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Toula’s Tips: Caregiver Burnout — It’s Real!


Today we welcome my good friend and guest writer, Toula Wootan from Toula’s Tips for Caregivers to “The Purple Jacket”

 Have you ever felt like this? If so, you are certainly not alone. It’s so very common. Here are a few symptoms to let you know if you are experiencing caregiver burnout:

  • Overreacting to minor nuisances

  • Feeling constantly exhausted

  • Losing interest in work

  • Decrease in productivity at work

  • Withdrawing from social contacts

  • Increasing use of alcohol or stimulants

  • Change in eating patterns

  • Change in sleeping patterns

  • Increasing use of medications for sleeplessness, anxiety or depression

  • Inability to relax

  • Scattered thinking

  • Feeling increasingly resentful

  • Being short-tempered with care recipient frequently

Do you see yourself in the above? If so, perhaps it’s time to take a step back, or perhaps to take a real time-out.

How, you say? If you don’t have family or friends who can step in, there are many support services to help you do this. Many assisted living facilities offer respite, a short-term stay. There are also many adult day care centers in our area, and we have many companion/sitter agencies. Perhaps you qualify for Aging True — they have a team of volunteers who can sit with your loved one occasionally.

 Whatever it takes, take a break so you can rest, do something for yourself, renew your perspective and refresh. It’s essential. I like the saying, “You can’t pour from an empty cup.”

 I am the primary caregiver for both of my parents and work full-time, leading caregiving initiatives! I keep these eight things in mind to help me: sunshine, fresh air, exercise, prayer, water, diet, rest and laughter. Do they resonate with you? They are simple but make a big difference. So does having fun with friends! Don’t forget that.

 I hope these help you. As always, thank you for caring.

 

Toula Wootan

 Toula’s Tips for Caregivers, can now be hear on Spreaker.com/user/toulastipsforcaregivers or from Toula’s website at ToulasTipsforCaregivers.com.  You can email Toula at toulastips@gmail.com

Thank you Toula for all you do for Caregivers in Jacksonville and all over the country!

 

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Having The Talk: How To Make End Of Life Wishes Easier


The best preparation for tomorrow is doing your best today. H. Jackson Brown, Jr.

Richard and I during one of our many talks about what he wanted. This conversation centered around his medication.

Having “The Talk” does not have to be hard or difficult, yet the talk does have to happen at some point in our lives.   I’m not referring to the birds and the bees talk our parents have with us when we are adolescents. “The Talk” I am referring to is the talk we have with our loved ones about end-of-life wishes.

As a caregiver, one of our most important roles, if not the most important one of them all, is to be an  advocate. How can one advocate if you do not know the wishes or desires of the person in your care?  Richard and I always had the ability to talk openly about his wishes. In fact, our end-of-life conversation happened spontaneously; by the end of the conversation, our tears of love and joy were comforted by the knowledge that I knew exactly what he wanted.  “I will tell you when I am ready for hospice” he bellowed…Yes you did!

the talk

Click on the image to purchase Jack’s book

Recently I had the opportunity to visit with Jack Tatar who has written a book called “Having the Talk.”  “Having the Talk” focuses on ways to begin a family discussion earlier rather than later, about planning for the later life issues of a retired or retiring parent. Jack’s research demonstrated to him people have “the Talk”, but they have it too late, either when there’s little that can be changed, or after expectations have been set by siblings about “who gets what.” When this happens, families are torn apart, and loved ones who played together and protected each other throughout their entire lives now find themselves not talking to each other, usually all the way to their deathbeds.

Here is our recent episode of “Healing Ties” featuring Jack Tatar as we discuss how to have those difficult end-of-life conversation.  

While I understand not everyone is going to be able to have the same experience of having “The Talk” like Richard and I did, let me share a few suggestions on how you might approach this delicate conversation:

  • Always use open-ended question
  • Don’t force the conversation, if there is strong resistance, back off and revisit it at another time
  • Express the importance of  the need for you to be comforted, knowing that by following their wishes, makes it easier on you
  • Enlist the help of an objective third-party
  • Use examples of family and friends.
  • Learn about The Five Wishes 

I believe there are two common aspects to caregiving that everyone experiences, there is a beginning and there is an end, and in most cases, we are not prepared for either one of these life changing events!  It is difficult to plan for the unexpected, but having a plan in place does help temper the confusion when an emergency happens.

