Chances are that you have been caring for your child with special needs for so long, that it can be hard to seek help because 1) you don’t have time to find and train someone, and 2) you feel that no one else is going to care for your child as much or as well as you do. Yet asking for help not only gives you much-needed support, but it also ensures your child will have time to get accustomed to being cared for by others if and when you are no longer around to personally provide that care.
As important as those reasons are, they are still not the most important reason to ask for help. The most important reason to ask for help is to begin training your child’s future primary caregiver.
As the primary caregiver for your child with special needs, you've likely been through some trials, and with them, you have identified your child’s support needs and connected with resources to help you find that support.
But what you may not have thought of is making sure that your successor caregivers and child with special needs are also connected to your support network and ready for the eventual transition in caregivers when you can no longer act as the primary caregiver of your child.
Who Steps In When You Can’t Be There?
Imagine that you are suddenly no longer able to care for your child with special needs due to your own disability or death. You probably have a successor primary caregiver in mind – perhaps your child’s sibling, aunt, uncle, cousin, or close family friend. You may have even named a backup conservator or guardian, or your loved one with special needs may have named a successor caregiver in a Power of Attorney.
Now, imagine that you have not practiced asking for help during your healthy years. After all, once you develop a routine of providing support to a person with special needs, it can take more effort to train someone else to assist you.
But unfortunately, this makes it easy to fall into the admirable, but ultimately harmful, habit of self-reliance. It feels good in the short term to be the only person who knows how to care for your loved one just right, but this doesn’t serve them well long-term. Most individuals with special needs struggle with change, so the more gradual a transition in caregiving can be, the smoother the process will be for everyone.
Holding the bulk of the responsibility for your loved one’s care can also cause burnout and increase the likelihood your successor will be overwhelmed with tasks that have become routine for you. Plus, since this successor is likely someone close to you, chances are that they will either be in the grieving process after your death or, if you have developed a disability yourself, in a dual caregiver role of caring for both you and your loved one with special needs.
At best, the successor caregiver can be under immense stress that negatively impacts family relationships and careers. At worst, your loved one with special needs could unnecessarily end up in institutional or agency care when they would be better served at home.
Experience for Your Care Team, Respite for You
Asking for help caring for your loved one with special needs doesn’t just provide a much-needed break for you. It also provides your successor caregivers with experience in the greater caregiving roles they’ll play in the future.
If you have set a clear example of asking for the help you need, at least one person will gain some experience dealing with Social Security and Medicaid agencies, and someone will have assisted with insurance companies and healthcare providers. By having a successor caregiver at least observe your caregiving activities once or twice a year, they will know exactly where the necessary contact information and legal documents are located to enable this critical work.
Beyond these essential basics, getting your support team acquainted with your loved one’s routine early on will provide your loved one with a greater quality of life even in your absence. During this time, they will benefit from continuity in their daily activities while becoming more familiar with their other caregivers.
In addition, by routinely gathering input from your support team in your decision-making processes, you will model a process for future caregivers on how to receive input and make decisions for your loved one – or support your loved one with special needs in making those decisions for themselves.
Supporting You and Your Network at Every Stage
As you model asking for bits of help now from the people you trust, you are setting the example of self-care for future caregivers and giving them experience caring for your loved one now. By doing this, you’ll also find the weak spots in your support team where more training or familiarity with your loved one’s care routine may be needed. This translates directly into better health and quality of life for your loved one with special needs.
We can help you identify the support roles that you and your loved one need, and the best persons or agencies to fill each role. We’ll also ensure you have at least one backup person for each role and can help you design a plan for how these support roles work together for your loved one’s benefit. We’ll guide you from the beginning to implement a plan now, train your support team for the future, and give you some well-deserved breaks in the meantime.
Contact our office to learn more about how we can guide you in asking for help and setting a positive example for your support team. We look forward to putting our experience – and the experience of our mentors and other clients – to work for your family, especially your loved ones with special needs and their caregivers, both now and in the future.
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