Posted in Caregiving

Caregiving Near and Far

Welcome to Caregiver Friday!!

Growing up I remember the stories my parents told of where they grew up in Williamsburg, Brooklyn.  They shared stories of the neighborhood, where they lived, and who they lived near.  It was common for families to live within blocks of each other making support an easy thing to accomplish.  Knowing that there were family and friends within blocks eased everyone’s mind because love and support was close.  Times have changed and we’ve become a very mobile society, so what does that mean for us?

The job market has enticed many people away from their place of birth with the hope of a promising career.  I moved away from the east coast three years after I graduated from college to go to graduate school.  No matter the reason we leave, we often leave our families behind.  So what happens when a loved one needs our support?

One of the greatest tools for long-distance caregivers is technology.  Although you may not be there to provide the hands-on caregiving, you are available for emotional and spiritual support.  Technological advances like Skype, or FaceTime on your smart phone give you the chance to see you’re loved one while speaking to them.  Texting and email have certainly allowed long-distance caregivers to stay in touch with their loved one as well as the medical team who is caring for the person you love.  What about the day-to-day caregiving responsibilities?

When I was a HIV/AIDS service provider, I know that many who were diagnosed with AIDS, especially early on, returned to their hometowns to receive care from family members.  There was a huge migration of people from the two coasts who moved back to their more suburban/rural towns to receive love, support, and care from their families.

Depending on the amount of care needed a in-home caregiver can be hired to care for the physical needs of the person.  This was the choice may family made for my grandmother.  It was important for us that my grandmother remain in the home she’d lived in for over 35 years.  Having the continuity and safety of the home she had lived in for so long was crucial for her quality of life.  My parents lived an hour away, but my father often worked in the area and would stop by several times a week to visit and then my grandmother would come to my parents’ home for visits.  We were fortunate to have a live-in caregiver who was attentive, loving, and compassionate…but that may not be an option for everyone.

It’s possible to hire a care manager who will make an assessment of the person’s needs and the comes up with a care plan.  Often this entails arranging for community services to come in and provide help to the person who is health challenged or injured.  There is the option of a multi-level care facility.  These living communities go from independent living, to assisted living, to 24 hour nursing care.  It is often quite expensive so it’s not an option for everyone.

We’re going to have to come up with ways to handle the issue of long-distance caregiving, especially as our population ages.  The statistics show that because we’re living longer, many will have illnesses in their advanced years.  If you’re a long-distance caregiver and have strategies to share I’d be grateful.  It’s something we have to address unless of course we all begin to migrate back to our families.

 

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Don’t Be Afraid of the Dark

Last night I indulged in one of the best reality shows on television, “So You Think You Can Dance”.  The show is up to the top 10 dancers and now these dancers, who were dancing with each other, are now dancing with an all-star from a previous season.  The stakes are higher as they begin to compete hard to win top honors.  One of the pieces last night was dark in its theme.  The piece was about a woman who was having a nightmare, and the male dancer (Rickie), the contestant, was the nightmare.  He danced the piece beautifully and then I starting thinking about what it means to be afraid of the dark.

In psychological terms we often talk about the “shadow”, the part of ourselves we push away because it’s not pretty, but it’s important to unlocking the clues about our true nature.  The dark doesn’t have to be a bad thing because for many it prompts us to take action, moving us closer to our desired results.  Anything that gets us up and going toward health and healing is a good thing.

How can the “dark” be a good thing?  This week I spoke with a client about a family situation regarding divorce.  The client prefaced the story by stating I shouldn’t be worried about possible negative actions; it’s only talk.  The client began to speak about a revenge fantasy.  I’m totally on board with revenge fantasies because they come from a place of authenticity in the soul.  It allows you to fantasize and release the negative energy that might be holding you back from getting better or well.  I can’t tell you how many people tell me they don’t have revenge fantasies, until they are given permission to have them and that they are good to have, then the flood gates open and the revenge fantasies flow.

The diagnosis of a chronic or other life-altering illness propels many of us to the dark side.  The anger that often comes with the diagnosis of a health challenge sets these dark thoughts in motion, but releasing them allows the body to restore its sense of balance.  It’s like when we sweat allowing the body to cool down.  The dark thoughts/revenge fantasies allow the body and soul to cool down so you can focus on health and healing.

Remember, that to some degree we’re all afraid of the dark; you just need to create a night-light to help you find your way!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Puzzled

From a very young age we’re given puzzles to play with.  When we first start out the pieces are large and there are only a few needed to complete the puzzle.  As we get older, the puzzles become more complex.  There are lots of types of puzzles and they are for all ages.  Think of Highlights magazine for kids and the puzzle where you find the hidden objects in the picture.  As you get older perhaps you did word searches or crossword puzzles.  Obviously the hottest craze in the past few years has been Sudoku, not only as a means of entertainment, but as a way to keep the brain engaged and active.

