Tag Archives: LGBT Caregiving

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


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

thursdays

encouraging-words-for-caregivers

Caregiving Heart

Listen to: 

cjmbtr (1)

‘”Be A Healthy Caregiver” is on hiatus while “TLO” is undergoing radiation treatments.  We plan on being back on the Air in January!

Can’t listen live…NO WORRIES!

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

Leave a comment

Filed under Caregiving, The Purple Jacket

Happy Thanks-Caregiving


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

ViolenMan

 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! 

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

3 Comments

Filed under Caregiving, The Purple Jacket

The ‘Price’ of CareGiving


I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.  Mother Teresa 
 

As Caregivers we are often put in a position where we have to choose between what’s good for our self and what is  good for the person for whom we are caring.  If you are a caregiver like me (and I bet you are), you are always putting the needs of your caree first.   Placing someones else’s needs in front of your own can be difficult for some people to understand; but not for the caregiver! In our me first society, and in many business circles, decisions like this are frowned on and often not understood.

To be a healthy caregiver, we have to learn how to live life in the solutions of our Caregiving experience; not solely in the problems of our Caregiving experience.  By living a life focused on solutions, we live our life with clarity, hope and love. Focusing solely on problems, we live in fear, worry and despair.  Focusing on solutions is not only a  healthy mindset for caregivers, it is a healthy mindset for everyone.  

I have had to learn this lesson the hard way. After almost 10 years of Caregiving,  I started to focus more  on the problem, not the solutions. By focusing only on the problems, I lost myself and just created more problems in return.   Losing yourself complicates Caregiving.  While the love for your caree is strong and sealed, you have to love yourself first in order to solidify your inner peace and purpose.  Your life can’t be that of your caree!

Photo Credit: The Purple Jacket

The price of Caregiving is not fixed, it is different for everyone. But if you don’t recognize the personal cost in Caregiving, you can lose yourself in the process, and that cost is priceless.   What are the signs of losing yourself: weight gain, loss of focus/clarity, financial stress, spiritual uncertainty, your own purpose, professional satisfaction, detachment just to name a few.

For people who care, this is a conundrum. We are always asking ourselves…”Did I do enough; could I have done something different.”  

Yet what we might ask ourselves is…

Are we always looking at the problem, and not the solution? 

While I do not intend to lose  focus on the care of ‘The Little One’,  I am starting to refocus on caring for myself. This has been a revelation of sorts because ‘The Little One’  has been asking me (telling, demanding, requesting, you get the picture) to take better care of myself. Yet immersed in this care and unwilling to listen, reality has come full force.  How can I be a good caregiver, if I can’t take better care of myself?

Photo Credit: The Purple Jacket

It’s simple:

Eat Less… Move More

Focus on Solutions…Not Problems

Never quit caring… Especially for yourself  

You see…We might have Cancer…

but Cancer does not have us!

7 Comments

Filed under Caregiving, The Purple Jacket

Can You Be a Healthy Caregiver?


YES YOU CAN be a healthy caregiver!

Join our TWITTER  #carefit chat tonight at 8 pm ET with 

 

Denise Brown @caregiving 

       and

Chris MacLellan @thebowtieguy

Find us on Twitter TONIGHT August 20th 8:00 PM  #carefit       
 We’ll discuss how to stay healthy as you care.
 HOW TO GET FROM
 

THERE

HERE

TO

 

and maintain a healthy lifestyle  while you care !

1 Comment

Filed under Caregiving, The Purple Jacket

Communities of One?


Photo Credit: Free Digital Photo’s

Roads that appear smooth can turn bumpy on a moment’s notice.  That happened to us this weekend as ‘The Little One’ experienced some ‘bumps in the road’ with his esophagus.  There has been so much smooth sailing over the past month or so that the events of this weekend took us by surprise.  We take so much for granted in life, and expect our systems to run without a problem.  Since the diagnosis of esophageal   cancer in August, we have learned that food can be a funny thing.  There is no rhyme or reason why one form of food has more difficulty passing the ‘bump in the road’ in his esophagus more so than another does.  It just happens.

While the three instances this weekend were alarming, they reminded us that no matter how good we might feel, there is  always an issue lurking around the corner.  I am happy to report that as of Sunday night and moving into Monday, ‘The Little One’ is doing well and there has been no problems with the esophagus. These episodes take quite a bit out of us simply because of the unknown.  While the food pass ‘the bump in the road’…when is the right time to call 911?  It is a delicate balance and sometimes you just have to hope and pray the you make the right decision.

