Stocks or Home Equity? - What’s The Best Retirement Investment

Hello Everyone and Happy Grandparents' Day to my friends in the US and Happy National Dementia Carers' Day to my friends in the UK. 

This week's Family Caregiver Question Of The Day involves planning for retirement.  In today's economy is it better to build equity in your home or build your stock portfolio. 

Before you answer the question here's a quick look back at Catherine Rampell's February 2013 article  "In Hard Economy for All Ages,  Older Isn't Better … It's Brutal".  She wrote:

"Young graduates are in debt, out of work and on their parents’ couches. People in their 30s and 40s can’t afford to buy homes or have children. Retirees are earning near-zero interest on their savings.

In the current listless economy, every generation has a claim to having been most injured. But the Labor Department’s latest jobs snapshot and other recent data reports present a strong case for crowning baby boomers as the greatest victims of the recession and its grim aftermath.

These Americans in their 50s and early 60s — those near retirement age who do not yet have access to Medicare and Social Security — have lost the most earnings power of any age group, with their household incomes 10 percent below what they made when the recovery began three years ago, according to Sentier Research, a data analysis company.


Their retirement savings and home values fell sharply at the worst possible time: just before they needed to cash out. They are supporting both aged parents and unemployed young-adult children, earning them the inauspicious nickname 'Generation Squeeze.'"

Thankfully the economy has bounced back since the recession and housing market slump of 2007-2008.  However the savings, pensions and home equity lost by millions during that time period will never be recovered unless they invest rapid growth but risky stocks or take on the housing market.   So what would you do?

As Diana Olick reported for CNBC in December 2014,

"Even as the stock market soars to record highs, federal regulators are announcing new, cheaper ways for cash-strapped borrowers to buy a home. With the catastrophic housing crash of the last decade still glaring through the rear view mirror, the government is again pushing home ownership as the best way to build wealth, but is it?"

'It would perhaps be smarter, if wealth accumulation is your goal, to rent and put money in the stock market, which has historically shown much higher returns than the housing market,'  said Nobel Prize-winning economist Robert Shiller at a Standard and Poor's conference last week."  -- "Where to put your cash? A house or a stock" by Diana Olick  

This is just one of the many decisions facing family caregivers who are often planning for their own retirement while trying to manage the legal and financial affairs of their parents.  This is our Through The Maze Question of the Week.

In addition to your feedback,  I will be inviting financial and legal experts to share their thoughts and recommendations and, as always, I will be sharing posts from respected caregiver advocates and organizations.   I hope that you will find these posts helpful and will share them with other caregivers.  

And Thank You for supporting this page."

You Could Fill One of America's Largest Cities With A Disease Many People Don't Know About

Did you know that one million Americans are living with a condition known as hydrocephalus? 

That's more people that the total population of cities like: Boston, MA; Pittsburgh, PA; San Francisco, CA; Seattle, WA; Denver, CO; Washington, DC; or Indianapolis, IN.

In fact, the odds are that you probably know someone with this condition and don't even know it and sadly they may not know it either.

When my mother was diagnosed with Normal Pressure Hydrocephalus no one in my circle of friends, family or colleagues had ever heard of the disease.  In fact as late as 2011 I was still encountering health professionals who had never heard of Normal Pressure Hydrocephalus or who were under the impression that only babies had hydrocephalus.  Some even thought that you could recognize a person with hydrocephalus by their appearance. 

While more is being done to raise awareness about this condition, it is still not widely known, especially in the African-American and Hispanic communities.   So in spite of my dread of being in front of the camera I posted this video on Youtube to remind people that September is Hydrocephalus Awareness Month and that hydrocephalus can affect anyone.  

In the following video Dr. Adam Mednick appears on The Dr. Steve Show with his patient to discuss Normal Pressure Hydrocephalus (NPH) which is a brain disorder caused by the buildup of too much cerebrospinal fluid in the brain. "Many health care professionals are unaware of NPH," says Dr. Mednick, a neurologist and author of the book "NPH - From Diagnosis To Treatment".

"NPH can be difficult to diagnose, and it is commonly misdiagnosed as Parkinson's disease or Alzheimer's. It's important to be aware of the symptoms and get the right diagnosis because unlike these diseases, NPH can be reversed," says Dr. Mednick. For more information on NPH visit Dr. Mednick's website: http://www.ctcompneuro.com

"Additional information:

NPH is called "normal" because the condition develops very slowly, and initial tests often show that patients have normal brain pressure, when they actually do not.

It is estimated that 375,000 Americans have NPH, but unfortunately, only about 11,000 have been treated. Those who go un-diagnosed live the balance of their lives in wheelchairs and adult diapers.

Unlike Alzheimer's and Parkinson's disease, many NPH patients can have their symptoms reversed by having a neurosurgeon insert a shunt in the brain to drain away excess fluid. In most cases, these people can return to their normal lives.

Adam S. Mednick, M.D., Ph.D. is a neurologist in private practice in North Haven, CT. He is board-certified by the American Academy of Psychiatry and Neurology."

Calling Family Caregivers: Guest Bloggers Wanted on Through The Maze

There is a saying that doctors make the worse patients.  Well something very similar can be said about parents when they find themselves in a position of needing to be cared for by their adult children.  They can be the worst.

No matter how we love our parents and they love us, there are moments when our elderly parents seem determined to pay us back for our teenage rebellion and every childhood tantrum . 

If you are, or were, a family caregiver who provides, or provided, more than 20 hours a week of in-home care for an elderly parent living either in your home or their's and would like to share your stories, poetry, photography, humor or suggestions,  I invite you to guest blog on Through The Maze. 

Sharing our stories can help future family caregivers prepare for the day when  they find themselves in the position of feeding, bathing and changing the diaper of the person who once did all those things for them. Life gets truly interesting when the parent-child relationship is suddenly reversed.  It's a dramatically different experience than caring for a child, spouse or other  relative.  No matter how you try to guard against it, there is no one else in the world who can bring out your "inner child" like your parents   After all, they had your entire lifetime to practice.  And no experience will evoke your childhood memories and emotions in quite the same way.  One moment your parent has fallen and you are helping them up and the next moment you're remembering a time that you fell and your parent picked you up.  Or one moment you're reading the newspaper or a book to your parent and suddenly your mind travels back to the many times your parent read to you.

By sharing our stories of the day-to-day, sometimes year-to-year,  care of a parent, we can help others know that they are not alone in their experience.  It is emotionally difficult to watch a parent struggle with the effects of aging or battle arthritis, cancer, Alzheimer's, Parkinson's  or any other form of life stealing disease.  And as beautiful as the moment can be, no child of any age is truly prepared to be present to hold the hand and say goodbye to someone who has been a part of their life since they breathed their first breath. 

And if you're a sandwich generation caregiver, sharing your story might help your teenager understand why your parent just got away with telling you to "shut up" but they can't.  :-) 

If you're interested in guest blogging here on Through The Maze email me at plkemp@pamelakempllc.com.  