Puzzles are intriguing and ask you to become a problem solver.  They require you to be inquisitive.  Your diagnosis of a chronic or life-threatening illness is not just a physical challenge for you and the medical team; it’s a mind challenge.  You’re being asked, invited, or demanded to create a new mindset for how you’ll live your life.  You’re body is inviting you, on your journey to wellness, to be resourceful in how you approach living this “new normal”.  One of the things I know and have witnessed is that those who enjoy puzzles are tenacious and show perseverence…how do you stack up in this arena?

One of the things about puzzles is that as you do more and more of them you begin to see patterns.  Pattern recognition is what allows us to learn complex ideas because we build upon what we already know and add to it.  It’s about having a good foundation of the puzzle’s rules and then tweaking it with each new twist and turn.  Another quality of those who enjoy doing puzzles is that once they “master” a certain level of difficulty they begin to seek out harder puzzles.  I’m not recommending that you become sicker to up the ante of your mind challenge, but you can certainly take on more complex questions regarding your quality of life.

How are you going to make the pieces of your life puzzle fit together?  What will you do to keep yourself engaged in the puzzle and not let it defeat you?  Puzzles can be a team effort so who will you enlist to help you solve the mystery?

 

Posted in art and healing, creativity and health

What’s Your Sign?

Welcome to Art and Healing Wednesday!!

When I first went back to school a few years ago, the first class I took was “The Nine Muses” with Angeles Arrien.  If you don’t know Angeles Arrien, she is one of the most inspirational cultural anthropologists and teachers in the country if not the world.  She’s insightful, inspiring, and one of the best storytellers I’ve ever been privileged to hear.  It was interesting to me that prior to taking her class on the Nine Muses, I had read her book “Signs of Life: the five universal shapes and how to use them.”

Early in the book Arrien quotes Isamu Noguchi, designer of the Unesco Gardens in Paris.  I want to share his words with you:

     I don’t think that art comes from art.  A lot of artists apparently think so.  I think it comes from the awakening person.  Awakening is what you might call     the spiritual.  It is a linkage to something flowing rapidly through the air, and I can put my finger on it and plug-in, so to speak.  Do artists need a spiritual way or do they need art?  You can say that one is the same as the other.  Everything tends toward awakening, and I would rather use the word awakening rather than use the word awakening than a word that derived from some system- because there are so many systems. (p. 18)

The book goes on to identify the five universal symbols and explains that we all have a primary symbol that is in our consciousness.  After ranking the symbols, Arrien goes on to share her thoughts on how the order of the preference/prominence of the symbols impact our conscious and unconscious processes.  The five symbols are: the circle, the triangle, the square, the spiral, and the cross.

Think about which of these symbols you’re drawn to the most.  Consider where and how this symbol shows up in your life?  Learn how these symbols influence your experience of this life.  This isn’t about creating a masterpiece.  Recognizing shapes and symbols is an easy and fun creative process.  It’ s something you’re probably doing without even realizing it.  Look at things in your home.  Look at the patterns on the fabric of our clothing.  Look at your jewelry and see what shapes/symbols are present.  These are small clues that can give you unprecedented information.

I encourage you to read Angeles Arrien’s books, but going one step further, if you have the chance to take a class, attend a lecture, go on one of her retreats, I highly recommend the in-person experience.  She is truly a treasure.

 

 

 

 

Posted in coping with chronic illness, coping with life threatening illness, Living with Illness, newly diagnosed illness, overcoming adversity

This is My Life…Now

Being diagnosed with a chronic or life-threatening illness is all about transition.  It entails shattered assumptions about what you believed your life was supposed to be moving forward.  It entails a shift in thinking, not to a bad place, but to a new place.  Making the shift may take some time, but anything worth having is worth putting in a little elbow grease and dealing with the learning curve.

I was diagnosed with an auto-immune disease as a kid so I’ve always known that there was something different about me physically than others.  However, what I wasn’t prepared for was a secondary diagnosis about seven years later.  I was part of a campus organization that raised money for kids charities.  One of the events we held was a 24 hour dance marathon.  I was participating in the dance marathon and noticed that as the marathon progressed my feet were in more and more pain.  It wasn’t the type of pain that comes with your shoes being too tight, or just from being on them a long time.  It was a sharp and focused pain.  I finished the marathon and took to bed for a couple of days thinking it would resolve itself; it did not resolve itself.

