-filled schedule for us.

These are just some of the fond memories I have of my parents growing up.

Here is an article about forgiveness that actually provides 10 actions steps on how to take this important spiritual principle seriously.


How to Forgive: 10 Guidelines
By Victor M. Parachin, ordained minister, speech writer, and author of ten books on prayer, healing, and relationship health.

As poet Edwin Markham approached his retirement years, he discovered that the man to whom he had entrusted his financial portfolio had squandered all the money. Markham's dream of a comfortable retirement vanished. He began to brood over the injustice and the loss. His anger deepened. Over time, Markham's bitterness grew by leaps and bounds. One day while sitting at his table, Markham found himself drawing circles as he tried to soothe the turmoil he felt within. Finally, he concluded: "I must forgive him, and I will forgive him." Looking again at the circles he had drawn on the paper before him, Markham wrote these lines:
He drew a circle to shut me out, Heretic, rebel, a thing to flout; But love and I had the wit to win, We drew a circle to take him in.
Although Markham wrote hundreds of poems contained in many book volumes, the words he wrote while forgiving are his most popular and memorable. As he forgave, a tremendous act of creativity was released within Markham. The poets and mystics among us have long known and declared that the act of forgiveness releases great healing power.
Author and minister Charles Fillmore recommended forgiveness as the most effective way of restoring inner harmony and balance: "There is a mental treatment guaranteed to cure every ill that flesh is heir to: Sit for half an hour every night and forgive everyone against whom you have any ill will or antipathy," he wrote.
While forgiveness has always been an important concept in religion and ethics, only recently have psychologists begun to discover its powers as a psychotherapeutic tool. In three separate studies, people who had not resolved the wrongs done to them - college students, elderly women, and incest survivors - all improved when therapists helped them learn to forgive. Although an increasing number of counselors recommend that we forgive those who have hurt us, many people find forgiveness difficult to offer. Here are 10 guidelines to help extend forgiveness and ease resentment.

1. Educate yourself about forgiveness. "Forgive," according to Webster's New World Dictionary, means: "to give up resentment against or the desire to punish; pardon; to overlook an offense; to cancel a debt." Thus, the goal of forgiveness is to let go of a hurt and move ahead with life. Visit a library and research books or magazine articles on forgiveness so that you understand the difference between healthy and unhealthy forgiveness. For example, Robert Enright, Ph.D., an education psychologist at the University of Wisconsin-Madison, stresses that true forgiveness is not:
Forgetting. If the hurt wounded you enough to require forgiveness, you may always have a memory of it.
Excusing or condoning. The wrong should not be denied, minimized, or justified.
Reconciling. You can forgive the offender and still choose not to reestablish the relationship.
Weakness. You do not become a doormat or oblivious to cruelty.

2. Spend a few minutes each day cleaning out your thinking. At a local florist shop I once watched the owner remove tiny bugs from a potted plant. Using a cotton swab he meticulously plucked off one small tenaciously clinging offender after another. Although that tedious process took him several hours of silent concentration and steady work, he was able to rid the plant of what would ultimately stunt its growth and ruin its loveliness. There is a lesson from that florist which applies to daily living. The only way to keep ourselves free from the infestation of troublesome thoughts is to spend a few minutes each day cleaning out our thinking.
Has someone hurt you by his or her comments? Were you publicly insulted by someone? Did a friend fail to come through for you? Pluck off each offending layer of thought and dispose of it just as the florist disposed of the tiny insects destroying his lovely plant. Doing so insures that a vague irritation does not transform itself into a deep resentment and an intense hatred.

3. Practice on small hurts. To become a generous forgiver of major pains, practice forgiveness on small hurts. Forgive immediately the small slights inflicted by strangers - a rude clerk, a driver who cut you off, a doctor who keeps you waiting and waiting, etc. Use those events as practice time to prepare you for the tougher task of forgiving major hurts.

4. Challenge the "shoulds" in your thinking. Forgiveness is much easier when you give up the irrational belief which fuels your frustration, anger, and hostility - the expectation that other people will always act in the way you want. Beware of the "shoulds" in your thinking and speaking:
He shouldn't have done this to me.
She shouldn't act that way.
My daughter should have known better.
My son should be more attentive to me.
I've worked hard and I should have been rewarded.
Whenever you find the word "should" in your mind and talk, challenge yourself. Tell yourself it is unrealistic to expect that people will always act decently and respectfully toward you. Remind yourself that everyone is fallible and capable of making a mistake.

