Tag Archives: Caregiving

Florida arrival


We arrived safe and sound in Deerfield Beach this week. While we miss our family and friends in St. Louis, We are both thankful to be in South Florida.

This afternoon we are visiting the primary care physician; Monday the cardiologist and Tuesday the Oncologist. The report today at the PCP has been great. There is weight gain, all the critical numbers are good. The doctor is quite pleased, and so are we…This has been a remarkable recovery!

It’s great to share our sunshine with you from the Sunshine State!

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The Heart of Caregiving


Cancer came upon us in one full swoop.  Often times, we get into situations that are beyond our control…’things’ just happen, like Cancer.  Care-givers are often thrown into their roles on a moments notice.  Cancer or other debilitating illnesses do not arrive by invitation, they just show up at your door unannounced. When you think about it, no one wants their loved one to be ill, no one wants to see their parent, spouse, child or best friend ill.  Unfortunately, illness is a part of life that we all have to deal with.  At a moments notice you become a care-giver, without any warning, without any preparation, without any idea of what you are supposed to do next.  All of a sudden you are responsible for someones well-being because of their illness.    Care-giving is a tremendous, rewarding  and sometimes a frustrating experience, yet care-giving has meaning to it that is beyond approach.

While I do not often revert  to my theological training, I am reminded of the Corporal Works of Mercy which are, simply stated, the seven practices of charity towards our neighbor…

1. Feed the hungry: 2. Give drink to the thirsty: 3. Clothe the naked: 4. Shelter the homeless: 5. Visit the sick: 6.Visit those in prison: 7. Bury the dead.

I see the Corporal Works of Mercy as a job descriptions for caregivers.  There is an art in accomplishing these task and  and in accomplishing these tasks, one has to have a caring heart.  Care-giving is not a role for the faint of heart, it is not a role suited for everyone.  Just as we all have different talents, skills and life avocations, being a care-giver is no different.  The tryouts are usually on the fly and without much preparation, however care-giving is bound to have a profound effect on all involved in the experience.

One of the most important components of being a care-giver is that you  have a caring heart.  Sound kind of silly doesn’t it?  But it is true!   How many other ‘jobs’ monitor the feelings inside your heart?  Being a care-giver is not a ‘job’ to those who do it, it’s an avocation.    If  you are not truly concerned about the person you are caring for, then it might be a good idea for you  to take a close look at what you are doing for that person. There is a high rate of burn out in care-giving;  care-giving is an  intense experience where you often surrender your self for the needs of someone else.  Finding that happy balance is truly a slippery slope. The art of care-giving always starts with a feeling from inside heart.

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A Word from The Little One


Tonight at dinner we were chatting about our blog as I have been asked to write an article for a national publication on Care-Givers and Care-Giving in April (more to come on that exciting news).  The Little One wanted me to share these words with you this evening…

“Thank you for reading ‘The Purple Jacket” I hope that in reading Chris’ account of my fight with esophagus cancer  that you don’t give up hope, share in the joy and comfort that you can reap from this wonderful thing, a dedicated caregiver. My siblings have pass on; not only is he my caregiver, he is my partner I would be all alone with out his dedication and love.  Even though cancer has struck me, for the second time, I find joy and compassion being with my partner and caregiver.  Go through life with a strong will, even at those darkest times, there is a light at the end of the tunnel.   Bernard Richard Schiffer 2.5.2012.

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‘The Extreme Patient’


While ‘The Little One’ continues to show marked improvement while recovering from the trauma of chemotherapy and radiation, we move on to another calamity called sciatica. Anyone who has had back pain knows how debilitating it can be, yet to alleviate the pain we must be open to new modes of treatment.

