Special Care “Ask and it will be given to you; seek and you will find; knock and the door will be opened for you.” –Matthew 7: 7-8

How to best care for special needs caretakers? Help them realize THIS kind of caregiving is unique Not like caring for typically developing people Attention is too often focused (almost) exclusively on the special needs person, to the detriment of the caregiver Since care for a special needs person is a marathon not a dash, a plan of care for the caregiver is as essential as the plan of care for the special needs person What follows is a 7-step practical approach

Asking for Help with Daily Responsibilities Don’t assume caregivers will ask for help with daily responsibilities Might be too overwhelmed Might not have thought of the question Might be too proud Might be too embarrassed Assume that they need help, and work from that assumption Ask specific questions (general questions are too easy to brush off)---”How are you doing” isn’t as helpful as: What do breaks look like for you? When do you play? Who’s involved in the cooking/cleaning? What does your day look like?

Emotional Care As exhausting as this type of caregiving is, it’s safe to assume the caregiver is in need of emotional care What is the caregiver doing about his/her feelings---especially feelings that might be considered “negative”? Anger Resentment Grief about losses Emotional care will ideally come from more than just family/friends Emotional need is natural and understandable, but can also be overwhelming to many Sharing about emotional needs may be difficult to do with a friend Make sure significant amount of care comes from professionals and para-professionals (therapists, psychiatrist, support groups)

Spiritual Care Spiritual care is complementary of, but not equivalent to, emotional care Spiritual care strategically addresses questions/concerns/issues with God, Faith, and meaning Should come from trained and mature persons, experienced in accompanying others on their spiritual journeys Don’t assume a religious is necessarily equipped to do this, or a layperson isn’t

Explore Social Resources Isolation is a killer Does the caregiver have a social life Leaves the home has fun, and laughs experiences life outside of caregiving talks about subjects unrelated to caregiving Who/where are the caregiver’s friends? Are they physically present? Are they current? Are the relationships mutual? Some kind of a day program for the special needs person or respite care is beneficial for all involved

Medical Health The caregiver’s medical health is an essential issue If the caregiver becomes sick or physically unable to continue giving care, what happens to the special needs person? Exercise and diet Regular medical check-ups (including psychiatric health)

Care for the Family System Family systems can suffer when there is an imbalance of attention and care If caregiver is married, the marriage must be a subject of ongoing concern If other children (especially those still living at home) are part of the picture, their needs and concerns must be heard Are responsibilities around the home being properly assigned/assumed? Are there legal issues that need to be addressed? Special needs trust Will (power of attorney, conservatorship, etc.) Succession plan

“Stop Light” Assessment: For now and for the future Green Light: what is working, and should continue? Yellow Light: what is not working as well as it once did, or needs to be re-considered? Red Light: what is not working, and needs to be addressed and changed immediately? Note: Caregiving is an ever-changing process, and regular updates are essential