As I write about our weekend, I started to think about a man who I met through my work at SunServe Social Services.   This gentleman lives independently at Continuing Care Retirement facility and while there appears to be loads of activities,  he feels “on the outside looking in’ because as an LGBT Senior, his living environment is not sensitive to the needs of LGBT Seniors.

Some people might ask…Just what are the needs of an LGBT Seniors?

If you have to ask that question, then I think the best reference for you would be The LGBT Aging Center report on Language and LGBT Housing: Making Models that Fits all Housing. 

Aging in America is difficult enough; LGBT Aging is two-fold.   Think of it this way…As a kid every one of us had that awkward moment where we felt like we did not belong, we stood out in a crowd, or felt  left our by a group.  Today, across America, LGBT Seniors have those  same feelings and emotions we had as kids when they are thrust in facilities that are not sensitive to their needs.  Imagine trusting your care to someone who dislikes you for who you are…Remember Nurse Rachett?

Thinking about this gentleman  lead me to think…”what could be possibly be worse”… Living alone or living in a community where you are alone?

 [polldaddy poll=6145755]

While society is changing, we have a long way to go before there is acceptance. Overtime…with proper training, logical conversation, while using  active listening skills, change does happen!

Photo Credit: Free Digital Photos (he should be wearing a bow-tie)

I am happy to be associated with an organization like SunServe Social Services   who provides ongoing organizational consultation to help companies, organizations and service providers  in becoming more LGBT competent through policy and procedures alignment with best practices for LGBT care.  It is through awareness and sensitivity training where we step outside our comfort zone and learn that there are other ways at looking at life is making a difference in our community. 

Sure, my plans for this past weekend took a major detour as I had to make some adjustments in my life to care for the one that I love.  But isn’t that what life is all about?  What I was supposed to do this weekend was important, but as a caregiver, I am on call 24-7 and sometimes you have to weigh what actually is  important in life.

While we are secure in our relationship and know that these ‘bumps in the road’ are going to happen from time to time, I am left to  wonder about all those other ‘little-ones’ out there who have to fend for themselves in a system that is not accepting of them: I wonder about all those frail seniors who live alone just looking for someone to have a conversation with on a daily basis.   I wonder about all those seniors who live in a community, yet feel like they are alone.   Being alone in a community has to be the worst feeling anyone could ever experience in life.

 Let it be our goal that there will never be a community of one!

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

   

4 Comments

Filed under Caregiving

What’s different about LGBT Care giving?


 I have to admit, I have had a difficult time writing these past few weeks.  “The Little One” continues to excel now that we are settled in South Florida.  While there has been a couple of flare ups recently with his esophagus, all in all, his progress continues to exceed expectations.   We are most thankful.

While reconnecting with a good friend of mine here in South Florida, we started a conversation in regards to Caregiving.    As a PHD and LCSW, my friend is a trusted advisor who just happens to be straight, but not narrow!  🙂

One morning over breakfast he asked me…”What exactly is different about LGBT Caregiving.”   A very profound question that is easy to answer, yet difficult to explain.   “Caregiving in an of itself is the same for every couple, you simply care for the one you love.   The difference for the LGBT caregiver is when we have to interact with systems outside of our home that are out of our control .”

I continued on with an example so that my friend could better understand my position.  (Speaking to my friend now)  Consider both of us  arriving at the hospital emergency room as caregivers:  you are attending to your  wife, me attending to my partner.  The farthest thing on your mind on the way to the hospital is how will you, as the husband, will be accepted by the hospital staff.  

Photo Credit: Free Digital Photos

On the other hand, when we walk into the hospital  there is always the aspect of doubt lurking behind those doors …’What is the nature of your relationship,’  is a commonly asked question when two individuals of the same sex appear on the scene.  You walk in with your wife, the staff and attendants at the hospital   presuppose that you are a married couple. We on the other hand are constantly in fear of losing access to the one that we care for and love.  I doubt you travel with your marriage license or Power of Attorney on a regular basis in order to prove your relationship in these professional settings? I never leave the house without a copy of all our legal documents.  Even with the legal documents,  that does not guarantee acceptance as often times we will have to deal with an employee’s individual bias and bigotry.

It was at that moment that a ‘red light’ went on in with my friend.  “I completely understand the issue about marriage equality now.”    The conversation continued on as it relates to social security, benefits, the entire, housing, pension, etc. (I will be blogging about the marriage equality issue later this week)    What this  conversation demonstrated to me was that when you put a face to an issue, you have a better chance of  understanding the issue at hand.  This is exactly what happened with my friend.  What was foggy, now was  clear.    All it took was a clear, everyday example to help turn the light bulb on.  It was nice to teach a PHD a trick or two; but we have a long way to go with this important issue that faces our society and aging population today!