On Wednesday we motored to InMotion Health and Wellness for a visit with Dr. Greg Neff to see if Chiropractic help was in order for his current ailment.  The ‘Extreme Patient’ as we see in this photo opportunity for his building fan club,  (yes KJ, the only thing missing is the Tiara!) decided to ride the wave and try out this new treatment.   Of course there was the debate…”This is not going to work”…’Why are we wasting our time”… etc, etc, etc.  While I try not to roll my eyes (at least noticeably  to others), we just continue on with our friendly banter because that is the way we communicate.

Communication is a funny thing; just like relationships.  It’s funny how the two go hand in hand.  Relationships are built on strong communication and trust.    Yet in communicating his apprehension to Chiropractic care, I knew that this was simply a way for him to let off some frustration.    Sometimes, you just have to let go!

As caregivers, we have to be mindful that while we are there in a supporting role, it’s not our body that  is going through the treatments.   How much can the mind and body take in such a short period of time?  I think that really depends on the person and their ability to communicate their wants, needs and desires.  And in the supporting role, the caregiver has to be mindful that what you might want for your loved one, may not be what they want; what a slippery slope!

It is through honest communication,  built on trust and love that truly reveals the essence of a relationship.  We’re glad that we have (and share) this trust and love as we continue on this journey to better health and happiness.

 

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Goodness Gracious St. Ignatius!


If you have ever had the chance to sit by the beach at night to hear the thunderous waves while smelling the salty wind, you know how relaxing that experience is.  Tonight I write from beautiful Hillsboro Beach; relaxing, reflecting and thinking about the events of the long-awaited results of the day.

“Near resolution of a previously seen hyper-metabolic focus at the gastroenterology junction since the prior study, indicting an excellent response to therapy.”    Whew…that’s a mouth full!  

Of course the conversation with the oncologist did not start out that way as he was startled to see us sitting in the waiting room.   “Bern” he called out; “you look GREAT, I did not recognize you at first!”  (We both look at each other and said…’We’re not dead yet!) If he only knew how much ‘The Little One’ hates to be called, ‘Bern’…but not today!

In layman’s terms, the reports indicates that the majority of the tumor has been removed by the ‘intense’ treatment; what is left of the tumor we hope, will lay dormant for many years to come.

‘Cautiously Amazed‘ is two words that come to mind.

The oncologist recommended that ‘Bern’ live his life as he is able.  ‘Enjoy what you can, do what you want to do.’   You don’t have to worry, doc…The Grim Reaper will have to chase us, we do not intend to grow any daisy’s under our feet.    Out of the woods, yes?  When you think of it, how many of us are really out of the woods?   You know the story…death and taxes;  It’s all in the attitude, don’t you think?  We hope and pray that what is remaining of the (little) tumor leaves us alone, let it lie idle for many years to come.

PET scans are pretty magical and pretty revealing, too…

“There is a large calcified gall stone in the gallbladder.”    Oh Boy…here we go again, another health calamity  to deal with.  The gall stone explains the pain in the back; we’ll deal with this on Monday morning, enough is enough for one day.  Aging gracefully has nothing on us!

One of the key components to age gracefully is to have acceptance of your reality. Fiercely independent most of his life, “The Little One’ knows and accepts that he just can’t do it solo.  There will be some good days, there will be some bad days…it’s just the process of aging gracefully.

Unfortunately for many LGBT seniors, aging gracefully often comes with some difficulty.  In my opinion, our bodies age by our metabolism and what we choose to put in it; our mind ‘ages’ because of our personal experiences and understanding — it’s not all relative.   I’ve never been much of a political person and my theological training has always leaned more to the social side of dogma;  bias aside, should we all not be given the opportunity to age gracefully?

Unless you’ve lived in fear, you never really know what it feels like.  Many LGBT seniors live in fear of being outed, in fear of being mistreated, in fear of the type of care they received simply because of someones personal bias.  Some are fearful that their life long partners will be turned away at their bedside because of someone’s bias.   Think of being in a hospital, nursing home or an independent living center and living in fear because of someones bias?   The closet is no fun.

It’s concerning; having empathy for  bigot is simply a misplacement of morals.

