Category Archives: caregiver

“He’s My Miracle Patient!”


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“He’s MY Miracle Patient”  Dr. Milica Starcevic April 1, 2013

Today as we visited Richard’s primary care physician for his quarterly check-up. This is no April Fools joke, reality before our eyes, a miracle in the works!  BRS2

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BRS2

After reviewing all the blood work, checking in on recent history with his health, then receiving updates from both of us she just uttered these words:

“He Is My Miracle Patient!”

Given 3 to 4 months to live in October of 2011; In August of this year we will ‘celebrate’ 2 years since the original diagnosis of esophagus  cancer.  Like many families who go through a cancer diagnoses, we were filled with so many diverse emotions.  Now two years past, we are thankful for each and every day we spend together.  Sure some days are better than others, and the esophagus does ‘act-up’ from time to time; the tumor does have a mind of its own!

Being a family caregiver comes with quite a bit of sacrifice and courage, and just like ‘The Little One”, I have my good days and I have my bad days.  Sleepless nights, worrying about things that I cannot control and wondering what’s going to happen next.  It’s all part of the role of being a family caregiver. 

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Yet on a day like today, being a family caregiver is put into perspective  when Dr. Starcevic turned to me and said “thank you  for being a Caregiver.”  Those long nights, followed by those uncertain  days were a thing of the past by those simple words uttered by Dr. Starcevic!  Of course, a big smile from ‘The Little One Helped, too!

You see…We Might Have Cancer,

But Cancer Does Not Have Us!

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Caregiving and Those Silly Hats


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I will be the first to admit that I have hit a dry spell recently in my writing.  When chatting with other bloggers about this, I have learned that hitting a dry spell, or ‘The Wall’ as it has been described to me, is not uncommon.  When you are a working family caregiver, there is often this tug of war between what you want to do,  versus what you have time to do, coupled with the fact of what you have to do.   No matter what role you might have in life, finding that  balancing act is always a challenge.

A great example of finding that balancing act in life happened this past weekend at a fundraising event for work.   While I always like to include ‘The Little One’ in on as many events that he feels up to attend, this past weekend I was quite surprised when we both went ‘all in’ at SunServe’s Garden and Hat party.  Creating crazy looking bonnets is not something that we do on a regular basis, yet we had a great time together shopping, creating and wearing ‘those’  hats on Sunday.

The Mad HattersWhile we did not win the crazy hat contest,  the weekend event reminded me that bonding over something that is fun is essential  for both of us.  If you’re a caregiver like me, I am sure you get caught up in the daily routine of making sure everything is prefect for your caree.

The past few months, ‘The Little One’ has been blessed with more good days than bad,  for which we are both grateful. Yet to  ‘Be A Healthy Caregiver’ it is essential to find those times when we can take our mind off of things that we cannot control (cancer), and have fun with something that we can control (crazy hats).  Letting go of control can be hard, yet in those bonding moments, there is a sense of freedom that for a moment, helps take all our worries away.  Come to think about it…having one less worry  in our day, helps us us find that elusive balance in our lives that we so constantly strive to achieve.

  We Might Have Cancer…

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But Cancer Does Not Have US!

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End Of Life Wishes: Sometimes You Just Have To Ask.


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The Purple Jackety Highly recommends Caregiving.com

The Purple Jacket Highly recommends Caregiving.com

On Saturday,  Richard and I were guest on ‘Your Caregiving Journey’ hosted by Denise Brown from Caregiving.com You can listen to the show by simply clicking here. 

Our conversation today came out of a discussion that Denise and I had a couple of weeks ago about a decision I made to withhold information from Richard after he completed his radiation and chemotherapy treatments where the oncologist estimated that he had 3 to 4 months to live.    We also talked about a variety of other  end of life topics that are often difficult to discuss, yet important to get out in the open.

Having a discussion with your partner or caree on such a sensitive topic can be difficult, but so essential in order to Be A Healthy Caregiver. 

