RSDVictims-Spouses Only Group
Does your spouse/relative suffer from Reflex Sympathetic Dystrophy?
Do you have a significant other with RSD?
Does someone your close to and spend alot of time with, caring for them, have RSD?
Are you a caretaker for someone with RSD?
If you answered yes to any of the above, here is the place for you to be, to vent, to talk, to cry, to complain, whatever it takes to lessen the stress in your life, and the feeling that your alone in this.
To join RSDVictims-Spouses
enter your email here:
Or you can also contact Marilyn at her personal email address which is:
kay3391@hotmail.com
MARILYN & JIM WHEELER
DEDICATED TO MY FRIEND
a caregivers story
DEDICATED TO MY FRIEND
THEL LEVINE, MSW, MSG, LCSW, BCD and MY FELLOW CAREGIVERS
Welcome.
Please make yourself at home. Treat yourself to a nice soothing hot or refreshing cool beverage. Have a seat, get comfy and relax.
Caregiver-to-Caregiver, I invite you to share My Story
Some of us are caregivers by profession. Others make the choice. Others become caregivers because circumstances change our plans and for some of us, even our lives.
Thel from time to time would suggest to me ways in which I could make my being a caregiver easier. Thel has the following letters stacked behind her name-an impressive collection of her academic and professional expertise: MSW and MSG, master's degree in social work and gerontology; LCSW, Licensed Clinical Social Worker; and BCD, Board Certified Diplomat, clinical social work. Under the cover of Thel's impressive letters lies a fun-loving friend of 20 years-20 years! Did I say 20?-who is considerate, sensitive compassionate and very observant.
"THIS DAY'S FOR YOU"
Thel invited me to attend The Alzheimer's Association & California State University, Northridge 2nd Annual "This Day's for You" celebration/conference. Little did I know that Thel, together with her colleagues, was a member of the Planning Committee for the celebration. Rarely, if ever, do I hear her "toot her horn." For all those times-months and years-when she was so patient recommending suggestions to help me out as a caregiver, it finally clicked. The timing was perfect. It was a day to celebrate and honor those of us who provide care to a loved one(s) with memory impairment or other disability, be they family or nonfamily members. It was also a day dedicated to caregivers with a focus on renewal, resources and support. And that's how my girlfriend and I left that sunny day as we got in the car to return home to our loved ones as caregivers. Me, to my mom; my girlfriend, to her husband: renewed, full of resources (an arsenal of information in our small vendor-gift shopping bags) and feeling supported and looking forward to next year's celebration.
A continental breakfast was provided for the attendees. I enjoyed stuffing my face with a fresh bagel, which I smothered with cream cheese, and with a freshly brewed cup of java of the decaf genre, I washed down each savory bite. (I like bagels and cream cheese.) I heard voices like wind chimes above the crowd conversations announcing it was time for the celebration to commence. The time had come to enter the auditorium. As I walked into the room, which was appropriately prepared to receive the guests, I entered knowing that I
had a day to myself, which is something that does not happen too often. I arranged for my
Mom's girlfriend to keep her company while I was gone for the day. Something I greatly appreciate. Celine, my girlfriend-whom I have known since the first grade, and that's more than 20 years!-made arrangements with her adult son to care for her husband, his dad. And to illustrate to you how well planned this celebration was, respite care could be arranged for those caregivers who needed someone in their stead, so that they could attend this event. Purty awesome, eh?
As the speakers approached their mark, I prepared my tablet for note taking. Sometime during the presentation of each speaker, I was expecting to hear something-a revelation, perhaps-that would make an everlasting impression on my psyche. And my expectations were not failed. As the Brits say: The penny dropped. Put another way: The light came on.
"Timing" has its way of sucking us into its vacuum where incredible personal revelations like neon signs blink on and off, making sure that we are constantly reminded and aware of what is actually being revealed to us. Even though Celine and I were sitting next to each other, we were separated by our own thoughts of anticipated impartation.
There were several speakers that day. The first speaker had a bright smile and a twinkly soul. Yes, even sitting with five other women at our table at the rear of the room, I felt her esprit gently reach me. It was apparent from the attendees' reception that she captured our attention. That is a very special quality.
Have you ever met individuals who just made you feel special? Who can relate to what you have been or are going through? The following is my written interpretation of how I digested some of the morsels of this entertaining presentation.
HUMOR
Getting the attendees relaxed was a cinch for the first speaker. Her use of cartoons from the ever-so-popular Charles Schultz of Peanuts fame were pitched on the white walls with overheads. At each strip of cartoon, we welled with expectancy as to the punch line. As our guest speaker finally got to the last frame, there was a combustion that ignited the room with laughter. How brilliant it was to start our day with laughter. As a result, we started to talk with one another. And soon, it appeared that each guest seated at each of the round
tables were becoming acquainted with one another. That feeling of relaxation started to settle in. Simultaneously as I listened, I thought: I should consider giving myself some
time off within the environment of my caregiver surroundings with humor.
How could I do that?
