November 1, 2013 · 2:55 pm

That’s What Caregivers Do!

Presidential Proclamation — November is National Family Caregivers Month!

I am proud to be one of the over 60 million Caregivers in the United States today. Being a Caregiver can be, and often is challenging… But also so very rewarding. I believe that to be entrusted with the care of another human being is one of the greatest honors that can be bestowed on another person. Those long sleepless nights, those challenging trips to the doctor and hospitals, those times when you have to intercede, educated and advocate come full circle when your Caree looks at you and simply says…”Thank You for what you do for me.”

I am also mindful of those family Caregivers who are never thanked, never appreciated and overworked. If it means anything to you, from one Caregiver to another, I offer my thanks and appreciation to you because… That’s what Caregivers do!

Caregiving is not a role that is often chosen and Caregiving is not for everyone. Caregivers come in many different shapes, sizes, philosophies and cultures: Caregiving and Caregivers are diverse. While our Caregiving journeys might be different, Caregivers have this innate ability to understand each other, to care for each other, to be there for each other, because… That’s What Caregivers do!

Through the wonders of the internet, my Caregiving journey has been enriched by the countless number of people I have met along the way. Each one of you have inspired me, supported me and have been there for me because… That’s what Caregivers do!

A special ‘thank you’ to Author, Caregiving Coach, Speaker and owner at Caregiving.com Denise Brown and my extended family at Caregiving.com for your support. You opened up your ‘home’ to us and made us feel welcome from the start because… That’s what Caregivers do!

We know that our current Caregiving journey is going to be filled with a few bumps and bruises along the way; Cancer has a way of doing that. Yet we know those bumps and bruises will be a tad softer because of our extended Caregiving family we’ve met along the way because…That’s what Caregivers do!.

Caregivers: Thank You for all you do from Bernard Richard Schiffer…’The Little One’

To all Caregivers, I share this simple smile from a very special fellow whose courage is unbounded, as a way of thanking you for all that you do, because…That’s what Caregivers do!

The CareGiver Partnership: 10 Things You Should Say to a Family Caregiver (prweb.com)
10 Tips for Family Caregivers of Persons with Low Vision (caregiving.com)
Rising Alzheimer’s creates strain on caregivers (bigstory.ap.org)
Heads-Up About Our Crowdfunding Campaign (caregiving.com)
Annual Conference Honors Families Who Honor Family (mauitvnews.com)
The Case for Identifying Family Caregivers on Medical Records (engagingthepatient.com)
November is National Caregivers Month (themorningsun.com)
The Financial Struggles of Caregiving (thepurplejacket.com)

5 Comments

Filed under Caregiving, The Purple Jacket

Tagged as Caregiver, Caregiver Support, Caregiving, Caregiving.com, Family Caregiver, Home care

October 31, 2013 · 8:34 am

Thursday are always ‘Hug A Caregiver Day!’

Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

Listen to:

My Show, ‘Be A Healthy Caregiver’ is on Hiatus while TLO is going through Radiation Treatment, we will be back on the air in December!

However all of our episodes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here!

Caregivers: Sink Your Teeth Into Dental Hygiene! (thepurplejacket.com)
Rising Alzheimer’s creates strain on caregivers (bigstory.ap.org)

2 Comments

Filed under Caregiving, The Purple Jacket

Tagged as Be A Healthy Caregiver, Caregiver, Caregiver Support, Health, Hug A Caregiver Day, Radiation therapy, TLO

October 29, 2013 · 5:08 pm

On Being An Advocate

Knowledge is knowing what we do not know: Ralph Waldo Emerson

As we move into the second week of TLO’s palliative radiation treatments, we experienced a few challenges over this past weekend that needed the attention of the Hospice Nurse. I knew it was just a matter of time before we would enlist their services, it is comforting to know that our ‘friends’ at Hospice of Broward County are just a phone call away.