This began my consultation with doctors and each doctor would give me a different explanation.  I remember the day that rheumatologist said that I was one of 3% of psoriasis patients that get something called “psoriatic arthritis”.  I went on a course of anti-inflamatory medication and it helped, but I still woke up every morning with pain.  In addition to the pain, I was also taking a new set of medications and had to watch for the side-effects that accompanied the new medications.  It was a shift for me because I now had more than one health challenge to keep tabs on and they were impacted by each other.

There was a day of surrender when I said to myself that “This is my life…now”.  I would always be at risk of being incapacitated by pain and the possibility of being unable to walk. I would always have a new specialist in my life.  I would always be walking the tightrope balancing the triggers of both diagnoses.  If I took it as a bad thing I’d be giving myself the license to be miserable forever.  Understanding that “This is my life…now” was freeing.  It allowed me to explore new treatments both traditional and complementary.  Once I embraced the statement, “This is my life…now” I felt more in control of my life and my illness.

How will you make this statement part of your life?  What steps do you need to take to embrace this paradigm shift?

Posted in Caregiving

Does Caregiver Really Capture the Essence?

Welcome to Caregiver Friday!!

As I read pathographies (books written by those facing an illness), I’m very conscious of the words people use to tell their stories.  It’s the subtle nature of the words that can impact the meaning, both on the storytelling side and the audience.  How are you perceived as a caregiver based on the story you tell?  How do you perceive yourself?  How would you like to be perceived?

It struck me last night that we use the word care-“giver”.  I can’t tell you why but that word has been leaving a sour taste in my mouth.  It’s not that I don’t honor the care”giver”, but I think that when we use this word the individual who is the care”giver” loses some of their personal power.  Unfortunately the only example I can give is training my dog.  My dog  Bella is an Australian Shepherd and Husky mix.  It’s hard to believe that she’s better at retrieving than my retriever, but it’s true.  When she fetches a toy and I want it back I ask her to “give” it to me.  It’s a command.

I feel the same about care”giving”.  It makes it sound like the individual providing care has been stripped of their personal power and have been given a command.  All the care”givers” I know and have met over the years provide care out of love and compassion.  The care they offer is a gift.  So what would happen if we shifted the term from caregiver to careofferer?  I know it’s a mouthful and perhaps it’s not the exact word, but the sentiment is more important than the actual word.

The idea that someone, you the careofferer, offer physical, emotional, and spiritual support is an offering.  You can’t force care upon someone unless they are incapacitated.  I believe that by looking at this as an offering it empowers you, the care provider, to come from a place of nurturance and partnership, not duty and obligation.

They say that little things mean a lot and I believe that making this shift, maybe not in our daily vocabulary, but in your heart and soul could be a monumental shift in your experience providing care?  What are your thoughts on the matter?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Words of Wisdom From Sex and the City and Carrie Bradshaw

If you have cable television you can’t help but see the listings for “Sex and the City” about 20 times a day.  It has become a cult-like show filled with little quips that are fun and funny.  Even more surprising are the little bits of wisdom that pop up when Carrie Bradshaw sits in her apartment writing her newspaper column.  I have to hand it to the writers because they ask questions that are universal.  The questions the writers pose are not just for relationships, but can be converted to address any of life’s situations.

The other evening while watching the show Carrie had an epiphany.  The question she asked was, “Why are we so fast to move from confused to Confucius?”  I got to thinking about this question and how it applies to you following the diagnosis of a chronic or life-threatening illness.  We live in a world where we have to make sense and meaning out of everything that happens to us.  Haven’t you heard the phrase, “Everything happens for a reason”, as if we’re supposed to be able to create the chain events that leads us to the promise land as to why you were diagnosed with a health challenge.

Does having that Confucius moment make it easier to deal with your health challenge or does it create a chasm between reality and fantasy?  Is it important to have those moments of confusion prior to being enlightened?  We’ve all heard people who have been diagnosed with an illness speak about how the diagnosis was a gift; that’s the Confucius moment.  Did they get this enlightenment directly after leaving the doctor’s office and sitting under a tree?  Was there any confusion prior to the light shining down upon them?

Years ago I worked at a drug and alcohol outpatient program.  One night a young man, newly sober, talked about how confused he was feeling; as if this were a bad thing.  A member of the group who had been sober for quite a while stood up and applauded this young man.  He explained that as long as the newbie was confused he was still teachable and that would serve him as he engages his recovery on a deeper level.

The confusion we all have felt following the diagnosis of a health challenge gives you the freedom to ask questions.  It allow you to be curious and experience your exploring nature.  The confusion allows you to gain experience from those who have walked this path before and then the Confucius moments pave the way for those who follow you.

You can have both confusion and the Confucius moment; they are not mutually exclusive.  There is a process for each and I hope you find your own way on your journey to wellness!