5. Understand that resentment has a high price tag. "Holding a grudge takes mental, emotional, and physical energy. It makes you obsessive, angry, and depressed," observes Barry Lubetkin, a psychologist and director of the Institute for Behavior Therapy in New York City. "There's a strong connection between anger and a wide spectrum of health miseries - chronic stomach upset, heart problems, and skin conditions among them. Without question, the more anger we experience within, the more stress we're under," he adds. Whenever a hostile or hateful thought enters your mind, try to be fully aware of the harm that resentment can do to you, even making you ill. Let that knowledge further motivate you to forgive and let go.

6. Remember: Lack of forgiveness is giving others power over you. Withholding forgiveness and nursing resentment simply allow another person to have control over your well-being. It is always a mistake to let such negative emotions influence your living. Forgive, and you will be able to direct your life in positive thoughts and actions. An excellent example is that of educator Booker T. Washington (1856-1915). An emancipated slave who started out living in abject poverty, he had to work from the age of nine to help support his family. Instead of becoming bitter about the hardships he faced and viewing himself as a victim, Washington worked hard to improve his situation. He first became a janitor in a school to obtain his education. Then he went on to teach at Hampton Institute, one of the first African-American colleges in the U.S. Later he organized and became president of Tuskegee Institute in Alabama. "I shall allow no man to belittle my soul by making me hate him" was Washington's lifelong motto.

7. Recognize the ripple effect of harboring a grudge. When you can't forgive someone, there can be a ripple effect which negatively infects your family and friends. Writing to advice columnist "Dear Abby," a woman says: "I have something to say to the millions of families whose lives are affected by divorce. An unforgiving and bitter person who has not let go of animosities can poison an entire family and ruin the holidays for everyone. I know. I was that person." The writer, who signs herself as "Free in Vermont," explains she could not forgive her former husband and his new wife, and her children suffered her ensuing bitterness. "One day after a particularly harsh outburst, I understood the pained reaction on my children's faces. I prayed for the strength to change my ways so that I could stop hurting those I love most in the world." Although it was difficult for "Free in Vermont" to extend forgiveness, she did so and says:
"I have peace in my heart and my children are happy. They are free to enjoy both homes." Forgiveness is a priceless gift which you can give to yourself and your family.

8. Bury the grudge - literally. Write a letter to the person who hurt you but don't mail it. Express fully, clearly, honestly how you feel and why that person's act hurt you and made you angry. Conclude with the bold declaration that you have forgiven him or her. Then, bury the letter in a potted plant or somewhere in your yard. This is a powerful symbolic exercise which many people have found to be extremely therapeutic.

9. Try instant forgiveness. Lewis Smedes, a professor of ethics at Fuller Theological Seminary, Pasadena, California, and author of Forgive and Forget: Healing the Hurts We Don't Deserve, tells of his rage toward a police officer who brutalized his young son, John. The officer was a large 250-pound lawman who assaulted his 140-pound son and then charged him with resisting an officer. Although the charge was quickly dismissed, Smedes's rage and hostility were not so quickly appeased. Realizing that his intense feelings toward the police officer were creating a personal emotional crisis, Smedes knew he had to find a way of forgiving.
"I tried a technique that everything in my temperament resisted," he writes. "I thought about how a priest gives instant absolution to a penitent, right off the bat, in the confessional booth. And I decided to give this cop absolution. 'In the name of God I hereby forgive you-go in peace,' I said out loud, at least six times. It worked enough to get me going. I felt myself pried a couple of inches off my hate. And I was on my way."

10. Recall repeatedly this one vital fact: forgiveness is a gift you give yourself. A former inmate of a Nazi concentration camp was visiting a friend who shared the ordeal with him.
"Have you forgiven the Nazis?" he asked his friend.
"Yes."
"Well, I haven't. I'm still consumed with hatred for them," the other man declared.
"In that case," said his friend gently, "they still have you in prison."
That story points out this reality: ultimately, forgiveness is a gift you give yourself. Bitterness and anger imprison you emotionally. Forgiveness sets you free.

Long Distance Travel Takes a Toll

Traveling Out of Town

Traveling to Chicago to oversee my parents care monthly can be quite exhausting. Although the flight itself lasts only three hours, the journey entails much more than a direct flight. A discussion follows.

Time Investment.

Here is a typical trip:
---leave home at 8 a.m.
---catch a 10 a.m. flight
---connect two hours later in another city.
---arrive Chicago O'Hare Airport at 4 p.m.
---wait an hour for the shuttle
---take the 1-hour shuttle to Midway Airport
---rent a car and drive home, arriving at 6 p.m.