One of the most important components to being a Caregiver is to know your strengths, and to know your weaknesses. While I know I have a Ph.D. in TLO, I am also aware of my (many) limitations. I’m not a pharmacist, doctor or nurse. Remember…Knowledge is knowing what we do not know. My strength in Caregiving is advocacy; Advocacy is without a doubt the most, if not the most important role of a Caregiver. My Ph.D. in TLO comes in handy when it is time to advocate. We will get to that in just a few!

When a new problem arises, there is no time to guess, wonder out loud, talk about it…it’s time to act. Rather…it is time to advocate! TLO had started to show signs of Edema is his feet and ankles on Thursday. Aware that he has congestive heart failure to go along with the myriad of his health calamities the extreme Edema was something new to his health care puzzle. While I ‘knew’ an additional dose of furosimde would probably be the solution, (as well as elevating his legs), I did not know if adding the additional dose would be appropriate with the new MEDs that have been prescribed over the last week. A quick call by the Hospice nurse during her home visit on Thursday ensured a quick call to the Doctor to secure the increase the furosimde dosage. Done!

As we moved into Sunday, water continued to build on his feet and ankles, “the Edema was getting worse” I thought. “I am going to call Hospice,” I said to TLO. “What are they going to do for me” TLO said. “I’m pretty sure they are going to be able to do more than I can do for you at the moment because what is happening right now is just a tad out of my comfort zone.” I said. When the phone rang at Hospice, I was greeted by a warm voice who listened as we talked through a couple of options that might help in this situation. My Ph.D. in TLO comes in handy when debating with him what is the right thing to do.

While there was really no resolution on Sunday to his Edema, things started to change on Monday with a few calls and a visit from the Hospice Medical Director. It was perfect timing for the Doctor to make her home visit as we were able to address first hand not only the Edema, but the entire care plan and philosophy of TLO’s care as we move forward in our Hospice Journey. Having the Doctor in our home for over two hours not only paid medical dividends for TLO, her presence demonstrated to both of us the special care that Hospice provides its patients. The doubter of Hospice, TLO became the believer after her visit. “How did you get her to come to the house,” TLO asked…’She came because your a special patient,” I retorted!

What amazed me about her visit was not only the care she provided to TLO, but the time that she took to educate me on his MEDs; the Doctor was there for both of us! While going through his MEDs, the Doctor provided me with a ‘cheat sheet’, written out in layman terms so that I would have a better grasp of the new pain MEDs. Remember the thing about knowledge! Now I am in a better position to advocate because I’ve gained more knowledge about the process with his new MEDs.

Advocacy comes in many shapes styles and forms; I’m not the type of advocate who is in your face, raises his voice, or creates a scene. However, I will engage professionals, ask questions until I am blue in the face to assure TLO has what he needs. Often times, we as Caregivers forget that we do have a Ph.D. in the one we care for. Our Ph.D. is just as important as any professional who is on the care-team because we spend the most time with our Caree and know them the best. That’s why the role of advocacy is essential in Caregiving. Physicians can write prescriptions, nurses can administer treatments, CNA’s can provide care, yet the key component to all these professional services is the personal knowledge or rather, the Ph.D. Caregiver’s have on their Caree. All these care components have to be in unison for optimal success.

Caregivers’s Ph.D. usually come just like those professional Ph.D.’s…burning the midnight oil, sleepless nights, worry, stress, etc. Caregivers advocacy is like taking an oral test in school, you have to be prepared for the unexpected, you must show up and give it your best try! Knowing what I don’t know has helped me be a better advocate; having a Ph.D. in TLO is priceless!

Caregivers, I bet you have a Ph.D, too!

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

Calling In Hospice Is Not Giving Up | by Linda Brendle (lifeaftercaregiving.wordpress.com)
Why Are Latinos Not Using Palliative and Hospice Care? (newamericamedia.org)
Never Alone (thepurplejacket.com)
The Call For Hospice (thepurplejacket.com)

6 Comments

Filed under Caregiving, The Purple Jacket

Tagged as advocacy, advocate, Caregiver, Hospice, Hospice Nurse, Radiation therapy, Ralph Waldo Emerson

October 24, 2013 · 8:30 am

Thursday are always ‘Hug A Caregiver Day!’

Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

Listen to:

Tuesday’s at 1:00 pm (EST) and Thursday’s at 8:00 pm!

Can’t listen live…NO WORRIES!

All of our episodes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here!

Caregivers: Sink Your Teeth Into Dental Hygiene! (thepurplejacket.com)
Rising Alzheimer’s creates strain on caregivers (bigstory.ap.org)

2 Comments

Filed under Caregiving, The Purple Jacket

Tagged as Be A Healthy Caregiver, Caregiver, Hug A Caregiver Day, NeverAlone, The Bow-Tie-Guy

October 23, 2013 · 12:33 pm

Hello and Please, Come In!

Before I refuse to take your questions, I have an opening statement…Ronald Reagan

As we walked into the office at the radiation oncologist this morning TLO proclaimed to the staff ‘ I’m here, let the games begin!’ Of course his ‘proclamation’ was greeted with a big smile by the staff as he sat down in the waiting room waiting for his time in the radiation ‘whirlybird!’ We are trying to find as much humor as possible as we can during this trying time.

The current plan of radiation treatment is focused on the tumor which is located in the cervical part of the spine. This is the area where TLO is experiencing the most amount of pain and discomfort. Because of its location, this is the tumor that is of the greatest concern. The last two nights at home have been difficult for him. The pain across his back makes it difficult for him to lay down comfortably in bed, sometimes the recliner is the most comfortable spot for him. The most important part of this process is to alleviate as much of his pain as possible. So, where ever he feels is the most comfortable spot for him, I’m all for it!

Our New Curtains

After yesterday’s treatment, we went for an ice coffee and found ourselves in a department store looking at curtains of all things. I can’t remember the last time we were even in a department store! TLO wanted new curtains for the dining room, ‘why not’ I said! In between his naps yesterday, I hung the curtains which lead to a conversation this morning prior to our departure for today’s treatment. ‘Thanks for agreeing on the curtains, don’t you think they are beautiful,’ TLO said. ‘Of course they are because you picked them out,’ I said with a smile. ‘It’s important to have things that you want, isn’t,’ he said? ‘Of course so,’ I replied. ‘If there is anything you want, I will do my best to get it for you!’

As we have progressed through the first few days of the radiation treatment, we know that we are just starting to scratch the surface to our emotions, our fears, and our determination. Today’s session has taken quite a bit out of TLO as evident by how terrible he is feeling this afternoon. We know that Cancer is an unwelcome guest in our home, but this unwelcome guest has brought with it the ability for us to draw closer, to dig deeper into the surface of our emotions and fears, while strengthening our determination. I guess there is something to learn from an unwelcome guest!

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

Defining the 3 goals of palliative care (kevinmd.com)
Salone Celebrates World Hospice & Palliative Care Day (sierraexpressmedia.com)
The best cancer care isn’t always the most expensive (washingtonpost.com)
What’s On Your Refrigerator? (thepurplejacket.com)
The Call For Hospice (thepurplejacket.com)
Never Alone (thepurplejacket.com)
Penn study shows the high costs of unnecessary radiation treatments for terminal cancer patients (eurekalert.org)
Cancer: That Unwelcomed Guest Has Returned (thepurplejacket.com)
Positive Thoughts Helps Ease The Diagnosis (thepurplejacket.com)

5 Comments

Filed under Caregiving, The Purple Jacket

Tagged as Broward County Florida, Hospice, Medicine, oncology, Pain management, Palliative care, Radiation therapy, TLO

October 22, 2013 · 12:07 pm

What’s On Your Refrigerator?

The Giving Of Love Is An Education In Itself… Eleanor Roosevelt

I was thinking about that television commercial which constantly asks ‘What’s In Your Wallet’ and how catchy their marketing theme is. I instantly think of Capital One when I hear that phrase…’What’s In Your Wallet’. We keep most of our important identification and credit cards in our wallet; I think carrying important identification and credit cards in a wallet a common trait for everyone.