Or if you're already blogging on this topic, posting on another blog, or host your own blog,  feel free to share a link to your posts or blog in the comments section.  This isn't a competition, it's a community of family caregivers who know what it is to walk a mile in each other's shoes.  Or as I like to say, journey through the maze of life.

Behind The Veil: The Ugly Truth of Loving Too Much

This is not a story about a romance gone wrong.  I wish it was. That would be a much easier story to write and probably far more entertaining.    Instead this is the first in a series of posts in which I will discuss the things I regret most as a former family caregiver and what can go wrong when you allow your emotions to overrule your business sense when making decisions about caring for a family member

In this series I will share details of my caregiving experience which I have never before shared publicly and are only known by my closest friends.  I will also share advice from experts which I hope will help future and current family caregivers avoid making serious financial and legal mistakes.

Earlier this year PBS aired a documentary called "Caring for Mom & Dad"
which examine the costs of family caregiving.  If you missed it, here's the trailer for that broadcast.  I hope that you will visit their website, read the caregiver profiles, and review and share the caregiver resources.

Watching that documentary brought me to tears because I could empathize with so many of the caregiver's stories.  They were strikingly similar to my own. 
However, even after that documentary aired I was still too embarrassed to tell my own story here on my blog.    Yes, I have shared bits and pieces of my caregiving journey with you, my blog visitors as well as with my close social media friends, but I have always been cognizant of the fact that candor and transparency can exact a high price.  For bloggers and all writers, the cost of  publicly sharing your thoughts is often paid in ridicule as well as the loss of privacy, job opportunities and even relationships.  However, even with the knowledge that what I am about to write may be taken out of context, misinterpreted or, as they say in the legal system, "used against me",  I am going to bring you up to date on my caregiving journey and share the good, the bad and the ugly of what has brought me to this point.

September 30, 2015 will mark the nine year anniversary of my leaving a job,  which in spite of all of its challenges and frustrations I truly enjoyed, to become my mother's full-time family caregiver.  It was a job at which I had: worked for nearly eight years, accrued four weeks paid vacation, excellent benefits; a salary that was above the market average for the position; and earned the respect and friendship of my colleagues.  I had also tucked away the beginnings of a nice little retirement nest egg.  All in all, life wasn't bad, in fact from the perspective of an outsider looking in, my life probably looked pretty good. 

But here's what onlookers didn't see.  Beginning in 2002-03, I noticed that my mother was having problems with bladder control and was becoming mildly forgetful and repeating herself. Her primary care physician prescribed Detrol for the bladder control issue and a low dose of Aricept for the memory issues.  For awhile it seemed that Mom's health issues were under control but then she began having problems with her balance. It wasn't until the summer of 2004 that she was finally diagnosed with Normal Pressure Hydrocephalus. 
As the symptoms of my mother's NPH began to worsen I was finding it increasingly difficult to juggle her care needs, the maintenance of the house, and the demands of my career.  In attempting to do so, my own health was suffering to the extent that in 2003 I was briefly treated for clinical depression. And in November of 2003 my primary care physician had me undergo cardiac stress testing, a sleep apnea test and a cardiac catheterization to determine why my heart was beating so erratically. Fortunately,  it turned out that what was officially diagnosed as pulmonary hypertension was a minor heart arrhythmia, a condition which had been diagnosed during a routine physical during my time as student at Emerson College, having been exacerbated by the rapid and dramatic weight increase brought on by the depression medication.  It was a health scare that reminded me of my mortality and gave me cause for reflect on what I truly wanted for the second half of my life.

The solution to my health scare: restructure my life to better manage the stress. 
In the summer of 2004 Mom's primary care physician referred her to a neurologist who after a series of MRIs determined that my mother had fluid on the brain, a condition known as Normal Pressure Hydrocephalus.  On the one hand, I was encouraged to learn that Mom did not have Alzheimer's and there was a possibility of treating her condition with shunt surgery.  On the other hand, her prognosis without the intervention of shunt surgery was no different than Alzheimer's Disease.  The news could not have come at a worse time for either of us.  Before Mom's diagnosis, I had been in the process of repairing my credit and taking the steps towards buying a house and planning for my own retirement.  After her diagnosis, I was faced with suddenly having to make financial, legal and healthcare decisions for an adult who had always managed all of those things herself. 

After approximately a year and a half of weekly sessions with a wonderful psychologist I was able to discontinue the use of the depression medications.  I would continue counseling through 2004, a year in which I filed for personal bankruptcy and began developing a plan to live on a strict budget, build my 401K savings, a move forward with building the life of my dreams.  But that never happened. In early September of 2006 I would make the decision to resign my position,  place my career on hold, and become my mother's full-time caregiver.  The plan was: to spend quality time with my mom while she was still physically mobile and mentally aware; to significantly downsize our home; to relocate with my mother to a residence with lower maintenance in a more affordable community; to place the proceeds from the sale of the house in an account for my mother's long-term care; and to have all of this in place so when the day came when my mother passed away, I would have time to grieve and then move forward with my life.  Even today, as I read this, it seems like a good plan.  However, the plan failed not because it wasn't a good idea but because at during points along the way I allowed emotion to overrule my better judgment. In short, I made decisions that I would have never made it they hadn't involved my mother. 

I will continue with more in this series later this week.  In the meanwhile please watch this video: "The Toll That Caregiving Can Take". 

It's A "Dog Eat Dog World" Even in Small Business

Thinking about becoming an entrepreneur, writer or work in other areas involving the arts?  Be prepared, it is truly a "dog eat dog" world and whatever your field of endeavor you will face competition, setbacks and need to handle controversies.

Several years ago, I tried launching a home based business in order to have income while being my mother's full-time caregiver.  I researched the natural food and nutritional supplements industry and decided that I believed in the products offered by Miessence, Nature's Sunshine and J.R. Watkins enough to not only use this but sell them to others.  

I  developed my network on LinkedIn and Facebook of family, friends, professional contacts and potential customers and began sharing information on the products as well as personal photos of my own recipes.   I even took out Facebook ads to promote my business to a wider audience. I had high hopes.  However like the vast majority of home-based and poorly funded startups I failed miserably.

Why?

It certainly wasn't for a lack of effort or time invested.  The primary reasons that I failed were:

1.  the network that I formed had little to no interest in the products I was selling;
2. my products were in direct competition with more widely advertised products
3. An anti-nutritional supplements and herbal remedies campaign was running concurrent to my efforts to sell products.
4.  I did not present a strong enough argument to convince my network to support my business.
5.  members of my network were also my friendly competitors.

Was I hurt when I couldn't even convince friends and family who knew my financial struggles to support my business?  Sure, but not as much as I was disappointed in myself.  After all, I had once worked in public relations and now I couldn't even convince people to buy salt, pepper and cinnamon, products which almost everyone uses. I truly believed that trying to launch a home-based business was a far better solution to my financial problems them starting a charitable campaign like GofundMe.  For quite some time, I allowed the scope of that setback to completely erode my self esteem.  Feeling like a failure was devastating but as time moved on the experience proved to be an excellent teacher.

