I know I have said before that Autism sucks. Well it doesn’t, at least not really or by comparison to Alzheimer’s. Alzheimer’s really sucks and takes suckage to a whole new level. If you know us and/or if you are a regular reader of my blog (thanks by the way) you know that my mom has Alzheimer’s Disease. I was familiar with this joyful disease when my Nana had it in the 80s. But, she was my grandmother, didn’t take great care of herself, it was in a different era, blah blah blah. My mom has it and we are now making some changes in our family for survival purposes; her survival and my father’s survival.
My parents never told me important things when I was growing up. There was always a lot of shushing and Yiddish when anything went down. You knew something was up but you only found out much later on what occurred. I do not subscribe to that philosophy. I think age appropriate descriptions of what is going on in your life affords your kids the opportunity to grow and learn and deal. On Friday we were able to place my mom into a Memory Care Facility for Alzheimer’s patients aka nursing home for people with the disease. The decision to do this was ultimately my Dad’s since it is his wife, but as a family we are all mindful of what is best for my mom and my dad. I’m proud of the tenderness and understanding we have shown each other during this time.
So I need to tell my boys what is happening. Bryan and Jason are so close to my folks and they have watched the transformation of their highly engaged grandmother to this tiny childlike woman. I feel not only grief-stricken for my dad, my sister and me and our close extended family, but for my boys. The difference in her is obvious and while they do not cry, since she is still around, they have mentioned many times the change and ultimate deterioration of her mind. I was a little tentative to share with them; we are still WAY grieving the loss of my aunt. The nights are the worst; it seems that the nights have a way of playing with you. I’m sleeping briefly and then waking up to, did this shit really go down? Is my Aunt gone? Where is my mommy? I always get off topic! Ok so I decided to talk to the boys over dinner on Thursday night. I had mentioned to them previously that Grandpa, Aunt Frannie and I were going to take Grandma to a place to live, but that now was the time and it was going to happen the next day. Jason asked the typical questions, where is the place? will we be able to see her? does she know? how is Grandpa doing? (that last one, I am proud to say, is who Jason is, ever concerned about the casualties). Bryan did his typical Bryan giggle which happens when things are awkward.We talked through what I knew and what I would find out. I was very very emotional that night. I literally could not reel it in. I reassured them I was ok but since I don’t hide things I know they felt bad. I guess on some level they needed to see that I was grieving.
Later in the evening I went to see Bryan in his room. He was just resting and I was teary. It kind of went like this:
Me: Bryan do you understand what I told you about Grandma?
Bryan: Is Grandma sick?
Me: Yes sort of, her brain is sick.
Bryan: Is Grandma going to die?
Me: Everyone eventually dies, but she is not going to die now. She is just going to live in a place that is safer for her, where they can take care of her.
Bryan: Are Grandma and Grandpa getting divorced? (can you say sucker punch to the gut on that one?)
Me: No honey, it’s just that Grandma has brain disease and Grandpa can’t take care of her anymore with it. She needs special care.
Bryan: She’s going to the hospital? She’ll be home soon.
Me: No, she’s not coming home.
At that point, I had to stop and tell him we will talk more tomorrow. I literally got so overwhelmed with being overwhelmed I knew it was better to take a pause. He was very tired so he went to sleep.
I, of course, was not able to sleep at all after that. How do you explain to your kid with autism something that while intellectually you know but can’t really explain to yourself? What really kept me awake, however, was that I didn’t have the language I needed to give him. Bryan talks to so many people, calls, FaceTimes, etc and I want him to “get it right” so people won’t be worried or confused about what he is telling them. I could not find the words and truthfully still cannot. I was completely dumbfounded. I know this might sound a bit melodramatic, but I wanted him to understand and to represent appropriately. I guess I am my mother’s daughter because she was so proud and private, I want to make sure she is not embarrassed and can retain some sort of atmospheric dignity. So crazy, she will not know, but I guess I will know and that is the point. A few days have passed and we have been getting some typical reports from the facility. I still do not have the words for Bryan nor for me.