As we move into the second phase of palliative radiation treatments, and while engaging our new friends with Hospice Of Broward County, it occurred to me that we are going to have a number of ‘new friends’ visiting us in our home. It is going to be important for these new friends to have quick access to our important documents which include TLO’s current meds and medication history, doctor information, health care directives, DNR, Durable Power of Attorney. That is why I put (some of) these important documents on our refrigerator in our File For Life folder for easy access! We even spiced our file up with a little New Orléans!

While I am a big proponent of electronic media and databases, we also have to be mindful that sometimes networks and computers crash. When you need your most important documents at a moments notice, the last thing you need is a failed hard drive or jump drive to add to the stress. In my opinion, there is nothing that replaces the hard copy of your important documents.

The key to having a hard copy of these documents is to know where they are at a moments notice. When you are in the midst of an emergency, the last thing that you want to have to think about is..‘where are those documents! Additionally, you want emergency personnel to have quick access to these documents. In our File For Life, I have a spreadsheet of TLO’s current meds, Doctor’s / Hospice contact information, Diagnosis, DNR and my contact information. I also indicate in our File For Life, where the larger documents are located, I.e. Power of Attorney, Health Care Proxy, Living Will.

So…’What’s On Your Refrigerator?’

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

Estate Planning, Part 3: Create an Estate-Planning Checklist (ally.com)
The Call For Hospice (thepurplejacket.com)
Eleanor Roosevelt Quote of the Week From Greg Bover (goodmorninggloucester.wordpress.com)

3 Comments

Filed under Caregiving, The Purple Jacket

Tagged as advocate, Caregiver, Caregiving, Hospice, LGBT Seniors, radiation

October 20, 2013 · 2:30 pm

The Call For Hospice

Love And Compassion are necessities, not luxuries. Without them humanity cannot survive. Dalai Lama

As we move into the second phase of palliative radiation treatment for TLO, it was important for both of us to bring in our ‘friends’ from Hospice of Broward County to help us in this journey. The Hospice team arrived promptly at our home on Friday, thoroughly explained the process to both of us, it was peaceful as we signed on the dotted line.

I used the word ‘friends at Hospice’ because that is what they are, they’re our friends. We welcome friends into our home and we cherish the time that our friends come and visit with us. We look at these new friends and thank them for being a part of this journey with us.

We are also cognizant and want to recognize our ‘old’ friends too. Sometimes when the word Hospice is used, there is that utter silence or that blank stare …that sense of ‘what do I say next’ …know that we understand that for some, the hospice conversation might be difficult. That’s OK too! Because…

Sometimes

Just being there is all that is needed!

We don’t know what the road ahead looks like for us. Sure, there will be a few swift curves, some winding roads and a missed turn or two. Yet it will be all of our friends who will help celebrate this journey with us. We’re realistic, but encouraged: We’re scared, but courageous. We know we cannot do this alone. We’re thankful for all our friends and we are respectful of your comfort zone too. Your thoughts, prayers, phone calls, e-mails, words or encouragement are most appreciated. Because you have remember…

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

HOSPICE – Dispelling The Myth (gskpulsevolunteers.com)
Compassion – Quotes (morethangold.me)
Life after Bobby: Hospice Care Week (georgeblogs.wordpress.com)
Pensioner shows his appreciation with donations to Macmillan & Lindsey Lodge Hospice (visitscunthorpe.com)
With help from hospice, Dad didn’t go gentle into that good night (denverpost.com)

10 Comments

Filed under Caregiving, The Purple Jacket

Tagged as Caregiver, Health, Hospice, LGBT Seniors, Medicine, oncology, Palliative care

October 17, 2013 · 8:30 am

Thursday are always ‘Hug A Caregiver Day!’

Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

Listen to:

Tuesday’s at 1:00 pm (EST)

Can’t listen live…NO WORRIES!

All of our episodes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here!