  You See…We might have cancer, but cancer does not have us!

1 Comment

Filed under Caregiving

Honest Dialogue is the BEST Medicine


Tonight we had ‘The Talk’…The ‘What If’s…The ‘unmentionable’…It happen so matter-of-factually that by the time the conversation was over, there was no pain, no agony, no tears. It’s simply called, planning…planning for the day when there will be no more days. How does one really do that…By having honest dialogue so that everyone is on the same page so that no stone is left unturned.

When The Little One mentioned the word “Hospice” this evening, it opened the door up for one of the most beautiful and meaningful conversations that two people could ever have on such a sensitive subject. The funny thing about this word “Hospice” is that we have both experienced hospice in the past as both of our deceased partners went through this wonderful program. Yet for some reason, we have not been able to talk openly about this topic between ourselves until today.

We are both advocates of Hospice yet for very different, yet similar reasons. While I tend to be on the spiritual side (I can’t completely let go of my theological background) ‘The Little One’ claims to an agnostic Jew. I always find that funny because he is one of the most spiritual and ground persons that I have ever met. Often misunderstood for his gruff demeanor and direct comments, ‘The Little One’ is rooted in clear thought and perspective. You may not like what he has to say, yet he leaves no dust uncovered. You know where you stand, win or lose. It is really the best way to communicate.

For me, Hospice is a way to celebrate all stages of life. Hospice is not only for the patient, it is also for the entire family of the patient. ‘The Little One’ would say the same thing, yet he would omit the spiritual side of the experience. Yet the spiritual side of Hospice is undeniable because so many lives are transformed by the experience. During my CPE (Clinical Pastoral Education) internship several years ago, I was honored to have the chance to work for a summer in Hospice. I truly saw some remarkable things during my Hospice internship. High profile Doctor’s humbled; broken families reunited; husband’s, wife’s, children, partners letting go. It is as raw as a human experience one can have attending to one’s happy transition. Just as no one should be born into life alone; everyone should be afforded a beautiful sunset to their lives as well. Hospice is one of the tools that allows that to happen.

While we have all the legal paperwork in place, having the conversation out in the open allowed us to speak boldly on the ‘what if’s’…’how are we going to handle this or that’…and merely…;just what are we going to do?’ With the second PET scan scheduled for the first week in December, we will have a clear idea what effects of the radiation and chemotherapy had on the insidious tumor. Will our plans become clear at that point? Maybe so, maybe not!

You see, what ever the oncologist tells us in December, we are going to live each day to the fullest. We are going to do what we can do each day and simply move on. We know some days are going to be better than others, yet why wait around for the Grim Reaper? Let the Grim Reaper chase after us. I’ve used this line in a previous post….”It is a known fact that 100% of the people born are going to die.” So as we continue on with our Monty Python Theme of ‘We’re Not Dead Yet” we’ve decided not to ACT the part, but rather embrace it with a life as full and rich as we can have under the circumstances.

Honest Dialogue often brings out the best (and sometimes) worst in people. However without honest dialogue, what then is communication? While there is not a need for Hospice today, we both know where we stand, we both know what is important to us and we both know that when and if the time comes for this wonderful program, we’ll embrace it, deal with it and make it the best possible experience for all of our family and friends who care to share in the experience with us.

While the effects of Cancer are enormous on everyone, we can’t allow the disease to drive the bus. While ‘The Little One’ and I might share different opinions on life after death; one thing that we do know is that while we are on this earth, we are going to enjoy every second, minute, hour, day, month, year we have left. Life is intended to be lived; we move on with faith, happiness and love. While we can’t avoid pain, we can choose to overcome it. That is simply how Herman and Richard (the first) would want that for us, and for all of you as well!

2 Comments

Filed under Caregiving, The Purple Jacket

Whew! What a week…and then some!


The ride to St. Louis  was just a tad more difficult than we expected, yet we made it back safe and sound even if we had to spend one additional night on the road.  As we motored in from Illinois, it is was a refreshing sight to see the Gateway Arch ahead.