Total travel time ranges from 9 to 12 hours each way-depending upon whether or not I take a direct flight, and depending upon airport delays.

Financial Investment.

Here are typical travel costs:
---Round-trip airfare averages $250
---round-trip taxi rides to the Miami airport is $50
---round-trip shuttle service from O'Hare Airport to Midway Airport is $30 (I used to pay $80 round-trip to travel from O'Hare to the south side)
---$200 for a five day rental car @$29 a day plus all taxes and fees (extra with daily insurance)

Total cost ranges from $500-$700 for each trip

It is a tall order, physically, mentally, financially, and time wise to travel monthly to Chicago.

It is the right thing to do.

A Viewer Saw My Videos on You Tube!

A received two kind notes from a caregiver who viewed my videos on You Tube and found them helpful!

I am glad I helped someone know she is not alone and to take care of herself first.

Hearing Loss Can Be Helped

Hearing Loss Can Be Helped

Today, I took my Mom’s digital hearing aid to her audiologists for repair.

My Mom was the first customer of this thriving hearing care center back in the mid-90s.

I am always inspired by what I learn about the profound negative impact of hearing loss on the well being of the sufferer (and on their loved ones)

Research suggests that among the elderly, hearing loss is the third most serious health issue following arthritis and hypertension. Although hearing loss has major negative consequences that lead to extreme depression, social isolation, anger, damaged relationships, and feelings of defeat, it often goes untreated for far too long. Because of misinformation, social stigma, and fear of loss of independence, many seniors deny they suffer from hearing loss and compensate to give themselves the illusion that the problem does not exist.

To compound the problem, compensating for hearing loss can be frustrating and exhausting and it exacts pressure on loved ones who are expected to accommodate the unaided hearing loss. Surprisingly, only 20% of people (of all ages) with hearing loss find treatment through hearing aids.

I have found that acceptance of hearing loss is the first step toward improved communication, better quality of life, and enhanced well-being of loved ones.

Although Dad suffered gradual, noticeable hearing loss over the years, he denied he had a problem. As a result, he remained stubbornly oblivious to the impact his hearing loss had on others and vented his inner turmoil and frustration outwardly. Gradually, he has retreated to his bed where he shuts out all sound and light. I learned from him how difficult it is to live with someone who misses out on key communication yet refuses to seek help. Instead he blames others.

My Mom, on the other hand, accepted her hearing loss a decade ago. This enabled her to benefit from state of the art hearing aid technology and the help of trained audiologists who provide hearing screenings, earwax removal, free cleaning instrument adjustments, and instrument programming.

Mom has worn two in-the-canal devices for more than ten years.

So, how do you recognize hearing loss? Review this list from Avada™ Hearing Care Centers for key warning signs:

---People seem to mumble more frequently.
---You hear, but have trouble understanding the words.
---You often ask people to repeat what they have said.
---Telephone conversation is increasingly difficult.
---People say you play the television too loud.
---You cannot hear some common household sounds: a dripping faucet, the refrigerator, a ticking clock, or watch, the doorbell ringing.
---You have trouble understanding when your back is turned to the person speaking.
---You have been told that you speak too loudly.
---You experience ringing or noises in your ears.
---Conversations are difficult in large groups or a crowd.


If you suspect your loved one (or YOU) suffer from hearing loss, seek help from a skilled hearing practitioner immediately. The sooner you seek help, the sooner your quality of life will improve.

Personal Emergency Response System Installed!

With the help of the Chicago Department on Aging, my parents have an additional layer of protection, in case of an emergency. My Dad now wears a bracelet with a button that electronically connects him to an emergency monitoring/communication network.

Here are the steps the manual explains:

1. You press the help button on your bracelet or pendent.
2. The communicator (box) calls the response center.
3. The response center will answer the call. If they cannot clearly communicate with you, they will send help.
4. The response center will access the situation.
5. Lifeline™ will send help, if required. They will also contact your personal emergency contacts.

6. Lifeline™ will remain on the line with you until help arrives.
7. Once help is provided, they will contact “People to Notify.”

The national average monthly cost for this service is $35.

I am grateful we have this additional layer of protection.

How To Be An Effective Long Distance Caregiver

We will all face the day when we must assume the role of caregiver for our parents. Here are some steps you can take to manage the process effectively and to provide the best care for those who cared for you, even if circumstances require you to do it from a distance.

