Today is respite day. After four visits, I am not sure how I went for over two years without a break. That is not to say that dropping my mom off there is a happy occasion. I wonder sometimes, if there will always be tears as I walk out the door. I manage to hold it together until I exit the building, but they always start before I can make it all the way to the sanctuary of my car.
Well-meaning friends have tried to tell me that it’s like dropping your child at school for the first time. Perhaps the sadness of separation is the same, the wistfulness of knowing they will not be yours forever. Beyond that, I don’t see much similarity. When you drop your child at Kindergarten, you know she is there learning valuable social skills and information that will set her on a good path for her life ahead. It may be difficult to let her go and to see that she is growing up, but it’s a good thing, a normal developmental milestone.
The simple act of even taking my mom to respite care is a reminder that the funny, strong, fiercely independent woman who raised me is becoming more fragile by the day. When I take my mom to respite care, I am taking her for a break, because she has a disease that ends in death and I am the only family member to take care of her. No matter how hard I try to sweeten it with euphemisms or not think about it, my mom’s brain is dying and death is the outcome. That seems rather the opposite of Kindergarten.
And the truth is, when you step into the role of caregiver, you’ll find that people say some colossally stupid things to you. I have heard everything from “It will end one day” (yes, it will – in my mom’s death, thanks) to ruminations about the disease being a “bridge to God” (bridge to Hell maybe…God, not so much) and what an “angel” I am for doing the right thing and caring for her (as if she were a burden…human beings may get sick, but they are NOT burdens) to people telling me I need a break and should put her in a nursing home so I can get a “real job” again. (I guess running a fledgling business that I adore, freelancing, and the full-time one I have as a caregiver aren’t real enough.)
And you learn a lot about your “friends”too. I have friends who are truly family and have been truly amazing as we’ve gone through this journey. They make it understood that when they invite me, they are inviting her and they treat her like their own mother and they treat her like a PERSON. I’m not sure they have any idea how truly meaningful this is to us both. So many people, when they hear someone has Alzheimer’s or Dementia stop treating them like they are human.
My mom may be sick, but she also has had a long an interesting life filled with examples of her willingness to help anytime someone needed it. She has done and experienced things many would not dream of doing. She has lived through wars (and I don’t mean from the comfort of her armchair, but memories of bombs, broken buildings and lost loved ones), lost children, escaped from a communist country, and boldly traversed oceans all by herself to start a new life, because she fell in love with an American soldier. She is a human being with feelings and deserves respect and not just some insentient lump to be talked over and around or treated like a child who needs a babysitter.
Then there are the other “friends,” the ones who don’t call as often because I’m not available for all the “fun” stuff, the ones who are filled with advice, but little help, or, even worse, people who make promises with little follow through or who bail at the last minute. It’s a story I hear again and again from my caregiver peers about their experiences with family members and friends. While I’m alone in caring for my mom and am also not typically one to ask for or expect help from anyone but myself, I can say that it makes a HUGE difference to know I have people who would help if it were needed.
This is not an experience I would wish on anyone, but it’s a huge lesson in friendship, in boundaries, in the fragility of life, how important it is to appreciate the ones you love while you have them, and how important it is to keep the promises we make. And, on respite days like today, a lesson about self-care and saving up your tears for those moments when you are alone, so you can put on a brave face when 3:30 rolls around and pretend that everything is “normal” and you don’t miss your mom.