Caregiver Stress Syndrome

Decided to put "After the Fall" on hold and tackle　
Caregiver Stress Syndrome

My background is in theater, fashion and TV.  I was used to being in different places with different sets of people several times a day and every day of the week. The job of caregiving used every skill I had ever learned.  I surmised that the only way I could keep my sanity and really be of help to the two most important people in my life was to treat this challenge as if I was producing two shows in two different cities simultaneously.

Have you heard stories of caregivers who, once their charges had passed away or gotten better, they themselves developed symptoms of cancer or other autoimmune diseases? Or of caregivers suffering from depression, anxiety, insomnia and chronic fatigue? In fact some doctors have likened the condition to post traumatic stress syndrome.

Here's my non medical theory:

We caregivers extend so much mental and physical energy on the patient, that their is little left for ourselves. We know that prolonged stress compromises the immune system. A lowered immune system leaves us open to disease. A foggy, sleep depraved brain leaves us open to accidents and poor choices. Exhaustion leaves us little energy to feed the brain or recharge the mind with the things we love like art, music, dancing, or just having tea with friends.

And then there's the guilt. No matter what I was doing for either of my charges, I always felt guilty that I was not with the other charge. Taking time for myself meant taking it away from them. And so I rarely took time. I do remember leaving my mom to fly to my husband. While in Virginia, I called mom, just to see how the nurse was working out, even though I had just seen her earlier that same day. I was halfway through the conversation when I realized that she wasn't quite sure who I was. "It's me, your daughter, Raven". She said, I have to see you to know who you are". I was back on a plane that same day. We'll deal with the financial tole later.

Then there was the day I checked my husband into the hospital in the morning, flew to New York, and checked my mother out of the hospital that evening. By then the exhaustion was so overwhelming that I had to write every moment of my days down in my book, or else I wouldn’t remember the date, the time, or even what city I was in, not to mention which group of doctors I was talking to regarding which cancer. My book and my cell phone were my lifelines.

My purse was packed for caregiver survival: Not the survival of the jungle, but the long hours in hospital waiting rooms,  and airports.

My Survival Purse:- Cell phone with extra battery and charger
- High protein snacks and water ( my Sunrider herbal foods saved my life)
- My own prescriptions (we have medical issues too, you know).
- Toiletry bag packed with travel size soap, deodorant, toothpaste, etc.for quick bird baths in hospital bathrooms while waiting for the expensive Specialist (who usually arrives for his one minute consult, just when you've finally left for the day).
- And my notebook with the names and telephone numbers divided by city, of both sets of doctors, nurses, caregivers, prescriptions, hospitals (nurse's desk), hospital rooms, hospice, housekeepers, nearby friends, family and neighbors.

The most important thing I've learned as a long term caregiver is this:  Caregivers have to take care of themselves, first. No guilt, no excuses.  Plus lots of self love and gratitude that we have the strength to take care of someone else.

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The Importance of Image & Self Esteem (part 2)

Image & Self Esteem (Part 2)

Now let's create that positive, take charge image. The next time your charge is asleep, in the hospital, watching TV, or zonked out on those oh so fabulous pain pills, plan ahead to do something! Instead of collapsing into the nearest chair (gosh it looks so good) start your pre production (that's 'getting ready' in layman's terms).

Pre-Production

1. Put together an entire out fit (or two) that is neat, comfortable, clean, and fits (so many of us revert to baggy clothes, just because we're exhausted and they seem easier to wear). Pick a fabric that does not wrinkle, so you can travel in it and sleep in it if you have to. Do you have an outfit, scarf, etc., that makes people smile? Let's wear it! A positive, first impression/response from the cast (your medical community) is your entree to better service for you charge.

2. Hang the entire outfit on two or three hangers that you tie together along with all undegarments, accessories, shoes, jewerlry, etc. in plastic bags. Put everything in a hang up bag. Pretend you're going on a cruise (we wish).

Now you can dress in less than two minutes, because everything is in one place. You won't spend time looking for that elusive shoe. You'll beat the emergency response team with time to spare.

3. Everyday, no matter what, find five minute gaps in your caregiving chores to shower, shave, or wash your hair. I know it seems impossible, but if you've decided ahead of time that you'll use this free time wisely, you'll get started right away, instead of collapsing into the nearest chair. You'll not finish any task all at once, but you'll do a little each time until it's all done. It takes me a day to give myself a manicure, with all of the care giving interruptions (two days for a pedicure).

