Given that I am currently living about 900 miles away from home, my Mom and I rely heavily on phone conversations to keep in touch. I try to call my Mom every two or three days and talk for at least thirty minutes. As her Alzheimer’s progresses, it is becoming increasingly more difficult to have a conversation with my Mom. I find that it is much easier to talk to her in person because we can see each other, which seems to cause less confusion for her. Talking on the phone is a whole different story. She doesn’t seem to understand that even though she’s talking to me, I’m still in Alabama. When we talk on the phone, she thinks I’m actually there with her in Delaware. It is often a struggle to keep her talking on the phone for more than ten minutes. She doesn’t know what to talk about and has a difficult time trying to follow along with what I’m talking about. Therefore, I’m very limited with what I can tell her or ask her about. Many times it is like pulling teeth to have an actual conversation with her. But, I know that if I talk about Oakley and Lucy, she will follow along easily and enjoy every minute of our conversation. It’s a good thing that they provide constant entertainment and a never-ending supply of stories for me to tell her.
The end of our phone conversations is always the same. I tell her that it’s time for me to hang up and she says, “Ok.” This is followed by the longest goodbye in the history of phone conversations of anyone ever. It usually goes something like this:
Me: “Ok, Mom, I have to get going now.”
Me: “Alright, so I love you, have a good day, and I’ll talk to you soon.”
Mom: “Ok. Alright. I love you, too.”
Me: “Ok, bye, Mom.”
Mom: “OK, bye. I love you. Tell Steve and the babies I love them. Lucy and….what’s the other one’s name again?”
Me: “Oakley and Lucy.”
Mom: “Oakley! That’s right. And Lucy. Like the TV show, ‘I Love Lucy.’ You know that’s back on TV now?”
Me: “Oh really? No, I didn’t know that. Ok, Mom. I love you.”
Mom: “I love you, too. Have a good day…night…what time of day is it?”
Me: “It’s the afternoon, Mom, so you can say, ‘Have a good day.’”
Mom: “Ok, have a good day. I love you. Tell everyone I love them and I said, ‘Hi.’”
Me: “Ok, Mom. I will let them all know. I love you, too. I’ll talk to you soon.”
Mom: “Ok…talk to you soon…When are you coming home again?”
Me: “I’ll be home to visit soon and I’ll be home for good in January.”
Mom: “Oh, January?! That’s great. My birthday is January 24th.”
Me: “Yes, Mom. I know it is. Ok, I have to go. I’ll call you soon.”
Mom: “Ok. I love you. Bye.”
Me: “Love you, too, Mom. Bye.”
Mom: “Ok. Drive carefully.”
Me: “Ok. I will.”
Mom: “See ya later alligator.”
Me: “Ok. Talk to you soon. Love you. Bye.”
Mom: “I love you, too, sweetheart. Bye.”
And then, we finally hang up. This is not an exaggeration. Sometimes our goodbyes last even longer than that. When I hang up the phone, I always close my eyes, take a deep breath, and let that shit go. FUCK! That was the longest goodbye ever! I know it’s not her fault, but god damn. It takes longer to say goodbye to her than it does to have an entire conversation with her. I know part of it is that she has forgotten how to have a conversation or how to properly say goodbye. I also think that she is afraid that she is forgetting to tell me something, so she stalls. She tries to keep me on the phone so she can remember what she’s supposed to say. I try my best to be patient with her, but it’s very difficult sometimes. I know it’s not her fault. Sometimes, I start laughing and joking with her about how long it takes her to say goodbye. I guess I should just learn to appreciate the fact that she’s still able to speak and have a conversation with me, even if it’s not a great one. I know the day will come when she’s no longer able to have verbal communication and I will wish that we were on the phone having the longest goodbye ever.
