Shifting Priorities

Being a family caregiver is a 24/7 job.  It’s probably one of the most difficult and thankless jobs one can do.  The stress level is off the charts, the pay is non-existent and trying to make time for you is next to impossible.

We become caregivers for several reasons: need, duty, personality type, but mostly because we love the person who needs care and we want to support them through whatever it is that they are going through.  It’s this final reason that keeps us showing up, even on the most difficult days.

Caring for another person can and will take its toll on us emotionally and physically if we do not FIRST take care of ourselves.  Self-care is the biggest conundrum we face as caregivers as the majority of our time and energy is focused on the needs of othersIn truth, if we do not take the time to take care of ourselves first we become less effective at caring for others which can create more problems than we already face as we try to manage the needs of others.

I (again) realized this the several years ago, after a long holiday weekend, I found myself up most of the night very sick (I won’t go into details let’s just say it wasn’t pretty).  The next morning I had a long list of things I needed to do to help my aunt who is recovering from surgery, however; I realized when I tried to get up after only a few hours of sleep I was so exhausted that I couldn’t get my body nor my brain to function sufficiently enough to take care of the things that needed to get done, so I climbed back into bed and slept for another few hours.

Though I lost a good portion of my morning I was able to get everything done that NEEDED to be done, pushed a few things to the next day’s list and took an afternoon nap for good measure.  To many of you this may seem like a day wasted, let me assure you, it wasn’t.  By taking the steps necessary to make self-care a priority that day, I was 10x’s more productive the next day.

Sometimes all it take is a few extra hours of sleep, other times it might be prioritizing the to-do list by what NEEDS to get done and either delegating the other items or pushing them to a less jam-packed day.

Bottom line self-care needs to become a PRIORITY in the life of anyone who is caring for an elderly or chronically ill loved one.  Not taking care for yourself when sick, or wearing yourself down trying to get it all done isn’t good for you or those who are depending on you.

For more support/resources visit: CaregiverLife.com

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Veterans Affairs (VA) benefits – Support for our Aging Veterans

A few years back with some local Veterans

For many elderly veterans the rising cost of assisted living or home health care can be staggering, causing their life savings to be diminished paying for health care as they age. There are VA benefits that can help you get the care you need without using up your retirement savings.

Geriatric Patient Aligned Care Team (GeriPACT)

The VA launched GeriPACT program to provide healthcare for Veterans with more than one chronic disease and with declining mental and physical capabilities. GeriPACT integrates traditional healthcare services with community-based services. The goal is to provide Veterans with these challenges with as much independence and quality of life as possible.  GeriPACT teams include primary care providers and multi-disciplinary teams who have expertise with the special healthcare needs of these Veterans.

How does this program support veterans?

  • Helps integrate and coordinate health care services provided by VA with community-based services.
  • Strives to optimize independence and quality of life.
  • Includes healthcare team members who possess expertise and advanced training to assess and address the illnesses and issues of vulnerable and elderly Veterans.
  • Serves Veterans who require a level of care that is not generally available to them through a regular patient aligned care team (PACT) – for example, they might have complex care needs or require care management.

VA benefits provide for a range of long-term services including residential care, adult day health care, geriatric evaluation, as well as respite care.  Nursing home benefits may be provided if specific qualifications are met. The following long-term care services are available to all enrolled Veterans.

Respite Care

Provides supportive care to veterans on a short-term basis giving the caregiver a planned period of relief from the physical and emotional demands associated with providing care. Respite care can be provided in the home or other non-institutional settings

Home Care

Skilled home care is provided by VA and contract agencies to veterans that are homebound with chronic diseases and includes nursing, physical/occupational therapy and social services.

Hospice/Palliative Care

This program offers services to veterans in the late stages of the chronic disease process.  Services also include respite care as well as bereavement counseling to family members.  There are no co-pays for hospice care provided in any setting.