During our discussion, Richard spoke about his desires when his pain becomes too great, 20111225-083619.jpgdescribed what a good day feels like and shared what he whats from me as his partner and caregiver on a daily basis. Sometimes it is a simple as…’When something is wrong with me, you will be the first to know, until then, just let me be!

Denise and I talked about the challenge of letting go of my own beliefs and emotions when it comes to Richard’s  wishes.  As I mentioned on the show, Richard and I come for different faith traditions which has  different perspectives and philosophies when it comes to end of life hands touchgindecisions. However as his partner and his caregiver, it is essential for me to put aside my own personal beliefs so that I can honor what Richard wants.

As Caregivers and life partners, we often forget that we are not the ones who are sick.  While we share in our care and concern for each other, when it comes to these critical issues, it is important to follow the wishes of the one who is ill.

End of life discussions are never easy to have.  Richard and I have both buried our partners and while we both have previous experience in this subject, it does not make it any easier. We just know that we have to have this discussion.

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Herman & Richard 1990′s

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Richard & Chris late 1980′s

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Richard & Chris 2012

Find a way to have that end-of-life discussion…

Below are some great example of how to start this conversation along with some great questions to to get the conversation going provided by Denise Brown at Caregiving.com

“If you feel uncomfortable, simply say, “I’m uncomfortable with what I’m about to ask, but I’ve been giving some thought to your last months. I want to make sure I understand what you what and need. Would you be up to having a discussion?” And then go from there. The discussion is a process which means you might continue the conversation over several days and weeks and month. And, as your caree’s health changes, you’ll want to revisit the discussion to ensure your caree’s wishes haven’t changed.”

These questions can help during your discussion:

1. How do you want to spend your last months and weeks and days?

2. What do you want from me during your last months?

3. What’s a good day like for you? (This is a good question to ask regularly as the definition of a “good day” will change.)

4. Do you have any unfinished business you’d like to finish?

5. How do you feel about dying? What do you think happens after we die?

If you haven’t visited Denise Brown at Caregiving.com now is the time to do so.  Richard and I consider Denise and all the members of Caregiving.com as our extended family.   Denise is a true leader in the Caregiving community.

Remember…We Might Have Cancer…

img_19122012_204936But Cancer Does Not Have US!

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Filed under advocacy, Advocate, Be A Healthy Caregiver, cancer treatments, caregiver, Caregiving, Esophagus Cancer

‘Be A Healthy Caregiver’ on Blog Talk Radio


On Tuesday, January 22nd we welcome Mandy Harrell from Wearvever* USA to our ‘Be A Healthy Caregiver’ show on Blog Talk Radio.  The Wearever* Brand offers comfortable, quality, affordable and stylish apparel solutions for everyday health and wellness concerns.  You can access the show live or at your convenience (after Tuesday at 1:30pm) by clicking here

The men’s and women’s line of washable, reusable urinary incontinence panties and briefs is especially beneficial for active people who want to continue their normal lifestyles without worry or emotional stress resulting from urinary incontinence.  Additionally, Wearever* offers incontinence bedding products as well as Buster Brown socks.

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As the Brand Manager for Wearever* USA, Mandy will provide us with some helpful tips and talk about their great products as Wearever USA helps us to ‘Be A Healthy Caregiver!’ 

To learn more about Wearever* USA, you can visit their website by simply clicking here.

Our show is available live or archived online for your convenience.

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To access all our ‘Be A Healthy Caregiver’ episodes on

blogtalkradiologo Simply click here

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The Perfect Sunset


We Don’t Have Secrets: Secrets Have Us!

