Tag Archives: The Bow-Tie-Guy

February 13, 2014 · 3:09 pm

Coffee With A Caregiver

Coffee shared with our Caregiving family is happiness tasted and time well spent.

#CoffeeWithACaregiver

Thursday’s are usually held for “Hug A Caregiver‘ day, however, there is something exciting trending on the internet which was started by two of my Caregiving friends, G-J and Kathy who I have met through Denise Brown’s wonderful site, Caregiving.com . G-J was looking for another way to support Kathy, so she shared a photo with a cup of coffee, a cookie and a note of encouragement, Kathy returned the favor and before you know it, our friend Trish created the hashtag #CoffeeWithACaregiver. We’ve been exchanging virtual coffee greetings for the past week or so: Because of the challenging Caregiving week I had had with TLO, I can’t tell you how much I have looked forward to #CoffeeWithACaregiver each day. The daily support from #CoffeeWithACaregiver is very special, and very meaningful.

#CoffeeWithACaregiver is another great example of how Caregivers have this innate ability to understand and support each other even when the Caregiving journey’s are different. No matter what your Caregiving journey might be, finding support and comfort, in any form, is healthy and important to ones own personal health and well-being. I know that I would not have been able to get through all the challenging Caregiving days without my extended Caregiving family I have found through ‘The Purple Jacket’ and Caregiving.com

#CoffeeWithACaregiver 10:00am Friday Feb 14

On Friday, February 14, share the love with fellow family caregivers. Join all of us for a virtual cup of coffee and share the love of care. Simply use the hashtag #CoffeeWithACaregiver and share it across your Social Networks, Twitter, Facebook, Instagram, Pinterest. We’ll start posting at 10:00am, but feel free to post anytime of the day. We will all be sharing across our networks; it is not only going to be quite a bit of fun, you’ll see the love and support Caregivers have for each other right before your very eyes!

If you are a Caregiver and looking for a soothing place to share your story, join us on Caregiving.com. Denise Brown has created a soothing community of family Caregivers where we are all one, big, supportive, Caregiving family!

The Purple Jacket Highly recommends Denise Brown at the extended family at Caregiving.com

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February 2, 2014 · 1:13 pm

More Cancer: More Radiation

If You Are Out To Describe The Truth, Leave Elegance To The Tailor ~ Albert Einstein

The pain has been severe; the long sleepless hours have been agony, but now we know the truth behind the pain, we know the truth that is causing those sleepless days. More Cancer: More Radiation.

When the MRI results came in on Thursday, our fears became our reality; “It’s good that we know what we are dealing with” I said to TLO; “Yes, as difficult as this news is to hear, it is better to know” TLO responded. In the back of our minds, we both knew that this was not a case of sciatica.

The cancer has moved to his hip, pelvis and down his right leg. In order to relieve his pain, we will start palliative radiation treatments immediately. We are considering a PET scan to determine where else the cancer might be in his body, yet how much more do we really want to know?

There is comfort in holding each other and having a good cry.

One thing that we have decided is that we are going to enjoy every day together. We will not let the cancer rule us because as Saint Augustine said, “Love Is The Beauty Of The Soul.”

It is at these times when the dual role of Caregiver and Partner intertwine. The fate of reality projects our thoughts to a future which has not arrived. You want the pain to go away; nothing more, nothing less. Removing the Caregiving role provides for more free time yet losing a partner leaves an emptiness that only makes free time more difficult.

As Caregivers, we often fail to reach out and ask for help. Those reasons vary from wanting to do it alone, to not knowing how to ask for help. With that, family and friends have to have their own comfort zone when asking what they can do to help. I have been on both sides of this dilemma. The most important part of this process is to be aware and act within one’s comfort zone.

If you are wondering what you might be able to do, please feel free to:

Call us
Write us
Text us
Visit us
Pray for us
Do what makes YOU most comfortable

TLO and I understand that we have a difficult road ahead, but that is OK because we know the truth and we can deal with it accordingly. The quick response from his primary care physician and radiation oncologist to have his treatment plan set up within 24 hours has simply amazed us. We are so fortunate to have Dr. Starcevic and Dr. Medina on our Care Team.

It goes without saying how fortunate we are to have each and everyone one of you with us on this journey because…

We Might Have Cancer, But Cancer Does Not Have Us!