Caregivers: Sink Your Teeth Into Dental Hygiene! (thepurplejacket.com)
Rising Alzheimer’s creates strain on caregivers (bigstory.ap.org)
Caregiving (utsandiego.com)
Johns Hopkins Study Reports Caregivers Have Longer Life Expectancy (counselheal.com)
Caregivers: Learn to Unfrazzle! (thepurplejacket.com)

1 Comment

Filed under Caregiving, The Purple Jacket

Tagged as advocacy, Be A Healthy Caregiver, Caregiver, Caregiving, Hug A Caregiver

October 15, 2013 · 11:01 pm

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.

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!

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%!

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!

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

Radiation Oncologist: Staring down the elephant in the room (jacksonville.com)
Conflict of interest in radiation treatments (douglassreport.com)
Getting down to the heart of the matter (mapenn.wordpress.com)
Spartanburg oncologist receives the Order of the Palmetto award (goupstate.com)
Acupuncture helps ease ailments associated with breast cancer (kitv.com)
Ideas To Help You Handle Cancers (allentreeservices.com)
A helping hand through the cancer battle (carleydryden.com)

3 Comments

Filed under Caregiving, The Purple Jacket

Tagged as advocacy, advocate, Caregiver, Caregivers, Caregiving, Health, Oncologist, radiation

October 13, 2013 · 11:38 am

Never Alone

That Which Does Not Kill Us, Makes Us Stronger. Fredrich Nietzche

As we move into the second week with the news of the cancer spreading to TLO’s spine, we are grateful for all the wonderful words of encouragement, the expression of love, along with the care and concern shown to us. Yes, the news hit us hard last week, yet each day we have gotten stronger because of so many of you who have reached out to us. We are grateful for your attention; it is important for us to know that we are Never Alone.

This past Thursday we had our initial consultation with the radiation oncologist; our next scheduled visit with the radiation oncologist is on Tuesday of this coming week. With three tumors on his spine located in the Cervical, Thoracic, and Lumbar region, the radiation oncologist is going to be aggressive with his treatment plan, yet cautious because of the location of the tumors. The visit on Tuesday will determine if the radiation oncologist will be able to ‘shoot’ one or two tumors at the same time. We are anticipating 14 to 21 days of radiation.

As the week has moved on, we have both adjusted to the difficult news, and what lies ahead of us. A good friend of mine asked me this past week, “what is the time frame that the Doctor gave you?” Knowing what he insinuated, I reminded him that two years ago the oncologist told me that ‘TLO’ had “three, maybe four months to live.” Now two years past that original diagnosis, we have learned to take predictions in stride and deal solely with reality. We have cancer, we know it is serious, each day is a gift. We have run with this philosophy for the past two years, there is no reason to change it now.

The reality of the diagnosis has allowed us to have some very meaningful conversations between the two of us. One of the conversations we had this week centered on the need to have a consultation with Hospice. We look at Hospice in a positive sense, not a death sentence. Hospice is not a place where you go to die, but rather a wonderful program that celebrates life. Hospice does not shorten lives, Hospice helps people live as pain-free as possible. What Hospice does help accomplish is the facilitation of the natural course of life. Hospice is inclusive of the entire family, bringing care and comfort to all involved. The sooner Hospice in engaging in the process, the better the experience will be for everyone.

As Caregivers, we often get caught up in the mindset that we can do this alone. I think that is even more so for LGBT couples who fear discrimination and bigotry. It is one thing to experience this feeling in a public setting, unbearable to have someone bring those feelings into your own home. We both have previous experience of waiting too long to call for assistance. As we move forward with his palliative radiation treatments, it only makes sense to have this added benefit with us.

As the week has moved on, TLO has regained some strength and continues to try to be as independent as possible. When I look at him, I am frustrated because I cannot see what I know is inside of him. We had a trip to the grocery store, he has been out to lunch and to dinner, and he is chatting on the phone with friends. What is so different about today from last week? The only difference is that we now know what has caused his pain, now we have to respond to it. In a sense, the diagnosis is a blessing because now we know what we are up against and can have a plan of attack. We move forward with the same vigor, hope, and reality that we did two years ago.