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For the Caregivers

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I'd like to take a minute here and talk a little about the caregivers.
Being a caregiver of someone with a chronic illness is very demanding. It's stressful - physically and more so, emotionally. Caregivers spend so much energy trying to make their loved one feel better, scheduling multiple appointments, synchronizing schedules, taking care of other family members and household responsibilities, and some have to hold down jobs on top of it.
For me, I think the hardest part about being a caregiver is when my daughter is hurting and there's nothing I can do to take the pain away. Sometimes I can't even give her a hug or gently hold her in my arms because my gentle, loving touch can cause more pain. Second to that is when we're at a doctor's appointment and the doctor isn't listening to what we have to say. When we're being treated like we need psychiatric help. 
This is usually the scenario... The doctor(s) don't know and understand what RSD truly is so they treat "you" (family & patient) like you're nuts (or attention seekers, etc.) because they don't want to deal with you. Your case is too complicated for them and this is their way of getting rid of you. If a simple pill or surgery can't fix you quickly, they brush you off. Not all doctors are like this, but in my experience, you really have to search for a doctor that is knowledgable about RSD and is willing to stick with you and help you - even when it gets tough. Just having your doctor sit there and listen to you, really listen to what you are saying, feeling, etc. goes such a long way. Even if the doctor doesn't know what to do next to help your loved one, hearing them say exactly that while being empathetic to your situation means so much to the patient and the the family too.
Speaking of this, I'm reminded of a friend of mine whose daughter has RSD. This girl has had *many* treatments/procedures in order to find pain relief. Not long ago, the doctor they have stuck with was at a loss for what to do next and the family felt like they were being "brushed off" because he had nothing more to offer. I know doctors get frustrated by this disease, but this girl and her family felt like they had lost an old friend. They had a doctor who was very good with trying various treatments, bedside manner, you name it - someone they had come to rely on - suddenly leaving them feeling like they were being brushed off. It's NOT all about treating the disease, it's also VERY MUCH about treating the patient and their family!

Coping Strategies:
1. CAREGIVERS ONLY - How do YOU, the caregiver, cope with RSD?
~ What is your advice/tips to new caregivers "out there?"

**** How do I cope?

I read everything I can so that I can feel empowered.  Then I try to put it out of my mind so I can sleep at night and get through the day.
I count my blessings every day.
I remind myself  that eventually, “this too shall pass”
I remind myself that as long as my child is alive, there is hope.
I remind myself that I survived other tragedies.
I wait until my child is asleep and I cry my heart out.
I talk to everyone I know about RSD and the symptoms in case anyone has ideas, e.g., eat a banana every day to prevent leg cramps.

2. Re: THE CHILDREN - What do YOU, the CAREGIVER, do to help your RSD child cope?

**** My son has had RSD for seven years; he is 24. 
How do I help him cope?  It has changed over the years.
I have listened while he cried out in anguish, angrily questioned God, cursed doctors, and felt sorry for himself.
I have rubbed his legs, back, neck and arms.  I have also used an electric massager on those same areas.
I have bought him massagers (electric and manual), braces, specialized clothing, crutches and a wheelchair.
I have stored the wheelchair and crutches where they are available but out of sight.
I have accommodated his changing lifestyle as he has become more religious.
I have remained calm when he has discussed suicide with me.
I have held my tongue when I wanted to offer help or advice, so that he could develop independence.

 ~ Mother of 24 year old son with RSD.

So that's the second hardest thing about being a caregiver for me - when my daughter is being treated the way I described in the scenario about doctors brushing you off. It's hard on her. It's hard for her to sit there and have her pain, fears, and questions be discounted. When she has to sit there and listen to yet another doctor not know what s/he is talking about or how to help her. When the patient realizes that they know more about the disease than the doctor, they feel alone & sometimes scared. If you're going to them for help and they can't or won't help you, what's next? The questions! Why won't anyone listen to and/or help me? What quality of life am I going to have? Can you imagine a Cancer patient being treated like that? No, you can't because Cancer is well known in the medical community and abroad. RSD is not!
So, here you are the caregiver in this situation... what do you say to make your loved one feel better after what just took place? When the doctor(s) leave YOU to pick up all the pieces and try to explain what just happened to your loved one AND try to make them feel better. Let me not forget to add that somewhere in this conversation, you have to encourage them not lose hope! What do you say?!?! Especially when they're fully aware of how they were just treated and why! I talk frankly about it with my daughter. We agree that the doctor was clearly misinformed about RSD, mock him/her to lighten the mood, discuss how we'll try someone else, and I ALWAYS keep "hope" alive in the conversation even if it might seem like an odd time to promote it. In my opinion, this is *definitely* the time to promote it whether my daughter feels encouraged by it or not at the time. It's important that she knows that I am on her side and fighting for her! My daughter is now 16 and we have been doing "this" for over 4 years now. We have had our share of (negative) experiences and developed our own coping strategies.
That's what YOU NEED too!
It's very important that caregivers give themselves some much needed respite. It doesn't have to be extravagant. No trip to Paris or Rome is necessary. Just remember to do something at least once a day that YOU like to do. Read a book. Go for a walk, swim, or jog. Paint, go to the gym, take a long bath, etc. Whatever it is that YOU like to do. Make time for yourself! If you do that, you'll find that it's a little easier to cope with the daily stresses of life with RSD. 




Today's Caregiver E-Magazine:

If you're a caregiver and have anything you'd like to see added to this page, please e-mail with your suggestion. If you'd like your name to appear after your suggestion, please state *exactly* how you would like it to appear. (ie. "Barb Jones", "B. Jones," "Barb"....If you wish to remain anonymous, please state that as well.) As an added feature, the city and/or state/country you live in can also be added if you'd like.

Copyright 2006 RSD Angels