Eligibility Requirements

Pension benefits are needs-based and your “countable” family income must fall below the yearly limit set by law. Veterans must have at least 90 days of active duty, including one day during a wartime period. If the active duty occurred after September 7, 1980, you must have served at least 24 months or the full period that you were called up (with some exceptions). You must also be:

  • Age 65 or older with limited or no income, OR
  • Totally and permanently disabled, OR
  • A patient in a nursing home receiving skilled nursing care, OR
  • Receiving Social Security Disability Insurance, OR
  • Receiving Supplemental Security Income

The Veteran must have met the service requirements above for surviving spouses and children applying for the Survivors Pension.

Caregiver Programs and Services:

VA has long supported family caregivers as vital partners in providing care worthy of the sacrifices of America’s Veterans and Service members. Each VA medical center has a Caregiver Support Program coordinated by a Caregiver Support Coordinator (CSC). The CSC coordinates caregiver activities and serves as a resource expert for Veterans, their families, and VA providers.

My father-in-law Ed Cutler served in the Navy at Pearl Harbor after the attacks.

The social work department at your nearest VA medical facility can provide specific information about services or other assistance available through VA and your local community.  Visit http://www.va.gov/ for more information.

Source: U.S. Department of Veterans Affairs website

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Lessons from a Caregiver – Guest Post

Often, we hear that the role of caretaker to the elderly is a stressful one, particularly in Senior lady and her granddaughtersituations where one family member is asked to care for another. In cases where Alzheimer’s or other forms of dementia are present, this role becomes especially important, but also more difficult. Studies are conflicted—some suggest that it is harmful to the caregiver, others demonstrate no effect (hard to believe) and still others imply that the role of caretaker is a positive one in the lives of those who choose it.

Caregivers tend to be over the age of 64, female, and either white or African-American, and (according to a study conducted by Center on Aging and Health at Johns Hopkins University) are leading more fulfilling lives. This could be happening for any number of reasons—we feel better when we’re able to give back to an aging parent who spent years raising us or we’re able to see noticeable improvements in our loved ones. Maybe it’s that we’re simply grateful that someone is grateful to us, that we’re needed.

No matter the reason, the fact remains that providing care to family or friends can serve a dual purpose in our lives. For the person being cared for, the benefits are immediately apparent. They receive care in a setting that is likely familiar to them from people who are familiar.  In all stages of dementia, this can be a source of great comfort. The collection of friends or family serving as caregiver makes the person being cared for more comfortable, undoubtedly.

The reason for a greater sense of fulfillment on behalf of the caregiver is likely more complex. It’s complex on the whole and its complex for me. As an at-home caregiver to my mother who is in the early stages of Alzheimer’s, it is a role I struggle with daily but am infinitely grateful for. Taking care of my mother was at first tricky for me to grasp—this woman who had raised me largely by herself was now at the mercy of her eldest daughter. But she needs me and I go on needing her. Ultimately, she’s the same kindhearted woman she’s always been and I try daily to be the same.

In serving as a caregiver, I’ve learned that there is a learning curve, but it keeps curving and curving and spiraling. Most of us in this role are thrust into it—we approach tentatively, learning the disease and the act of preventing it or caring for it or adapting to it as we go. This never stops. I’m more patient than I’ve ever been. I’m, thanks to my mother in these years and the ones before, more grateful too.

Madison HillMadison Hill is a world-class baker and an average photographer. She’s currently getting rained on in Seattle, where she and her mother are learning the ends and outs of Alzheimer’s care. 

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A Fundamental Rule in Caregiving (that no one seems to follow)

In honor of National Caregiver Month, I thought this was a great post to start off the month.

Please read & share.

An essential imperative of caregiving is: Take care of yourself.  However; the majority of family caregivers are so busy taking care of others that they neglect to care for themselves.  The sad irony is that if caregivers made it a priority to care for themselves FIRST they would actually have MORE energy to help others and therefore be more available to help those around them.

Research by the Family Caregiver Alliance shares some significant reasons to make self-care a priority:

 Caregivers are in worse health.