‘The Little One’

Many of you who have followed ‘The Purple Jacket’ over the past year or so know that ‘The Purple Jacket’ is a heartfelt account of my Caregiving experience with my partner Richard Schiffer, otherwise known as ‘The Little One’. Diagnosed with esophagus cancer in August of 2011, Richard was given 3 to 4 months to live upon the completion of his chemotherapy and radiation treatments in October of 2011. Now fourteen months past that prediction, ‘TLO’ continues to amaze everyone who has been

The Purple Jackety Highly recommends Caregiving.com

The Purple Jackety Highly recommends Caregiving.com

involved in his care. My readers on both ‘The Purple Jacket’ and my extended Caregiving family at Caregiving.com know that we relish each day, and are thankful for the extended stay that we have been granted. We have truly been blessed!

When I started ‘The Purple Jacket’ on my 54th birthday in February 2011, my goal was to talk about my Caregiving experience with my good friend, Fr. Richard Orlando. I started this blog long before ‘TLO’s’ diagnosis, yet this blog has proved to be cathartic, as I have been able to express my feelings and share my emotions in a much more vibrant way than my previous Caregiving experience with Father Orlando.

My very first post in February 2011 can be read in its entirety by clicking here. Here is a snippet of my first post…

The Purple Jacket” signifies a time in my life that was… And still is…”a life changing event.” We have all had life changing events. Those events often forged from a life crisis are the types of events that fundamentally change our outlook on life and cause us to pause and reflect on our true values. At the time, these life changing events are or can be extremely traumatic. However, these events test our values and often have a cathartic or cleansing effect whereby we emerge from these events stronger and more focused on our values.

Circa 1988

First Picture taken in May 1988

My life changing event occurred when we made the decision to live out the rest of his life in our condo in Fort Lauderdale, Florida. This was by no means an easy decision as his health in his later years was strife with diabetes, congestive heart failure and the final straw, a broken hip in March of 2002 that shattered his self confidence. I remember the call vividly while in my room at the seminary in Milwaukee that year; ‘I fell and broke my hip, I can’t believe it.’ That was the beginning of the spiral that finally led to us picking up stakes and moving full-time to Florida in July of 2004. My life really has not been the same since.

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Last picture taken in October 2005

The 18 months of Caregiving were not without its challenges. The minute we stepped off the plane in Fort Lauderdale we had to head to the hospital as the catheter that was installed upon leaving the nursing home in Rochester was implanted incorrectly. But that experience was a godsend as we ended up connecting with a group of physicians who were excellent and cared for him during our 18 months in Florida. Even in the midst of strife, God was on our side.563334_459536700731852_538508211_n

Father Orlando was a brilliant man, yet often misunderstood. His vocabulary was legendary, just as his sarcasm. As I said in my eulogy at his funeral mass’ ‘He never had an opinion of his own that he dislike, yet he had unassailable logic. He hated fakery and phoniness; one always knew where they stood with him. He did not know how to beat around the bush; being direct was an art.’ He would have never had been mistaken for Father O’Malley in the bells of St. Mary’s, yet over his 59 years of ministry he had more positive effect on people than he ever understood.

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Helen and Sonia at the Day Care Center June 2005

While in Florida, Fr. Orlando was able live a life that was non restrictive. In Rochester, he sat in his room and rarely went out. He coined the facility ‘Prison.’ Like many seniors who are not given a choice on where they want to live as they age, invariably they will learn to resent the environment, no matter how posh the facility might be.

In Florida he was involved in an Adult Day Care Center and was intellectually challenged on a regular basis. He instantly became a leader at the Day Care Center and looked forward to going when he felt up to it. He even celebrated his 58th ordination anniversary while participating at the Adult Day Care Center. But most of all, he was able to live in his own home. One of his life long dreams was to live full-time in Florida. Facilitating his wish was like providing him with extra time for his life.

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Amazingly we even got him in our pool at our condo with a little help from our friends. “I never thought I ever do this again” he said while he was in the pool’

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Over the 18 years of our friendship he had had two previous near death experiences. We both knew that our trip to Florida would be the last time that he would ever travel. As his primary care physician said to me during our last visit in Rochester, ‘ You know he is never going to get any better, he might as well enjoy himself where he wants to enjoy himself.’