1) Plan In Advance. Do as much advance planning as possible while your parents are still physically and mentally capable of making decisions in their best interest. Start by scheduling a formal meeting with your parents and include your siblings. Take this time to discuss health care, legal matters, (including living will, powers of attorney, trusts, and wills), money matters, housing arrangements, and even funeral service arrangements. You may think this is insensitive and could produce awkward feelings. Do it anyway. You will be much more likely to make sound decisions if they are based upon discussions you have already had with your parents at a time when everyone was calm, and there was no sense of urgency. This advance planning can also help to reduce sibling conflict. Best of all, you will have a plan on how to implement your parents’ own wishes.

If they remain home consider: many of our parents lived the American dream by becoming homeowners and enjoyed buying maintaining and decorating their homes. Many of our parents also worked for the same employer their entire lives and earned both a pension and Social Security. It is possible to help them remain in their home for an extended period of time.

Conduct an assessment to ensure the home is senior friendly and safe and that activities of daily living (ADLs) are implemented. Consider some of the following duties:
--Safety--kitchen bathroom, remove throw rugs, security for home, emergency alert system
--Senior friendly--raised toilets, one-floor living, easy clothing, large button telephones and calculators,
--Meals--groceries, meal preparation, washing dishes
--Medication—reminders to take prescribed medication
--Doctor visits—identify friends, family members or community services that can provide these arrangements
--Driving—you may need to intervene with this major life activity and take away the car keys. Most will be in denial that their judgment is impaired and if they’re endangering their lives and the lives of others.
--Household repairers and maintenance—develop a system for identifying and hiring trusted maintenance professionals
--Plan for and address hearing loss the sooner, the better—get them tested and fitted with hearing aids. I have learned that hearing loss is a major cause of depression among seniors. My mom addressed her hearing loss more than 10 years ago and has worn two powerful hearing aids ever since. My dad, on the other hand, denied his hearing loss and has refused help. As a result, he is angry with those he cannot hear.

Get a check list of all the major elements and discuss with your family. In the meantime, if possible, get involved with the care of your grandparents. This will provide you with some first-hand experience with elder care.

2) Trust Your Intuition. Pray for guidance and listen to the answers. Once you acknowledge that you don't have all the answers and ask the universe for help, the solutions will appear. Learn to trust your intuition. Caring for older parents, for most of us, is unfamiliar territory. Sometimes, all of your life experiences and learning can appear to be irrelevant in matters concerning the care of older adults who have lost the ability to care for themselves. If you find yourself on an emotional roller coaster, always know that you are not alone. Just as your intuition has guided you in major life matters, it will serve you equally well when caring for your parents. Remember, keep an open mind.

3) For Big Decisions, Consult People in Your Network.—Family, Friends, Neighbors, Co-workers and Spiritual/Religious Friends. When looking to hire caregivers; select an assisted-living facility; identify nursing homes; or choose a hospice, consult people whom you already know or friends and friends of friends of your parents. Put the word out that you are seeking solutions and your network will supply you with options. Let word-of-mouth, not the local directory or search engine, serve as your best guide. Research all the options, weigh the pros and cons of each, interview several potential caregivers and institutions, and then trust your intuition.

4) Resist the Temptation to Micromanage Caregivers. Recruit qualified caregivers, check references, and train them well. Then, allow the professional caregivers to do the work they were trained to do. Trust them to do their job. The temptation to micromanage will be ever present. Do not let it interfere with the natural flow of things. It is helpful to provide caregivers with a written list of operating principles and household rules and guidelines. Discuss these openly with caregivers and post them near contact numbers, emergency info, and other information. Hire good people. And then turn it over. Remember, you are not present, engaged in their care on a day-to-day basis. Therefore, you must trust the professional caregivers.

5) Take Care of Yourself. Research indicates the caregivers are at increased risk for depression and illness.

As flight attendants give pre-flight safety instructions, they urge those traveling with children to attach their own oxygen masks first. Just as in care giving with children, you will be at your best as a caregiver if you are physically, mentally and emotionally fit. Here are some suggestions on how to care for yourself and avoid burnout: join a caregivers support group, involve other family members both immediate and extended members, take advantage of community services* designed for senior citizens, solicit help from your place of worship, use state funded respite services, hire professional help, use adult day care services, use the FMLA, and finally, know when to let go.