  • 11% caregivers report that their physical health has gotten worse.
  • Caregivers reported chronic conditions (including heart attack/heart disease, cancer, diabetes and arthritis) at nearly twice the rate of non-caregivers (45 vs. 24%).
  • Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop serious illness and have high levels of obesity.
  • Caregivers have diminished immune response, which leads to frequent infection and increased risk of cancers.
  • Caregivers exhibit exaggerated cardiovascular responses to stressful conditions putting them at greater risk for cardiovascular syndromes such as high blood pressure or heart disease.
  • Women who spend nine or more hours a week caring for an ill or disabled spouse increase their risk of heart disease two-fold.
  • Women caregivers are twice as likely not to fill a personal prescription because of the cost (26% vs. 13%).
  • 72% of caregivers reported that they had not gone to the doctor as often as they should, and more than half (55%) had missed doctor’s appointments.

Paying the ultimate price – Increased mortality

  • Elderly spousal caregivers (aged 66-96) have a 63% higher death rate than non-caregivers of the same age.
  • In 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.

Don’t become a statistic!

Simple steps to a healthier you:

  • Schedule time DAILY to take care of yourself (and stick to the schedule) – start out small and then increase the time each week (ex – 10 minutes of quiet time before bed – ½ hour walk after dinner)
  • Enlist family support – share with your spouse, kids and other family and friends that your scheduled time needs to be respected and supported.
  • Set boundaries – this can include scheduled visiting days/times with your elderly loved one (not every day), specific days of the week that the kids can have their friends over or go to a friend’s house.
  • Schedule a physical – this should be done ANNUALLY.  There are no ifs, ands or buts about it!

Here’s the good news – if you make self-care a priority, create a support system and set boundaries you can be healthier, happier and live longer.  Pro-active and preventative health measures are vital to helping those you love, because if you don’t take care of yourself, sooner rather than later, you wont be around to help those you love.

Start TODAY!

For more support visit – CaregiverLife.com

****A portion of my book sale proceeds go to support breast cancer research.

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Boobs, Bowel Movements and Caregiving Humor

Several years ago, my sister shared with me that when she called our aunt to wish her a “Happy Birthday” her reply was “I had a bowel movement today”, to which I commented “well then that was a happy birthday for her wasn’t it”.  Along those same lines, when my grandfather was alive he would also give me the daily “bowel update”, sometimes in the lobby of the retirement community he lived in and I worked at while on the way to my office.

Both my aunt and my grandfather had multiple health issues and spent more than her fair share of time in hospitals and rehab centers before her passing in 2013.  Anyone having cared for someone in these settings know that the staff asks certain questions on a daily basis, one of which is “did you have a bowel movement”?  At some point sharing this information becomes second nature.

The irony of that conversation was that were sitting in a Dr.’s office with my Mom, a breast cancer survivor, for a follow-up appointment after her mastectomy.  I remarked to my sister that “As caregivers our lives are all about boobs and bowel movements”, to which my Mom replied “sorry about the boob part.”

Don’t take my joking to mean that I don’t take the health challenges of those I help care for seriously. I have spent many sleepless nights praying for God’s healing. Equally; having worked in healthcare for the better part of 25 years I recognize that the appropriate use of levity can help to put us at ease in the midst of the chaos and stress associated with caring for people we love.

When things get too serious humor can help get us through the tough times without losing our minds. Studies have shown that using humor and being able to laugh during stressful time can:

  • Improve brain functioning
  • Blood pressure initially increases when we laugh, however; after the laugh it decreases to levels below normal
  • Protect the heart
  • Foster instant relaxation
  • Connect you with others

Norman Cousins, in his book Anatomy of an Illness (1979), noted that 10 minutes of belly laughter (just counting the laughing time) would give him two hours of pain-free sleep. Over a dozen studies have now documented that humor does have the power to reduce pain in many patients.

Humor draws attention away from the source of discomfort–at least momentarily and for those of us struggling to support and manage the care of those we love, it can be just what the doctor ordered.

**In honor of my Mom and all of the other women still fighting the fight against Breast Cancer, through the end of the year 50% of my book sales will go to support breast cancer research. **

For more caregiving support visit CaregiverLife.com

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The Caregiver Perspective

As a national speaker I have presented to hundreds of family caregivers throughout the country.  In each presentation I highlight how, as caregivers, we can become task masters; focused on our to-do list more than the people around us.

I share this by way of personal testimony.  As I examined my time caring for my grandfather, the transition from the granddaughter that spent time talking and hanging out with my grandfather to becoming hyper focused on the tasks needing to be done to care for him happened so unconsciously.  It wasn’t until years later that I realized that I was so focused on what needed to be done, I missed numerous opportunities to just talk and hang out with him. 

