My daughter was born in 1990.  At twelve months, I realized she didn’t reach certain milestones.  From then until she was three, there were extensive doctor appointments, including: geneticists, neurologists, and numerous other doctors.  We finally got a diagnosis of Angelman Syndrome.  Until a couple of years ago, I cared for my daughter 24/7, with few opportunities for meaningful respite.  I then had opportunities to have paid support from others who would care for my adult daughter once we enrolled in a long-term care waiver program.  That changed our lives immensely.  However, enjoying time away from caregiving came with a cost.  My perception of being judged (and already having feelings of guilt) weighed heavily.  Not providing care 24/7 and taking week-long vacations were a significant departure from my round-the-clock care for my daughter.  However, there were times when my perception was real, and getting past that judgment has been challenging.

You never forget that feeling of others thinking you’ve become disengaged.  Especially when it is so far from the truth as there is a lot that goes into caregiving.  There are the obvious actions, i.e., bathing, feeding, grooming, activities, etc.  Yet, there is also the world of paperwork, monthly check-ins, annual recertifications, care of ward and financial accountability, managing quality of life opportunities, coordinating doctor visits, and so much more. 

In the end, it doesn’t matter what anyone else thinks or perceives. Taking care of yourself with opportunities of respite is critical.  It is important to enjoy life outside of caregiving, especially when others around you have greater freedoms in being spontaneous. This is no reason to feel guilt.