Category Archives: caregiver

Happy Thanks CareGiving


Feeling Gratitude and Not Expressing it is Like Wrapping  a Present and Not Giving it! – William Asher Ward

Thanksgiving comes around once a year, but giving thanks and showing gratitude is a daily practice that I want to create in my life. 

I am thankful for 11 wonderful years with Richard and as I think about the past 18 month since he made his life transition,  I am reminded about not taking life so seriously while learning to live life in the moment.  Yesterday is gone, tomorrow has not arrived, what is important is today.

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These last 18 months have been filled with lots of different challenges, many of which  have been self-afflicted.  But we move on with our head held high, knowing that bumpy roads do smooth out.

I don’t miss being a Caregiver, I miss the person I was caring for, because Caregiving is a two-way street.  When Caregiving ends, the realization that what once was, is now different, is obvious.  However, what I have come to know, now that Caregiving is over, the good days far out weigh the bad days and memories last forever.

So Happy Thanks-Caregiving to you, not only on this special day of thanks, but for everyday, in gratitude for all that you do!

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

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Advocacy Heals U: Healing Ties of Change


Recently I had the opportunity to be a guest on Joni Aldrich show, “Advocacy Heals U”, which is now featured on iHeart Radio.  Joni is an accomplished author, radio show host, public speaker, but most importantly, Joni has been a caregiver for her husband, Gordon, who like Richard, passed away from Cancer.
22958786 Connecting with Joni has been a pleasure and sure proves that Caregivers, no matter what their journey might be, have this innate ability to understand each other, to be there for each other, to care for each other.  Joni has been that connection for me.   As Joni so eloquently wrote: “Love radiates through this show. Love of a partner for a partner through life, illness and difficult loss. “To love someone is to see the face of God.” Guest: Chris MacLellan, The Bow-Tie-Guy. Chris loved Richard Schiffer through the twists and turns of life and Richard’s end-of-life. Experience IS the most brutal of teachers. But you heal. Chris’s new show, Healing Ties, will discuss 4 aspects interwoven in hope: physical, mental, spiritual, financial. While his focus is on caregivers, the message is much deeper. Why are health care rights connected to marriage rights? In many states, gay couples do not have that option. Love can move mountains, but can it break down walls?”

To listen to our show, simply click here! 

To learn more about Joni Aldrich simply click here!

Approaching six months after Richard’s transition into eternal life, my life continues to transition.  I’ve made the decision to leave my job with Screen Shot 2014-08-21 at 2.30.41 PMSunServe Social Services and start to write our story through my own words.  I’ll be heading over to New Orléans to write, spend time healing and starting my new radio show, ‘Healing Ties’ from ‘The Bow Tie Guy.’  Stay tuned to ‘The Purple Jacket’ for the launch date of my new show which will be featured on W4HC.com and iheart Radio.

Remember:  “Love, Care and Commitment is the same for any two people, no matter what gender.”  Make your day count, never pass up the opportunity to tell your spouse or partner that you love them!

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It’s Never Too Late To Start Over


We may encounter many defeats, but we must not be defeated!~Maya Angelou

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I graduated from radiation treatments!

Our second bout of Cancer started to unfold when we were discharged from Imperial Point Medical Center in early October with the news that TLO’s cancer had entered his spine.   It was a somber drive home that warm Saturday afternoon knowing that three tumors were lurking on his spine;  the added ordeal of facing more radiation just exasperated the diagnosis. Those first few days home after the diagnosis  was quite difficult… For both of us.  I’m still not sure what was worse; the revelation of what was inside of him, or the anticipation of starting the rigorous treatments that were in front of us?

Caregivers know that through all the turmoil, we hope for a ray of light toHoldTight shine through our Caregiving day, to take the edge off so to speak.  Our ray of light happened this week as TLO completed his six weeks of radiation treatments.   Those six weeks were like riding a roller coaster, or maybe one of those amusement rides that spin you upside-down.  (I always hated the ones that went upside-down)  It is hard to get a handle on your day when your day is in constant motion.

