Posts belonging to Category 'Caregivers'

Caregiver Selection Checklist

Many of us after learning of an EB diagnosis of a child must then take on the responsibility of becoming a primary caregiver for our loved one, either alone or with our partner or another family member. Sometimes, however, it becomes necessary to bring a third-party caregiver into the home. If you have not been faced with making such a decision before for another family member such as a parent or grandparent, it can be a daunting one.

Here is a brief list of suggestions to get you started as you pose questions of potential candidates and do your research:

  • Check with your physician or other specialists who are involved in your child’s care for any recommendations they may have.
  • Contact your local chamber about any medical facilities or caregiver organizations based in the area as another resource worth investigating further.
  • Ask friends or other family members who may have selected a caregiver for a relative in the past for some basic advice on making the selection, keeping in mind that their caregiver may not have faced the same types of challenges as an EB caregiver will need to endure.
  • Talk to other EB families online for their own input on selecting a third-party caregiver, such as here in the EB Resource forum or other online communities you may be a part of.
  • Reach out to other care experts for any other advice on the caregiver selection process such as the DebRA nurse, a national caregivers’ support network or contacts you may have at a medical facility where your loved one may have received care.
  • Ask the caregiver for references specific to working with those facing rare diseases and someone in your loved one’s age group.
  • Explain what you can about epidermolysis bullosa to the caregiver candidate and ask them to do some homework on their own about EB, arranging for a discussion a week later to gauge how well they understand what this disease will entail for the care process and the emotional toll it can take on the patient, the family members and the caregiver.
  • Request information specifically about wound care experience and background, and inquire about what wound care suppliers they are familiar with.
  • Ask for their expectations as a caregiver and be sure to communicate yours openly and thoroughly during the interview process.
  • Make a point for your significant other and any other family members involved in the care process to meet the potential caregiver and be involved in the interview process.
  • Give your loved one an opportunity to interact with the potential caregiver to not only see that candidate’s communication style and “bedside manner” but also to see your loved one’s own reactions to the candidate.
  • If your interview process is a positive one, suggest a trial basis of a few days or a week to test the new caregiver relationship.

These are just a handful of suggestions and by no means, a complete list. Perhaps you can offer some tips of your own for this selection checklist. What are some other key questions or areas of inquiry that you suggest to someone looking to hire a third-party caregiver for their loved one diagnosed with EB?

Special Care Deserves Special Thanks

Has someone been a big help to your family? Let them know.

Last week was Thanksgiving, and we certainly hope that everyone had a beautiful, peaceful holiday with their family and friends. This time of year can leave us darting from one store to another and completing one task to the next on our lengthier than usual to-do lists. We wanted to remind everyone that in addition to being thankful for our loved ones, it is also a wonderful time to remember those who pay special care and attention to look after the safety and well-being of our greatest treasures of all — our kids.

Many parents of children diagnosed with EB are often their own child’s caregiver and handle much of the daily care routines, such as bathing, bandaging and meal preparation, but there are some families who may employ the support of a part-time or full-time caregiver or who turn to other members of the family or close friends to help in a number of ways to provide support and care. We know it’s so easy to lose sight of just how important this added support is, particularly when as a mom or dad, your only areas of focus for your child diagnosed with EB are their safety, comfort and happiness. And when it comes to these supporting figures – whether they are registered or trained medical personnel or simply loving, caring friends or family members who want to lend a hand – the value of what they do for you and your child is immeasurable.

So we say why not surprise them now with a token of your appreciation for all they do? After all, isn’t Thanksgiving the perfect occasion to express this gratitude? Don’t worry that the official “Turkey Day” was last week. Your message and your thankfulness will ring through loudest of all falling between two of the busiest and most distracting holidays all year.

Think about the member or members of your care support team for your child — do they have any particular hobbies or interests, favorite products you know they’ll enjoy or a place they’ve mentioned wanting to try for dinner, a manicure or a spa treatment? Maybe they’ve talked about a new book they want to read or how they don’t get an opportunity to go to the movies like they did before. This could be the ideal time to tell them thank you in a uniquely personal way that lets them know that you don’t take for granted what they do to help you and your child. In the process, you are offering that special person a chance for a little down-time and de-stressing, especially important to someone in such a stressful line of work or who has taken on added responsibilities to show their support for you and your family.

Have any of our community members done something like this to show their caregivers or other support resources appreciation? If so, tell us how you remembered them and what their reaction was. We’d love to hear from you.


Support Resources for Caregivers

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

Many of our community members serve as caregivers on a daily basis for their loved ones. It’s not an easy thing, truly a 24-hour-a-day job, and can increase the caregiver’s own health risks for physical and emotional stress or outright burnout. We’ve begun a list of possible support resources that could be helpful to you. As always, be sure to do your homework and ask around in our community here, as well as among other forums or groups you may interact with regularly. They may have some other tools to suggest.

  • A journal. Some caregivers find that a great stress relief tool is writing everything down. Sometimes just having a place to vent and pour out your thoughts and feelings can do wonders. If you prefer to keep your thoughts to yourself or share with just one or two other people close to you, consider picking up an inexpensive but inspiring journal or notebook at the bookstore or even dollar store. The National Caregivers Library offers tips for how to set up your journal or workbook and what topics to tackle to provide a good sound board for yourself.
  • A blog. On the other hand, if it’s more important to you to start a conversation with others facing similar challenges – to discuss care issues, for example, or ask others about particular topics – then an online journal or blog is the way to go. The EB community has a strong, supportive network of bloggers worth checking out, those willing to share their lives not only with others unfamiliar with EB to educate and raise awareness, but also with those of us who are or have been personally touched by EB. We frequently make suggestions for bloggers to follow, but we want to hear from you: who are some of your favorites to recommend?
  • Online communities. Interacting with people across the country – across the world! – has never been easier thanks to wonderful tools like Skype, virtual “neighborhoods” such as Facebook communities like ours and web forums like EB Friends. For caregivers, just being able to reach out – to pose a question, ask for a recommendation or vent – can be such a great stress relief.
  • National caregiver-focused organizations. Groups like the National Family Caregivers Association and the National Alliance for Caregiving are available to provide helpful information and other support resources on their website and through literature and presentations from their organization. We found their Family Caregiving 101 site to be especially useful.
  • Support groups. While you may not locate a group specifically geared toward EB or, if you have a small child, a support group for parents of children with life-threatening conditions or diseases, it is very possible that a local hospital may have a caregivers support group. Sometimes just talking with others about their strategies for staying strong, healthy and focused can be beneficial.
  • Neighborhood sidewalks, area parks, the gym or your local Y. Simply getting up and walking or taking part in some form of aerobic exercise is truly one of the best things you can do for yourself as a caregiver. highlights a number of great activities beyond walking to get you moving and help alleviate tension, including dancing and yoga. So channel that stress through physical activity and do something good for your body, mind and spirit. You’ll help not only yourself but also the loved one you are caring for.