*including: meal delivery, transportation services, elder protection services, legal services, case management services, homemaker services, and adult day care services

I Had To Fire a Caregiver Today

Taking Mom for A Stroll

It was a beautiful spring day. With the help of caregivers, I was able to take Mom for a stroll.

See Video:

http://www.youtube.com/watch?v=R02cyEng86c

Lift Chairs are Helpful!

Does your aging loved one have limited mobility?
Do they suffer from arthritis or are they recovering from a fall?
Do they find it difficult to perform simple physical movements?

You may consider ordering a lift-chair.

After my Mom suffered a stroke and spent 30 days in skilled rehab, her physical therapist recommended a lift chair for the home.

I went online and explored the leading lift chair manufacturer products and here is what I found:

What is a lift chair?
A motorized chair for people with limited mobility. It helps you stand up and sit down. Some even help the user recline completely.

What models are available?
There are 2 major types of lift chairs. Both chair lift types will raise the user to a standing position.
1) A 2-position Lift Chair - A two position lift chair has a lift position and a slight recline position. As you recline in a two position lift chair your thighs and back stay at about a 90-degree angle. They do not recline fully for sleeping.
2) A 3-position Lift Chair - A three position lift chair reclines fully and allows the user to sleep comfortably. It gives you a wider variety of positions and allows the user to position their feet above the heart.

You order according to the height and weight of its user. My Mom’s chair is petite for people sized 54 or shorter.

There is also an assortment of colors and fabrics that complement the décor of your room.

What accessories/features are available?
Some lift chairs include optional features such as a massager and a heater. Detachable trays are available.

What are the Prices?
Prices range from $800-1500

Does Medicare Provide Reimbursement for Electric Lift Chairs?
Medicare stopped reimbursement for electric lift chairs in the early 90's and now will only reimburse for the chair's lift mechanism and motor. This will usually come out to be about $300.

See my demo video I shot in June 2007 of my Mom’s lift chair in our Chicago home:

http://www.youtube.com/watch?v=hZWwQHxCUTY

Angels from Vitas

I had the most productive and healing time during this trip to Chicago to spend time with my parents. I attribute this positive experience to several key factors. First of all, my attitude continues to improve about my parents, the five caregivers, my role, and just life in general. Also, I was given the best gift. ---WE were given the best gift. I paid attention to my higher power and contacted VITAS, the nation's largest provider of hospice service. We now have a large protective blanket surrounding us that will supplement the current system of caregiving. I was pleasantly surprised to know that both my mom and my dad qualify for hospice service. This means we will have an amplified level of support. Of note, my Mom was declared terminally ill several times in 2005.

VITAS will provide a team that includes a physician, a registered nurse, a certified nurse's aide, a home health aide, a social worker, a case manager, a volunteer, and an ordained minister. This team is assigned to the Scott family and will provide support every week.

So far, I have met five individuals from this wonderful company. They have all been extremely supportive and helpful and comfortable and passionate about their work. Everyone I've spoken to over the telephone from VITAS has also been extremely personable and helpful.

On Tuesday, May 29. I made that first phone call to VITAS. The next day, Wednesday, March 30, my parents’ doctor called to authorize hospice service and we were able to schedule an appointment to coincide with my visit in Chicago two days later. That Friday, June 1, I met my first VITAS representatives. Two beautiful ladies spent from noon until after 5 p.m. completing all of the activities required to admit both my mom and my dad into hospice service. I spent extensive time, providing them with my parents’ medical history, insurance information, and the latest info on my caregiving team. They spoke with their physician and my parents’ physician, and they ordered medication, equipment, and supplies for the Scott family. From now on, in case of any emergency, we will contact VITAS to advise us on next steps. I signed lots of documents and authorized them to bill Medicare on our behalf--for everything. All their services are covered by Medicare.

The following day, Saturday, a nurse came out to assess my mom. Also, hospital equipment was delivered that day.

That Saturday happened to be a really special day, because we took mom out for a stroll in her wheelchair. It was a beautiful sunny Saturday!

On Monday, Crystal Brown, our primary registered nurse, came to assess my dad and to meet with both my parents. I like her a lot and I was happy that they both responded well to her. She is really going to work out for us.

That same day, we received our first shipment of medications via FedEx from VITAS. I am so impressed by their speed and efficiency in offering their services.