Have the talk…you will be glad that you did!

 

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Christopher MacLellan, MA is a Certified Senior Advisor, Certified Caregiving Consultant, the author of “What’s The Deal with Caregiving?” and the host of “Healing Ties™” podcast.

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Webinar: Working and Caregiving Survey Results


e6d06522-963a-4fad-8fa6-11992d1bee66I was most thankful to participate in Caregiving.com  annual Working Family Caregiver Survey earlier this year.  Your participation helped me earn my masters degree in Leadership and Communication from Gonzaga University in Spokane Washington.  On Thursday, June 9th, join me with Denise Brown from Caregiving.com for our webinar on Working Family Caregivers as we discuss the results of the 2016 survey.   Follow the link below to register for a reminder for Thursday’s webinar via Caregiving.com: See Denise Brown’s post below.   See you on Thursday!

Topic: Second Annual Working and Caregiving Survey Results

Day and Time: Thursday, June 9, at Noon ET (11 a.m. CT, 10 a.m. MT, 9 a.m. PT)

A 2012 report released by AARP found that 42% of U.S. workers provided unpaid eldercare for a family member or friend over the last five years. And, 49% expect to do so in the coming five years. Caring for a family member is a workplace problem.

To better understand their experiences, we asked working family caregivers to share in our Second Annual Working Family Caregiver Survey. We partnered with Chris MacLellan (@thebowtieguy), who used our survey results for his thesis. Chris is the author of “What’s the Deal with Caregiving?” and the host of “Healing Ties,” a weekly radio show. You can learn more about his work on his website, www.thebowtieguy.com.

Join us for this 45-minute webinar during which Chris and Denise M. Brown, founder of CareGiving.com, share the results of the Second Annual Working and Caregiving Survey.

Register to receive a reminder for our webinar below.

 

Register to receive a reminder for our webinar below by following this link: http://www.caregiving.com/caregiving-webinars/webinar-working-and-caregiving-survey-results/

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We Might Have Cancer, But Cancer Never Had Us


I learned through social media that Sunday June 5th is National Cancer Survivors Day which reminded me of the motto Richard  and I lived by after he was diagnosed  with esophageal cancer in 2011 -“We Might Have Cancer, But Cancer Never Had Us.”  Even in some of our most difficult days, we always stuck by our motto because it freed us from the burden of cancer. Sure, we were aware of the reality of the diagnosis, but the fact of the matter is, Richard outlived his original prognosis by more than two years.   I’m confident that  our motto kept us strong throughout the ordeal of dealing with his cancer diagnosis.

I started The Purple Jacket blog not to long after Richard  was diagnosed with cancer.  I remember the day the diagnoses came in quite well, “Mr. Schiffer has a massive growth where the esophagus and stomach attach” said the gastroenterologist.  After beating prostrate cancer, two cardiac by-pass surgeries, Richard looked at me and said, “I guess this will be something that will eventually take me.”  Richard was a realist, that was one of the many qualities I admired about him.

As I think about National Cancer Survivors day, I am reminded about the importance of caregivers sharing our stories with each other.  Writing the blog helped me and Richard cope with the diagnosis.  Our story in the Sun-Sentinel, In Sickness and In Health:  A Couples Final Journey  had a major impact on the importance of  sharing ones story.  I encourage everyone, as they feel comfortable, to share as much of their caregiving story as they possibility can. Sharing ones caregiving story, albeit it cancer, Alzheimer’s, or whatever health calamity you and your caree face, is a good antidote for any insidious  diagnosis, like cancer.

As we age and face different life challenges, we can look back on pictures to help tell the story of what we don’t see right before our eyes.   (2003 thru 2014 – click on the picture to see the year it was taken)

Pictures do tell a thousand stories.  What I did not see in January of 2014, was because I was looking at 2003.  The reality of a cancer diagnosis has a profound affect on everyone.  Sharing ones story has a profound affect too.  It reminds us that we are not alone in our caregiving journey.

I encourage you to share your caregiving story as you feel comfortable because cancer can never take away our love.  You see…”We Might Have Cancer, But Cancer Never Had Us”

Chris MacLellan is the author of “What’s The Deal With Caregiving?” and the host of Healing Ties radio program.

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Graduate: A Thesis Complete


An investment in knowledge pays the best interest. Benjamin Franklin

The road to Spokane has come to a happy ending with the completion and acceptance of my thesis entitled… Spiral of Silence:  Caregiving, Stress and its Impact in the Workplace.   

