I know. I promised myself that my next blog would be light hearted or at least an attempt at funny. But I guess I lied. The next one will be, I PROMISE. I have two ideas cooking.
We just left my Dad’s house after a pretty good weekend. I even got to have lunch completely alone with him yesterday for the first time since I was a little girl. Yup. You heard right. We have always had someone along with us. Never alone.
It felt awkward and comfortable all at the same time if that’s even possible.
As we chatted over our burger and fries, I brought up some of the little funny things I remembered, like when we used to eat at Wendy’s. He would always point over my shoulder and say, “Look at that!” When I’d turn my head around, I’d see him steal my fries out of the corner of my eye.
He repeated himself so many times. Telling me over and over “You are so beautiful” and “You certainly couldn’t have gotten that from me!” I’d just make a silly face and say, “Oh, of course I did”, making him laugh.
Humor has always acted as my shield from fear, anxiety, pain and sadness. The inappropriate giggles when you’re in the middle of a funeral. Trying to crack a joke in the middle of a job interview. Filling uncomfortable silence with a goofy comment. That kind of thing. Some people don’t understand this, but it is the glue that keeps me from falling apart. I think I get this from my dad.
This morning was a jolt into reality of this horrible disease. My father could not remember who I was at breakfast. I had to pull up photos of my wedding on my computer. I luckily had a few of him walking me down the aisle and dancing with me.
It stung to see the doubt still clouding over his eyes as I listened to him apologize because he could not remember and then the string of questions that followed.
“There are so many things about you that are familiar. I don’t know what is wrong with mind. I just can’t remember. I’m so sorry.”
“What was your mother’s name?”
“How is she doing?”
“Do you know my family?”
“Can I have your address so we can keep in touch with each other?”
I carefully answered each question over and over and over again as we finished our breakfast together.
I think he finally started to believe me by the time we left. Before we got into the car to make the long drive home, I had my husband snap a picture of the two of us. One second, one moment, one memory, imprinted on a piece of paper to go in a photo album somewhere or posted on Facebook to prove to everyone, yes, this is my dad.
Dad and my step-mom stood outside with their dog while we piled into the car. He leaned into the car on my side and said, “I remember you now. I’m glad we got to know each other this weekend. Don’t worry.”
He gave me a picture of him and his dog, Dolly On the back, there was a note in his familiar hand writing.
“To Amy, We love you, Dad & Dolly”
I watched him walk into the house as we drove down the street, around the corner and out of view, only to be forgotten again.
But don’t anyone feel sorry for me. The person to feel sorry for is my step-mom What kind of existence has she been doomed to. They have been married since I was 10 years old. How is this fair to her? What would it be like to live everyday trying to convince the man you’ve loved for more than 28 years that he’s not losing his mind, when he really is. It’s not fair.
Amy,
Although not quite the same “dad” that you remember…although his thoughts are far…I would have givin anything to have lunch with my dad today .
I know it’s not fair…cancer…alzheimers…whatever it may be it is a very ugly part of life.
I know that you are aware your father adores you..it must be so heart wrenching.I can’t imagine the hurt you feel when he does not recall who you are.
I wish I had the words to make it better.All I can give you is that he is ALWAYS THERE….deep inside know that he is still with you ! Your memories and love will always keep you close . No illness can break that.
Lots of love to you and the family…..
Loriann, you are soooo sweet. You know he has two pictures of us together in his back office. He kept going back to his office and bring the out over and over pointing to both of us. “who’s this?” “Is this you?” he did it about six times between yesterday and today. And I do hear what you are saying, but my heart aches for Donna. I’m so worried about her. Thank God Betsy lives there and Robin went down last weekend. I just had to see for myself. Now call me and tell me good pregancy stuff so I will get preggars and not want to adopt. Ha ha. I love you!
To clarify, they were pics of you and me, Loriann and he didn’t remember either of us.
Oh Amy…what a heart-wrenching story. You’re such an awesome writer, and I look forward to your posts, light-hearted or not
Your stepmother must be an amazing woman to be going thru this day-in and day-out. True Love, right
and although is mind & thoughts are broken, he still loves you & wants to love you & doesn’t want you to worry- what a loving, loving dad.
**HUGS**
PS- F*&ck Alzheimers!
Hi visiting via SITS website. What a sad time you are facing. I really feel for you as I read this, I am like you who always tries to handle difficult situation with humour, I laughed whilst being “on the ground” during an armed holdup.
Alzheimers is indeed a heartbreaking illness. I wish you and your family lots of strength in dealing with this xx
Hugs to you, your dad and your stepmom – thanks for visiting my blog. I know exactly where you are coming from… if you read the post below the one you commented on you will know that we are watching my grandfather slip into the past by inches too… He still knows my grandmother but struggles with the rest of us. They’ve moved into care because he is a danger to himself otherwise and as a big man my grandmother couldn’t handle all of his needs. If your S’mom hasn’t already done it, she should look into caregiver relief programs, because the worst thing that can happen is caregiver burn out… having worked for the Alzheimer Society, I’ve seen it all too often
I’m following your blog and am happy to chat about shared experiences any time.
Hey Amy–this was like looking into a mirror. The same conversation, dad forgetting who I was in the morning, and the same strange and sad goodbye. As I said goodbye and looked into his eyes to tell him I love you, I wondered if next time he would recognize me at all. Maybe that will be the last moment I connect with him. Then, I took a deep breath, stayed strong trying to act normal, picked up my bag and walked out the door. Such a strange and cruel disease. It brings up so many weird thoughts. Is my dad still in there anywhere? This is like a long drawn out death—is it better to poof go quickly? Will this happen to me? If so, how long do I have until it happens? How will I handle losing Dad? Will I fall apart…will I stay strong…how will I breathe…how will I feel safe again like I did as a little girl? All some of the same things you are feeling. I love you and know you are not alone. We have something very special–each other.
Not much to add to the words from my sisters. I love you both and know how lucky I am to be your sister.
Amy
Thanks for sharing this experience. I’m sitting here crying as I remember my own mom looking at the pictures of her children and grandchildren and telling my nephew (grandkid #6) that “all these people keep sending me pictures and I’m not sure who they are.” What on earth can you say? Mom was diagnosed almost nine years ago now. Because she has horrific episodes if we use the “A word,” her official diagnosis is “memory loss.” Same drugs, but we avoid the violent episodes. Watching her decline has been heartbreaking. I honestly, deeply, and sincerely hate this disease and want to see it eradicated. The pain it causes families is impossible to measure. The terror it causes its victims is horrific. There is little comfort I can give my mother when she asks “Why can’t I get better? What’s wrong with me?” What I have learned from this experience is that people will surprise you with their capacity to care and that the support network for those of us with family members is growing daily. I hope your step-mom is tapping into that network.
Thank you for your kind words. It helps so much to know there are people out there listening. I used to work very closely with Alzheimer’s patients. I knew my grandmother had it, but she died before I was old enough to see what she went through. Now that my family is experiencing it, it’s like I now truly see what a cruel disease it is. We don’t dare mention the “A” word to him either. It gets him very upset.
I mentioned tapping into a support network to my step-mom. I think she is looking into that. Thanks again for your comments.