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January 18, 2014 · 1:38 pm

The Caregiving YoYo

You Can Never Plan The Future By The Past ~ Edmund Burke

How many of you liked to play with a Yo Yo when you were a kid? I would guess that just about everyone has taken their turn, spinning their Yo Yo up and down, controlling the string, holding steady, flipping the device backwards to impress. As I have thought about how our Caregiving journey has begun in 2014, I see a resemblance to that of a Yo Yo: Up and down, backwards and forwards, spinning all around. Unlike a Yo Yo, Caregivers have little, if any control over their Caree’s, health which makes for so much uncertainty when you try to plan ahead.

TLO finished 2013 with a bout of congestive heart failure that kept us from traveling to Florida‘s west coast to visit his family. I could tell leading up to the day we were supposed to leave for Tampa that something different was brewing with his health which necessitated an unplanned trip to his PCP. With a few days of additional diuretics, and a new 6 day steroid pack, TLO was feeling great as we moved into 2014.

Mindful that we have now had two trips derailed by unexpected health calamities late in 2013, we set our sights on going on a week-long cruise starting on Saturday, January 11th. Our travel plans for January 11th ended up being derailed again by another unexpected health calamity. Unable to get out of bed the day before the cruise, and the following two days after the cruise sailed, necessitated an emergency call to his PCP, then followed by another unplanned visit to the doctor’s office. The consensus was that it was unsafe for him to go on the cruise; disappointment does not accurately describe how we both felt when I had to make the call to cancel the cruise. (Yes, I did purchase the insurance!)

With an uncontrollable nose bleed, only exceeded by excruciating back and leg pain necessitated TLO to stay in bed for 3 days; there was sheer puzzlement about what was going on with his body. The pain he was experiencing was different, the nose bleed was troubling, and the concern was mounting. His current pain medications were not providing any relief, “What’s going on here” we both thought! The relief started to slowly take place on Tuesday after an injection administered by his PCP and a new round of steroids which started the following day. However, during the visit with the PCP, the concern is that the Cancer has spread to the bones in his hip and leg; we’ll know more after TLO completes another MRI. As the week progressed, TLO admitted that he had been fearful of dying because of the intensity of his pain and discomfort.

Thankfully, just a few days after the injection and a new round of steroids in his system, we were able to get TLO out of the house for a trial run. As the week progressed, the nose bleed disappeared and his pain is at a manageable level. “I wish I would have felt like this on the day we were supposed to leave for the cruise,” TLO said just last night. ‘I would have wished that, too’ I concurred.

While it may seem easy for some of us to control a Yo Yo by keeping it steady and close to the ground; Caregivers are always rewinding, trying to avoid that uncontrollable spin, looking for that gentle ‘touch’ that will keep our paths steady. That is why I like what Edmond Burke had to say…“You can never plan the future by the past.” If we were to look solely on what was in the past, we would lose hope. Hope is one of those intangible items that makes those difficult Caregiving days plausible. Without hope, there is no planning, no future, no means of survival. Hope brings anticipation, hope brings comfort, hope brings the excitement… Hope is what keeps us going!

TLO Friday, Jan 17

We all know our health is unpredictable. Sure, there are plenty people like ‘TLO’ who have similar health concerns in front of them, but to take away one’s hope is like removing medicine. Without hope, there is no future; without a plan, there is no hope! Yes, we are going to plan another trip soon and when the day arrives for us to leave, we hope that we will be well enough to go. While I’m mindful of the past, I can’t worry about it because by worrying about the past, takes away the hope that we create. Once we lose our hope, we have let the cancer beat us. Because, you see, we might have cancer, but cancer does not have us!

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Tagged as Caregiver, Caregiving, LGBT Caregivers, LGBT Seniors, The Bow-Tie-Guy, TLO

January 9, 2014 · 4:27 pm

Friday’s Video Chat: Family Caregivers Talk Career and Caregiving

On Friday, January 10th at 3:00 pm ET, I have been invited by Denise Brown from Caregiving.com to join her and three other family on Caregiving.com weekly video chat. This week four different Caregivers talk about juggling a career and their Caregiving responsibilities. To watch the discussion, hosted by Denise Brown from Caregivnig.com simply click here!