4. So during your next free moment start that manicure or pedicure. These take time, but if you decide that all day today is manicure day, you'll do it in stages. Men as well. Remember, the sum of all these parts presents the positive groomed image, which evokes a positve response, which in turn makes your job as a caregiver easier and much less stressful.

The Importance of Image & Self Esteem

　
The Importance of Image & Self Esteem

We all know that when we look good  (groomed, nicely dressed, fresh from a shower), we feel good. In fact we feel much better. But when you're a full time caregiver, you barely have enough time to sit down and have a cup of coffee, much less, shower, put on makeup, shave (for the men), and present a pulled together image to the world.

We also know that it is human nature for others to react to how one looks. It's not fair, it just is. So the groomed, well dressed person often receives better treatment: men will hold open a door, strangers will smile, children will tell you ' you smell good'. Doctors, nurses, technicians, etc., the community you have to deal with on a regular basis, are people too. And they will react to you in the same way.

So, if you want a better room for your charge, or if you have more questions or concerns, and two caregivers show up, equally needy, who do you think will get the most attentiion and the first response?

Now Image is not only important for evoking positive responses, a positive image will also make you feel good. It will give you a sense of power and control. You will more likely interact and ask for services or ask questions, when you feel at your best. If, when the next emergency arises for your charge, you dash out of the house in you pj's, with mussed hair, dry chipped nails, and any pair of ugly shoes that happened to be near the front door, you may not get any response, or attention at all. Is this fair?  No, but it is human nature.
Not only will the 'community' (this includes anybody and everyone that can help you with this crazy period of your life) react to you positively, your charge will also do the same. Sick, disabled people enjoy beautiful things and pleasing scents too you know! Sometimes it's not on a conscious level, but it will be there.

But who has time to present a well groomed, take charge, fragrant Image, when you barely have time to brush your teeth? Actually I'll explain how you can do this and how it will, in the end, save time.　

How am I going to do This?!!! part 2

　

How am I going to do this?!!! (part 2)

And there was the answer right in front of me.  What if I attacked these challenges  the same way I approached Fashion Show and TV Production? Yes! Pretend that I’m producing two shows in two cities simultaneously. Albeit two of the most important shows of my life. The casts would consist of my mother in New York and my husband in Virginia. The crew would be the lawyers, doctors, nurses, caregivers, hospice, etc. The scripts would include each of their cancers, including hospital addresses, meetings with doctors, wills, pre and post care treatments.  The props would include prescription drugs, syringes, adult diapers, bed pans, and wheelchairs. There would be letters and updates to my sisters: one a single mom on the west coast with two kids and one who lived in New York but managed to be too busy with one thing or the other, whenever I asked for help. Yes, I was on my own, but producing, coordinating, planning was so comfortable to me. It was like breathing.

Plus, I'd graduated from The Dalton School, and won a scholarship to Sarah Lawrence College.

Those schools taught me independent thinking, creativity, and leadership. These all women schools, at the time, meant that we girls were in charge of everything: the school newspaper, the athletic club, the math group. I was accustomed to being a leader.

I could feel the control coming back.  So I bought a leather bound journal (production book), divided it into two parts and starting producing my shows.

I fleshed out the characters: their illnesses, diagnosis, needs. I wrote pre production treatments: what services did I need in each of the cities with telephone numbers, fax numbers and addresses of every doctor, hospital, car service, food service, and treatment center. I wrote out my crew list: caregivers, house keepers,  and helpful friends.

I added a month at a glance calendar to the front of the journal and kept all appointments in red for my husband and green for mom so I could easily see which city I had to be in and when. No fear of double booking myself for two appointments in two different cities. Just the way I’d organized my calendar when I was modeling in Europe, and was often in several cities in the same week. Yes, this was much better. I even inserted notes to meditate, breathe, or sleep while I was flying between cities, waiting in emergency rooms, or standing in hallways.

Now, what am I going to wear?

How am I going to do This?!!!

　
　
How am I going to do this?!!!

What happens when the two most important people in your life are diagnosed with cancer, miles apart from each other?
　
When I was faced with the challenge of caring for the two most important people in my life, sick with cancer, in two different cities, I had two choices. I could fall to the floor and wail (which did briefly cross my mind) or I could ask myself this question: How am I going to do this?　
I was in the middle doing a marathon of TV tapings for Image & Style, my public access show. Months earlier I’d called my producer to tell him about my husband's ‘illness’ and my need to take time off from taping. The show was a hit. It had won ‘Best Producer of the Year Award’ and I had a prime spot at 9 PM two nights a week, and he didn’t want to break the momentum. The idea was that I’d tape 2-3 shows a day, get several months worth in the can, and then I would be free to attend to my husband.

