A few weeks ago when my mom was visiting, my mom and I took the girls to the SugarLoaf Craft Festival. We stopped at the MeadowCroft Farm’s stand to taste the jams, jellies, pickles, salsas, etc. As I was paying for my Amaretto Apricot Peach Jam, the bandanna-headed man looked at Carmen in her pediatric stroller and said, “Here you go. I’m giving you some extra change back. I worked in pediatrics for years. Few people understand what care-taking is all about.”
I thanked the man and we headed to the next stand.
I haven’t stopped thinking about what he said.
Before Carmen, I had no earthly idea what care-taking was all about. In fact, I don’t think I really knew anyone in a full-time care-taking position. If I did, I was so unaware that I didn’t even realize that was what they were doing. I suspect that unless someone has been in a care-taking situation or has been close to someone in that situation, it is very difficult to understand.
This past weekend, I was sorting through some paperwork and found a paper from NTSAD (National Tay Sachs and Allied Diseases) on ways to help someone you care about who has a child with a serious illness. As I read through the paper, I found myself nodding in agreement.
I debated sharing with all of you because I in no way want to come across as complaining about our situation with Carmen. And we have had a lot of support in the past few years and I don’t want to come across as anything but EXTREMELY grateful for those folks who have given so much. But, I thought this information was so good that I wanted to pass it along. It’s good information for knowing how to help anyone going through a rough time and especially for those who are in a care-giving situation.
So, here are the points from the paper that really hit home for me:
- Offer Concrete Help/Don’t Wait to Be Asked: Childcare, routine household tasks, and even trips to the supermarket can exhaust the care-takers’ energy. When you are out running to the grocery store, dry cleaners or drug store ask if they need anything picked up or if there are any other errands you could do while you are already out. Be a cook, baker or buy a nourishing and healthy treat.
- Offer to Babysit on Occasion: Parents go to great lengths to enjoy ordinary pleasures. Going out for an evening with their spouse, or taking time for themselves is rare. Something most people take for granted. If you are comfortable with the child, offer to babysit. Offer to care for their other children if the ill child has to go to the doctor of hospital. When the parents are sick themselves or have had an especially difficult time caring for the sick child offer to come over and distract the other children.
- Learn About the Disease: An easy way to learn about most any disease is to google. By becoming knowledgeable you will increase your comfort level in caring for the child when you babysit or even just visit. Less burden is placed on the parents for explanations.
- Provide Companionship: It is easy for parents to feel isolated and alone, and too tired to reach out. Make a weekly breakfast date, ask to drop in with coffee or tea and a pastry, offer to take a walk, or call on the phone. If you are family or a close friend from out of town ask if the family can manage a visit. You may want to arrange to stay in a hotel. If you stay in the home suggest meals are carry-out or offer to cook. Lend a hand by washing your sheets and towels before leaving. Try to minimize adding any extra burden to the family. Make every effort to visit. This family needs to know you care and you do not want to miss visiting and getting to know this special child.
- Organize Family Get-Togethers: Offer invitations to the whole family to visit your home. The simple mechanics of feeding, transportation, and caring rule out many activities families take for granted, such as going to a ballgame or even to a mall. Being invited to someone’s home may be the only type of activity a whole family can do together.
- Invite Siblings to Participate in Your Family Outings: Siblings of children with serious illnesses often miss out on fun. Parents worry about these missed opportunities and often feel guilty about it. Offers by family and friends to entertain siblings are valuable to both the children and the parents.
- Make Efforts to Help Parents Stay in Your Life: Even when consumed with the challenges of caring for an ill child, parents have and need careers, hobbies, interests and other relationships. Show interest in all facets of parents’ lives. Also, be willing to share what is going on in your life, even the hardships. Maintain reciprocity in your friendship with parents, as this is important to both you and them.
- Be Yourself: If you don’t know what to say, be honest. If you are uncomfortable handling a child who is weak or stiff of has a feeding tube, let parents know. There are many other things you can offer. Use your strengths to help.
- Relate to the Child: Acknowledge the children, even if they can’t talk or respond in obvious ways. A gentle touch, a kiss on the forehead, or a few sweet words are special gifts. Do not focus solely on the disabilities. Ask the parents what the child would like. The parents will appreciate their child being treated with such loving attention.
I hope this is helpful. If you can do any of these for a care-taking family, you will be a HUGE blessing to them.
Please feel free to ask any questions you might have about care-taking. I would love to help!
Amaretto Apricot Peach Jam
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Please continue praying for Dave’s brothers. For Steve as he continues recovering from donating his kidney. For Wes who is not doing well. He has been dealing with one issue after another since the kidney transplant rejection. Today he is going back to the hospital because he cannot stop vomiting. We are praying for you, Wes!