Denise Brown began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support family Caregivers. Through her blog, Denise share’s words of comfort and offer coping strategies and tips. Denise is also an accomplished Author and Public Speaker. If you have not visited Caregiving.com, now is a great time to do so!

Below is Friday’s guest list:

–Chris (me), who works for a social service agency and cares for his partner. Chris blogs on CareGiving.com and on his website, The Purple Jacket. Follow Chris on Twitter: @TheBowTieGuy

–Heather, a long-distance caregiver for her father who works for a regional medical center. You can listen to Heather talk about her Caregiving experience here. Follow Heather on Twitter: @HeatherSlutzky

–Shanika, a freelance multimedia copywriter in which she combines her skills as in 2D animation, illustration, and interactive media with web copy to create visually engaging sales messages. She works part-time from home in the mountainous area of Lithonia, Georgia, where she takes care of both her parents, Emmitt and Johnnie Journey, and her one year old son, Antonio. Follow Shanika on Twitter: @ShanikaJourney

–Trish, who cares for her brother, works as a legal administrator. You can read her blog on CareGiving.com and on RobertsSister.com and connect with her on Twitter, @robertssister1.

See you on Friday!

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Tagged as Caregiver, Caregiving.com, Denise Brown, Family caregivers, The Bow-Tie-Guy

January 2, 2014 · 11:39 am

Thursday’s are always ‘Hug A Caregiver Day’

In 2014 commit yourself to Smile more; Laugh longer; Let Go of Stress!

Caregiving can sometimes be hard, but hugging a Caregiver is easy!

Thursday’s are always…Hug A Caregiver Day!

There is an esteemed 60= Million Family Caregiver in the United States today, Find one and give them a Hug!

Christopher MacLellan, affectionately known as ‘The Bow Tie Guy, is a family Caregiver and blogs about his Caregiving experience at ‘The Purple Jacket.’ Chris is also the coordinator of Senior Services for SunServe Social Services and the host of his new radio show’ Healing Ties, starting in late January 2014.

Are you or someone you know a caregiver? (boomersurvive-thriveguide.typepad.com)
Valuable New Year’s Resolutions for Caregivers (homeinsteadmississauga-blog.com)
Caregiver experience is valuable (snagajob.com)
Holidays for Caregivers (longtermhealth.wordpress.com)
Dementia, Family Caregiving, and Driving (blogs.thehartford.com)
Need for Dementia Caregivers Grows as Boomers Age (abcnews.go.com)

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December 19, 2013 · 8:30 am

Thursday’s are always ‘Hug A Caregiver Day!’

The miracle is not that we do this work, but that we are happy to do it. ~ Mother Teresa

Give the gift that keeps on giving…Give a Caregiver a Holiday Hug this year!

Remember… Caregiving can sometimes be hard…But Hugging a Caregiver is easy!

Be on the look out for my new radio show in January called…”Healing Ties ” from

Caregivers: Sink Your Teeth Into Dental Hygiene! (thepurplejacket.com)
Rising Alzheimer’s creates strain on caregivers (bigstory.ap.org)
10 Tips for Caregivers Caring for those with Epilepsy (caregiving.com)
That’s What Caregivers Do! (thepurplejacket.com)
Whose Journey Is It? (thepurplejacket.com)
It’s Never Too Late To Start Over (thepurplejacket.com)
It’s Never Too Late To Start Over (thepurplejacket.com)
Progressive Holiday Blog Party with Caregiving.com (thepurplejacket.com)
Shield HealthCare Announces Caregiver Story Contest Winners (sacbee.com)
How Employers Can Help Their Caregiving Employees (caregiving.com)
Caregivers: Choose the Right Car for the Job (allstate.com)

Music Is The Best Medicine

One good thing about music, when it hits you, you feel no pain! ~ Bob Marley

My first experience with music therapy was when I was completing a unit of clinical pastoral education with hospice way back in 2003. The positive impression that was left on me from that experience is still prevalent today. So when the phone rang the other day from a good friend from St. Louis alerting me that a violinist wanted to come to the house and play for ‘TLO,’ I jumped at the opportunity.