Fast forward the clock four years.  I am no longer trying to sell any of the aforementioned products,  or start an eBay store.  Now I have relaunched my blog which runs affiliate ads from Amazon.com.  So, what did I face this weekend but a New York Times article titled "Inside Amazon"  which did not paint that company in the most positive light. 

It light of that article the thought might naturally occur to remove the Amazon ads from my blog , but that isn't going to happen.

Like I said,  I'm older, a little wiser and definitely see the world through far less naive eyes.

It's all just business.

In the meanwhile, you can help support my writing as well contribute to the purchase of a new computer and other home office equipment for my online tutoring business by purchasing products via this website.  Click on the photo below to visit the Lee Store on Amazon.com.  Also mark your calendar's for October 2nd and join Lee Jeans and the American Cancer Society in National Denim Day. 

QOTD: Would You Stay Behind During A Natural Disaster?

Most of us will never experience a disaster like the one's in the preceding video.  However every year millions of people experience the devastating impact of hurricanes, tornadoes, snowstorms, floods and fires.  Few are prepared. 

Today's "Question of the Day" is primarily directed towards paid as well as unpaid caregivers, however anyone is welcome to share their response.  The question is, "Would you stay behind in a natural disaster and risk your own safety if you were unable to move a patient or loved one?" 

During my six years as a full-time family caregiver (Oct. 2006 - Dec. 2012)  for a person I considered this question many times.  Fortunately for me I had four years to prepare a disaster emergency plan before my my mother became bedridden.  Today I look back on three weather events that directly impacted my life.  I will also share tips on why every family caregiver should have a disaster emergency plan and how you should go about preparing one. 


A Look Back At Snowmageddon

My front yard with 3 ft + of snow

My backyard with snow drifts of up to 5'

 






 To view more of my Snowmageddon memories  click here. 










Here's the "Blow by Blow" courtesy of LiveScience.com:

"Dec. 26-27, 2010
The term 'snowmageddon' and 'snowpocalypse' originated with the first February blizzard of 2010, and stuck when President Obama used them. However, another severe snowstorm hit soon after on Feb. 9 and 10, and another struck later in the month. The nicknames are often used loosely to describe the winter weather for the month of February 2010.

Highest Snowfall:
February: 38.3 inches (97 centimeters) at Elkridge, Md.
December: 32 inches (81 cm) at Rahway, N.J.
The February blizzard also dumped a record-breaking 32.4 inches (82.3 cm) of snow at Washington's Dulles International Airport. However, that storm largely spared New York City. The Christmas Blizzard, however, brought 20 inches (50.8 cm) of snow to Central Park, while Washington was spared. New York City's record of 26.9 inches (68.3 cm) of snow, set in February 2006, still stands.

Number of States that Declared a State of Emergency:

February: 6
December: 6
A state of emergency in Philadelphia forced the cancellation of an NFL Sunday night football game during the December storm. The postponement prompted Pennsylvania Gov. Ed Rendell to declare that delaying the game was further evidence of the 'wussification of America.'
The game was later played on a Tuesday night for the first time since 1946. The Minnesota Vikings upset the Philadelphia Eagles, 24-14."


http://www.livescience.com/29943-2010-christmas-blizzard-101228.html

Oh I remember it well.  At this point in her illness my mother was still somewhat mobile but only with the use of a walker.  She would need to be admitted to the hospital that February for a hernia and what her visiting nurse I am believed was a shoulder injury that resulted from being lifted by her arms after she had fallen.  Mom was clinically obese after years of taking prednisone for her respiratory condition it was never easy getting her back on her feet after a fall. 

Note to caregivers:  Lifting larger people, especially those who are considered obese, or people who are extremely frail by the arms can damage the shoulder joints.

My mother would need to be hospitalized again in January of 2012 and wouldn't you know it, 3' of snow again. 


A Look Back at Hurricane Irene

August 28, 2011, Irene hits Philadelphia

"At about 8 a.m. Sunday, meteorologist Bill Henley said that the worst of the storm has passed the South Jersey, Delaware and Philadelphia area. The hurricane was downgraded to a tropical storm as it reached Coney Island in New York about 9:15 a.m. But local flooding continues are water levels rise.


Mayor Nutter said Philly's been doing a great job so far staying safe during Irene.


'Keep doing what you've been doing,' Nutter said. 'Look out for each other, be safe, be calm. Don't make judgments that'll cause you to be in unnecessary harm.'


And perhaps, most importantly, he warned: 'If you don't have to be outside right now, stay inside.'


With severe flooding threatening much of the region and Hurricane Irene killing at least 10 people in four states as it moved up the Eastern Seaboard, Philadelphia Mayor Michael Nutter declared a state of emergency for the first time since 1986.'This could be the worst storm event to hit the Philadelphia area in 50 years,' Nutter warned.


About 139,000 area residents lost power as Hurricane Irene brought lashing rain and wind gusts of up to 54 mph at the Philadelphia International Airport. Tornado warnings were issued in southeastern Pennsylvania.

During a Saturday night emergency briefing the mayor said he expects the Schuylkill to crest at 15 feet and other creeks, rivers and streams to flood -- threatening nearby streets.


"That is historically significant," Nutter said of the Schuylkill. 'We have not seen that level of cresting since 1869.'
"

http://www.nbcphiladelphia.com/news/local/Hurricane-Irene-Barrels-Toward-Philly-Jersey-Delaware-128468208.html


I remember this well too.  By this time Mom was bedridden and confined to her bedroom on the second floor of our home.  She hadn't been downstairs or outside of her home since returning from the hospital in 2010.  When The Weather Channel began predicting Hurricane Irene my biggest concern was the potential of a power outage.  A power outage would mean that we would not be able to use Mom's nebulizer to administer her respiratory medicine and I would need to adjust her hospital bed manually.  Thankfully our electricity stayed on.  Many of my neighbors were not as fortunate.



The Earthquake That Cracked The Washington Monument



Ok, an earthquake isn't actually a weather event unless it causes a tsunami, but it definitely should be considered in your disaster preparedness plan.  On August 23, 2012, an earthquake cracked the Washington monument and actually did damage to homes as far away as Philadelphia.  Mom and I were lucky, it only moved our refrigerator about a foot across our kitchen floor.

"The earthquake that hit the Washington region last year was probably a tremor that occurs about once every 2,000 years, a new seismic study of damage to the Washington Monument suggests.


And the overall impact of the quake, emanating from a previously unknown fault three miles beneath Louisa County, Va., was the biggest ever east of the Rocky Mountains, the U.S. Geological Survey said.


The assessments came as the Washington area marked the one-year anniversary of the 5.8-magnitude quake that terrified residents last Aug. 23."

    http://www.washingtonpost.com/local/earthquake-damage-to-washington-monument-was-a-very-rare-occurrence/2012/08/23/cdc6d708-ed29-11e1-b09d-07d971dee30a_story.html

Luckily, Mom and I weathered all of these events fairly well.  However, what would you do in these situations if you were caring for a person with cognitive or physical challenges and the worst possible scenario occurred?