The best part of our whole experience took place the morning that I left for Miami. We met Reverend Ed Stivers. First, he visited with me and I explained our family history and talked to him about my parent's physical and mental condition. Then, he met my parents. He spent quality time talking with them, while Charlotte served their breakfast in bed. My dad's eyes lit up when he saw another man walk into the room. (He is so deprived of male company). Dad was on his best behavior; he was so happy. He could even hear almost everything that Reverend Stivers said. My dad seemed so mentally healthy I almost did not recognize him! It just shows how helpful it is for him to have male companionship. (He can barely hear anything that I say to him)

We all held hands and lowered our heads while Reverend Stivers said a prayer. The energy was so positive! It was such a powerful and moving experience. He asked my parents what they wanted from God. My dad said he wanted to get better. My mom said she did not want anything. Reverend Stivers incorporated their wishes into his loving prayer. It was such a healing and moving experience. It was also transformative!

As I journeyed back to Miami that afternoon, I felt complete serenity-knowing that all would be okay.

Thank GOD: We have more Angels watching over us!

Serenity

As I was packing for this trip to Chicago, on travel day, I was feeling surprisingly calm---consumed by a sense of peace and resolve that I don’t even recognize. Somehow, I knew everything was going to workout as it should and that I need not feel anxious or filled with dread. As I locked my apartment to catch my flight, I felt serene.


I am feeling newly empowered I have no doubt it is driven by all the journaling, research, blogging, and writing I have been doing for a month and a half now on caregiving for my aging parents. I had also arranged to meet with representatives from Vitas, the nations largest hospice services supplier. Some how, I know it’s the right thing to do—to further ensure my family’s safety and protection. VITAS will provide a protective umbrella around our current caregiving system.

This trip, I will videotape lots of activities. I will give my camcorder another try…..

Radio Interview About Caregiving For Aging Parents

Hear me in a live interview discussing solo, long distance caregiving for my home-bound parents!


An old friend from the National Black MBA Association and the National Speakers Association, Carole Copeland Thomas, hosts a weekly radio show in Boston. She featured me as one of her entrepreneur guests on September 1, 2006.

There is a ten-minute segment on my business background, a 5-minute commercial break, and after the commercial break, I speak about long distance caregiving .

I didn’t think I had done well because I did not have questions in advance. I just listened to it and think I did OK!

Here it is: Be sure to click on the tool bar underneath the other guest. It’s the second button next to the volume/speaker icon.

http://web.mac.com/tellcarole/iWeb/Site/RadioShow/CE60E97F-2F38-475D-A12D-3D6298511BFE.html

Hospice-A Service, Not A Place!

I believe I just took a courageous first step toward reality and maturity

I think it resulted from having experienced a moment of clarity, today.

After months of hearing about hospice from my reading, research, conventions, spiritual friends, and hospice volunteers, I have moved forward in coming to terms with endings and with the fact that our family needs help dealing with all this emotionally. My dad is an angry wreck and I want to cry because of emotions I don't know how to handle.

On several occasions, in 2005, Dr. Thomas of the Little Company of Mary Hospital in Chicago informed me my Mom would not live long and needed hospice care. I summarily dismissed his comments, brought my mom home to be alongside her husband in her home, and proceeded to hire round-the-clock care to care for her in the convert of home. One of the nurses assigned to us after my mom's nursing home stay, completed a form and checked off the box indicating that my mom had less than six months to live.

There has been much evidence of an ending; I have ignored it.

As a result of my mom's being with her husband of 63 years, in her house she loves, well taken care of by round-the-clock caregivers, and receiving regular visitors from friends, she is doing okay. She has beaten all the odds.

When I attended my second caregiver conference last week, I learned a whole new definition of hospice. I always believed hospice was a place where terminally ill people go to die within days or weeks.

I learned that hospice is more than just a place. It is a service. A service that provides palliative care and help with bereavement.

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.

Gathering Information At the Fearless Caregiver Conference

I am feeling invigorated and empowered after attending the ninth annual Fearless Caregiver Conference, held yesterday in Ft Lauderdale. Two months ago I attended this conference when it was held in Miami.

At both conferences, I benefited significantly from the opportunity to learn from professionals in all aspects of elder care who presented products and services and shared their wisdom about caregiving. I was also able to connect with other caregivers who have dedicated a significant part of their lives toward caring for their aging loved ones. While I learned a lot, I realized how much I've already learned as a result of being a solo long-distance caregiver for more than two years now. During the question and answer sessions, I realized I could have contributed some wisdom to every single discussion.

Fearless caregiver conferences, hosted across the country, bring together caregivers and elder care experts, to share their knowledge and experience. These conferences, generally free to the public, are offered by several dozen sponsors and exhibitors who wish to provide information on the plethora of products and services available to assist caregivers in making the best decisions in giving the best care for their aging loved ones.