One of ‘TLO’ great love, is music. Growing up in New York, and living in Manhattan, TLO loved going to Broadway shows while enjoying the Arts and Culture that the city that never sleeps has to offer. Thinking about a game of trivia that is focused on Broadway shows and opera, you will want ‘TLO’ on your team! I have had the pleasure of watching him stump some of the great minds in music when a question or two would come up about a particular production or piece of music. I know my place when the conversation turns to Broadway, opera and music.

One of the frustrating aspects for ‘TLO’ during his recent bout with cancer and the subsequent radiation treatments has been his lack of interests in some of his favorite hobbies, especially music. Always one to turn the Bose stereo on high to listen to one of his collections of CD’s, ‘TLO’ has not had any interest in listening to his music for quite some time now. However the opportunity to have someone play live for ‘TLO’ was just too good to pass up, even if the logistics were a nightmare. Even with last-minute notice, I was going to do my best to make this happen.

Caregivers will certainly understand how frustrating multi-tasking and juggling schedules can be while trying to make multiple things happen at once. That was my plight when this kind offer came in for ‘TLO.’ With 70 coming to our monthly Silver Serve luncheon on the same day the violinist wanted to come to our home, the window of opportunity was short in order to make this ‘concert’ happen. However, we solved the logistic problem by inviting the violinist to meet us at the Silver Serve Luncheon where not only did the Violinist play for “TLO,” he wowed the entire group with his splendid violin music. It was a win/win for everyone!

Those who know ‘TLO’ well know that he is not shy about sharing his opinion, in fact, I have often wondered why he never was a critic for the New York Times! Yet this one-act of kindness simply bowled him over. “I have to admit that I really enjoyed the violinist: That was so kind of him to play for me” TLO said. “I was pretty amazed too,” I responded

Kindness comes in a variety of ways. Our friend Bob in St. Louis knew that ‘TLO’ would enjoy a ‘private’ concert. Bob connected us with Joshi; Using his gift and talent in music, Joshi (who was visiting from Boston) went out of his way to bring a sense of happiness and joy to a man whom he had never met. “I understand your partner is ill with cancer, I want to come to your home and play music for him so that he might feel better,” Yoshi said to me on the phone that morning. I will never forget his initial phone call!

Yoshi’s random act of kindness reminded me how important it is for all of us to share our talents with each other. It is so easy to get caught up in the emotion of our Caregiving experience that when something that is so unexpected happens to us, we are caught off guard. I’m not sure we will ever cross paths with Joshi again, yet I do know that he has left an impression on us that will last a lifetime.

Because in the end, only kindness matters!

You see, We might have Cancer But Cancer does not have us!

5 Ways Music can Relieve Stress (stress.answers.com)
Because music can do so much more (notesandpawsforpeople.wordpress.com)
Five Scenarios Where Music Therapy for Stress Helps (stress.answers.com)
What is Music Therapy? (hannahtheveganzombie.wordpress.com)

Progressive Holiday Blog Party with Caregiving.com

Welcome to the Progressive Holiday Blog Party 2013

Greetings! ‘The Purple Jacket’ pleased to join the 2013 Progressive Holiday Blog Party with the wonderful members of Caregiving.com. The Community at Caregiving.com is like having an extended family; I am proud to be a part of this wonderful group!

I graduated from radiation!

For those first time visitors to ‘The Purple Jacket’ welcome and Thank You for stopping by! I blog about my Caregiving experience for my partner, who I loving refer to as ‘The Little One.’ He was diagnosed with esophagus cancer in August of 2011. Given three to four months to live, he has outlived all predictions. Yet in October of 2013, Cancer has returned to ‘The Little One’ with a vengeance as he was diagnosed with Cancer on the spine. With three tumors on his spine; ‘The Little One’ just recently completed 30 radiation treatments. For the most part, he is pain-free at the moment, my that continue!

While each one of us deals with the reality of cancer in a different way, each one of us wants to look on the bright side of life. Yesterday is gone, today is here, not sure about tomorrow. It is our hope that lets us withstand problems; it is our beliefs that let us find solutions.

I have been blogging here and at Caregiving.com for almost two years now. The Caregivers I have met along the way have become a part of our family. While our Caregiving journey’s might be different, Caregivers have this innate ability to understand each other, to be there for each other, to care for each other.