Earthquakes,  snowstorms and hurricanes are just three of the types of natural disasters for which we all need to have a plan to weather. This is especially true for family caregivers, paid caregivers and the elderly.  


So now we return to today's question of the day for paid or unpaid caregivers: Would you stay with a patient/loved one in the event of a natural disaster? 






There's a scene in the film "The Day After Tomorrow" in the the character portrayed by actress Sela Ward faces just such a dilemma, a decision the every  nurse, school teacher and caregiver must be ready to make when a natural disaster occurs and you are responsible for the safety of another life as well as your own.  Are you psychologically prepared?

The following is information from the Australian Psychological Society on the importance of being psychologically prepared

What does being psychologically prepared involve?
Step 1: Anticipating the psychological reactions leading up to a disaster
Step 2: Identifying the specific feelings and thoughts
Step 3: Managing responses to the stress

The importance of being psychologically prepared

Being directly involved in any potentially life-threatening emergency situation can be genuinely terrifying. People often don't have prior experience of being in natural disasters or knowledge of just how stressful this can be. When people are under severe stress they are usually not able to think as clearly as usual and this can affect decisions and reactions. These are normal, although not always helpful, responses to a possibly life-threatening situation.

When people have a better understanding of their own likely psychological responses in natural disaster warning situations this can help them to feel more in control and better able to cope. Being psychologically prepared can assist people to think more clearly and reduce the risk of serious injury and loss of life or property. Being cooler, calmer and more collected can also be very helpful to family members and others who may not be as well prepared psychologically for what is happening.

Of course, it is unrealistic to think that people can be fully emotionally prepared for such stressful and confronting situations as severe natural disasters. However, being psychologically prepared can help in coping with the stress of the unfolding situation and can help to reduce the distress after the disaster has passed. This does not mean that people can be fully prepared for anything that may happen or that being psychologically prepared means being emotionally ‘bullet-proof'.

Being psychologically prepared also includes having realistic expectations that an emergency situation such as a bushfire or cyclone event can very quickly become unmanageable, unpredictable and life threatening. Being able to anticipate that such a situation could occur can help people to ‘let go' when necessary and leave the situation to the expertise of emergency services.

What does being psychologically prepared involve?

Once the household emergency plan has been set and practised and the necessary physical preparations have been made, we can turn our attention to psychological strategies for managing the stress of a threatening natural disaster.

Psychologists use a term called ‘stress inoculation' to assist people to prepare themselves psychologically for emergencies, which in other words means planning to be better protected from stress by working through the likely psychological reactions beforehand and learning strategies to cope. These strategies ‘inoculate' people against being overly anxious or overwhelmed by their emotional responses, and will help prevent being caught up in unhelpful thinking in an emergency situation. Obviously this approach will work better with some disaster events that may be more frequent and to some extent more predictable, but the psychological principles can be applied for any emergency.

The way people feel in highly stressful situations is strongly affected by the way they cope with the signs of physical arousal (e.g., racing heart beat, shortness of breath) and the thoughts that they are having (e.g., ‘I can't cope'; ‘We're going to get badly hurt'). These reactions and thoughts can make people feel anxious, hopeless or even angry, and while these feelings are understandable, they are not very helpful in an emergency situation. Being psychologically prepared means that these natural reactions to stress can be anticipated and managed to help people feel more in control and confident.

There are three main steps to being psychologically prepared for a threatening natural disaster:

Anticipate the anxiety and concerns that will arise.
Identify uncomfortable or distressing thoughts and feelings that may cause further anxiety.
Manage the responses so that the ability to cope remains as effective as possible.
An easy way to remember the skills involved in being psychologically prepared is to focus on AIMing for psychological as well as emergency household preparedness.

Read the rest of this article at: 

    https://www.psychology.org.au/publications/tip_sheets/disasters/

A large part of being psychologically prepared to handle a natural disaster is having a plan.  The following information is courtesy of DisasterCenter.com.  If you are a caregiver I urge you to bookmark their website. 

 " Find out what could happen to you. By learning what disasters could occur in your community and what your risks may be (for example, living in a floodplain), you can prepare for the disasters most likely to occur in your area. Learn more by contacting your local emergency management office or American Red Cross chapter. Be prepared to take notes.

Ask the following:


• What types of natural disasters are most likely to happen in your community?
• What types of human-caused or technological disasters could affect your region?
• Ask about chemical emergencies, which can occur anywhere chemical substances are stored, manufactured, or transported.
• Find out if your home is in a floodplain. Check with your local emergency management agency.
• How should you prepare for natural and human-caused disasters?
• What can you do to protect your home and avoid or reduce the impact of the disasters that could occur where you live?
• Does your community have a public warning system?
• How will your local radio and television stations alert the community if there is an emergency?
• What do your community's warning signals sound like and what should you do when you are notified?
• If you care for young or elderly people or people with disabilities, how can you help them in a disaster situation?
• What might be some special needs to consider?
• What about animal care after a disaster? Pets (other than service animals) usually are not permitted in public shelters or other places where food is served.
• Where could you take your pets if you had to go to a public shelter?
Contact your local emergency management agency to find out about emergency animal shelters in your community, in the event that you have nowhere else to go and need to go to public shelter with your animals.  Then, find out about the disaster plans at your workplace, your children's school or day care center, and other places where members of your family spend time. You should be prepared wherever you may be in case disaster strikes and learn steps you can take to prevent or avoid disasters.


 For People With Disabilities

• If you or anyone in your household has a disability or a mobility problem, make special plans.

Note: If a member of your household has a disability or a mobility problem, such as some elderly persons do, or if you are planning to assist someone else who does, you should review the following steps.
If you have a disability or a mobility problem, you should consider adding the following steps to the usual preparations:

• Create a network of relatives, friends, or co-workers to assist in an emergency. If you think you may need assistance in a disaster, discuss your disability with relatives, friends, or co-workers and ask for their help. For example, if you need help moving or help getting necessary prescriptions, food, or other essentials, or if you require special arrangements to receive emergency messages, make a plan with friends or helpers. Make sure they know where you keep your Disaster Supplies Kit. Give a key to a neighbor or friend who may be able to assist you in a disaster.
• Maintain a list of important items and store the list with your Disaster Supplies Kit.
Give a copy to another member of your household and a friend or neighbor. Important items might include:
-Special equipment and supplies, for example, hearing aid batteries.