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The 18 months caring for him was difficult, meaningful and certainly, beautiful. As secretive as everything had been for years, knowing that I helped facilitate a beautiful sunset to his life, does allow me some consolation.

With his kidneys failing early afternoon on Wednesday January 25 2006, Father Orlando made his peaceful transition at 1:15am on Friday January 27, 2006. Once his kidneys failed, I never got a chance to talk to him again as the doctors administrated morphine to ease any pain. Yet late that afternoon while holding his hand, he rubbed my hand with his thumb three times and squeezed my hand. That was the last communication I had with him before he made his transition. Holding him while he took his last breath, his transition was peaceful. I knew he was going to a better place.

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I can still feel him touching my hand today.

On Saturday Morning December 22nd, I will talk publicly for the first time about my Caregiving experience with Father Orlando with Denise Brown from Caregiving.com on her Blog Talk Radio Show, ‘Table Talk.’ The show airs at 10:00 am (EST). I look forward to talking with Denise about how this Caregiving experience and his death has affected my life. Why is this a big deal, because there is no time left for secrets, only beautiful sunsets!

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The Perfect Sunset is the start of a long-awaited healing process: thank you for being a part of this journey, we’ve only just touched the surface.

Remember: We Might Have Cancer…But Cancer Does Not Have Us!

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‘Be A Healthy Caregiver’ on Blog Talk Radio Every Tuesday at 1:00pm


Blog Talk RadioJoin us this Tuesday, December 18th at 1:00pm for ‘Be A Healthy Caregiver’ on Blog Talk Radio with our special guest, acclaimed Caregiving author,  Rob Harris.   You can listen live on Tuesday or at a time that is convenient for you by simply clicking here 

Rob’s book, We’re In This Together: A Caregiver’s Story and the 70 Caregiving Tips that he included, has been a #1 Amazon.com bestseller in the Physicians & Patient Caregiver category. Celebrities, the media, and some of the leading oncologists, surgeons and doctors in the United States and abroad have praised it. Excerpts of his book, along with many of his Caregiver Tips will soon appear in one of the nation’s leading magazines and websites: Coping With Cancer.

robharrismuralHis book has inspired many, including two songwriters that produced a song and had it recorded by an up-and-coming recording artist. The song, We’re In This Together, will be made available in the near future.

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Rob enjoys writing, blogging, and speaking in front of audiences, but gets the most pleasure from helping caregivers, patients, and those within the medical community. In whatever free time remains, he enjoys visiting with family, friends, and spending time at the beach.

If you would like to be a guest on ‘Be A Healthy Caregiver’ contact me direct at Chris@thepurplejacket.com

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Every Day: Set An Intention For Yourself.


‘Be A Healthy Caregiver’ on Blog Talk Radio 

On Tuesday’s ‘Be A Healthy Caregiver’ Blog Talk Radio Show, my special guest was David Levison from ‘Get2BFit’ in Fort newlogoLauderdale, Fl.  David and I talked at great length about the importance of getting into a routine the centers around our personal health and well-being, along the importance of having a good body image.     Yet one of the comments from David that stood out the most was simply this:  Every day:  set an intention for yourself.

As caregivers, we often take a back seat and never ‘set and intention’ for ourselves: I think David is on to something sunset_yoga_girlshere!    Often time as caregivers, our intentions are completely focused on our Caree.  To set an intention for ourselves seems scary, but…it is the right thing to do.  Setting an intention keeps us on track, allows us to focus on our needs, while making us better caregivers, too!

To listen to ‘Be A Healthy Caregiver’ featuring Chris MacLellan ‘The Bow Tie Guy’ and ACSM Certified  Trainer,  blogtalkradiologoDavid Levison on ‘Be A Healthy simply click here

Join us every Tuesday at 1:00 pm (est) for ‘Be A Healthy Caregiver’ on Blog Talk Radio.   Upcoming Guests:

December 11th:  David Treece from Treece Financial Group 

December 18th:  Author and Caregiver Rob Harris from Rob Care

If you are interested in being a guest on ‘Be A Healthy Caregiver’ please email me at Chris@thepurplejacket.com

If you cannot join us live, you can listen to this show, or  any of our earlier episodes of ‘Be A Healthy Caregiver’ by simply by clicking here

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Remember…We Might Have Cacner...But Cancer Does Not Have us!