Never too LateDuring these last six weeks, there has never been two days alike; Cancer kind of does that, we’ve learned! We wake up each day not knowing how the day will enfold; Cancer kind of does that, we’ve learned! We look back at these past six weeks and wonder, “how did we get through this mess;” Cancer kind of does that, we’ve learned! We really don’t know what lies ahead of us; Cancer kind of does that, We’ve learned!  It’s never too late to start your day over;  Cancer kind of does that, we’ve learned!

Completing radiation treatments is  significant because it allows us to start Certificate side (2)over again.  There are no more treatments, nothing else to do other than to let the healing process start!     Sure, there will be a follow-up  MRI and CT scan to see the results of the radiation.  However, we have no control over what those results will entail.  We can only control how we feel, and how we will deal with those results.  

There is no doubt that this round  radiation has taken its toll on TLO.  For him, dealing with going to radiation on a daily basis is more difficult than dealing with the fact that he has cancer.    I find that revelation difficult to understand, but so thought-provoking!  It’s important to remember that we are wearing different shoes on this journey.

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 As we move into a different phase of our journey, we continue to hope for a gentle breeze at our back.  We’ve done what we could do to combat the tumors, we’ve made the proper adjustments to our care team and we are thankful for the great staff at the South Florida Radiation Oncology in Coconut Creek and Emerald Elite Senior Home Health Care in Wilton Manors .  I’m grateful to the Executive Director at SunServe, Mark Ketcham and my colleagues at work for their support and understanding.  Our extended family at Caregiving.com, where would we be without you?

As a Caregiver, we often think that we can go at it alone, that we don’t need any help.   While we have the ability to start our day over, it makes it easier to start our Caregiving day over when we have passengers to help  guide us through the journey.  I’m thankful for our Care Team!

You see…We Might Have Cancer, But Cancer Does Not Have Us! 

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Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

 

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Happy Thanks-Caregiving


You must do things you think you cannot do.  Eleanor Roosevelt

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 We are Thankful for those who are Caregivers today:

We are Thankful for those who will be Caregivers tomorrow:

We are especially Thankful for those Caregivers whose journey has past. 

We share  in our Caregiving Journey in a special way, knowing that while our Caregiving roads might be different, our paths are filled with comfort and joy from the support we receive from each other!  

Thank You for being a part of our Caregiving Journey.  

From our Caregiving Journey to yoursHappy Thanks-Caregiving         

The Bow Tie Guys!

You see…We Might Have Cancer...But Cancer Does Not Have Us! 

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‘Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

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Positive Thoughts Helps Ease The Diagnosis


Today we had our second visit to the radiation oncologist to secure images on TLO’s spine in order to determine the course of action for the upcoming radiation treatments. We were so pleased by the experience we had today because of the care and concern showed to us by the technician who was taking the images.

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Luis was a class act today. He took the time to thoroughly explain to us the procedure, what to expect and when we would know of the results. He listened attentive to our questions and made us both feel at ease. But I think what set the positive tone off was the way he greeted us in the waiting room. He went right over to TLO, extended his hand and introduced himself, then turned to me with the same warm welcome!

His approach was truly an ice breaker!

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Luis’ style today was not only professional and friendly, it was therapeutic! His demeanor today completely put TLO at ease, which has lasted the rest of the day.

“I really feel good today” said TLO after dinner this evening. “Was my cooking that great tonight I asked?” “Don’t kid yourself” he said. “I really came away from our appointment today feeling good about the how I was treated and the whole environment of the office. Luis was so nice to me and listened, that does not always happen in these settings. I am so glad that we are going to this office for treatments, I feel safe, secure and appreciated!”

I agree with him 100%!

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As the night has progressed, TLO is resting comfortably and we are both at peace thanks to Luis’ excellent care today. We don’t look at the future as being bleak, we look at each day as a blessing to share with each other, to care for each other and to be open to the days ahead.