Originally proposed by German political scientist Elisabeth Noelle-Neumann in 1974, Spiral of Silence is the term meant to refer to the tendency of people to remain silent when they feel that their views are in opposition to the majority view on a subject.  My theory suggested that working family caregivers, fearful of losing their job, do not self-identify at work because they feel that they are in the minority.  I am happy to report that 75% of the respondents who indicated that they did self-identify at work found some form of relief.  However, 25% of the respondents who did not self-identify at work as a family caregiver, were fearful of losing their job or that self-identifying would be of no help to them.  I am very grateful to Denise Brown from Caregiving.com for allowing me to take part in Caregiving.com yearly working family caregiving survey.  Please feel free to reach out to Denise Brown at denise@caregiving.com if you have any further questions about the working family caregiving survey and how you might get a copy.

Of course there is much more to the thesis; we have more work to do to bring awareness to the epidemic of stress that working family caregivers face on a daily basis.

It is difficult to find the words to describe the feeling of earning a Master’s Degree GU_logoin Leadership and Communication from Gonzaga University. I love the Jesuit tradition and the spirit of Gonzaga. Professor Michael Hazel has been terrific throughout the entire process, as have all of the staff at the University. I will always remember Dr. Hazel’s sage advice at the beginning of the thesis in January, when my goals were bigger than the time frame, “The best thesis is a completed thesis.”  Michael Hazel knows his “stuff!” It is a good feeling to have the thesis completed, an even better feeling to now be an alumnus of Gonzaga.  It is nice to know there are life-long friends in Spokane, WA.

11410888-smooth-road-ahead-good-times-recovery-yellow-street-sign-1is84y6I am getting ready to embark on a new road, (one that is not virtual as was my road to Spokane); I look ahead with anticipation and excitement because I am creating a life to love after caregiving ends through writing, radio, travel and advocacy.

Leave your limiting self-doubts behind and go and grab the life you have always dreamed.

That is my new road to follow!

Chris MacLellan is the author of “What’s The Deal with Caregiving” and the executive producer and host of “Healing Ties” radio show  and a alumni of Gonzaga University!

 

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It’s All About Forgiveness


To understand is to forgive, even oneself. Alexander Chase

The road to Spokane is in its final stages as there are only two chapters left to write for my thesis “Caregiving, Stress and its Impact in the Work Place.”   I owe a big thanks to Denise Brown from Caregiving.com for helping me gather statistics for the thesis.   I had two hypothesis to prove in my thesis, so far the data tells me that I was able to prove one of them.  I will be sure to reveal the results of the study in May after the thesis has been approved and submitted.

20160323_081923.jpgWhile attending the American Society on Aging Conference in Washington, D.C., I was struck by not only the information that delivered at the conference, but the commitment of the professionals in attendance.  Another added benefit was the chance to connect with quite a number of social networking friends, people who I have collaborated with of the years online, yet have never had the opportunity to meet in person.  I was fortunate to be able to attend this event.

Something hit me square in the eye while in Washington, D.C. that is difficult to explain, but quite profound.   During one of our discussions at the conference, I suggested to the group that there is plenty of information for caregivers and those who are in the  aging profession, but I did not see much information on life after caregiving ends.  (A few eyebrows where raised when I made this point!) Yes, there is an estimated 43 million family caregivers today in the United States, but what happens to caregivers when caregiving ends?   Do family caregivers just go back to  daily life without recognizing, or better yet, dealing with the dramatic change in life when caregiving ends?

I had to look inside my heart for that answer.  And for me, that answer centered around forgiveness.

In order to fully grasps and move on with life after caregiving,  I had to first forgive myself, forgive myself for moving on with my life.  Seems strange after all most two years past Richard’s life transition, but yes, life after caregiving has to include a bit of self-forgiveness.   I then had to  forgive myself for the bad decisions I made during and especially after caregiving ended.  I had to forgive myself for not taking better care of myself both physically , emotionally, spiritually and financially.  But most of all, I had to forgive myself for being afraid to continue on with my life after caregiving ended.

HealingProjectYou see, caregiving was just a small portion of our life together.  Time wise, eleven years together, pales in comparison in relation to the six months of intensive caregiving that transpired in our relationship.  However those six months of intensive caregiving takes a relationship to new heights, new destinations and at least in our case, a deeper love and commitment that is impossible to replace.  I marvel, and often wonder about couples who have been together 30, 40, 50 years then suddenly find themselves in the role of a family caregiver.