 

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What Is The Best Thing For Me, The Caregiver?


TLO The Original Blueberry Pancake

TLO The Original Blueberry Pancake

While making Blueberry Pancakes  recently for ‘The Little One,’ I was reminded of a blog post that I wrote last year right after he completed his round of radiation and chemotherapy treatments.  I wrote this post titled ‘The Tumor Extractor’ for just $19.99!   This is one of my very first blog post  (which is copied below)  where I  reflected on how  hope, love, support and care are the real tumor extractors as well as how humor can play an important role in the recovery process, too.  Now more than one year past the original post,  I took a second look at was written and  I am  amazed at what (still) applies today.  Now I take it one step further, as caregivers, we need to apply these same feelings and emotions to ourselves too!  I have to look myself square in the eye on this one!

Dr. Starcevic with 'The Little One'

Dr. Starcevic with ‘The Little One’

Many of the decisions that we made over the past year or so have been centered around what was best for ‘TLO.’  As Caregivers, we know that decisions are often based on what is best for the Caree and for the most part, we’re OK with it. Yet how often do we as Caregivers say…’What is the best thing for me, the Caregiver? 

It is easy to get lost in the  Caregiving experience and lose sight of self.  I’ve been there!  Trying to regroup in the midst of Caregiving and express  my own needs is by no means an easy task.  For me, expressing my own needs can be scary, well…actually it is scary.  Is it a sign of weakness, or failure or the messiah complex.  Or am I just a rut?   The bottom line is simple, when you put someone else’s needs ahead of your own, you lose sight of self.   It happens before you know it.  The signs are obvious to everyone, yet camouflage to self.

These are some of the critical signs that caregivers need to be aware of  in relation to our own health and well-being. 

I get a gold star: I score high on all five traits!  

Photo Credit: Dr. Wayne Dyer

Photo Credit: Dr. Wayne Dyer

I have been conscious of these issues for quite some time, yet have been immobilized to act on it.   I don’t know why, I just know that it has happened. Over the past number of weeks, ‘TLO’ has been asking me to make an appointment to see my doctor.   “You need to take better care of yourself,’ he demanded!   He has recognized ‘the signs’, inspired me to do something about it,  and finally I acted on it.

The trip to the doctor’s office was not without anxiety.  I had not seen Dr. Scalia since I left Fort Lauderdale in 2007 and much has changed since then. Going in, I knew he would ‘get-it’ as  Dr. Scalia was on the team of Doctors who took care of Father Orlando, so there was immediate comfort and recognition.

Healthy Living is for everyone!

Healthy Living is for everyone!

Yet at the same time, there was quite a bit of reflection on Father Orlando as Dr. Scalia was the attending physician leading up to his transition in 2006.    When he entered the room, I was greeted with a warm smile…There was no need to hold back, he could see the expression on my face.   We talked openly and honestly; it felt great to have someone totally focused on my needs.   He did the battery of tests; EKG was normal, blood pressure normal: the blood work results and follow-up will be later in December.   All the same concerns that I demonstrate for ‘TLO’ are the same concerns that both Dr. Scalia and ‘TLO’ expressed for me.  That’s not a bad thing!

‘To Be A Healthy Caregiver’  does not mean just taking care of your Caree, it caregivinglogomeans taking care of yourself, too.  I’ve taken the first steps and now need to follow through with a Care Plan for myself.  The best  Care Plan available to me is through Caregiving.com.   Denise Brown from Carigiving.com offers a care plan that  focuses on WELL:

Wisdom comes from being attentive, grateful and curious.

