Today is your birthday but as you are in heaven with the rest of the family your celebration – if such is done there – will be different than any you ever had while you were here on this earth. You left this plane of existence almost four years ago but truth be told you left it long before then; in 1996 if I recall correctly. That was the year when you and dad fell apart and my life changed forever.
I saw that you were getting “sicker” before the big crash of ’96 but didn’t understand dementia then like I do now. Matter of fact, back then often it was called “just getting old” or “getting senile” – euphemisms for a disease that still has no cure. You were at the beginning stage of Alzheimer’s but none of us knew that and in your fear and ignorance you fought us all tooth and nail to not be taken to a doctor. Eventually you were, I hate to say this so much, committed to a psych ward in a hospital for treatment and observation because you were becoming too much for dad to handle.
What the hell they did to you in there I still don’t understand because although you were released with a prescription to take (which you didn’t, sigh) and you came home more contrite and less combative than when you went in, it wasn’t the right diagnosis. They didn’t help you one bit, they should’ve, they could’ve. Or could they have? I didn’t know what or when medications came out to “help” with dementia because at the time I was just trying to figure out what was going on and what to do for you and daddy. It was a minute by minute struggle sometimes.
Your life was spinning out of control and it was the beginning of mine getting really shaken. I can still remember too many of the things you went through in your descent into Alzheimer’s which took you from us; took you from being a take no stuff kind of woman who had a tendency to speed sometimes when she drove her Fords to a woman who needed hired people (who sometimes cared and sometimes were only there for a paycheck) to do everything for her. I can’t even begin to imagine the shame, hurt, and embarrassment you might have felt in there – somewhere.
You forgot me first, momma, you forgot your baby girl first! You forgot the one who took care of you more than any of your other children. How could you have done that to me? I still remember the last time you ever said my name to some mysterious person only you could see and then you never said it again. You said dad’s, your mom and dad, some of my older siblings names but I dropped from your radar first. Why me?
I was so angry with you in those first years in the nursing home system because you took away part of my life which shouldn’t have been spent trying to raise children, be in a marriage that was pretty much doomed, and work while trying to take care of you and dad because you couldn’t do it for yourselves and I couldn’t walk away from you.
You scared the heck out of the kids when you first became ill. They no longer had their grandmother and this woman before them was not really her. They tried to cope and one did it better than the other but they became scarred too by Alzheimer’s. There were no books written back then to help someone explain to a child why Gran who used to dote on them no longer even recognized them and needed to wear things that babies wore like a bib while someone fed her and several others at the same time.
There were so so many times when I wished I had a real mother to talk to, to lean on, to be a mother to me but instead I had this sick little old lady I needed to watch out for and advocate for. I got very angry many times and every once in awhile even though you are gone I still have moments of anger when I think about how if maybe you had taken better care of yourself this might not have happened or if I knew better maybe it might have turned out differently. Hindsight can be marvelously clear and incredibly guilt inducing.
Yes, mom, I wanted you to die at first – I know that sounds dreadful but it’s the truth – because they explained to me what Alzheimer’s meant and what the outcome was going to be. So one day I growled at you as you sat there in your lost fog; I growled that I wanted you to hurry up and die because this was too much for me to bear and you weren’t going to get better anyway. You smiled at me but then again you did that to everyone then. I wanted to be your daughter but I was just another foggy face in the crowd…and I was angry. Later on I learned to be happy with whatever I got out of you; seeing you smile while I fed you chocolate pudding will always be a happy memory.
I wished that your symptoms could’ve manifested themselves differently. When you used to repeat yourself – a lot – before the crash it drove me stark raving nuts but later on when you only could do a word salad or just grunts and babbling I missed your driving me nuts. I was jealous of those who had loved ones who could talk to them even if they had no idea who they were speaking to.
I used to tell people that what looked like mom, her body, was there but the real Dorothy was who knows where.
Towards the end of your time here when they said it was time for hospice I felt as if I had gotten punched in the gut. I didn’t want to face the fact that maybe it really was coming; your passing. You were my mother and I wanted to have a mother even if she was just a shell that no longer spoke and didn’t even know anyone was really there anymore. It took a little while and some kind words from the hospice people to help me to realize the whole circle of life business and stuff and to be able to let you go.
You took a year after being put on hospice to go but you always were a stubborn woman. I can never thank those hospice people enough for what they did for both of us. You really liked your hospice nurse, so much so I actually became a little jealous. I wanted you to acknowledge me and like me in some kind of way. I needed it.
Being a caregiver is hard! Ridiculously hard! And know what? It leaves lingering effects even after the caregiving is over and done with. It did teach me a lot of things of which I am thankful for. It taught me that I can be incredibly strong when my back is up against a wall and that when it comes to defending my loved ones I can be fierce! It taught me a lot about the medical and insurance industry and eventually led me into a new career choice there for awhile.
But it also inserted into me a bit of paranoia about my own health. Yes, my health took a big hit while taking care of you. And as new medical students get a bit of the “willies” thinking they might have the same symptoms of what they are studying about; I freak the heck out every time I forget a name or where I put something. It’s during those moments that I have to take a deep breath, step back, and remind myself of the things I learned in college about what is just forgetfulness or being overly tired versus yes that might be a problem.
You are never quite over grieving for a loved one who has passed and even though I thought I was good to go with this grief business, this year I’ve been taken by surprise. I’m feeling a bit of anger again because even though you have been gone now for almost four years the truth is you left me – yes left me – fourteen years ago. My life was turned upside down and inside out and every which way and loose because you and dad became sick and the brunt of handling things was placed on my shoulders.
But I also know it really screwed up your lives too.
I sat down quietly one day and couldn’t recall how you sounded or what you used to like to eat (other than chocolate) or even how you looked other than some earlier pictures of you because my memory is all mushed up with images of you when you were sick and even more so of how you passed away. Those memories are in the front of my mind and I wish I had memories of you being a mom to me. A few memories of you and dad when the kids were very young are floating around in my memory banks but mostly the memories are of you in your decline. That hurts and sometimes makes me angry. I guess all of my feelings this birthday are just another phase of grieving and grief has no time limits.
It’s your birthday today, Mom. Happy birthday to you.