The format for these helpful conferences consist of an exhibit area, where more than 35 exhibitors provide caregiver information on some of the following: long-term care insurance, Alzheimer's disease, hearing a technology, personal emergency response systems (PERS) monitoring services, assisted living facilities, nursing home facilities, home health care services, reading and vision products, breast cancer research, hygiene products, blindness prevention, hospice services, geriatric care management services, transportation, helpful literature and many more. In addition, a panel of experts delivered presentations on specific areas of long-term caregiving and they shared their wisdom in a lively question and answer session designed to solicit rich discussion helpful to all attendees. The AARP even provided comprehensive training manuals for caregivers in both English and Spanish.

Gary Barg, a noted speaker, writer and publisher on caregiving issues created the Fearless Caregiver Conferences. He is an inspiration to me providing a forum where elder care experts and experienced caregivers can share their knowledge with others. He draws upon his experience as a caregiver since 1995.

I learned some key information during yesterday's event:

---I learned a whole new definition of hospice that dispels the commonly held myths and misconceptions. My impression was that hospice means sending your loved ones to an institution where they will die—sooner rather than later. When my Moms doctor advised me she was a candidate for hospice in February 2005, I unequivocally rejected the notion of separating her from her husband, friends, and unfamiliar surroundings. The new model of hospice entails caring for terminally ill loved ones wherever your loved one lives with a focus on care vs. cure. Hospice professionals will provide services in their home. The reality is that most people prefer to remain in their home, rather than moving to an impersonal institution staffed with strangers.

Since my Mom has been diagnosed as hospice ready, there are a plethora of resources available to our family free of charge. I spoke with a representative from VITAS, the country's largest provider of end-of-life care, who informed me that daytime respite care, prescription medications, and even equipment we are paying for are available to us at no cost. I will certainly explore.

---I also found out there is caregiver assistance program (CAP) training at North Broward held on a regular basis. Because this training, scheduled for four consecutive days, is funded by a federal grant, it is provided free of charge, and even includes meals. I will investigate the training schedule and register for the sessions.

---In most cases, if your loved one has reached a certain level of incurability, it is best to avoid hospitals altogether. Even in some emergency situations, it is best to find solutions at home. It was acknowledged that often, older patients receive minimal attention in emergency rooms and often hospital patients fall victim to other diseases during their stay.

---I learned that there are no conclusive tests to diagnose Alzheimer's disease. Based upon clinical results and patient history information, physicians simply draw conclusions. Although there is also no definitive understanding of the cause of Alzheimer's, genetic links have been established.

---Depression plays a major role in Alzheimer's disease-- primarily because of grieving losses-- loss of self, loss of independence, and loss of hope for a bright future. It is perfectly normal for someone with Alzheimer's disease to suffer from depression, and there are many helpful antidepressants prescribed to treat this heavy condition.

---Reverse mortgages can serve as a helpful solution for some clients.

---In dealing with Alzheimer's patients, the best medicines are empathy and unconditional love.

---Caregivers provide billions of dollars (est. $250 billion) of uncompensated eldercare.

I highly recommend that you consider attending one of these helpful conferences. Attending such an empowering conference will allow you to gather a bundle of information, all under one roof, and all you have to invest is three to four hours of your time. They even include breakfast, a nice lunch, and a dessert break—all for free or a nominal entry fee.

I will likely attend the next Fearless Caregiver Conference that will be held in Palm Beach County on June 28, 2007.

Keep your eyes and ears open for caregiver conferences. Consult your local alliance for aging agency via The National Association of Area Agencies on Aging (n4A.org) or Fearless Caregiver Conference at caregiver.com for details.

PS Mom turned 92 today!

We Finally Ordered a Hospital Bed

Monday, May 14 through Sunday, May 20, 2007

After having been awakened bright and early two mornings in a row with alarming phone calls from my parents’ home caregivers, I spent another week of identifying and implementing solutions in the best interest of my parents.

Devoting myself to being a long-distance caregiver comes with a price. My stressful reaction to some of the events led me to experience sharp back pain and sharp abdominal pain. I even felt compelled to review my medical insurance coverage-- just in case I may need treatment. My body is signaling that I must find coping mechanisms for all this stress. For the first time in two years, I decided to work out in the gym in my building. Exercise has been long overdue for me. Journalling, such as this, also proves therapeutic for me.