-Current prescription names, sources, and dosages.
-Names, addresses, and telephone numbers of doctors and pharmacists. If you get prescriptions by mail, confirm where you will be able to get them locally in an emergency.
-Detailed information about the specifications of your medication or medical regimen, including a list of things incompatible with medication you use, for example, aspirin.
• Contact your local emergency management office now. Many local emergency management offices maintain registers of people with disabilities and their needs so they can be located and assisted quickly in a disaster.
• Wear medical alert tags or bracelets to identify your disability in case of an emergency. These may save your life if you are in need of medical attention and unable to communicate.
• Know the location and availability of more than one facility if you are dependent on a dialysis machine or other life-sustaining equipment or treatment. There may be other people requiring equipment, or facilities may have been affected by the disaster.
• If you have a severe speech, language, or hearing disability:
-When you dial 9-1-1 (or your local emergency number), tap the space bar to indicate a TDD call.
-Store a writing pad and pencils to communicate with others.
-Keep a flashlight handy to signal your whereabouts to other people and for illumination to aid in communication.
 -Remind friends that you cannot completely hear warnings or emergency instructions. Ask them to be your source of emergency information as it comes over the radio. Another option is to use a NOAA Weather Radio with an alert feature connected to a light. If a watch or warning is issued for your area, the light would alert you to potential danger.
-If you have a hearing ear dog, be aware that the dog may become confused or disoriented in an emergency. Store extra food, water, and supplies for your dog. Trained hearing ear dogs will be allowed to stay in emergency shelters with their owners. Check with local emergency management or American Red Cross officials for more information.

• If you have a service animal:
-Be aware that the animal may become confused or disoriented in an emergency. Disasters may often mask or confuse scent markers that are part of your service animal’s normal means of navigation.
-If you are blind or visually impaired, keep extra canes placed around your home and office, even if you use a guide dog.
-If you have a guide dog, train the dog to know one or two alternate routes out of your home or office. A guide dog familiar with the building may help you and others find a way out when no one else can see.
-Be sure your service animal has identification and your phone numbers attached to its collar, including emergency contact information through a national pet locator service.
-Have a complete pet disaster kit with food and water, medical records and identification, bowls, extra leash, a favorite toy, and a pet first aid kit. See “Disaster Supplies Kit.”
-Trained service animals will be allowed to stay in emergency shelters with their owners. Check with your local emergency management agency or American Red Cross officials for more information.

• If you use a wheelchair:
-Show friends how to operate your wheelchair or help you transfer out of your chair so they can move you quickly if necessary.
-If you use a power wheelchair, make sure friends know the size of your wheelchair, in case it has to be transported, and know where to get a battery if needed.
-Inquire about emergency equipment that would make it easier for others to help you get out if you live or work in a high-rise building and might have to evacuate via a stairwell. Make arrangements with others to be carried out, if necessary, and practice doing that.

• Listen to the advice of local officials. People with disabilities have the same choices as other community residents about whether to evacuate their homes and where to go when an emergency threatens. Decide whether it is better to leave the area, stay with a friend, or go to a public shelter. Each of these decisions requires planning and preparation.

The Importance of Setting Boundaries During Times of Grieving

It's funny the little things that you think about when you are grieving, the thoughts, insignificant to anyone other than you, that suddenly flood your heart with a profound sense of loss.  

Moments before writing this post, I was reading an article about setting boundaries during grieving.  I decided to write a quick post recommending that article to you.   I began reflecting on my own process of grieving when suddenly, of all the things that could pop into my mind, I thought about my Mom's Polaroid camera. 

How many of you remember the Polaroid Camera? 

Both my Mom and I owned one and neither one of us could resist taking dozens of photos at every family gathering.   

If you owned a Polaroid, you recall the process of: taking your photo; removing the film card from the camera; peeling off the cover; and watching your picture slowly develop.  Actually the picture developed in a minute or less.  It just seemed like the process took longer because you were standing there watching it.  Those were great little cameras and the pictures held up for decades.  However over time, those old photos began to fade and the edges curl. Hopefully you scanned yours into your computer before they completely faded.  I saved a few of Mom's and mine but I never got to them all.  All of those photos faded and were eventually lost forever.  Ironically, Mom's life slowly faded in a similar manner as the result of Normal Pressure Hydrocephalus.  Her memories, her mobility and her life slowly faded away over the course of 10 years and I was an eyewitness to almost every minute.  And just like the times I spent waiting for those old Polaroid films to develop, it seems like that process took much longer too.

It is said that we should never make important decisions when we are: stressed, overly tired, or grieving.  That is certainly wise counsel.  However, it simply doesn't apply to the world of family caregivers who are: often stressed; almost always tired; and for whom grieving is a complex and long process. 

In the case of those who care for someone with Alzheimer's disease, traumatic brain injury or other forms of dementia the grieving begins long before their loved one dies.  Instead, the grief comes in waves, as each stage of their loved one's disease erases another bit of their motor function and memory. 

If you are a former family caregiver who has experienced the loss of the person who was in your care you can probably relate to this comment by Allana Reoch as much as I do:

"I have spent a lot of time setting fires in my psyche over the reality that I wasted my time in the last few weeks of my dad’s life sharing my experience with people who took advantage of my vulnerability.  It has been tedious and frustrating work to forgive myself and attempt to understand the complexity of those situations. As a result, I am fiercely protective of the space I need to grieve, and I advocate for others to empower themselves to do the same."
http://www.shedoesthecity.com/setting-maintaining-boundaries-for-a-safe-space-for-grieving?

I too wasted time trying to explain my experience of grieving to others until I realized that only someone else who has traveled a similar path could understand.  To date, I have not been able to fully express my feelings of being alone in the home in which both of my parents had died or why I would never want to sleep in the bedroom in which I had watched my mother slowly slip away.  Like Allana, it was my experience that there were those who took advantage of my vulnerability in the weeks and months after my mother's death. But that is not their problem, it is mine. 

I strongly recommend that every family caregiver read this article and share it with others.  It is important that we fully own our grief but equally important that we accept the fact that it may never be understood by others. 


* How Instant Film Works

QOTD: How Did Being Present At The Death of a Loved One Change Your Perspective on Dying?

Death comes to all of us but it's a conversation topic that most of us try to avoid. However not only do we need to realistically acknowledge our own mortality, we must also prepare ourselves emotionally for the passing of our loved ones.

While not all of us will experience being present at the death of a loved one, there are many of us who have lived through that experience and our lives are forever changed in some way by that moment of saying farewell.

Today's question of the day on Through the Maze is, have you ever been present at the death of a loved one and how did that experience change you?

Share your story below and/or tweet me with your responses @pamelalynnekemp.  And if you are currently grieving please feel free to share your thoughts with your friends and/or family to help them understand your experience.

"Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Consider, for example, that two thirds of those who are diagnosed with cancer currently have a five-year survival rate.
The result of all of this is that death has become less and less a sudden and unexpected event. In its place has come a process that begins with a life-threatening diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death. This process means that both the terminally ill individual and the family are increasingly confronted with the need to “live with death” for a prolonged period of time. 