Things that I am looking forward to in 2014:

My Blog Talk Radio Show, ‘Be A Healthy Caregiver’ has been on hiatus since October, but will be back on the air in January with a new title, ‘Healing Ties.’ You can visit my Blog Talk Radio page and listen to archived versions of the show by clicking here!

I will be (returning) to studying Theology at St. Joseph’s College in Standish, Maine with the intent to finish my Thesis, ‘The Social Sin of Geriatric Care in America.”

I hope we do another CareCruise in 2014!

To learn more about me, I invite you to visit my ‘about page’ on my website by clicking here.

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

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Caregiving Challenges Of Blended Families Mid-Michigan (jerryreiflawyer.com)
Happy Thanks-Caregiving (thepurplejacket.com)
Whose Journey Is It? (thepurplejacket.com)
Happy Thanks-Caregiving (caregiving.com)
Thursday’s are always ‘Hug A Caregiver Day!’ (thepurplejacket.com)
Caregiver Study – Seeking Participants (alzjourney.com)
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Tagged as Caregiver, Caregiving, Caregiving.com, Florida, LGBT Caregiving, LGBT Seniors, The Bow-Tie-Guy

December 1, 2013 · 10:49 pm

It’s Never Too Late To Start Over

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

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 to 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.

During 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 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.

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!

cjmbtr (1)

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

Whose Journey Is It? (thepurplejacket.com)
Cancer Treatment In Juneau Finds Missing Component (alaskapublic.org)
Hello and Please, Come In! (thepurplejacket.com)
Getting to know your radiation therapy team (delawarecancercare.com)
Sea salt and baking soda, best all natural remedy for curing radiation exposure and cancer (naturalcuresnotmedicine.com)
What to expect during radiation therapy (delawarecancercare.com)

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Tagged as advocacy, Broward Health, Caregiver, Caregiving, LGBT Caregivers, LGBT Seniors, radiation treatments, The Bow-Tie-Guy

November 9, 2013 · 11:29 am

Eliminating A Health Care Provider

It’s not what you look at that matters, it’s what you see…Henry David Thoreau.

As you’ve heard me state many times before here on ‘The Purple Jacket,” one of the most important roles that a Caregiver plays is that of an advocate. Advocacy came in full force this week when we had to eliminate our choice for Hospice and seek other assistance for our current health care journey.

When we established services with Hospice, I had anticipated a fluid relationship that would be built on clear and consistent communication. That has been far from our experience: I would wager that many of you are shocked by this revelation! From the start of our relationship with Hospice, I have coined Hospice as our ‘friends.’ It saddens me that our ‘friends’ were such a disappointment.

It’s difficult to put my finger on how this ‘friendship’ went sour, yet from the onset of a bumpy admission process, to the latest problem with a medication order, it became quite clear to me that ‘our friends’ do not seem to be able to communicate in a timely manner with their clients, nor work within a team of health care providers. Cancer is difficult enough, yet when “TLO” indicated that ‘our friends’ had become an “irritant,” I knew it was time to step in and eliminate them as a part of our care team.

I’m confident that any Caregiver and/or advocate would agree that what is most important for any health care team, is to work in unison, with one taking the lead role. In the almost four weeks since we enlisted our ‘friends’ to be part of our team, their failure to communicate with other health care professionals on our team was of great concern to me. Over the past two years since TLO was originally diagnosed with esophageal cancer, we have had tremendous support from his primary care physician, Dr. Milica Starcevic, his oncologist, Dr. Luis Barraras and his cardiologist, Dr. Harold Altschuler. The support we have had from these fine physicians has been based on clear and concise communication. They share in the care plan for TLO and work happily within a team. A major player in his care, our ‘friends’ at Hospice severely dropped the ball!

When we invited our ‘new friends’ into our home, we were thankful because we both knew that we could not do this alone. We both felt that adding them to our team would be of benefit, because when we looked at what our new ‘friends’ could offer us, we were impressed. But what really mattered was what we saw from our ‘friends’ that shaped our impression.

I will continue to be a big supporter of Hospice because I believe in the mission of Hospice. But just like in any business, not all service providers are alike. I do not hold any animosity toward our former ‘friends’, but I do hope that they have learned something from our experience: I know that I have! I think Henry David Thoreau said it correctly: It’s not what you look at that matters, it’s what you see.

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