Caring for the Caregiver

HOW CAN I SUPPORT A CAREGIVER OF SOMEONE WITH SPECIAL NEEDS/CHRONIC MEDICAL ISSUES?

The old adage says, "You never know what happens behind closed doors." Everyone has struggles and triumphs.  Some deal with their situations more quietly than others. Raising a child with special needs or dealing with chronic illness can bring tremendous joy for families as their child reaches his goals and takes baby steps toward a more functional life. On the contrary, there are many "bad days." The amount of stress parents must deal with on a daily basis can be great. The same may be true when you find out that someone in your life (or even yourself) has a chronic medical condition. The fact is, chronic medical conditions and disabilities can change every day. Just when you feel you've got a handle on things, circumstances change. There may be feelings of isolation and helplessness. Often times, we think "No one knows what I'm going through." These feelings are normal and are expected. Having a support system in place is critical in dealing with trials we face.

Our society has been trained to be supportive in the short term. For example, when someone has surgery, we bring them a meal and a card or flowers. As a therapist, I call this the "casserole effect." Yes, it's my own term and I've used it for years. The patient is expected to make a full recovery and everyone moves on with life and their own business. Here's another example:  A greeting such as, "How are you doing today?" can be a formality in our society.  The greeter may not want to know how you are doing and if you'd begin to tell him, he'd probably look at you with deer in headlights eyes.  Everyone wants to move forward and deal with their own problems. No one wants to hear about yours-repeatedly. So, what to do when you're dealing with a chronic illness and things just don't "get better." Most families lose friends and even some family but there are a few faithful people who stay for the long haul.

As an occupational therapist, it's my job to look at the person as a whole and to assess how disease and disability affects each person's daily life. Since every person is different, every person experiences things in a different way. Hopefully you or someone you love may benefit from reading the following lists.

Let's go over the DON'Ts of providing support:

1) Don't make promises you cannot keep. Do not offer to help if you do not mean it. Remember that someone may be counting on you.

2) Do not compare your situation to theirs. EVERYONE is different and there is no need to talk about yourself while the other person is trying to vent or lean on you for support. It is extremely irritating to me when I am speaking about my child's medical procedure and the listener begins to complain about her own paper cut.

3) Do not make a food that contains any allergen/food someone cannot tolerate. I can think of nothing less considerate than making a meal with nuts if a child in the household is allergic to them.

4) Do not say that the illness is in the person's head or that they are faking it. *Even if you think it….keep it to yourself* This seems obvious but I have personally experienced these ignorant comments and I have many friends who have had similar experiences.

5) Do not give medical advice or treatments you've seen on television that are "cure-alls." Leave the medical treatment/information to the person's care team and medical staff. 

6) Do not belittle someone when he/she is having a bad day. Just be a quiet listener and offer hugs, a listening ear, or kind smile.

7) Do not ask how things are going or how someone's day is if you do not have the time to listen.  It's extremely rude to ask as a formality when someone else is hurting and could use a listening ear.

8) If you cannot say anything nice-do not say anything at all. Rude, hurtful, or thoughtless comments can cut deeply.

9) Do not compare the person's illness to someone else who you know has something similar. Most likely, there will be lots of similarities from person to person in disease symptoms BUT the difference is how the symptoms affect the person's daily life. 

10) Do not appear frustrated when the person is having a bad day. Some days are good and some are bad.  They are sporadic and not at all predictable. The person with the chronic condition wishes for good days too, believe me!

Here are the DOs in providing support:

1) Try to listen-whenever necessary. Be a quiet listener without offering advice. A shoulder to cry on or laugh with is of utmost importance.

2) Send random messages of support, texts, or e-mails. It is great to know someone's thinking about you. I have a wonderful friend who texts positivity randomly and it truly helps my mood!

3) Learn about the illness or disease and ask how it specifically affects the family. Showing you've researched can show thoughtfulness. (Be careful not to offer medical advice, though. Researching statistics on the disease or it's symptoms is helpful).

4) Volunteer to do errands. It's easier to volunteer for specific tasks, "I'm going to the grocery store, do you need me to pick up anything for you?" "I'm driving past the restaurant; may I pick you up a meal?"

5) Offer to go to an appointment or therapy session. Moral support is priceless.

6) Do YOGA together! My absolute favorite way to do Yoga is with friends using the deck of cards called "Yoga Pretzels." Here's an affiliate link to Amazon: Yoga Pretzels. The poses are easy, relaxing, and give suggestions for deep breathing, peaceful and calm thoughts. The cards are categorized for areas such as:  rest and balance, partners, still, restore, nurture and more.
Best part is that they're under $20!!

7) Get a gift certificate for the caregiver to help relieve stress. This includes a magazine subscription, massage, manicure, etc. Caregivers tend to think of others first. A gift card for a day (or even an hour) of pampering is a thoughtful gift! Here's a link to our recommendations for home relaxation in our Amazon Affiliate store.

8) Do ask about the person's health or personal situation before you ask them for a favor. It's not all about what YOU want; it's about being considerate and caring.

9) Offer to babysit or take the children out to a movie or the park. The break from caregiving can do wonders!  Even giving the caregiver time to go out for a walk allows time to breathe fresh air and hear the sounds of nature. I read an article that emphasized how important hearing sounds of nature is to calm the soul and spirit.

10) Do ask if there's anything you can do for them today. Things can change quickly and an offer made last week may not apply to this week's issues.

FINALLY:  Do avoid gossip about the person involved, family circumstances, and any other personal information. Gossip adds to the stress of the situation and it has negative results. Many times, a caregiver comes to my office to cry/vent about family or friends who have spread negativity. Remember, that if you don't have something nice to say, don't say anything at all.  Silence can never be misinterpreted.

Please remember that you have the ability to create or negate chaos in someone's life. I'd like to encourage you to be the positive energy in someone else's life. You never know, that somebody could someday be YOU going through an illness or disability.

About the author:  Cara Koscinski has her Master's degree in Occupational Therapy.  She is the award-winning author of The Pocket Occupational Therapist-a book for caregivers of children with special needs and the new Special Needs SCHOOL Survival Guidebook. Cara is the mother to sons on the autism spectrum and with sensory processing disorders.  She has systemic lupus and strives to find the positive side of life.  You can visit her website for more information at www.pocketot.com