The 'What can I do, how can I help!' HELP / Thank you List
"Oh, I am so sorry to hear about your husband (mother, sister, daughter, friend ...). Is there anything I can do? Really, just let me know if there's anything you need."
As soon as you hear these words from concerned friends and family, or anything that even sounds remotely like this sentiment, whip out your Help/Thank you List. In the beginning of my husband's illness, I was so overwhelmed just putting out the minute to minute fires of each day that come with caring for the chronically ill, permanently disabled, that I couldn't think of a thing to say when caring friends, who honestly wanted to help, would ask me this question. So I created an on going HELP list. There were some items that were always there, and others that would pop up with each new doctor visit, diagnosis, or phone call.
4.drive to Doctor's (again)
5. take out for a drive and coffee
7. open mail - which quadruples with med bills, med reports, test confirmations condolence cards/letters
8. go to DMV and pick up application for Handicap sticker
9. drop off application, pick up sticker
12. phone visit - call on phone and 'watch' sporting event (Oscars, Emmy Awards, Documentary, 60 Minutes) together - put phones on 'speaker' and visit computer help, office supply run (because make no mistake you are now running a small business, called, 'Full Time Care Giver, Inc.).
13. pick up thank you cards - your creative, artistic friends would probably love to create those thank you cards for
Now, my angels, you can just give or read the list to them and let them pick out some task that they can easily incorporate into their day, week, or month. That way you're getting some much needed help, and your friend feels great because they're doing something to help that is actually quite easy for them to do. A win-win situation, no?
If you can't think of anything because the stress of the week has left you brain dead, check out a sample list below. Feel free to copy. This will also jump start your weary brain and you'll be amazed at how the list will grow. Now there are things that no one will want to do, but that's OK, because now with everyone doing something, there's more time for you to do those left over chores, and perhaps, can we dream, find time to take that bubble bath or give yourself that home facial.
So copy this Help/Thank you List, and feel free to add more 'stuff'.
For instance, my husband was a sports agent with clients like Andre Agassi, Vince Carter, and Zena Garrison, and had traveled to every major sporting event in the world. Each event had their own tradition. Wimbledon (tennis in London) had strawberries & cream. So one friend called, I put the phone on speaker and he and my husband both ate strawberries and cream and watched Wimbledon together. How fun!
To sum up:
1. Create, or copy, a Help/ Thank you List
2. Give the list to the helper and let them pick out a task
3. Send or give everyone a Thank you Card - preferably designed by that artist in your life
4. Use those extra 'found' minutes to pamper yourself.
And, if you can't think of anything pampering to do, go to the entry titled "Time for Self-Care" and copy that list.
Thank you, Thank you, Thank you!
The Show Begins - Get Ready to
Hurry up and Wait!
Now you have your 'baby bag', your emergency outfit, and your cross body info bag (oh you don't have that?. Right I've saved that info for my book, "A Fashionista's Guide to Care Giving"), with a bit of extra cash, cell phone and keys to everywhere. So the next time you have to jump on a plane and fly to New York because your own mother has forgotten who you are, you'll be dressed, organized and unfrazzled. And who does that harried doctor want to spend an extra two minutes with? The caregiver who arrives crazed, half dressed and oh not so fresh, or the caregiver who is calm, organized and ready for an adult exchange of information? Remember, the object is to get as much information and care for your charge as possible from this overworked, understaffed medical system.
Who knows how long you'll be waiting in an emergency room, patient room, or hallway, leaning up against that now comfortable wall, half asleep? Once you've settled your charge, find a comfortable chair, get out your herbal tea and power bar, and give yourself a pat on the back. Worrying right now does no good and it will do you lots of harm. What will happen will happen. You've done your part to the best of your ability. You asked all the right questions, you've done your research, you've gotten that second opinion. Now let the medical community do its thing.
Use this down time to collect all those pamphlets on additional services, that are always on those side tables. Read them and use them. Ask questions while you're waiting for your husband to finish his third surgery in three months. Always ask, "Where can I get more HELP!" What free or low cost services or supplies does your charge qualify for?
Because our next goal is to take care of ourselves. Caregivers are at risk. They become ill and some actually die. I thought they died of a broken heart, but now I know that they died from overwork, no sleep, and stress, stress, stress! This means that we as caregivers have to be actively looking for ways to destress, calm down, pamper ourselves. It is not selfish. It is survival.
Put in place a real system of relaxation: deep breathing during the day, bubble baths when you can, sound machines that mimic a heartbeat, herbal teas that soothe, not just in times of stress, but as a regular part of your daily regimen. Add in foods that boost the immune system as well. Not just when you have the flu, but every day.
And surround yourself with a community of friends, friends, and more friends.
Get Organized (part 2) Mom's Shelf
In "Get Organized (part 1)" I shared with you the joy of creating a supply shelf that was not only functional but beautiful because, let's face it, you'll spend a good part of your day getting the things you need to take care of your charge. So if you haven't had time to read part 1, take a moment and go back to that entry. Our goal is to create more time for ourselves, by not wasting time looking for 'stuff'.
Once I'd created Mom's Shelf I began to organize it even more.
I put labels on the lids or sides of each prescription bottle, with the contents written in bold magic marker, to make finding, and then reading, much easier. Write down what the prescription is for: nausea, pain, blood pressure, etc. This cuts down on mistakes. Most prescription bottles look alike, and in the rush of bi-city travel, and morning brain fog, dispensing the wrong pill from a look alike bottle was a dangerous possibility.