While societal norms have adjusted in recent years, we are all products of our youth.  What is ‘accepted’ today, in most cases was not on the books when we were kids.  Imagine the climate that  an 80-year-old LGBT senior faced when they grew up in?  That is their reality.  We are all a product of the societal norms in which we grew out of; some grow out of it, some over come it, some don’t care about it, some live it their entire life, many are in fear of it.  Acceptance is a two-way street.

Having the experience as a caregiver himself  for  his partner Herman of 43 years for the last 9 years of his life, provided ‘The Little One” with a keen sense of his own needs as he ages gracefully.   (History aside, 43 years together is a feat, no matter what side of the fence you’re on!)     We are fortunate that we have not experienced bias in relation to health care, yet I carry my legal documents where ever we go because you just don’t know what or when you’ll need it.  However the legal documents don’t necessarily open all the doors to the closet.

We  started on this health journey just about a year ago when we had the first flare up with the esophagus while enjoying a meal with a number of friends in Indianapolis.  Over this past year, we’ve learned a bit about ourselves; we’ve  met some new friends, had some friends leave and we have grown closer.  In our diversity, we’ve all had one thing in common and that is  we’ve all aged gracefully,  I hope.  We can’t avoid the aging process, we just do it!

Care-giving will always be an honor; and just like his health…there are going to be some good days and some bad.    It is all about the attitude: every sunset should have its dream.

I think we can see Paris in the Springtime.

 

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PET Scan… Day One


 

Our drive to Florida was uneventful; today all the events begin.

“The Lit20111212-095007.jpgtle One” is now in enduring his second PET scan which will take just about an hour and a half to complete. As we left the house today (sunny and 80 degrees in Florida…what were we thinking four years ago!) we talked openly about the events of this week and how we will go through this process together.

I am amazed at how brave he is as he goes through these tests. For someone who claims to be non-spiritual, he is grounded in his thoughts and accepting in his realty. There is a calmness in him that is truly remarkable: I am honored to be a part of this process.

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Being in a ‘mixed’ relationship (Jewish /catholic) which also happens to be inter-generational (May to December) poses for a lot of interesting experiences and conversations. Yet in all my years of seminary training and ministerial experiences, I have never come across someone like ‘The Little One’ who has dealt with his health calamities like he has.

There are no lamentations, no blame; just an acceptance of the reality of life. For someone like me who has a bad habit of worrying about things that I can’t control, his sense of spirituality has been a lesson that no seminary was able to teach me.

At the end of this week, we will have a better understanding of where this chapter in our lives is leading us. We can’t control the results and you know, that’s OK because the best way to deal with the results is with a clear sense of reality. The serenity prayer comes to mind!

Life is meant to be lived; don’t let love and commitment pass you by, no matter what shape or form it is in.
When there is love, there is a sense of spirituality that is not defined by religious beliefs or society norms. It’s just two people, who’s roads collided to be as one.

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A Night with Opera St. Louis


Wednesday night we had the pleasure of listening to a couple of performers from Opera St. Louis. With ‘The Little One’ being a big fan of Opera, I knew we were in for quite an enjoyable evening.

As we were preparing for the festivities, I heard the ‘The Little One’ say in the distance…”well, this should be interesting”. Curious, I peaked in to the bedroom to see what he was he was talking about; his dress pants!

Once I saw him holding up the pair of pants, I knew exactly his concern. With a weight loss of over 35 lbs, we both knew these dress pants were not going to hug the hips.

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Thank goodness for suspenders!

When he put the pants on, we were both amazed at how much weight he has lost. He has easily lost four pants sizes! (I now need to do the same)

While his weight loss is good for his overall health, they way it has happen is certainly not one of those fad diets you see on TV!

The second PET scan has now been scheduled for December 12 in Fort Lauderdale; we will be heading south in just a little more than a week. We are anxious to see where we stand with the tumor and the only way for that to happen is to conduct the follow-up PET scan.