You know how we talk about films. Some time ago someone suggested that I rent the video Uncle Buck with John Candy. It was the perfect anecdote. I viewed it several times. I'd just wait for those scenes when I knew I would erupt with laughter. Surely those scenes were predictable. But the anticipation was worth it.
There are plenty of artists in the entertainment industry who have left an indelible imprint of their humor on generations of audiences: Red Skelton, Danny Kaye, Lucy and Desi, Martha Ray, Bob Hope. Their humor is always amazingly fresh! And don't forget Laurel and Hardy, Bud Abbott and Lou Costello, the Marx Brothers, and the list goes on. In the comfort of our home, we can give ourselves some time off with laughter.
Later, I was trying to think of what I could do for two maybe three hours on my own once a week, or once every other week to kind o' change my routine and recharge my batteries, so to speak. There's a restaurant out here in the valley where musicians rehearse midmorning: "Big Band" style. I love it. I can eat my breakfast and listen to the music, and meet and talk with people. The last time I went, it was very eventful. Some gentleman dropped his upper plate on the floor, and his friends asked if I could help them find his teeth! We all giggled, including the fellow who finally found his teeth! We all returned to our seats with a smile, no doubt locking in our memory a cute and true story to tell for years to come.
In order to make a point, everyone has a different style. This is my oxymoron way of putting it: Words were being gently torpedoed to their target: our mind, that remarkable part of the human body which houses non-quantifiable amounts of information in little tiny cellular structures- gigabyte storage facilities of our life's memory!
As I continued to take notes, the room became heavy with an ether of attention. Groups of familiar words started to stream over the audio system, somehow having more meaning:
*We are all in this together.
*You can tell the relationship we have by the time it takes to select a greeting card. (Think about that one for a bit.)
*Get in touch with the child within.
*Listen to my conversation.
*Resign as General Manager of the universe. Man plans, God laughs.
*Focus on what we're grateful for.
And the list continued.
Speaking of focusing on for what we're grateful, I'm reminded of Oprah and her suggestion of keeping a journal in that same vein. From time to time we all make on-the-spot mental notes of grateful moments, positive moments. However, journaling is a spectacular future reference of our past state of mind: a written photograph of our thoughts and feelings.
Here are a few more notations of familiar words:
*Holding on to the past is painful
*Give up the need for a happy past
*Forgive yourself and live in the present moment
*Spin the negative into the positive
I said to myself: Self, these letters that form words and thoughts which may be too simple, too cliché, too redundant, and perhaps obtuse to some, at the right time become powerful life-changing sparks of positive energy.
Add these to the list:
*If you have time to do one thing a day, take a moment of silence. Maybe awake one hour earlier and go for a quiet walk.
*Learn more about sharing your feelings as a caregiver perhaps with another caregiver.
Becoming informed of statistics is one thing. Absorbing the impact of the numbers is another. Our mouths opened wide as many of us said the word "Wow!"
Take a look.
Nearly 1 out of every 4 households in the U.S. (22 million households) is involved in providing care to persons aged 50 or over.
By the year 2007, the number could reach 39 million
5.8 - 7 million informal caregivers provide care to persons aged 65+ who need assistance with everyday activities
5 million informal caregivers provide care for someone aged 50+ with dementia
Approximately 75% of those providing care to older family members and friends are female
The average age of family caregivers caring for someone aged 50+ has been estimated at 46
Family care giving differs across ethnicities and cultures. Regarding different cultures: those who are caregivers who are 18-plus years old for 50+, 29% are black, 27% Hispanic and 32% Asian. Those who are outside of the U.S. feel more obligations to be caregivers.
For the 70+:
*Whites receive help from spouses
*Hispanics receive help from their children
*Blacks receive help from nonfamily members
We NEED respite. We need to take care of ourselves. And how do we know that we need respite? Take a look at this checklist.
1. I worry about my loved one's safety
2. I rush home from outings
3. I'm much more tired than I used to be
4. I've quit doing things with my friends
5. I'm thinking about reducing my hours at work or quitting my job
6. I spend a lot of time helping with eating, dressing, or toileting
7. I wish I had more time for rest and relaxation
8. I tend to get angry or resentful because of all that I have to do
9. I have responsibilities for other people, too
10. Friends or family have quit contacting me
11. I have problems with my own health
One third of caregivers will develop chronic stress-related illness.
IT IS TIME TO.
*Be good to myself. Let new partners into my life, i.e. other caregivers.
*Reenergize. What did I used to do?
*Take pride in my accomplishment as a caregiver.
*Protect my individuality. Care giving is what I do. Keep part of who I am alive.
*Take time to check out your community and/or area resources.
The Internet is almost an endless source of information as to what is available. If you key in "caregiver," don't be surprised at the amount of info that is available.
If we know of someone who doesn't have a computer and is a caregiver in need of information and resources-or hasn't a clue as to what is available-set aside some time together to peruse sites and links. Have a coffee together, or share a bite to eat while surfing the Net, or print some info and mail it to someone who can benefit by it.
Perhaps at this moment you are thinking of sharing your own personal experience, resource, or caregiver tip. You never know. You just might be the light at the end of the tunnel for someone. What an amazing thought!
