My child has many medical needs, which means we have professionals coming and going every day. Although having access to the support we need is a privilege, it’s also a double-edged sword because you give up a lot of privacy.
Our son, Nathan, receives care from many different care providers. The number of people coming and going to our home changes each week depending on which provider needs to visit. Last week nine people came to work with Nathan. Some of the providers, the nurses, are here for hours. The other care providers come once or twice a week for 30 minutes to an hour.
It is hard to give up so much of our privacy. Sometimes it feels like we’re living in a fishbowl. Someone is almost always in our home, and they can see everything we do. No one in the family can run to the laundry room in underwear to get their jeans. It is harder to have an argument or personal conversation when others are listening.
During the middle of the night, we may want something to eat, but we need to make sure we are dressed before wandering to the kitchen. We have had nurses talk the whole time we are trying to watch a movie or show.
It can get to be too much at times. We sometimes all hide in our bedrooms because it is the only place we truly get privacy until a provider comes knocking on the door because they need our help.
We rely on the therapists and nurses because they help improve Nathan’s quality of life. Nathan’s improved quality of life has a positive impact on the whole family. The care from nurses allows us much-needed breaks so that we can spend quality time with our other children. The therapists help by keeping Nathan stretched, which makes it easier for us to dress and move him.
Although I see the benefit to Nathan, there are times that I wish we did not have a revolving door at our house. Over the years, many of these people have entered as strangers but have left as family and friends.
Families need time for self-care. Here are some ideas.
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support