We’ve had our cries; we’ve had our frustration and now we just deal with the reality of what is in front of us. One simple act of kindness by Luis today help alleviate 10 days worth of fear and frustration. Our hats are off to Luis!

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You see… We might have cancer…but cancer does not have us!

 

 

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Cancer: That Unwelcomed Guest Has Returned


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Love Is Composed Of A Single Soul Inhabiting Two Bodies:  Aristotle 

Saturday’s revelation that ‘The Little Ones’ cancer has metastases to his spine was devastating.  Two years past his radiation and chemotherapy treatment for esophageal cancer, we are back facing this vicious disease.  ‘It’s’ been knocking on the door the last few weeks; it is difficult to acknowledge this unwelcome guest has returned with new vigor and new strength.

I am not sure I can accurately describe our emotions at this time.

Concerned for the past few weeks that the tumor was active again, Friday’s MRI and CT scan proved our suspicions true.  While the news is unwelcome, we are thankful that at least we know the source the pain and discomfort which will allow us to act accordingly.  Palliative radiation is a new term that I learned on Saturday; TLO will immediately start palliative radiation treatments to help relieve the serve pain that suddenly came upon him Thursday night.

Scary does not do his pain justice on Thursday night; nor how we feel right now.

Imploring the attending physicians at the hospital to consult with TLO’s primary care physician helped avoid an unnecessary cardiac catheterization procedure which would have been dangerous and certainly unnecessary.  The cardiologist was sure his issues were cardiac, ‘he has the classic symptoms and history of heart disease,” said the cardiologist.  ‘That may be true, but before we make any decisions on doing a cardiac catheterization, it is important that we first find out what is going on with the tumor; we are not doing any invasive procedures until we have the MRI and CT scan’, I suggested. The cardiologist was working out of his area of medicine and we respect that.  

The harsh reality of the news creates an immediate void to an unpredicted 1385583_607513719290066_905165614_n (1)future.  The last twenty-four hours back at the house has found both of us to be just a bit sad and depressed.  We both have to watch those emotions so that they do not permeate our decision-making process. Depression often plays such a strong role in how disease functions in the body.  While we are both cognizant of that, it comes down to mind over matter.  As I’ve said before…”It just ain’t easy!”

A whole set of new and intense emotions intrude on us right now.  Worry, detachment, mortality, anger, fear of abandonment and having to live life alone. These gut wrenching emotions lurk in our minds when faced with a life-and-relationship-altering illness.  Often times, you have to give up things that you lovein order to care for the one you love.

Over the past 24 hours, we have had the chance to talk openly about what lies ahead of us.  As we begin to accept the raw news that was delivered yesterday, TLO is insistent that we continue to advocate for those who have no one to advocate for them.  “What would have happened to me if I had gone ahead with the cardiac producer; what would have happened to me if I had no one to advocate for me,” TLO exclaimed!  We intend to be as open as possible with everyone as we move forward with treatments.

We will push ahead because life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our back. This gentle wind is always fortified by our love, our faith, our friends and our trust.

Thank You for being a part of this journey with us!

You see…we might have cancer, but cancer does not have us! 

TLOCJM

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Emergency Room


We’ve made a trip to the emergency room today as ‘The Little One’ experienced a bad spell of laborious breathing through the night and early this morning.

He has been fearful of this trip, but he insisted on coming to the emergency room this morning. The recent struggles with the esophagus and tumor has produced quite a bit of discomfort for him this week. Now a week into his steroid medication without any outward signs of relief; we are where we are supposed to be today.

As I (we) sit here waiting and worrying, our best source of comfort comes from our faith, our family, and our friends. For me, I find relief in writing.

We don’t know what is ahead of us today, but in essence, do any of us? Sure our schedules are filled with appointments, telephone calls and meetings. But all those things can wait because when you get right down to it, there is nothing more important in life than being present to the one you love.

Today we are going to try to be as calm as an ocean breeze!

You see… we might have cancer, but cancer does not have us!

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“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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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!

Listen to:

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Access all our shows by clicking here!

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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