After gaining a broader picture of my Mom's deteriorating condition, I realized I had to take additional steps to protect her emotional and physical well-being.

On Sunday, she was so disoriented, that it alarmed my Dad to the point where he called one of the caregivers at home. When I spoke to my Mom, I realized the extent to which she has begun to deteriorate mentally within just the past week. She rambled on about her dog (the dog died 20 years ago), and she insisted she was in the home of an old friend of hers (who moved to LA 30 years ago). She marveled at how her friend’s furnishings and decorations were identical to those in her own home.

The following morning, I was awakened by one of the nighttime caregivers who had been called over at midnight to assist the other nighttime caregiver because my Mom had fallen and she could not get her up without help.

Apparently, my Mom insisted she had to let the dog out and attempted to climb out of bed on her own. That evening, she attempted to walk on her own several other times.

She also talked incessantly, nonsensically until 4 a.m.

Both nighttime caregivers stayed overnight.

I knew it was time to take action to further protect my Mom , who has apparently moved to the next stage in her illness. She has begun to wander.

My first step was to make arrangements to have a hospital bed with safety side bars ordered and delivered and installed. By the end of the week, my doctor had made the call and delivery men had replaced Mom’s twin bed with a hospital bed. This protective bed, with safety side bars, will prevent her from leaving her bed.

I was surprised to hear that during removal of the old bed, and installation of the new bed, my Dad slept through the entire process. He even snored. Naturally, my Mom resisted the notion of having a hospital bed. I assured her it is for her own protection. She fell while attempting to leave her bed, just a few days earlier.

I also made arrangements to extend the work hours of the home caregivers that work for a health care agency. I contacted the geriatric case manager from the state of Illinois Department of aging center. They sent out the case manager, and I spent several hours helping her update our file and answering questions about my Mom's deteriorating condition.

She approved an increase from 43 hours a week to 55 hours a week. I am thrilled!

The case manager also ordered a personal emergency response system (PERS) that will alert the authorities in case of emergency. My Dad will wear this device in the form of either a bracelet or a round-the-neck pendent. A push of the button will alert emergency medical services through the phone system. The first step is that a representative will call my Dad to engage in a conversation and to assess the situation. I must also give them two other local emergency contact numbers. I'm conflicted over which contact numbers to give since my Mom's closest friends are in their 90s. Perhaps I will ask two of my friends who live nearby. I must admit that I am concerned that my Dad may get “trigger-happy” with the PERS button. He has a tendency to overreact and to cause concern when it is unwarranted. I am not sure he can discern crises from non-crises.

The primary nighttime caregiver is convinced the antidepressant that I authorize last week had caused my Moms severe disorientation. She experimented with not giving her the antidepressant one night, and noticed a marked difference in Mom's state. She says she had returned to her old self, without the antidepressant. I authorized her to stop giving Mom the antidepressant. I also explained to her how sensitive are family is around depression. Just last week, my Mom was expressing suicidal thoughts. That was why I called the doctor and asked him to prescribe an antidepressant. I had never imagined the antidepressant would make her delusional and disoriented.

I am glad to know my Mom is not disoriented; that her recent condition may have been directly linked to a change in medication. Yet, I am also glad that it prompted me to take steps to provide additional safety by ordering the hospital bed and the extra hours of caregiver help, anyway.

I must also deal with next steps from my Mom’s failed root canal treatments. She is taking antibiotics to reduce the swelling from previous treatments (she had also had a severe allergic reaction to the painkillers from dental work) Her endodentist says she now needs oral surgery because they are unable to perform a root canal. I don't understand. So far, we have spent almost $600, and she still needs more work in the form of oral surgery. I must call the dentist next Tuesday to discuss next step options. (I am always skeptical about dentist recommendations). Surprisingly, this week, I also had a failed root canal. My dentist had to remove my bridge and I'm in a wait-and-see mode now.

It is all very complicated to manage medical, dental, and medication treatments.

I fielded many phone calls throughout the week from all five caregivers, Mom's doctor, Mom's dentist, Mom's endodentist, the homemaker agency, the elder care agency, the geriatric case manager, repair guys, Mom's friends, and pharmacists. I also paid bills online and sent my Dad a book of blank checks.

For a change, my Mom is not complaining about tooth pain, and she is not scratching until she bleeds.

Another week in the life of a long-distance caregiver! I am grateful I have identified solutions.

Now I am off to Charlotte, North Carolina to work with a team for the weekend. On Sunday, we will meet at 6 a.m. and I will return home at midnight.