What I came away with from this conference/celebration is that there are abundant resources available to us caregivers that can help to make our lives a little less stressful, providing us beneficial information. We have at our disposal a huge pool of professionals who understand our needs. And if we are unable to find exactly the resource we want, we can look to reputable organizations of integrity and character to help network our way to a more satisfying life as a caregiver.
ONE MORE DEDICATION
I also dedicate this story to my Mom, who is my story. She is an extraordinary woman of 93 years who still takes pride in her appearance, who believes in faith's reward, and whose beautiful spirit has been slowly rekindling. She is blessed in that she suffers no dementia. We have a wonderful mother-daughter relationship. We strive for better communication. We laugh together. We cry together. We grow together. We learn from each other. We are blessed in that from time to time we take a little road trip to a harbor about an hour or so from home. We'll share a meal. And then after our meal, which includes clam chowder, our favorite, I'll place my delicate, aging Mom in her companion wheelchair and drive her around the harbor where our bodies and lungs are lightly brushed and refreshed by the sea air. Every now and then locals or tourists stop to talk with her, be it just a friendly hello or small talk. Some pass her by with an acknowledging smile. And as she reaches behind her to touch my hand in a gesture of love, we continue our walk-about
observing little children laughing and having a good time.
Although Mom can't see very well, I'll describe the seabirds displaying their artful targeting of loose bait. And as we roll up to one of many displays of vendors' wares, we entertain only the thought of a purchase. Admiring a manicured landscape of flowers painted in nature's bright colors, I maneuver Mom very close to the floral border so that she can appreciate the perception of her vision.
We continue our walk-about, Mom receiving occasional greetings by other elderly. And here come the happy canines trotting alongside their master or mistress. Because this is the weekend, live singing and music add to the ambience of the day. If we are so inclined, we'll share an after-meal caloric treat: a child's size cup of ice cream. We enjoy each and every moment of our day as it comes to a close with a sunset readying itself to spread its colors across the sky. And as our little holiday together softly blends into a relaxing road trip home, we thank God we are blessed with such golden moments and memories. I am always touched by our time together at the harbor. Mom is sure to sleep well that night: enjoying a solid, uninterrupted sleep for the elderly is sometimes difficult.
Yes, Mom is slow to walk. When she announces that she would like to take a short walk, she walks confidently with me. I am careful to give her my adhesive grip that I position under her left arm, while her right hand clutches the grip of her cane.
Mom has arthritic pain, and often I gently massage her painful areas with a cream that gives her relief. Mom has some bone deterioration, but I make sure that she takes her calcium in addition to liquid vitamins and minerals. Mom's hearing has deteriorated somewhat, but, yes, when necessary, I repeat myself for her, and I repeat what others say for her.
Immediately after Mom's first cataract surgery in 1994, our lives were changed-our life-train journey which was previously switched to another track due to the Northridge earthquake, was once again switched to yet another track, without notice: Mom became one of the many who suffer from macular degeneration. Her bubbly personality had lost its effervescence; her spirit ripped to shreds. I made the decision to be Mom's caregiver. I was not prepared for the challenge. And for sure, Mom was not prepared for what lay ahead of her: at her age an emotional, painful readjustment to life. Our future as we each saw it was changed mid-track. But in spite of it all, Mom has continued to brave her way on a daily basis to appreciate life-a profound example for me.
We remind ourselves that living in the past will not let us move on to our future. (Thank you, Joel Osteen.) And getting stuck in a negative time warp has no redeeming value, in the natural or spiritually.
I work at home so that I can take care of Mom. Just as with you, I arrange for medical appointments; go grocery shopping; do the washing, cleaning, provide for a well-kept home; prepare meals; include in my schedule a time for Mom's short walk or a stroll with her in the wheelchair in the sun and fresh air-well, we all know the drill. We also know that care giving is an involved and time-consuming vocation. In many cases care giving requires a more physical type of energy on a daily basis. Yes, I hear you: it is also a job. We are always on the alert to the needs of our loved one(s). Our checklist may exceed that of a pilot before lift-off: Is it too hot? Is it too cold? How long do we plan to visit? Did we bring the water and pack a snack? Did we take the medications, pillow, hat, blanket, walker, cane, and wheelchair? The list goes on as well as the stories.
The unexpected has a way of unfairly imposing dramatic changes in each of our lives, perhaps placing us in a web that could make us vulnerable to an uncertain future. But Mom and I choose to live in the present with our focus on a bright future. As Mom's caregiver, I provide, with love, her daily care, the care upon which she depends, and that she richly deserves.
To all of us who have chosen to include this special vocation in our lives, we must continue to remember that we are not alone. And we must love ourselves, for we cannot give what we do not have. Love is the sustaining power in all of us. It is pure. It is unselfish. And Love always returns to us in ways we least expect.
When Mom takes a nap, goes to bed, or when there's a break in my home chores and work schedule, I use these moments as my quiet time to jump on the computer keyboard to write. And now, it is time to go. I have to return to my routine.
Caregiver-to-Caregiver, thank you for being my guest, and thank you for allowing me to share My Story.
Sheila
Permission granted to forward in its entirety only