As we enter our second week back in St. Louis, The Little One has struggled to regain his strength.  The radiation and chemotherapy has literally taken the wind out of his sails.   Some of the simplest things for him to do often takes so much effort.   We do hope that his strength will come back so that he can enjoy some of the simple things in life like listening to his favorite operas

My routine has changed quite a bit, too.  While it is an honor to be a caregiver, the caregiver has to be mindful of their energy level as well.  There is quite a bit of responsibility that goes into caregiving,  none as important as caring for yourself.   I am most fortunate to have a wonderful job and an understanding organization to work for; I am thankful that my Real Estate clients are patient as well.   We know that we are not in this alone.

At least for now, it is clear that The Little One will not be able to stay by himself.  As he regains his strength we can revisit this issue,  but for now it is clear that he will need  supervision as we move forward with this insidious disease.  This is difficult for him because he is so fearlessly independent, yet we all have make adjustments to the hand that was dealt.

We have another three weeks to wait before we go for the follow-up PET scan.   The PET scan will determine the next course of action; we do know that there will be NO more radiation! By all accounts we acknowledge that the tumor has shrunk; yet the physical and mental anguish of these treatments pale in comparison to what an ordeal this has been for ‘The Little One.’

Martin Luther King once said: “Take the first step in faith. You don’t have to see the whole staircase, you just have to take the first step.”   As we move forward, our faith is made stronger by the love and care of our family and friends as we continue to battle this disease!

 

 

 

2 Comments

Filed under Caregiving, The Purple Jacket

The Future is Now


“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Your time is limited, so don’t waste it living someone Else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs

As I pondered this quote from the late Steve Jobs, I took quite a bit of solace and inspiration from it.  As a caregiver, you freely give your life to someone else while being mindful of your own individuality and needs.    As The Little One heads into his final four days of radiation treatments, our lives are changing before our eyes.   We can’t predict the future, we can only deal with the present.   We intend to live our lives to the fullest and enjoy each and every day we have.

The key here is not to wait until there is a serious illness to have this revelation.  We have been fortunate to have followed our heart and intuition since we became friends.   While our life is different because of the  illness, the illness will not control our lives.

While completing my internship in Hospice a few years ago, I was often observed families who were trying to resolve life long issues at the ’11th’ hour.  We all know that is an impossible task, yet understandable under the circumstances.   We can’t fix the past, yet we should not live in it either.    We can live today and search for tomorrow; that is what life and hope is all about.   Or as Steve Job’s put it…”Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

 

2 Comments

Filed under Caregiving, The Purple Jacket

A Trip to the Hospital


The phone rang and there was a trembling voice on the other end…”They are admitting me to the hospital”  The Little One said.  It was not difficult to hear the fear and anxiety in his voice; the psychological aspects of going through chemo and radiation are often overshadowed while in the mist of the treatments.   Even more unbelievable…his doctor wheeled him to the hospital emergency room herself! 

While no one really relishes a trip to the hospital, this was the best way for ‘The Little One’ to help regain his strength and take a break from the cancer treatments.  The chemotherapy and radiation has zapped his strength;  low white blood cell count and low potassium levels seem to be the culprit in this sordid mess.     All fixable items on the health dept chart when recognized early and treated properly.   We are thankful for the chemo-therapist for his swift action and recognizing that was something amiss.

Try as we might, we just can no longer do these treatments apart.  Independent as he is, these treatments are just not something that you can do on your own.   The issues are enormous;   house and doctors in Florida, job and family in St. Louis.  Yet one thing is certain…home is always where you are when you are with the one you love.

Last Saturday I met with a wonderful geriatric social worker in St. Louis by the name of Jeanette.  The hour I spent with Jeanette was worth its weight in gold.  One of the great lessons that I was reminded of during my visit last week with Jeanette is the need to network and explore expertise other than your own.  (Now is not the time to be a legend  in your own mind.)  There are more options available than meets the eye, it’s just getting to the right resources in time to make the proper decisions.  I am thankful for her knowledge and thankful to Sherrill Wayland from Metro SAGE St. Louis for the great referral.

As I have previoiusly mentioned, being a caregiver is a privileged…Yet in order to be a good caregiver you have to sometimes detach your emotions and explore knowledge and resources outside your area of expertise.  There is no need for the caregiver to go solo!  My visit with Jeannette reminded me that in order to think outside the box, I have to get out of my own world.

As we move into the final stages of the chemotherapy and radiation treatments, we are doing this together…side by side, one by one.  Now that I am in Florida, one decision is firm…’The Little One’ will no longer be ‘physically’ alone to go through these daunting treatments.  We look ahead with hope, with anticipation and most of all…with all your love, prayers and support!

 

 

1 Comment

Filed under Caregiving, The Purple Jacket