While the PET scan might give us the physical facts of the tumor; we will not be held back by the results. We are moving ahead with our heads held high.

You see, we might have cancer… But cancer does not have us! We are putting money away for a trip to Paris in Spring of 2012. I have never been, ‘The Little One’ has been three times!

Live each day like it is your last; care for those who are always by your side!

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We Give Thanks…to the Horn Blower!


One of our favorite breakfast nook’s is Chris’ Pancake & Dining (it gives us the illusion that I am cooking!). As we pulled the car up to the parking lot, I stopped the car in front of the building so that ‘The Little One’ would have a short distance to walk to the restaurant. (Four weeks ago he would not have been able to walk on his own to the front door of the restaurant.)

As he was getting out of the car, the person behind us had to blow the horn as we were not moving fast enough to meet his needs. In the classic ‘The Little One’s’ style, he got out of the car and asked the horn blower…’What’s the hurry?’ That exchange reminded me that he is feeling better as four weeks ago, he would not have even bothered with an exchange like that.

While thinking about the ‘horn blower’ and his impatience, I was reminded about what really is important on Thanksgiving… Giving thanks, being present to your loved ones and caring for those around you.

Cancer has taught both of us a lesson that has been invaluable and it comes in one simple word… Thanksgiving!

We are thankful for today, hopeful for tomorrow and want to enjoy as many sunsets as we possibly can. There are so many things that happen in life that are not in our control. Why blow the horn if you are not in danger?

When you give up control, you gain freedom!

The horn I am blowing today is in thanksgiving and gratitude for the things I have, the family and friends that surround us and the continued good health and happiness of ‘The Little One.’

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So…you want to go dancing?


As we move into the celebration of Thanksgiving, we have plenty of things to be thankful for.

‘The Little One’s’ marked improvement over the past four weeks is gratifying; we are cautiously optimistic as we look ahead to the follow-up PET scan the first week of December. While we understand the reality of cancer, we penetrate the disease with love and affection.

When we started this journey in late August, it has ended up being quite a learning experience for both of us. Being separated during the first four weeks of treatments was probably the most difficult part, yet these last six weeks has truly been remarkable. We have gone from a man who could barely stay awake for the entire day, to a man who is up and around on a daily basis enjoying so many of the things that he loves to do, including bossing me around. (Don’t let him know that I let him get away with it!)

For those who have been reading my blog, you know that we like to inject as much humor into our care giving experience as possible. One of the ‘funny’ lines we have been using since day one has been…’Are you ready to go dancing?’ I started asking that question to ‘The Little One’ when I arrived in Florida after ‘The Little One” was admitted to the hospital. We’ve used that question to gauge how he is feeling. It does get a little tired asking someone on a daily basis…’So, How are you feeling’…well…uh…’I feel like s__t, I’ve got cancer’ would be the typical answer. So we changed it up…’Are you ready to go dancing’…’no, not yet but getting closer.’ The funny thing about this question is that we both hate to dance! That is what makes this so much fun. (Two men dancing is weird anyway, no matter what side of the fence you’re on)

In the spirit of Thanksgiving, we are thankful for the time spent together because each day is like extended play. All too often in our busy schedules, we lose focus on our own realty and human frailty. What is here today, can be gone tomorrow.

Take time to ask your loved on to dance… It’s just as meaningful as telling them that you love them!

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November – National Care Givers Month


November is National Care Givers Month!

 We all know some one who is a caregiver, whether we find ourselves taking care of a loved one, know someone who takes care of a loved one, or even if we have heard an inspritational story on the news.

 In today’s busy world it can be easy to forget to show our appreciation to those who make a difference in our lives and the lives of others everyday. As we prepare to celebrate another Thanksgiving, let us give thanks to those who choose to spend their days serving others.

“Appreciation is the highest form of prayer, for it acknowledges the presence of good wherever you shine the light of your thankful thoughts.”
Alan Cohen

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