Two days later my mother called and I had to call him back. "You’re not going to believe this, I don’t believe this, but my mother has cancer too. I’ve got to leave now. We’ll just have to put the show on hold".  It really wasn’t so hard to make that decision. These were the two most important people in my life and they needed me. More importantly, overwhelmingly, I needed to be there for them. Good Heavens! There was so much to do.
　
I’ve been in theater, Fashion and TV for my entire working career including seven Broadway shows, numerous commercials, High Fashion Modeling and Fashion Show Production.
　
Cancer is not only a word, but the loss of control. I was accustomed to being in control. How could I get some control over all this. My husband had just gone into the hospital for yet another surgery, and now my mother was on the phone telling me she had pancreatic cancer. I’m the oldest daughter and the one she’d always depended on to help around the house, help with my younger sisters, brainstorm problems, and confide in. And now she seemed so lost. She needed me.
　
I called my cousin, Vicky who just happened to be in town with my Aunt Ella, and asked her if she could please pick my husband up from the hospital and stay in my home to care for him, while I flew to NY to put my mother into the hospital.

The bi-city commute was on: three days in New York and three days in Virginia, with a day to do laundry and repack my bags.

No sleep, forgotten meals, mental and physical exhaustion. The baggage handlers knew me by name. Flight attendants asked me how long I’d been working for the airline.

But there was so much to do in both cities, and I was so tired, so drained, that I was starting to have lapses.
I couldn’t make informed, coherent decisions. I felt myself losing control. I needed a new plan. And there was the answer right in front of me.

Thrust into Caregiving

Thrust into Care Giving
When you become a caregiver, you usually don't have a say as to the timing. You can't put it off until you've finished organizing your sock drawer, or cleaning out that storage space. Noooo! One day you're tooling along tackling the usual stressors of life, when, bam, your Aunt Nellie falls and breaks a hip, or your uncle Jack starts wearing two hats, two pairs of pants, and swears he must go visit, right now, his best friend, lover, pet, who you know for sure passed away decades ago.
And bam, you're a caregiver. Or your loved one goes in for a routine procedure, and the doctors, instead, find cancer, and bam, you're a caregiver. It doesn't matter that there is an extended family of hundreds, no one else seems able, available, or healthy enough to take on the task. And you simply can't let Aunt Nellie:
A. go to the emergency alone,
B. deal with complicated doctors and medications, when she's frightened and vulnerable, or
C. go home to an empty house with three flights of stairs.
Some people are born with that dominant caregiver gene. They know intuitively, just what to do. They seem sure, organized, and confident. Others can't even watch a movie about care giving without getting a panic attack. But even if you do have the gene, you will still have to be especially careful to take care of your health, stress levels, and sanity, because natural caregives seem to be called on more often than non gene dominant caregivers, to do their thing. The risk of becoming sick or dying yourself is increased. And if you don't have that gene, the odds are, if you have any friends or family at all, you will be a caregiver at some point in your life, and your risk of compromising your immune system and becoming sick, or dying increase. So all of you may want to get out that highlighting pen and pay close attention to the chapters ahead. I'll share with you how I not only survived, but thrived as a fifteen year veteran of care giving.
In my family the caregiver supreme, was my grandmother. If someone was sick, anywhere in the country, grandma was called in. The fact that she was a Master Herbalist and the Shaman of her tribe may have had something to do with this, but we all can't be Shamans, and we'll all probably be caregivers.
I adored my grandmother and spent weekends with her shopping the Asian food market in New York, watching her buy the herbs that we would later clean, boil, push through cheese cloth, or dry, in preparation for the many clients of all nationalities that used her services. My grandmother was a Master Herbalist, part Asian, part Native American, she could cure just about anything with her herbs. As a ten year old, I found this fascinating. By the time I was twelve I knew exactly what to do for a headache, a nose bleed, or cramps. I knew how to treat everything from an open wound to constipation. She taught me which herbs diminished migraines or lowered blood pressure. In retrospect, I believe she saw in me a healer and natural caregiver. She must have been right. Why else have I spent the last fifteen years as a caregiver to my husband? We'll talk more about that later. But for now: What's the first step? First, make sure your charge is safe, and relatively comfortable, checked into a hospital if necessary, then immediately call the nearest organization that has services for in firmed people and caregivers. It may be your local Council on Aging, Veterans Administration, Medicare, or AARP.
Ask them to send you pamphlets of all of their services, and I mean all. Even if you don't need them now you could quite possibly need them later.
Then stay tuned for my next blog: How am I going to do this?