.
The goal is to create a space that's welcoming, and makes you smile, instead of a space that turns you off or stresses you out. Really, how attractive is a bed pan and all that it invokes?
My tower bookcase was purchased from a catalogue (who had time to go shopping), and delivered to mom's front door. The shelf didn't look sterile. On the contrary, the cherry wood color matched my mother's bedroom furniture. It looked like it belonged there. I merchandised it, as if it were an upscale store window display. I added a tiny bouquet of silk flowers to a corner space with a photo of the family, hanging from one of the shelves. I put the prescription bottles in open wicker baskets, the adult diapers in another, and the serious pain killers in a red box, to make them easier to find when the pain appeared, seemingly from nowhere. I created a space that was attractive, user friendly, and functional. 'Mom's Shelf' even made mom smile.
I taped snapshots of her nurses with their names and schedules, and later pictures of her daughters when she couldn't remember who we were. I turned her queen size bed into a hospital bed with soft, cushy wedge pillows for under her knees and another to elevate her head. I placed colorful African kunta cloths on top of the sterilized blankets, so that she was surrounded with the art and the colors she loved.
I purchased a sound machine with selections for ocean sounds, rainfall, birds, etc. She brought it to the hospital and later, the hospice. It relaxed her, the nurses, and me. The nurses always spent extra time in her room (isn't this what we want?). She never turned it off.
Guests actually wanted to take the entire bookcase, supplies and all, especially the ocean sound machine. The hospital supplies became a thing of beauty, instead of a reminder of dying.
Mom was my best friend. Only seventeen years older than I, and the same age as my husband. In the beginning of her pancreatic cancer we talked about everything, and later I talked, and she listened. I miss my mom. I talk to her still.
Y.R. Raven, aka "Raven", former, fashion model (Marimekko, Bogner, Giorgio St. Angelo, Karl Lagerfeld), Broadway show actress/dancer (Bob Fossee, Gower Champion, Tommy Tune, Juan Carlos Esposito, Ken Howard, Meatloaf), and TV talk show host, has been a caregiver for over fifteen years to her husband, William E. Shelton, Jr., first African-American to manage a world class tennis player, Andre Agassi
I am a speaker, an author, a consultant, a fashionista, a wife, a mom, and a full time caregiver.
I am a third generation New Yorker, and a graduate of the Dalton School and Sarah Lawrence College, with advanced degrees from the University of Madrid, Spain. My upcoming book,
"A Fashionista's Guide to Care Giving," chronicles my fifteen years of care giving (at one point caring for both my mother and my husband in two different cities).
The bio I use for speaking engagements reads as follows:
"When both her husband and then her mother were stricken with cancer, within months of each other, one in New York City and the other in Alexandria, Virginia, Raven fell back on her experience in TV Production and Fashion, and pretended that she was coordinating two shows in two different cities. She'd often created Production Books, normally used to produce shows and events. She used this same format to create a Production Book for Caregivers.
It is humorous, light, and an easy read since the one thing care- givers do not have is time. It's filled with practical how to tips and action lists, as well as tips on how to maintain beauty, wellness, and tranquility in your life, indeed have a life, while being a full time caregiver."
This blog is the foundation of my upcoming book, A Fashionista's Guide to Care Giving. Since we may all become caregivers, whether we're ready or not, my first blog is titled "Thrust into Care Giving". It started on February 1, 2011 and is dedicated to my mom my husband. .
Bed pans, blankets, pills, oh my! Let's get organized!
Just like a teeny, tiny little baby can fill up a room with their 'stuff', so to can your charge. My mom had no additional storage space in her New York apartment of over forty years, and her medical supplies were all over the house. That turned day to day life into a treasure hunt, from the medicine cabinet, to the kitchen counter, to the bedside night table, searching for that new perscription, or set of bandages, syringes, blood pressure monitor. or ointment.
I finally purchased a tower book shelf, eight feet tall, it took up only a square foot of floor space, yet I could store eight square feet of supplies. Think virtically.
Having supplies contained on one tall bookshelf, including those travel size bottles and plastic containers the hospital provides, cut out the run here, run there routine of daily caregiving. It also made it easier for visiting and short term caregivers.
In fact, basic organization can actually save a life. Can you imagine dashing through the house to find that asthma inhaler, when every second counts, or breaking your big toe on that sprint to that half moon plastic up chuck pan (appropriated from the last hospital visit) when your charge is leaning over and ready to erupt? It also made restocking easier, because I could see, at a glance, just what was missing and needed to be replaced. Cancer, or any illness, is expensive, money is, or will be tight, and I didn't want to have to rebuy items I already had, but lost in the chaos of the front hall entrance.
I taped a medication schedule in bold print to one shelf, and added a post-it pad and pencil, for quick notes, and the numerous phone messages from the dozens of doctors, nurses, suppliers, and friends, that called each day.
The medical supply shelf should be a thing of beauty. Let's face it. You will visit that shelf every day, starting first thing in the morning when you dole out the wake up pills, and last thing at night when you rub lotion on their hands. Your helpers and caregivers will go there too. So let's merchandize. Make it organized. Let's have some fun!! More tips next time.