Because the nature of death and dying has changed so dramatically, the way we grieve has also changed. The new grief differs from traditional grief in significant ways, not the least of which is that it includes the terminally ill person. In addition, what has increasingly become a protracted process as opposed to an event not only leaves individuals to mourn but typically draws in the entire family of the dying person for months or even for years. This process has the potential to alter lifestyles and force families to confront issues that once were dealt with only after the death of the loved one. It can easily evoke issues from the past that were never fully addressed or resolved."  from the article "Saying Goodbye: Coping With a Loved One's Terminal Illness" 

  http://www.helpguide.org/harvard/saying-goodbye.htm

Memories from A Caregiver's Kitchen

As my way of thanking you for visiting my blog I am sharing one of my favorite breakfast/brunch recipes from my  recipe box on FoodNetwork.com.

This is my twist on Asheville, NC's Tupelo Honey Cafe's   Sweet Potato Pancakes with Spiced Pecans and Peach Butter. 

I hope that you'll try this and let me know how you like it.  You can leave me a comment below or better yet share your photos and comments with me on Twitter @ILuvHorseRacing.

I'll be sharing more recipes,  insights on caregiving and a few other topics in my upcoming newsletter.  Check back for subscription details. 

Enjoy. 

Ingredients

* 2 1/2 cups all-purpose flour or Bisquick

* 1 teaspoon salt (if you're not using Bisquick, if so you can leave this out)

* 1/2 cup sugar

* 1 tablespoon baking powder

* 2 cups milk

* 1 cups vanilla yogurt

* 3 large eggs

* 2 tablespoons butter, melted

* 2 large sweet potatoes, baked and cooled

* 1 teaspoon ground cinnamon

* 1/2 teaspoon ground nutmeg

* 1/2 teaspoon ground allspice

* 1/2 teaspoon ground cloves

* 1/4 teaspoon ground ginger

* 1 teaspoon lemon extract

* 1 teaspoon vanilla extract

* 1 teaspoon pecan extract

* 2 tablespoons of cooking oil

* Honey Pecans, recipe follows

* Peach Butter, recipe follows 

Directions: 

Directions

In a large bowl, combine the flour, salt, sugar, and baking powder. In a separate bowl, whisk together the milk, yogurt, eggs, and melted butter, and then add this to the dry mixture. Peel and mash the sweet potatoes,in a bowl, and then add the honey, spices and other flavors and mix it well. Add this mixture into the pancake batter.

Let the batter stand for 1 hour (or you can make it a day ahead of time).

Heat cooking oil in a fry pan over medium heat. Add batter by the ladle ful and cook the pancakes, in batches, until golden brown on each side. Serve immediately with Honey Pecans and Peach Butter.

Honey Pecans

* 1 cup pecans, chopped

* 1/2 tablespoon butter

* 1/2 tablespoon tupelo honey

* 1 tablespoon brown sugar

* 1/4 teaspoon ground clove

* 1/4 teaspoon sea salt

Heat a medium skillet over medium heat. Add all the ingredients and cook until the pecans are lightly brown and caramelized, about 8 to 10 minutes. Remove from heat, cool, and store in an airtight container.

Yield: about 1 cup

Peach Butter

* 1/2 cup peaches, peeled and diced

* 1/2 pound butter, softened

* 1/4 cup brown sugar

* Pinch sea salt

In a medium bowl, combine all ingredients and mix well until smooth. Cover and refrigerate until you are ready to

serve.

Yield: about 1 1/2 cups

Would you like to create your own, personalized Recipe Box? Set it up today!
http://recipes.foodnetwork.com/welcome

The Often Misunderstood World of Caregivers' Humor

" 'Marry an orphan,' my mother used to say, 'and you can always come home for Christmas.' What she should have said was: 'Marry an orphan, or you’ll have four parents to nurse through every torment life doles out on the long, long path to the grave.' "  ---Margaret Renkl from the article "Caregiving: A Burden So Heavy Until It's Gone"

As my longtime friends have learned caregivers' humor, especially mine, can be a bit macabre and dark  at times.  I guess that's why my favorite film adaptation of "Alice in Wonderland" is Tim Burton's.   Finding humor in a situation that most would find scary, sad or depressing is a technique for maintaining your emotional balance when your world has become topsy turvy.

As a caregiver for a parent with Alzheimer’s or other form of dementia you watch your loved one go through a pseudo Benjamin Button experience.   Their body ages but their mind travels steadily backwards in time.    And while your logic and reason understands why you are pureeing your parent's food and changing their diaper,  your heart, and the child in you, can't bear to watch.

 When your parent is going through the terrible twos and doesn’t want to be changed, doesn’t want to eat, and basically treats you as if everyone is nicer than you, there is no time-out that will correct the behavior .   In fact, unlike the parents of young children who at least have the hope that their child will grow out of any behavioral issues and one day become individuals with whom they can reason,  dementia caregivers can only look forward to a day when their loved ones will no longer be tormented by any awareness that their brains and bodies have betrayed them.

This morning as I was reading Margaret Renkl's New York Times article,  the memories of caring for my own mother came flooding back.   If you've walked in those shoes I am sure that you can also relate to the following:

"There’s an art to helping people without making them feel bad about needing help, an art I hadn’t wholly mastered with Mom. 'I would’ve died if my mother had done this to me when I was your age,' she said when she moved in next door. But by the time she actually died three years later, we had both adjusted: 'I know I can be a bitch sometimes, but you can be a bitch sometimes, too," she would say. 'I figure it all works out in the wash.' 

    But as close as we were, I sometimes found myself despairing her long-lived genes. My great-grandmother lived to be 96; my grandmother lived to 97 despite being shot in her 70s by a drugged-out stranger. I knew my kids would one day leave for lives of their own, but Mom’s needs would just keep growing. By the time my nest was truly empty, I thought, there would be precious little left of me."

One big difference between Margaret and myself,  I've never for a moment despaired of my mother’s long-lived genes.  I have,  on the other hand,  had moments when I reflected on the quantity versus the quality of years and joked about being euthanized rather than living as a shell of my former self.

As for my often dry, macabre and apparently British sense of humor,  my close friends totally get it.  Thank God.  

Journey Through The Maze Illustrated

Traditionally, one of the ways that we have been able to gain a glimpse into the hearts and minds of historical figures and everyday people, both famous or unknown to anyone but their loved ones, is through their letters which were often discovered in attics and trunks and discovered after their death.  Today's "letters in the attic" will most likely not be beautifully hand scripted letters or diaries but rather our social media posts and our memes. However,  we should never wait until a person is deceased to learn more about them.   In light of that I've  decided to pull together a collection of my favorite memes from the past few years.  Here's a bit of my journey through the maze reflected in some of my favorite memes. 

https://www.facebook.com/media/set/?set=a.545502205598157&type=1&l=6bb47dabe5

For more about my journey continue reading.  

http://www.through-the-maze.com. 

Enjoy

Lessons Learned from Jon Stewart

Thank you to the staff of Bill Moyers for graciously allowing thua article to be republished

Jon Stewart on Comedy in Times of Tragedy

March 22, 2012 | Updated August 6, 2015 by BillMoyers.com Staff
This post first appeared on BillMoyers.com.
After 16 years, Jon Stewart is leaving The Daily Show and like many fans, we're very sad to see him go. Who will make us laugh about the sad state of affairs that is American politics? In this 2007 moment from Bill Moyers Journal, Stewart talks about his struggle to remain empathic and upbeat in a world of concurrent tragedies, and the importance of delivering news with context: "It wouldn't be a very interesting show if I just came out one day and said, 'I'm going to sit here in a ball and rock back and forth. And won't you join me for a half hour of sadness.'" Watch the clip.