So you would think that after reflecting, recognizing and relating this information to family caregivers all across the country, I would be extremely self-aware if it were to happen again, right?!  WRONG!

A few years back I began journaling.  Now many people think that as an author and blogger, journaling would be something I do naturally, however; it’s far from the truth.  It wasn’t until I was on the flip-side of a very challenging year which included the death of several family members that I decided I needed some way to organize my thoughts and find inspiration.

I would journal all of the positive things happening (both large and small), as well as hopes and dreams for the future and create action plans based those ideas.  Many exciting opportunities were being created, and it was all documented in my journal.

Recently I spotted my journal under a pile on my desk, not remembering the last time I had written in it and remembering how encouraging I found it, I decided to read through the entries.  There were pages upon pages of inspired thoughts and thankfulness to God for all He was doing in my life and business. However; when I turned to the final entry I was shocked.

It read:

To Do

  • Pay phone bill
  • Write blogs
  • Follow up with contacts
  • Dog grooming

A stark contrast to the pages of enthused optimism that filled the prior pages.

Noting the date, I realized that in spite of all of the caregiver support programs and writing I do on a regular basis, it had happened again.  There was no denying it, it was right in front of me in black and white…the entry was dated the day after my Mom was diagnosed with breast cancer.

Somehow, her diagnosis had flipped a switch that propelled me from inspired writer into task-master caregiver without any semblance of awareness on my part.

With my new-found awareness I was able to make the following adjustment:

  • I regularly schedule time with my mom not related to Dr. visits and focused on fun.
  • I take time daily to focus on self-care and just breathe.  It is vital that caregivers make self-care a priority in order to be available to care for others.
  • I began journaling again to re-connect with the inspiration I had found in those pages.

If you are caring for someone, I encourage you today to do a self-check.

Are you more focused on your to-do list then on the people around you?  If the answer is “yes” make the necessary changes to take care of yourself and connect with those you love.

**In honor of my Mom and all of the other women still fighting the fight against Breast Cancer, through the end of the year 50% of my book sales will go to support breast cancer research. **

For more caregiving support visit CaregiverLife.com

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Rejoice in the Small Victories

Anyone who has had a loved one with cancer understands how stressful the ongoing 3-6 month marks are, waiting to hear if the blood work and bone-scans are clear. When those we love have had ongoing health issues and it seems like every time we turn around there is another doctor appointment, medical test or treatment plan it can be hard to find reasons to celebrate. Leading to being in a constant state of waiting for the next shoe to drop.

Unintentionally, by focusing on a future negative result that may (or may not) happen, we can fail to acknowledge the small victories – such as a bone-scan coming back the same (meaning it showed no change or growth in the cancer which is a GOOD THING). Regrettably we overlook the opportunity to celebrate these small victories because once we leave the doctor’s office we begin to focus on the “next appointment” in 3-6 months.

Focusing on what seems like an imminent future outcome can have some benefit when it leads to putting in place a plan for potential future health care needs.  Conversely, it can rob us of the joy of present time spent with our loved one.  The reality is, outside of a new treatment and/or miracle (which could happen), negative test results are a possibility sooner or later, but NOT TODAY!!!

Today I encourage you to:

  • CLAIM THE SMALL VICTORIES!!
  • No matter what the test results say, REJOICE in time together TODAY! 
  • If today, or during your last appointment, the cancer hasn’t changed, grown or spread SHOUT HURRAH!!!
  • If in this moment the blood work is showing normal ranges (even if it pertains to the continuance of your chemo treatment) share a YIPPEE!!!
  • If you are alive today – do a HAPPY DANCE!

I understand how stressful the thought of the cancer spreading can be.  Trust me I KNOW!!

Nonetheless, expending a good portion of your emotional energy being nervous about an unknown future can deprive you of peace, joy and the appreciation for another day of life, love and family.

**In honor of my Mom and all of the other women still fighting the fight against Breast Cancer, through the end of the year 50% of my book sales will go to support breast cancer research. **

For more caregiving support visit CaregiverLife.com

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