Actually, Alzheimer’s is really the longest goodbye. Even longer than our goodbyes at the end of our phone conversations. I’ve been saying goodbye to my Mom since at least July 2010, which is when she was diagnosed with Alzheimer’s. I’ve probably been saying goodbye to her since even before then, but I just didn’t know it yet. I say goodbye to pieces of my Mom every single day. Each day, I lose more and more of her, as she loses more and more of herself. Often times, she is just an empty shell of the person she used to be. She has lost the ability to remember facts, names, events, and information. She has lost the ability to find her way around her house, use the bathroom without assistance, and dress herself. She needs help showering and grooming herself. She needs someone to get her food and something to drink. She needs someone to cut up her food so she can eat it. She needs to drink from a cup with a lid and a straw. She is losing her ability to walk, especially more than ten feet, but she refuses the assistance of a wheelchair or walker. She has pretty much lost her ability to think, reason, and solve problems, although she has some moments of clarity. She is losing her ability to have a conversation more and more each day. She is losing every piece of herself, slowly and painfully, until there is nothing left.
I hate it when people have the balls to say to me, “Well, at least you know she’s not suffering. She’s not in pain.” My Mom may not be in physical pain, but she is definitely suffering. She is dying from an illness for which there is no cure. Alzheimer’s is terminal. There is NO cure. There are NO survivors. She has been dying for over five years now. And, yes, I do believe that my Mom is aware of what is happening to her. Maybe she’s not aware of it all the time, but, at times, she is definitely aware. She tells people that she has a memory problem and she gets frustrated with herself when she can’t remember something. She is aware. Do you have any idea how much it sucks to see her struggle like that? Honestly, I don’t think anyone knows what it’s like unless they’ve been there. There are times when I think to myself, “I wish she just had cancer. I know that she’s going to die from Alzheimer’s and I just want to get it over with.” I realize that this probably sounds harsh to some people, but I’m not here to sugarcoat anything. This is how I actually feel. I’ve been watching my Mom die at an excruciatingly slow pace for the last five years. Since she is only 67-years-old, she could live for another five to ten years before she dies from this disease. And, she WILL die from this disease. She is young enough that her body is completely healthy. There is nothing wrong with her. She will die after Alzheimer’s has stripped her of every ounce and fiber of her being. She will die when Alzheimer’s has had enough of her and leaves her for dead. She will die a very long, slow, painful, and tragic death. How could I not wish that she had cancer or another disease that might kill her more quickly? I would much rather her have a short, sweet goodbye than a long, brutal one.
I don’t think there is anything in this world to prepare you for the death of a loved one. Whether it is expected or unexpected. Sudden or a long time coming. I think that if I know we’re going to be saying goodbye, I’d rather just get it over with. I hate saying goodbye. I hate the build-up to it and I hate the production of actually saying goodbye. Well, I’ve been saying goodbye to my Mom for five years now. And, she still doesn’t have her purse in hand, her coat on, and even one foot outside the door. This is truly the longest goodbye. Alzheimer’s is truly the longest goodbye. In many ways, I’ve already said goodbye to my Mom. I’ve said goodbye to many pieces of the mother who raised me. She is almost completely gone now. Gone, but still here. How do you grieve the loss of someone who is still standing right in front of you? There is no closure. There is no moving on. The mother who stands before me now is much more like a child than a mother. I must continue to care for and say goodbye to the physical being of my Mom. Many parts of her are gone and I’ve somewhat made my peace with that, but yet she still remains.
I’ve read that you grieve two losses when you lose someone to Alzheimer’s. You grieve the loss of the person you once knew and then you grieve the loss of their actual, physical body. Well, that’s pretty fucked up. Two losses equals two goodbyes. Two very long goodbyes. The longest goodbyes ever. I’ve already said goodbye to the Mom I once knew, but I still continue to say goodbye to the Mom standing before me. Neither of these goodbyes have been easy and I feel like I will never be done saying goodbye to either one of my Moms. I guess it is something that will come with time. If nothing good comes from saying the longest goodbye, at least I have learned a lot from it. I’ve learned to appreciate saying the longest goodbye at the end of our phone conversations because one day the longest goodbye will become the last goodbye.