Sometimes it can take me a moment to write a post or to re-write a post, but this next post was probably one of the hardest I had to write. I started it back in May and here I am a month later, re-starting.
I have been a caregiver to my mom, hence the reason for this blog, but on April 1st, God called her home and as I’ve been struggling with emotions and the uncomfortable skin I’m in being alone with no parents (my dad passed in 1996), I’m struggling with my “new normal” in this journey of caregiving. I identified as being a caregiver, then with a snap of a finger it was taken away and I have to redefine my so-called “title” in fighting Alzheimer’s. I was and still am an advocate, and probably will be a stronger one now, but I haven’t quite put caregiver on the shelf yet.
Now I know this may sound crazy, that I’m not sure if I want to shelf my caregiver title because my life as one was challenging to say the least. As mom got worse and all that comes with it went up; my life’s passions, dreams, and quality went down. Being a fulltime caregiver was by far one of the hardest things I had to deal with hands down, but losing my mom I find is even harder.
Losing a parent is not easy, it wasn’t when my dad passed, but it was different, I still had my mom. Now I have no one. A few friends have asked, even only children like myself if I feel like an orphan? On a way, I do.
Now by NO means do I profess to know what it is or feels like to be an orphan or adopted and I say this because I have family members and friends who are as well as the wonderful women I’ve met on twitter and I cannot speak firsthand on that journey. But I do have the empathy and understanding of what it feels like to be alone, it’s just my understanding does come with wonderful memories of my parents to hold on to that adoptees wished at times they had with their biological parents.
I’ve always felt blessed with the childhood that I had growing up in Cambria Heights, Queens (NY). Being able to take dancing and piano lessons, to roller skate and be on a bowling team with my own equipment or to be Brownie and Girl Scout. My parents encouraged whatever I wanted to do and sacrificed to give me things. And though I’m an only child, and yes some have said to me “oh you must have been a spoiled brat.” Let me STOP you right there! This girl may have been spoiled, but I had to work for things and brat was never going to do down in my house! Not with Sue & Harry!!
My parents were very loving, always including my friends in what I did. If we took a family trip they asked a friend to go along, and sometimes my friend’s mother’s went too. My parents took us to amusement parks, my dad took us for ice cream, taught my friends how to play cards…my house was the hangout house. Mom loved to cook and bake for my friends and she and my other’s friend’s mom often took turns driving us to dancing school and roller skating.
And when they each passed, not only was it hard for me, but hard for my friends. They were like the second, even at times like the first parent to some of them.
When mom passed on that Sunday, it happened so quickly. The morning was usual, I got breakfast started for her, walked the dog and when I got back in she said she was having problems breathing. I called 911 and when I met her at the hospital, she was alert, they did some tests on her and she was being given oxygen, not even with the tube just the nose piece and the plan was for her to go to a cardiac unit.
Within two hours, her heart gave out and she was gone. It wasn’t Alzheimer’s that took her, but her heart. From the time the ambulance picked her up, to the time she passed, it was all within three hours. And there I was crying thinking, “what am I supposed to do?” This is not what was supposed to happen. I’m thankful that I was with her and that she didn’t suffer but now began a whirlwind of a new life.
I had been on a path of looking for assisted living places for her and boom, it all stopped. I keep saying it feels like a train on a track that’s moving and abruptly stops and now has to go on another track. But the only way to get it there is by physically lifting the front car to the other track. The train can’t go back, can’t attach a connecting track, I have to feel the physical pain to go in another direction.
I laid mom to rest back in NY with dad. I’m thankful she’s at peace with him, her sister and parents. I do not feel as if she abandoned me, I just miss having her presence, having my physical mom. And though her last years were spent suffering from Alzheimer’s, when I think of her, I see her in her well mind, in her knowing mind, and not as she was.
And now, I have to make sense of my life. In April I dealt with the business of death and once May hit, all the emotions flooded in. Everything has been a trigger. I walked into Walmart one day and had to hurry up out of there, I was getting panicky. I used to go to Walmart often to get her supplies and once I got into the store, it hit me like a ton of bricks. I was in the middle of an aisle about to break down. Tears rolled down my face, but I held it together long enough to get out of there.
Being a caregiver wasn’t comfortable, but it’s what I knew and what my life fell into and now as people say, “you can now live for you and do what you want to do,” what’s funny is that I don’t know what I want to do. Before my mom passed I could run a list down of all of the things I want to do that I couldn’t and now I have to re-learn how to think of me, how be social again (me?!!…of all people), how to just be.
As I mentioned earlier, it’s an uncomfortable skin I’m in having to redefine who I am now and not worry about what I am. And as I move over to the advocate column and look to being more active in that way, I’m thankful for the caregiving journey because it’s made me stronger, crazier at times, but stronger none-the-less.
And this little girl lost, will find her way! I’m closing with a line that I put on my mom’s program which to me, spoke to how I saw myself with a mom who had Alzheimer’s. It’s a line Toni Colette spoke about her relationship with her sister played by Cameron Diaz, in the movie In Her Shoes, “…without her, I don’t make sense.”
Miss you Mommy!
CONFESSIONS OF A MASTER CAREGIVER 