Our time in caregiving ends: Our time in love is endless. 

For me, life after caregiving is about learning to forgive myself. When I came to the realization that I had to first forgive myself in order to fully move on with my life, a little bright light went on in my head, (thanks to a wonderful conversation with my friend Sam Chalfant) allowing me to understand and accept, that living in the past does not help the present, nor the future: living in the past puts life on hold.

Just like our caregiving journeys are different, so will our journeys be different when caregiving ends.  Sharing our stories after caregiving ends is just as important as it was while in the midst of caregiving.  Because in the end, somewhere along the line, forgiveness, in some form or another, will be part of the healing formula for each one of us to experience, so that we can fully embrace our life once again after caregiving ends.  Sharing is caring… before, during and after our caregiving experience, so  that our hills are light, and with a gentle breeze always at our backs.

Chris MacLellan is the host of “Healing Ties” radio program and the author of “What’s The Deal With Caregiving?”

The road to Spokane is my virtual story leading up to graduation from Gonzaga University

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Two Years Past


Love is composed of a single soul inhabiting two bodies. Aristotle

We are taking a break from the thesis project today to remember a significant day in our life. For as long as I live, I know March 9th is going to come around every year.  Significant in the sense that I will always remember March 9th as being the day that Richard made his life transition.  Together as one, our lives changed forever on that day in 2014.

Sure, the pain of losing him has gotten softer, but that doesn’t mean that I don’t miss him quite a bit.  The love we shared is still strong.   I did not want the day to go unnoticed, nor do I want to belabor the point either.   Finding that gentle balance when you lose the love of your life takes time.  Getting over it, means something different to each one of us.  We don’t really get over it, we adjust to it and move on as best we can. The love we shared is still strong in my heart and always present in my life.

I’m not sure what I will do when March 9th rolls around next year, but what I do know for sure is that my faith tells me that I will see him again, my mind tells me that he is forever pain free and my heart tells me that he is standing right behind me.

Enjoy some of our favorite photo’s from our eleven years together.

  Never miss out on a chance to tell that special person in your life that you love them!

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A review of Still Alice: Watching a Loved One With Alzheimer’s


We welcome back guest blogger Maria Alice with her review of Still Alice: Watching a Loved One With Alzheimer’s

Alzheimer’s disease is an illness that affects its victim at the core of their being. Memory and different mental functions are compromised in those who develop the disease, and ultimately it changes them in profound ways. The award-winning film, Still Alice, centers on the hardships that come with early onset Alzheimer’s and how they affect the victim and the people that surround them. In Still Alice, family, friends, and caregivers experience life with a loved one who, one day, may or may not even remember who they are.

Alice Howland, played by Julianne Moore in an Oscar-worthy performance, is a linguistics professor – a true creature of words, ideas, and thoughts. After Alice encounters a period of memory loss and confusion, she is diagnosed with early onset Alzheimer’s disease. We follow her life as the disease gets worse and those around her start to become frustrated and lose hope. Still Alice shows the uglier and more difficult stages of Alzheimer’s as a person with it goes through stages of memory loss and personal deterioration. As the disease progresses, it begins to rob the victim of their dignity. Alice quickly loses the ability to perform daily functions and maintain personal responsibility and safety. Still Alice, still available on DTV and Google Play, vividly illustrates how one person can lose their former selves inside their mind and how their body can become a mere shell of who they once were.

In a common real world situation, Alice’s family becomes her caregivers. Her husband John (Alec Baldwin), her daughters Anna (Kate Bosworth) and Lydia (Kristen Stewart), and her son Tom (Hunter Parrish) all deal differently with the diagnosis of their loved one. The family accepts Alice’s condition in ways that reflect their situations and their levels of fear and insecurity about this genetic condition. The fact that they must react to her condition both as a loving family, caregivers and potential carriers of the trait adds a distinct layer of tension to the plot.

Directors Richard Glatzer and Wash Westmoreland portray the disease and its path of deterioration with precision and empathy for all concerned. There are days when Alice seems like she’s who she was before the diagnosis and days when she cannot find herself. Repeated imagery of waves on the shore captures the incisive feeling about the nature of the disease – a thing that comes in waves with no two quite the same but with the same impact. However, it is the human resolution that stands. Alice learns to live in the moment and savor life.

