“Who's gonna care for the ones who care for the ones who went to war?”
I love this song (and this line), because I and so many of my fellow comrades went to war and needed to rely on someone to take care of us after we came home.
But if you take out the word "war" and think of those of us who are caregivers to our children and grandchildren who are deafblind, it also really applies to us. Who is supposed to care for us as we struggle to get through each day? Who is supposed to care for us as we deal with school, IEPs, ISPs, life-threatening medical emergencies, doctors, nurses, insurance, providers and countless other issues? Who is supposed to care for us as we lie awake at night worrying about the future of our deafblind child, after we have gone?
Thinking about it (and I have a lot over the years), the answer is probably different for everyone. For some, it's a loving, supporting spouse and a strong marriage that gets them through the dark days. Some can lean on parents, relatives, friends, professionals, to help. Some have to struggle to find support.
Mary and I are in our 70s. We raised our granddaughter, Brittany, who is deafblind, from the age of three until 22, when she moved to a community placement (she is now almost 25). She has a very involved health history, including a kidney transplant. We still see Brit almost every Sunday (she "appropriates" a "souvenir" from our house and takes it in her backpack to her apartment every time she visits). We will also celebrate our 50th wedding anniversary this June.
One of the key lessons that we learned over all the years of dealing with Brittany's various health crises is that those who care for the ones who "went to war" MUST find ways to take care of themselves. Whether it is a cup of tea or an "adult" beverage, or fifteen minutes to yourself every day, or a designated time to cry, or an evening out for yourself, you must invent ways to take care of yourself.
Because, to paraphrase Dr. Phil, "How are you going to care for others if you don't take care of yourself first?"
God bless all of you, who face issues and stresses that "regular" parents and relatives never have to deal with. Please take care of yourselves.