Recommended for the Caregiver's Bookshelf:  "The Aftereffects for Caregiving" by Gary Joseph LeBlanc

"A book you won't want to miss. Gary LeBlanc cared for his father with dementia and has a wealth of knowledge. This is...
Posted by Pamelakempllc on Wednesday, August 5, 2015

"Reading 'The Aftereffects of Caregiving' by Gary Joseph LeBlanc feels like having a close friend during what can be an incredibly lonely time in life. Gary courageously and candidly invites us to learn how to navigate the unchartered waters that is this life without our loved one beside us. Struggles with grief, depression, identity crisis, rebuilding self-esteem, reconnecting with a family and friends when it feels like the world has been moving on without you, the relationship between weight gain and worry, getting re-married or selling the family home are all dealt with in an empowering and actionable way that makes you feel like you just had a heart to heart talk with a trusted older brother. Gary's been there, he's open about what he feels he did right during and after his caregiving experiences and what he wished he would’ve done differently. He shares his unvarnished story devoid of the kind of self-serving polish that some writers employ that conveniently omits missteps in an effort to be perceived as an expert. Gary has none of those airs about him. You feel like he's talking to you and that he knows you when you read his words and I can’t think of a more desirable relationship an author can have with their readers. Thank you for this great resource, Gary. There weren't many tools out there before this one to help us get through that first day we wake up without the person we've been caring for and all that unfolds in the weeks and months that follow." 

-- Mara Botonis, Author of "When Caring Takes Courage: A Compassionate and Interactive Guide for Alzheimer's and Dementia Caregivers", 2015 Recipient of the Jefferson Award for Outstanding Public Service 2015 Jacqueline Kennedy Onassis Medal Honoree-Outstanding Impact National Public Service , Co-Chair National Dementia Action Alliance Utilization and Access Work Group, Project Lifesaver International Law Enforcement/First Responder-Alzheimer’s Trainer, Alzheimer’s Association Board Member-Southeast Florida Chapter, Curator of: www.caregivers.com, Co-Moderator USAgainst Alzheimer’s National Support Group, Contributing Writer for www.alz.live, www.alzheimersreadingroom.com, www.alzheimersnet.com, www.commonsensecaregiving.com and www.aplaceformom.com, Alzheimer's Keynote Speaker, Alzheimer’s Family Caregiver Advocate, and Alzheimer’s Awareness Volunteer

Journey Through The Maze: A Family Caregiver's Tale

Sometimes in life, you just can't pick up where you left off.  When I decided to relaunch this blog so much had changed in my life that simply pressing the pause button to resume writing was not an option, just as there have been no quick fixes for restarting the life that I placed on hold to be a family caregiver.  So I dropped the blog's previous name relinquished the domain PointOfView316 and chose a name that reflected the journey which my life has taken. 

The new name, "Journey Through The Maze" was partially inspired by the 150th anniversary of Lewis Carroll's story "Alice in Wonderland".  And while I certainly didn't fall through a hole while chasing a white rabbit, I have been on a strange and unexpected journey through the world of being an adult orphan and former family caregiver.
  
Why do I draw parallels between a caregiver's journey and Alice in Wonderland?
For me being a family caregiver has been a mashup between the experiences of Alice and the Cheshire Cat. 

Sparksnotes gives us this brief synopsis of the two characters:

"The tension of Alice’s Adventures in Wonderland emerges when Alice’s fixed perspective of the world comes into contact with the mad, illogical world of Wonderland. Alice’s fixed sense of order clashes with the madness she finds in Wonderland. The White Rabbit challenges her perceptions of class when he mistakes her for a servant, while the Mad Hatter, March Hare, and Pigeon challenge Alice’s notions of urbane intelligence with an unfamiliar logic that only makes sense within the context of Wonderland. Most significantly, Wonderland challenges her perceptions of good manners by constantly assaulting her with dismissive rudeness. Alice’s fundamental beliefs face challenges at every turn, and as a result Alice suffers an identity crisis. She persists in her way of life as she perceives her sense of order collapsing all around her. Alice must choose between retaining her notions of order and assimilating into Wonderland’s nonsensical rules.

The Cheshire Cat is unique among Wonderland creatures. Threatened by no one, it maintains a cool, grinning outsider status. The Cheshire Cat has insight into the workings of Wonderland as a whole. Its calm explanation to Alice that to be in Wonderland is to be “mad” reveals a number of points that do not occur to Alice on her own. First, the Cheshire Cat points out that Wonderland as a place has a stronger cumulative effect than any of its citizens. Wonderland is ruled by nonsense, and as a result, Alice’s normal behavior becomes inconsistent with its operating principles, so Alice herself becomes mad in the context of Wonderland. Certainly, Alice’s burning curiosity to absorb everything she sees in Wonderland sets her apart from the other Wonderland creatures, making her seem mad in comparison.

SparkNotes Editors. “SparkNote on Alice’s Adventures in Wonderland.” SparkNotes.com. SparkNotes LLC. 2005. Web. 29 Jul. 2015.

Yes, my journey both during and since being a family caregiver has definitely been a mashup of Alice and the Cheshire Cat, trying to maintain the calm and objective perspective of the cat while simultaneously feeling that life is spiraling through one insane situation after another with no seeming end to the madness in sight.  

Here's a situation that I described in a previous blog post :

My mother was taken via ambulance to the emergency room of a local hospital at 5 pm on Tuesday, February 16, 2010.  I advised both the paramedics and the attending in the ER that my mother was diagnosed with NPH (normal pressure hydrocephalus) in 2005 (the actually diagnosis was in 2004 but the date was changed to protect my mother's privacy when this was originally posted*)  but recently she had been experiencing a drastic decline in mobility. She had also been complaining of pain in her right ankle, knee and wrist which might be the result of a fracture sustained during a recent fall.  In addition, and not in any way related to a diagnosis of NPH, a large unknown mass had appeared on her abdomen.



At approximately 1 am, Wednesday February 16, 2010, we were still in the emergency room and I had to repeat the same detailed information again to the admitting resident.

  Finally, at 3:30 am, after 11 hours in the ER, my mother was taken to a room. Once again, I provided the nurse with a full description of my Mom's condition.  Later on Wednesday my mother was seen by a neurologist. In fact, I was able to have a wonderful discussion with him when I visited my mother later that afternoon. So far all was going well.

I was very troubled that my mother had had very, very little sleep in over 36 hours but I believed that she was receiving the care that she needed. 