Still Alice describes a painful descent from a lofty, comfortable, and productive life to one of searching for a most basic connection to the self. Alzheimer’s is a disease that robs one of past, present and future by breaking the connections with life events, time, and people. With effective use of imagery, photographic effects, and themes, Still Alice creates moods and very relatable scenes of the descent from high-powered professional existence. It follows a person who must struggle to overcome confusion in the simplest tasks and disconnection from the lives that matter so much.

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March 5, 2016 · 10:00 am

Employer Caregiving Survey


Management is doing things right; leadership is doing the right things.  Peter Drucker

The road to Spokane moves on with our second and final survey, this one is for employers.   Last week we started to gather data from working family caregivers in conjunction with my good friend, Denise Brown from Caregiving.com.  Denise and I are teaming up again to gather data from organizations who have family caregivers as an employee.

I wrote about my experience as a working family caregiver extensively in Chapter 5 of my book, “What’s The Deal With Caregiving?” and understand the difficulties from both the employee and employer side of the issue.  During my family caregiving experience, I was fortunate to work for Mark Ketcham at SunServe Social Services who understood the special needs of being a family caregiver.   Not every working family caregiver is that fortunate.

If you are an employer at any level in your organization, I encourage you to take this survey. The survey is 100% anonymous and will probably will take no more than 10 minutes to complete. We will share the results of the survey once my thesis is completed in May.

Here is the link to the Employer Family Caregiver Survey https://www.surveymonkey.com/r/CNKRKND

Chris MacLellan is an MA candidate at Gonzaga University studying Leadership and Communication and is the author of “What’s The Deal with Caregiving?” and the host of “Healing Ties” radio program.

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Bedtime dreams on a Thesis


We are made wise not by the recollection of our past, but by the responsibility for our future. George Bernard Shaw

The road to Spokane has gotten a little bumpy (no I did not get a virtual ticket) the last couple of nights, but thankfully, I was able to submit chapter 3 this weekend, albeit a few days late; I hope Dr. Hazel does not mind! (I already am sensing a short rewrite)  Now we are in the process of gathering data from our working family caregivers survey and next week, we will start gathering data from employers through a second survey.   If you have not taken the working family caregiving survey, there is still plenty of time to do so.  Here is the link to the survey: https://www.surveymonkey.com/r/workcare2016

Approaching two years since Richard’s passing and six months since my book “What’s The Deal With Caregiving?” was published, this past week has been an emotional roller coaster.  In an earlier post, I wrote about getting beyond compassion fatigue, and I have also written about the different levels of grief that I have experience since Richard made his life transition. However, what I did not anticipate while working on the survey and thesis project is the diverse reflections and intense emotions about Richard and our Caregiving experience .

Since Richard made his life transition, I have have had very few dreams about him.  A few weeks ago, I wrote a blog post entitled Symbolism In Communication  where I wrote about receiving a text message from Richard’s old telephone which has been turned off for almost two years.  Now, this week, while working on this thesis project, I have had two very vivid dreams, back to back, about Richard.  In the first dream, we were at the hospice unit, the second dream is difficult to describe, but intense.  I woke up with a massive headache the morning after the second dream.

wp-1455801922917.jpgWhile I do not attempt to psychoanalyze these dreams, it has made me stop and think about my role as a family caregiver and my life after caregiving has ended.  I know in my heart and my mind that I did all I could for Richard and no matter what I think I could have done differently, nothing was going to change Richard’s destiny as the cancer had spread throughout his body.   However, the knowledge of knowing and accepting that I did all I could for him, does not change the fact of how much I miss him.

I continue to believe that it is important for family caregivers to share their story as they feel comfortable.  Every family caregiver learns something when another caregiver’s story is told.  Yet when is it time to move on?  I guess I am asking myself that question now.   Caregiving is an intense experience, life after caregiving can be just as intense, but different.   

During the intensity of the daily grind of being a family caregiver, there are times when we think we are weak when in essence, we are quite strong.  The dreams of the past week reminds me that it’s okay to be vulnerable as it will only make me stronger as I get continue to adjust to life, now that caregiving has ended.

The Road To Spokane is my virtual story on the way to graduation from Gonzaga University in Spokane Washington

Chris MacLellan is the host of Healing Ties Radio show and the author of “What’s The Deal With Caregiving?”

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