By Mary Anne Ehlert, CdLS Foundation Board Member
Dear CdLS Foundation,
I’m a mom to a 28-year-old daughter with CdLS. My daughter and I have weathered many storms together. She doesn’t communicate well and hits herself so bad that she caused permanent blindness in her right eye. It took me many trials and efforts to come up with a protocol that works for her. I just turned 67 and feel worried about what will happen to my daughter when I’m gone. I don’t have any family – it’s just us. She has a Medicaid waiver for paid care for 12 hours (that’s when we can find a worker), but I fear that without me around to oversee her care, what might happen? We live in Oregon. Does the Foundation have any ideas and suggestions? I’m sure many other parents have a similar worry. Thank you.
Signed,
Worried Mom from the Coast
Dear Worried Mom from the Coast,
As Advocates in the disability field, the most common fear we hear from families is, “what will happen to my adult child with a disability when I am no longer here?” One thing we know for sure is that no matter who is left behind to care for our loved ones, no one will ever do it exactly like we do as parents. The day you’re no longer here may seem far off, but none of us have a crystal ball. Planning for the future now is one of the things you can do to reduce stress and anxiety about “what if?”. Some things you might consider:
- Consider hiring a private duty home care worker or nurse to become familiar with your loved one and their needs. Reach out to a Care Management Agency to become involved in creating a plan for continued care and support when you’re gone. If you can build a trusting relationship with these agencies now, it may provide a sense of relief that if something happens to you, you know there will be a trusted source to check in on your loved one’s safety, happiness, and health.
- If your child will likely need 24/7 care in a residential facility, start touring them now, and become comfortable in the uncomfortable. While some of us cannot imagine our children living elsewhere, especially while we’re still capable, waiting until our own decline to begin planning is dangerous. You may consider working towards the transition now so you can see the supports, the facility and the staff working with your child, in which you can provide feedback and constructive criticism for care. It’s not an easy undertaking, but taking steps toward providing the best future for our loved ones is one of the only ways we can reduce the fear of “what will happen when I am gone?”.
You can find resources for Home Care Workers through the National Alliance for Care at Home: https://allianceforcareathome.org/
You can find resources for Care Management Agencies through your states Department on Aging or Department of Health and Human Services – find yours here: https://dss.mo.gov/50states.htm
- It sounds like you have started creating a document to make sure you are communicating with future care professionals with the care needs. This is very important. Continue to document all of the details, no matter how small. There is so much information in our heads as parents, we need to get in on paper or in a computer.
- Build the “Team”. No one future person or persons can do what you do. Identify all of the types of services your daughter will need, and start to talk to others who might be the future what I call the Dream Team” for your child. Consider the needed individuals, doctors, lawyers, recreational programs, social supports, church groups, financial professional and trust officers, and more. Each of these team members need information and need to work together. By starting this process, you will start to have some confidence that the future will be defined by your terms for your child.
*Each individual with CdLS’ journey will be different and your loved one may not have the same experience as stated above. For more individualized assistance regarding this topic, please reach out to Family Service at familyservicesteam@CdLSusa.org or visit www.cdlsusa.org/ask-the-expert/
Recent Comments