I won't bore you with all of the details so I'll just skip to 11 am Thursday, February 18.  While attempting to determine just who in the hospital was coordinating my mother's care, I was advised that the attending intern/resident in the ER had failed to note anything on her chart about the abdominal mass or my concerns that my mother may have sustained stress fractures during her last fall.  In fact, I have good reason to believe that it was not until I brought the non-NPH issues to the attention of the admitting physician on Thursday that X-Rays of her limbs and a MRI of the abdomen had never been ordered. Needless to say, I was not a happy camper. However, at least now everyone was on the same page and all of my mother's health concerns would be properly addressed. Or so I thought.



Since the hospital was well aware that my mother suffers from NPH, a disease which affects memory and mobility function, I thought certain that they would contact me on Friday morning with her tests results. Unfortunately, not only did the hospital fail to contact me with my mother's test results, a doctor making his rounds on Friday morning told my mother (not I) that she was being released that day. My mother called me at home at 2pm on Friday and informed me that she was being released. After confirming this with the nurses' station, I contacted the hospital's social services office and, in a very forceful manner, asked that they make arrangements to have an ambulance taken out of their establishment asap. Yes, I ranted and now, of course, those rantings are being chalked up to caregiver burnout.

 My mother's discharge papers simply read:

Discharge Diagnosis: Normal Pressure Hydrocephalus
Follow up with your office in one week
Activity: as tolerated:
Diet: regular
Discharge to: Home

Oh how I wish that I could tell you that this hospital visit was atypical but I can't.  Scenes like that this one became the norm after my mother retired and I had left my job to be her full-time caregiver.  Sadly many people, even those entrusted with maintaining the public's health, seem to have a general disdain for the elderly and those whom they perceive as not actively contributing to society.  The sentiment, "what have you done lately" seems to have replaced the "golden rule"  as well as the hippocratic oath.  And it certainly didn't help that both my mother and I were women. 


As Hoffmann and Tarzian cited in their article, "The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain": 

"There is now a well established body of literature documenting the pervasive inadequate treatment of pain in this country.  There have also been allegations and some data, supporting the notion that women are more likely than men to be undertreated or inappropriately diagnosed and treated for their pain.

One particularly troublesome study indicated that women are more likely to be given sedatives and men to be given pain medication.  Speculation to why this difference might exist has included the following: Women complain more than men; women are not accurate reporters of their pain; men are more stoic so when they do complain of pain 'it's real'; and women are better able to tolerate pain or have better coping skills than men." 

In essence the medical profession is trained to believe that female patients simply can't be trusted to relay their own feelings.  Insanity.

spinning in circles

Of course caregiving isn't solely about hospital visits and patient advocacy.  There's the day to day feeding, bathing, and medication management duties as well as the legal and financial responsibilities. Some days you find yourself spinning in circles

praying

If you are a religious or spiritually minded person you spend a great deal of time in prayer.

warrior woman

You spend a great deal of time advocating for and occasionally literally fighting on behalf of your loved one.  In her article  "Call to Duty:  The burden that women take on far more than men do" Allison Pugh writes,

"Some people run towards commitment, not away from it. We all know someone like that — those who take on the care of a child with special needs, an elderly person with Alzheimer’s, or a mentally disturbed spouse.

It is difficult to estimate their numbers, but there are certainly millions of these heroes in the United States. More than 15 million Americans give unpaid care to someone with Alzheimer’s — three out of five of these reporting high or very high emotional stress in doing so — while more than half report facing significant financial strain. Most of the 5.9 million children with severe disabilities in the United States are taken care of at home by their parents and families.

Women are more than twice as likely as men to serve as unpaid, informal caregivers, and low-income caregivers spend more time giving care (42 percent more time than those who make more than $50,000). Families with income under the poverty line are more than twice as likely as others to provide more than 30 hours of unpaid assistance each week to elderly parents, according to one 2005 study. And a National Alliance Caregiving report found that “high-burden” caregivers spent an average of 46.9 hours weekly giving care. Often, caregivers spend years of their lives providing this social service at profound cost to themselves in terms of the strain on their personal lives and careers."

Read the rest of the article at:
 http://nytlive.nytimes.com/womenintheworld/2015/07/03/the-burden-women-take-on-far-more-than-men-do/

weathering the storm

However you spend most of your days trying to bring some measure of joy and beauty into the life of your loved one.  And you spend a lot of time in the virtual community of fellow caregivers.  In fact, the internet and caregiver support groups become a life line for family caregivers, something that seems quite abnormal to most of their real world friends and extended family.   



In their 2012 article titled "Family Caregivers Online" posted by the Pew Research Center  Susannah Fox and Joanna Brenner wrote:

"The internet is an integral part of the lives of people who care for loved ones.
Thirty percent of U.S. adults help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Most are caring for an adult, such as a parent or spouse, but a small group cares for a child living with a disability or long-term health issue.
Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health information, outpacing other internet users on every health topic included in our survey, from looking up certain treatments to hospital ratings to end-of-life decisions.
Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.
Caregiving is associated with being online and with online e-health behaviors.
Caregivers are somewhat better educated and more likely to be middle-aged (ages 50-64) than are non-caregivers. However, statistical analysis shows that when comparing people of similar age, education and other demographic characteristics, being a caregiver in and of itself is associated with a greater likelihood of using the internet, particularly to get and share health information.
Caregivers are highly social, both online and offline.
Caregivers are more likely than other internet users to take advantage of social tools related to health:
    •    44% of online caregivers have read someone else’s personal health story online, compared with 29% of non-caregivers.
    •    28% of online caregivers who use sites like Facebook have followed their friends’ personal health experiences or health updates, compared with 21% of non-caregivers who use such sites.
    •    26% of online caregivers have looked online for someone with similar health concerns, compared with 15% of non-caregivers.
Caregivers are also more likely than other people to tap into their offline social networks when they need health information, care, or support. The last time they had a health issue:
    •    70% of caregivers say they turned to friends and family members for information, care, or support, compared with 47% of non-caregivers who did the same.
    •    28% of caregivers say they turned to others who have the same health condition, compared with 17% of non-caregivers who did so, either online or offline.
Caregivers are active health care consumers.
Caregivers are more likely than other internet users to read online reviews of drugs, clinicians, and medical facilities:
    •    38% of online caregivers have consulted online reviews of particular drugs or medical treatments, compared with 18% of non-caregivers.
    •    21% of online caregivers have consulted online rankings or reviews of doctors or other providers, compared with 13% of non-caregivers.
    •    20% of online caregivers have consulted online rankings or reviews of hospitals or other medical facilities, compared with 12% of non-caregivers."

In summary, family caregivers live a dual reality that blends a virtual online world with their offline world. 

By now you're probably starting to see the parallels between "Wonderland" and the "The Maze" yourself.

I am often asked if I would become a full-time family caregiver all over again knowing what I know now.  Most of the days the answers is "yes but I would do things very differently"  but many days the answer is a definite no.  Both responses of course are based on knowledge that I could have only acquired by experience and neither answer reflects my love and respect for my late mother whom if she could speak today would not be at all happy about how things have turned out for me.  Of course, my story is still being written.