1 – Offer concrete help/ Don’t wait to be asked: Childcare, routine household tasks, and even trips to the supermarket can exhaust our energy. When you are out running to the grocery store, dry cleaners or corner shop ask if the parents 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.
2 – 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 or hospital. When the parents are sick themselves or have had a especially difficult time caring for their sick child offer to come over and help distract the other children.
3 – Learn about the disease: All people close to the parents, especially family, have their own need for information. If parents don’t have the information seek it yourself and find it here and any of the websites on our links listing at the bottom. By becoming knowledgeable you will increase your comfort level in caring for the child when you babysit or even just visit.
4 – Seek support for your own emotional needs: To be a support to the parents, you may want to turn to other for help with your own grief. Covey your sadness but limit your dependance on the parents, who have limited emotional reserves and must focus on supporting themselves and their children’s grief. Grandparents, in particular, may find it helpful to talk to other grandparents of affected children. NTSAD has a Grandparent Support Group and it will be able to place you in contact with others.
5 - Provide companionship: It is easy for parents to feel isolated and alone, and too tired to reach out. Offer to come along to a doctor’s appointment. Make a weakly breakfast date, ask to drop in with coffee and 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 “take-ways’ or offer to cook. Lend a hand by washing your sheets and towels before leaving. Try to minimize adding any extra burden on 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.
6 – Organize family get-togethers: Offer invitations to the whole family to visit your home. The simple mechanics of feeding, transporting, and caring rule out may activities many families take for granted, such as going to watch a football game or even to a shopping centre. Being invited to someone’s home maybe the only type of activity a whole family can do together.
7 – Invite siblings to participate in your family outgoing: Siblings of children with serious illnesses often miss out on fun. Parent 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.
8 – Make efforts to help parents stay in their 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 on 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.
9 – Be yourself: If you don’t know what to say, be honest. If you are uncomfortable handling a child who is weak or stiff or has a feeding tube, let parents know. There are many other things you can offer. Use your strengths to help.
10 – Listen first: Parents of children with serious illnesses have a lot to say. Feelings expressed are not right or wrong, they simply are. Many times expressions of anxiety or frustration are NOT requests for advice. Wait to find out.
11 – Present suggestions as suggestions: Advice giving can easily get in the way of support. Serve as a resource to families but never say ‘You should…’.
12 – Relate to the child: Acknowledge 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. Perhaps the child could benefit from hearing a story or a song, or placing the child’s hand on a soft stuffed animal. Not only will the child enjoy the attention, but the parents will appreciate their child being treated with such loving attention.
The article above was kindly provided by National Tay-Sachs and Allied Diseases (NTSAD) for more information please visit NTSAD’s website.