Energy comes from my food, my exercise and my physical, mental, spiritual and emotional breaks.

Laughter comes from within myself, from my relationships and from my entertainment.

Love comes from within myself, from my relationships and from my passions,

However, the best care plan will be for not if you don’t use it!

  • I encourage you to visit’s Caregiving.com by simply clicking here to…lots of great information…lots of great people too!

I often forget that my biggest supporter is the one who I care for because he knows me better than anyone else.  By going to the doctor and implementing my care plan through Caregiving.com , I can take better care of myself.  Not every day is a ‘Blueberry Pancake’ Day.  Caring for someone who has a chronic illness is not for the faint of heart.  As caregivers, caring-for-caregiverit is essential that we to  apply  Love, Hope, Support and Care in relation to our needs too.  

If I am going to be a provider of  Love, Hope, Support and Care… Shouldn’t I be a receiver too?  Yet in order to receive, you have to be open and recognize your own personal needs.   For me, looking internally and owning my own feelings and emotions,  then expressing those emotions and feelings will not only make me healthier, it will make be a better caregiver, too!

Below is my post from November 6th, 2011…Thanks for reading it again!

We have all seen those gadgets that they sell on TV… It seems that all those gadgets sell for just $19.99 and better yet, all these gadgets are a must need for every household! As I was preparing waffles for breakfast this morning I came across a new product called ‘The Tumor Extractor’

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‘The Tumor Extractor’

Simply apply to the area of the tumor and all your troubles will be gone!

‘The Little One’ and I enjoyed a great laugh when I presented him with our new ‘Tumor Extractor’ and just think…we only spent $10,000 on chemo and radiation and could have had this gadget for $19.99! (Of course Monty Python’s Spamalot is playing in the background.) Every cancer patient and caregiver wishes there was something as quick and simple as ‘The Tumor Extractor’ to remove cancer from the body. But what is available to every cancer patient and caregiver is hope, love, support and humor. That is the true Cancer Extractor! While each one of us deals with the reality of cancer in a different way, we want to look on the bright side of life! Yesterday is gone, today is here, not sure about tomorrow. Today we are enjoying our new ‘Tumor Extractor’ even if it will only help us make waffles. It is our hope that lets us withstand stand problems…but it is our beliefs that lets us find solutions.   And remember… ‘Always look on the bright side of life!’

You See…We Might Have Cancer…But Cancer Does Not Have Us! 
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‘Be A Healthy Caregiver’ on Blog Talk Radio


On Tuesday’s   ‘Be A Healthy Caregiver’ show our special guest are Attorney’s Ryan Shaughnessy and Michelle Silies who practice law in St. Louis, MO.  Our discussion will center around the importance of having your legal documents in order, before a crisis happens.    Join us at 1:00 pm (est) for another episode of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  Not able to listen to the show live, that’s OK…You can listen to the show at anytime after 1:00pm (est) by clicking here. 

 

 

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‘Be A Healthy Caregiver’ on Blog Talk Radio


On Tuesday’s ‘Be A Healthy Caregiver’ show, we had a wonderful conversation with Fr. J. Lawrence Richardt from the Archdiocese of Indianapolis where we discussed how Spirituality can play a role in being a healthy caregiver.   Approaching his 50th anniversary of his ordination, Fr. Larry has been a caregiver for his mother for the past seven years in Indiana.

During our conversation we talked about:

  • How being present to others is important in ministry and in Caregiving…
  • The importance of being anchored to a larger world outside of Caregiving…
  • How Scripture and Spiritual Direction helps keep me  (us) honest…
  • How we laugh and find beauty during those dog days of caregiving…

To listen to our conversation on Blog Talk Radio, please click here.

 

Join us next Tuesday at 1:00pm (est)for another episode of ‘Be A Healthy Caregiver’ on Blog Talk Radio for a discussion with Attorney’s Ryan Shaughnessy and Michelle Silies as we discuss the importance of having your legal documents in order.  For the link to next week show you can click here

 

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